CFS Patient Advocate

Myalgic Encephalomyelitis - an impact video

2011-12-29T18:31:00.001-08:00

It is important to be clear about this disease Myalgic Encephalomyelitis, ME. Clarity is something that has been sadly lacking over the years. This short video, under five minutes, brings certain things about ME into sharp focus. It is an "impact video". The first half has Dr. David Bell articulating, in his excellent manner, some of the main symptoms of this illness. The second half focuses on a severely ill ME patient, a young man of 19 years of age.

It is my belief that we, collectively, have to look more closely at the most severely ill ME patients. It is my belief that they harbor, in their severity, the keys to this illness. Most doctors do not see the most severely ill. Kenny De Meirleir, in his trips into Norwegian homes, treats the very ill. Paul Cheney and David Bell also have occasionally seen the severely ill. Perhaps others have - and hats off to them. But by and large, this patient population is isolated from everyone. The severely ill ME patients cannot get to a doctor's office. They languish in darkened rooms, cut off from reality, isolated and often abandoned, without medical care. It seems that no one cares a whit about them. It is these patients on whom we have to focus our attention, both for their sake and for ours. More effort has to be made to "get close to them", although this, in itself, is difficult, under even the best of circumstances.

I know of a number of these patients. I am interested in identifying more of them. Mostly they have the willingness to participate, through testing, in their own betterment - provided that the severity of their situation is taken into consideration. Many already have had testing for immune function, NK cell activity, cytokine disregulation, gut dysbiosis, brain scans and so forth. Consistent testing needs to be applied to these patients using existing parameters - if only to set the stage for future possibilities that will soon arise.

Peter Cairns, whose own sister is ill, has made this film. Peter has both the skill and the ability, born of experience and empathy, to approach these patients, to get close to them without disturbing them too much - for these patients live in a very fragile and vulnerable world.

Most people do not want to take a look in this direction. Most people turn away, including doctors. It is time to toughen up - and to consider these patients, and what they are going through, especially since they might hold the key. Testing of the half-sick (no disrespect here) has not brought clarity. We need to brace up, take a good look and then move in close. While it is difficult it is the only decent and humane thing to do.

This video interview of Dr. David Bell was made in August 2010 at the opening of the Whittemore Peterson Institute building on the Reno, NV campus. The video was a private project.

It occurs to me to add this fine, very moving testimony of Laurel from 2009.

CFSAC Testimony of Anonymous #3

2011-12-10T18:59:00.000-08:00

The testimonies of the recent CFSAC meeting are now online. They can be found here. Why these meeting cannot be streamed live and put immediately on the internet, I do not know. Much of a person's testimony is attached to his or her physical self, gestures and voice. To get the true feeling one needs to see the person presenting the testimony (when possible). It is so easy, it is done everywhere now. It is part of modern life.

The fact that these meetings were not streamed and made available immediately speaks to an "intention" - and that intention is "not good". The decision goes beyond stupidity and it is very worrisome - very worrisome. Things have meaning, actions have meaning.

The testimonies are worth reading in their entirety as they give a tremendous collective overview of ME/CFS.

If I were to pick one testimony that everyone interested in learning about ME should read, it is the testimony of Anonymous #3 - a person of a great courage. What this woman writes is like the very most precious gold. To mine more, read the CFSAC Spring testimony of Anonymous #3 here.

To the Members of the Chronic Fatigue Syndrome Advisory Committee:

Thank you for your service and for the recommendations you made at your meeting last May. In particular, I thank you for recommending that “chronic fatigue syndrome” be moved out of the wastebasket R codes of the United States’ next version of the International Classification of Diseases, the ICD- 10-CM.

In my testimony in May, I described my daily life as a severely ill ME patient. I got sick at age 20 and have been ill for more than 17 years; seven of them spent essentially bedbound. I’m sorry to report that I have lost more function since your May meeting. Now I often can’t lift a pillow from the floor to my bed, and I can no longer swing my laptop computer from my bedside table onto my bed. In order for me to lie on my back and type this testimony, one of my parents, who are my caregivers, had to lift and position my computer for each writing session.

Today I would like to tell you about my last doctor’s appointment--the only time I have been able to go downstairs, outside, and leave my home in the past year.

For severe ME patients, leaving one’s home is an extraordinary undertaking that requires weeks of preparation and months of recovery. A week before the appointment, my parents began to fill our van, which they have converted into an improvised ambulance, with items I would need for the trip. The day before the appointment, I struggled through my monthly bath in the tub and my mother washed my hair. Ordinarily, I bathe in my bed and change my nightgown twice a week, with help. Due to my extreme orthostatic intolerance, I can’t sit long enough to shower, even with the aid of a shower chair.

The morning of my appointment I put on street clothes for the first time in several months. This activity so exhausted me that I could not carry a lightweight purse. I tackled the stairs, which are next to my bedroom, by slowly walking down three steps on rubbery legs, then sitting and resting for a couple minutes, then wobbling down three more with support from the railing. From the foot of the stairs I was pushed in my wheelchair out to our porch, where my father had backed up our van to a loading platform he had constructed.

The bright colors of the outdoors dazzled me. After six months mainly spent lying on this mattress in my small bedroom with one window, I wanted to linger on the porch and take in the vast, arching sky, the touch of breeze against my skin, the hum of insects in the sunlit fir trees. But I had to lower my body onto the bed in the back of our van and rest with eyes closed, wearing earplugs to block the noise of traffic, so that I would have enough energy to get through my appointment.

At the hospital, I had to transfer five times. I heaved my leaden body from the van to my wheelchair, then to a bench in the waiting room where I lay motionless as 85-year-olds hurried past me, then back to my wheelchair, and finally to the table in the exam room.

All of this extra movement and sitting upright took so much of my energy that by the time I reached the paper-covered table, I could barely lift my arms. I lay there blinking at the harsh fluorescent light and wincing at the hospital noises: distant machines beeping, conversations, doors opening. I was glad my doctor was 20 minutes late, because the effort of changing from my street clothes into the hospital gown weakened me so much that it was a while before I could speak again.

And what was the result of my enormous effort in getting myself to the doctor? Essentially, nothing. My doctor renewed my prescriptions for thyroid medication and B12 shots, ordered a few routine blood tests--which came back normal--and did a cursory physical exam. Then she told me to come back in a year and walked out. She had no treatment whatsoever to offer for the sickness that has destroyed my life. Can you imagine HIV or MS patients getting minimal medical care only once a year?

At least she didn’t mock me like past doctors who have said such things as, “It must be nice to get so much attention” and “You’ll have a lot more opportunities in your life if you leave your home.” And in fairness, my doctor has been very good about completing paperwork related to my illness.

Back at home, my parents called a young woman from our local emergency squad and asked her to bring a special carry chair with handles so I could be carried up our stairs. While we waited for her, I lay on the futon in my mother’s office downstairs, a room I had not even seen for more than a year.

Many of my old college textbooks were on her shelves, and I stared at their spines, remembering my active life before I got sick. I took a full course- load, worked part-time, jogged daily, volunteered, and happily partied with my friends.

Now I can no longer read books. Now I spend up to ten hours per day resting with eyes closed, about six hours sleeping, and only short periods here and there listening to audiobooks or checking my email.

It took three people to carry me up the stairs in the chair, though my weight is normal. A few times, as they strained and sweated, I thought we would all go tumbling down the stairs. I clung to the banister, remembering how I used to run up and down those stairs all day as a teenager. Even when my ME was more moderate, I could walk up and down them whenever I wanted to.

Finally, I was back in my room, so depleted I could barely turn my head. And here I have remained for the past six months. A few times a day I walk to the bathroom, but mainly I just lie here, listening to the whoosh of my air cleaner. On my computer I see photos of my old friends, who have gone on to careers, marriage, children and beautiful homes. Outside my window, another year goes by.

Members of CFSAC, my doctor can do nothing for me, but you can. You can influence the Secretary of Health and Human Services, and in turn, the government and public at large. I ask you to please pass strong recommendations on the following issues:

1. Promote the study and awareness of severely ill ME patients--those who score below 10 on the Bell Disability Scale.

A. Count them. No one knows how many American ME patients function at my level or below because no one--including the CDC and the CFIDS Association of America--has ever studied us. The CAA, which promotes psychotherapy and exercise as treatments, has chastised severely ill patients for supposed “kinesiophobia” (fear of movement) and advocates mainly for people with mild fatigue or “unwellness.”

B. Study them. Encourage several research studies composed entirely of severe patients, those who function below 10 on the Bell Disability Scale or who require a nursing home level of care, like me. I’m not a scientist, but it’s logical that the underlying pathology(-ies) of ME should be more pronounced in severe patients and therefore easier to detect

in their bodies. Testing severe patients will have “trickle up” benefits for mild and moderate patients.

C. Include them. Severe patients should comprise half the cohort of all research studies to avoid skewing results toward mild patients. In order to include the severely ill, researchers will have to make accommodations such as sending phlebotomists into patients’ homes. I was able to participate in a Whittemore Peterson Institute study, in which I tested positive for HGRVs, because the WPI--under the leadership of Dr. Judy Mikovits--hired a phlebotomist to come into my bedroom and draw my blood. We may not be able to undergo invasive procedures such as spinal taps in our homes, but there’s no reason why we can’t provide blood, stool, saliva and urine samples to researchers. Stop excluding from your studies the very people whose bodies are most likely to yield answers for all ME patients!

D. Publicize them. Making severe patients the public face of ME is an efficient way to get medical professionals, lay people, and government agencies to take this disease seriously. Rather than being seen as an asterisk, afterthought, or anomaly, severe patients should be the focus of newspaper articles, advocacy materials, and the CDC website. As long as high-energy patients--those who can care for themselves and their families and even hold jobs--are seen as typical, the government will continue to starve ME research of funds. This is a disabling disease, and the severely afflicted are the most capable of showing that!

E. Make teachers of them. Medical school students should be required to make house calls to severe ME patients. Most doctors and researchers have no idea how disabling ME can be because virtually all the patients they see have mild/moderate ME. Why? Because severe patients have extreme difficulty traveling to doctors, or can’t travel at all. Even many ME experts have never met a severe patient in person. After seeing us up close, perhaps future doctors won’t dismiss us with “I’m tired too.”

F. Form a CFSAC task force devoted to severe patients. The Secretary of Health and Human Services has repeatedly ignored your resolutions, but there’s no reason why the CFSAC itself can’t create a committee to actualize the above recommendations for these most overlooked and underserved of patients.

2. Ask for a vast increase in funding. As I wrote in May, if our government believes in equal rights for equal disabilities, it must increase funding for ME research by twenty-fold. Even a private endeavor, the poorly named Chronic Fatigue Initiative, is spending $10 million on research--twice what our government outlays for ME or CFS each year. Ask Secretary Sebelius how she can justify spending on Multiple Sclerosis 100 times, per capita, what she spends on ME or CFS, when I am more disabled than anyone I know with MS. Why has our government left us to decompose in our beds?

3. Adopt and promote the new International Consensus Criteria (ICC) for ME, which were published recently in the Journal of Internal Medicine by a panel of 26 respected clinicians and scientists from 13 countries. Researchers must closely adhere to these strict guidelines to create homogeneous cohorts. Note that to receive an ME diagnosis defined by the ICC, a person must function below 50% of normal activity. While this requirement may be too restrictive for diagnosis, it should be observed for research. Doing so will keep the focus on more disabled patients and facilitate the search for biomarkers and treatments.

4. The term “chronic fatigue syndrome” should be phased out. In particular, research using the Empirical Definition--which was co-authored by Bill Reeves, Beth Unger and Suzanne Vernon--should not receive government funding. Research based on this definition is virtually meaningless because it does not correspond to any disease entity but to a hodgepodge of psychiatric conditions, simple tiredness and unwellness. Any research on “chronic fatigue syndrome” must be based on the Canadian Consensus Criteria, which, like the ICC, defines a distinct neuro-immune disease and requires patients to function below 50% of normal activity.

Patients who don’t fulfill the ICC or CCC should not be admitted to studies of either ME or CFS because they confound research results.

Thank you for reading my testimony, which took me five weeks to write because I can concentrate for only short periods.

Congratulations to Dr. Nancy Klimas

2011-12-09T08:48:00.001-08:00

In his fine article today, Cort Johnson brings us another piece of very good news. Dr. Nancy Klimas has been recruited away from the University of Miami, where she has been on the faculty for 27 years. She has been hired to direct a new Neuroimmune Treatment and Research Center at Nova Southeastern University in South Florida. This is an amazing and wonderful bit of news.

A hire of this sort means that the hiring institution has carefully planned it out, and has committed the funds (new hires, research dollars, space) to make this happen. They see something in Dr. Klimas - and they are willing to pay for it - and she sees something in them. This is a really great deal for Dr. Klimas - and the directorship has the further advantage that she does not have to leave her "roots". Dr. Klimas remains in South Florida.

As Dr. Klimas says, this is a chance of a lifetime. Dr. Klimas gets to set up and run her own ME/CFS Research and Treatment Center. She certainly has the connections and qualifications to do this. Congratulations to Dr. Nancy Klimas.

One wonders how many of her team Dr. Klimas will be able to take with her, and who will join her new center as researchers or clinicians? The details will emerge in time, but for the moment we can reassure ourselves that all former cooperative research - with Dr Gordon Broderick and Dr. Mary Ann Fletcher - will continue and, most likely, expand.

This is the third American University or University Hospital "Center for ME/CFS" to have been announced or formed in the last six months. This is unheard of in the world of ME/CFS. To this can be added the alliance of Dr. Daniel Peterson's Simmaron Research with Bond University in Australia. All of these "elevated" situations come as somewhat of a surprise in the wake of other difficulties occurring in the research world of ME/CFS.

As Cort points out, Dr. Nancy Klimas is known for her research collaborations. It is a great asset of Dr. Klimas' - and it is not a characteristic of every researcher. She is special in this regard.

No one person is going to solve this illness. It is going to take many fine minds working together - at various labs and clinical settings. This fusion of assets is going to need some hard work to hammer into shape, but the time to accelerate is now. The real hope is that these new research and treatment centers can expand their collaboration - and build a cohesive network. Let us hope that they have the sense to do this. What is happening at various universities - Harvard, Columbia, Nova Southwest University, Mt. Sinai Hospital, University of Nevada, Cornell, Duke, Stanford, Bond University - is extraordinary. Somehow they are going to have to be encouraged to work together.

Mt. Sinai ME/CFS conference - Dr. Enlander lecture

2011-12-07T22:12:00.000-08:00

Dr. Derek Enlander, who practices medicine in NYC, was instrumental in arranging a one-day ME/CFS conference at Mt. Sinai Hospital on Sunday, November 20, 2011. Dr. Enlander is well known in the ME/CFS community for his devoted work with patients with this illness. Dr. Enlander has provided support and care for thousands of patients in NYC and indeed worldwide. He travels regularly to Ireland and England and attends most ME/CFS conferences, playing a very important role down in the "trenches".

With a recent generous gift to Mt. Sinai Hospital by one of Dr. Enlander's patients, Dwight Merriman, Dr. Enlander wasted no time in getting this research and treatment center at Mt. Sinai underway. In the process he has enlisted three top researchers, two of them previously unknown to ME/CFS research. These researchers are Dr. Eric Schadt, Dr. Miriam Merad, and Dr. Ila Singh. On the clinical side, two well-known ME/CFS researcher/clinicians will be collaborating with Dr. Enlander at Mt. Sinai - Dr Kenny De Meirleir and Dr. David Bell. They will be undertaking various treatment paths, some of which are outlined in Dr. Enlander's lecture. See also Dr. Kenny De Meirleir's lecture on the latest with GcMAF.

Dr. Enlander, ever the gentleman, gave the last lecture of the day on that Sunday. In many ways his lecture functioned as a summation of the day's presentations and pulled various threads together.

Collectively these six lectures at this conference gave those in attendance great hope for the future of ME/CFS research at Mt. Sinai Hospital. The Mt. Sinai ME/CFS Center gives every indication of wanting to work collaboratively to get at this disease. This entire enterprise is exciting news indeed and we have Dr. Derek Enlander and his fine colleagues to thank for it. Let us hope that this small scale, hard-hitting conference idea becomes a regular practice.

The audio and videos of these lectures were done by Peter Cairns and Nicholas Cairns.

Dr. Terry Wahls

2011-12-07T09:07:00.000-08:00

I have known about Dr. Terry Wahls and her amazing story for a number of years. Two years ago, I wrote a blog post about her here. In this lecture, in her life, Dr. Wahls presents a "possibility" - she presents something specific that we can do. These ideas are not necessarily new, which is another strength to her proposition. Some things need repeating, and Dr. Wahls does an excellent job.

Many of the posts that I write covering research and treatments for ME/CFS are "abstractions". They are either in the future, just outside of our reach, or perhaps do not meet our requirements. Dr. Wahls presents something different, something on which we can get our grasp. These nutritional ideas are firmly rooted in scientific inquiry.

It is painfully obvious that ME/CFS involves some level of mitochondrial dysfunction. There is no question that mitochondria can be influenced by various factors.

Dr. Terry Wahls does an excellent job in advancing her ideas, born out of her own experience, in the following video.

Two items - Sunday December 4

2011-12-04T18:11:00.000-08:00

A couple of items floated into my field of vision today. The first was an article from the Weekend edition of the Wall Street Journal. It is entitled "Citizen Scientists" with the subtitle - "Ordinary people taking control of their health data, making their DNA public and running their own experiments. Their big question: Why should science be left to the professionals?".

Somehow this sounded familiar.

The article can be found here. It was written by Amy Dockser Marcus. As I was reading it I was reminded of our own Citizen Researcher - Rich van Konynenburg.

Later an anonymous commenter (actually I see now that is was Cristina Montane. Thanks for that.) suggested looking at the youtube film "The New Biology". This video was made by Pacific Biosciences, where Dr. Eric Schadt is Chief Scientific Officer. Dr. Schadt holds a simultaneous position at Mt. Sinai Hospital in NYC as the Director of Genomics and Multiscale Biology. Incidentally, Dr. Schadt is the co-creative director and co-executive producer of this film. He seems to want to get the word out about this systems biology approach. Dr. Schadt is a man in a hurry. Check it out. This film includes many other fascinating voices.

Mt. Sinai ME/CFS conference - Dr Eric Schadt lecture

2011-11-25T07:35:00.000-08:00

Dr. Eric Schadt gave the first lecture at the Mt. Sinai ME/CFS Center conference on Sunday November 20, 2011. This conference was organized by Dr. Derek Enlander and his colleagues at Mt. Sinai Hospital in NYC.

Dr. Schadt was recently hired by Mt. Sinai Hospital to head their Department of Genetics and Multiscale program. Here is an article in the NY Times about Dr. Schadt at the time of this hire. This article and others describe Dr. Schadt's visionary ideas. The lecture delineates how he will approach ME/CFS in his lab. There is a profile of Dr. Schadt in Esquire here. Dr Schadt will work with his colleagues Dr. Ila Singh, a virologist, and Dr. Miriam Merad, an immunologist, to get at this horrible illness of ME/CFS. The Mt. Sinai ME/CFS Center for research and treatment was initiated by a generous gift from a patient of Dr. Enlander.

Information will be forthcoming on how the ME/CFS community can support the work at Mt. Sinai.

This audio and video was made by Peter and Nicholas Cairns.

Mt. Sinai ME/CFS conference - De Meirleir lecture

2011-11-23T16:49:00.000-08:00

Six presentations were given at the Mt. Sinai ME/CFS Research and Treatment Center conference on Sunday November 20, 2011. Here is a lecture delivered by Dr. Kenny De Meirleir, who practices medicine in Brussels. Dr. De Meirleir has worked with ME/CFS patients for many years and is seen as one of the foremost ME/CFS Clinician/Researchers. Dr. De Meirleir spoke for a half-hour on the compassionate use of GcMAF in this patient population. Dr. De Meirleir will be associated with this new ME/CFS Center at Mt. Sinai- as a clinical consultant.

The video and audio was made by Peter and Nicholas Cairns.

Mt. Sinai ME/CFS conference report - Sunday November 20, 2011

2011-11-21T11:49:00.000-08:00

It was with an air of anticipation that I walked up 5th Avenue early on a fine Sunday morning, heading to the ME/CFS conference at Mt. Sinai Hospital. All my hopes and anticipations were realized - and were exceeded, very much exceeded. It was a remarkable day and we have Dr. Derek Enlander and his colleagues at Mt. Sinai to thank for this.

The conference began at 11 in the morning and ran until 4:30. Dr. Enlander set the agenda and guided the series of lectures in his own respectful and low-key fashion. Like Dr. Malcolm Hooper, Dr. Enlander employs understatement, refusing to draw disproportionate attention to himself. Yet, Dr. Enlander has a manner of presentation that allows his steady, confident personality to be felt. As usual Dr. Enlander is “all there, all the time”, as has been his habit for a long time. Talk to any of his patients and you will get this same appreciation and respect. I was tremendously impressed with how he ran this conference. All speakers kept to the schedule and the conference ran like clockwork.

This was surprising to me - as the conference had only been organized in the last three weeks. From the modest beginnings of a “collaborative meeting” between Dr. David Bell and Dr. Derek Enlander, this situation quickly and seemingly naturally morphed into a full day conference, first with the addition of Dr. Kenny De Meirleir and later Dr. Eric Schadt and Dr Miriam Merad. Additional speakers were Rich van Konynenburg, an independent researcher, and Dr. Strayer from Hemispherix. Dr. David Bell was unable to attend the conference due to illness, but he is solidly on board with this effort – and we will see him at the next conference. Dr. John Chia was invited to the conference but was unable to attend. Look for him in the future.

This event followed the format of the InvestinME conference in the UK, one day filled with hard-hitting research and treatment presentations. If anything, this day was even more deeply focused - which is really saying something. I am a great admirer of Richard and Pia Simpson, and what they give us with the annual InvestinME conference in London.

In the first lecture, Dr. Eric Schadt gave an overview of his systems biology approach to research. This will be applied to ME/CFS in order to get at the underlying pathology. Dr Schadt, a geneticist, is quite astonishing in his approach and presentation. Dr. Schadt brings a great deal to the table. He is seen as the very cutting edge of figuring out complex relationships. Part of Dr. Schadt's work will be to continue and expand the research of Jonathan Kerr. Here is an article in Esquire about Dr. Schadt.

Dr. Merad, an immunologist at Mt. Sinai, spoke of her work in innate immunity and its relations to ME/CFS. Here is a biography of Dr. Merad.

Both of these researchers are new to the ME/CFS world and are part of the research team being assembled at Mt. Sinai. Ila Singh, a virologist, has also recently joined the Mt. Sinai research team. Many of us are familiar with Dr. Singh and her work in XMRV. Dr. Singh was unable to make a presentation as she was moving from Utah. She will certainly be present at the next conference.

The Mt. Sinai research team includes a geneticist, an immunologist and a virologist, all three working closely together on this project. The amazing thing is that here are three researchers at the same research hospital, all pledged to work together in a collaborative fashion towards cracking this illness. This is unheard of in the world of ME/CFS. This indicates a seismic shift. While Dr. Schadt and Dr. Merad gave indications that they do not know much about ME/CFS, they emphasized that its complexity is not that much different from other situations on which they have worked. Their response to the patients was indeed sympathetic and the two researchers must have learned a great deal about the nature of the illness and the difficulties that afflict these patients.

During the wrap-up panel discussion, Hillary Johnson asked a few pointed questions that, as usual for her, were extremely illuminating. Hillary cuts to the quick - and a sense and weight of history attends her every word. Hillary stands like a rock for the long abused patients with this illness. She is a wonder to me. Her question was : Weren't these researchers afraid to go down this road of ME/CFS research? - a road fraught with peril and the remains of many previous researchers? The Mt. Sinai researchers seemed genuinely unfazed by this. Their answer was no, no they were not hesitant. Instead, they were eager.

Hillary also insistently sounded out the depth of their commitment (in terms of hours and staff). This is a very tough question to ask anyone, essentially asking are you for real or are you a bunch of phonies? In other words, was this a sidelight for them? Both the Mt. Sinai researchers expressed in very clear terms that this was going to be a serious effort with various researchers in their labs working steadily on the project. Obviously this is a reflection of the money committed to do this work. Dr. Schadt said he had just hired twelve new people for his lab and that some of them would be working full-time on ME/CFS. It was amazing to hear this, just amazing.

Mt. Sinai has placed a bet here - and I believe that it is a winning bet.

Dr. De Meirleir flew in from Brussels for the day and gave an excellent presentation on his compassionate use of GcMAF in ME/CFS. His preliminary data, reported elsewhere, indicated that 68 of 108 patients showed improvement in at least two of the seven major categories of ME/CFS. More data will be forthcoming soon, with larger numbers of patients.

Dr. Strayer of Hemispherix spoke about past and ongoing trials of Ampligen. Dr Enlander is running an Ampligen trial in NY, joining those in Utah, NV and NC.

Rich van Konynenburg gave a fine and compressed version of his glutathione depletion and methylation blockage concept, as applied to ME/CFS. One can see an extended version of his lecture in my previous blog post. Rich can talk in a very convincing way “until the cows come home” and he was there at the end talking to patients and professionals until the lights were turned out. What a fine addition Rich was to this conference!

Dr. Enlander himself gave the final lecture, presenting information on his treatment protocol and the various options available at present - and future considerations.

The seminar room was at capacity - about eighty people, with the overflow sitting on the floor. There was a sense of anticipation and excitement amongst the attendees. This Mt. Sinai conference presented no bullshit, no fluff -just straightforward research and treatment possibilities. One can imagine an expansion with a clinician/researcher brain-storming session the evening before, combined with a dinner. One can clearly see where this is going now.

This conference happened at the right time and involved the right people.

It was a bit surprising that Fred Friedberg, the head of the IACFSME association took a "pass" on this conference. He lives 45 minutes away and saw fit to “not show up”. Others from the CAA were noticeably missing. Lipkin could have walked over, but decided not to. While they were not particularly "missed", I think at the next conference, perhaps in six months, we will save a seat for them to watch a video in an adjoining room. For the CAA itself we will reserve a place on the floor in the back. The next conference is going to have to be in a larger auditorium - and it will also be packed.

It is important to emphasize that this Mt. Sinai Center has no connection, as yet, to the CFI - directed by Ian Lipkin at Columbia. This CFI effort on the part of the Hutchins family, involving Harvard, Princeton, Yale and Duke, holds out the possibility of further serious and deep research into this illness. We can only hope for CFI success, and that they have the inclination to cooperate with their colleagues at Mt. Sinai. The two initiatives have a great deal to share - and it is time to set aside egos.

The organizers of this Mt. Sinai conference indicated that the doors are open – that they are “open to suggestion” in terms of alliances and collaborations. It was noticeable that Dr. Maureen Hanson and Dr. Susan Levine were in the audience, both of whom I imagine would be interested in cooperating in this Mt. Sinai effort. Who wouldn’t? This was a very exciting day.

The conference was videotaped and audio recorded by Peter and Nicholas Cairns. The various lectures will be put online and on DVD - and perhaps in the future some short preview interviews can be filmed of the major figures in this Mt. Sinai effort. I am a great believer in getting key pieces of information out to the larger world, and short “impact videos” are one economical and efficient way to do this. This also works well for fund-raising.

I leave to the end of this post a very important acknowledgement. This Mt. Sinai ME/CFS Center is fueled by a generous gift of Dwight Merriman. None of this would be happening without this gift. It is a matching gift, and soon we will be given instruction how we can contribute to this effort that is going to have such a long reach.

At the very end of the conference, there was a profound moment where Dr. Enlander, in response to a question, extemporaneously spoke for about two minutes on the extreme severity of this illness and its ruinous effects on patients. It is clear that this physician has a deep empathy for the subject.

Mt. Sinai conference - Rich van Konynenburg

2011-11-17T13:47:00.001-08:00

The upcoming conference at Mt. Sinai (on Sunday November 20, 2011) is a step in the right direction. This conference, the first of the new Mt. Sinai ME/CFS treatment and research center, embraces the serious exchange of treatment and research ideas in ME/CFS. There are some new names here, and we look forward to hearing from them. There are also some more familiar figures. The interaction should be illuminating.

The conference will start at 11 and will feature five half-hour presentations by Dr. Derek Enlander, Dr. Kenny De Meirleir, Dr. Eric Schadt, Rich van Konenynburg and Dr. Merriam Merron. After a lunch break there will be a panel discussion with the participants. (Judy Mikovits was scheduled to join the panel discussion, but will be "unable to make it" as she was arrested on Friday, November 18th in her hometown in CA on a fugitive from justice charge.)

I was pleased to see the name of Rich van Konynenburg among the speakers. Rich is an "independent operator" in the ME/CFS world - and one of the best. Over the years, he has developed a very convincing biochemical explanation for the part that methylation blockage and glutathione depletion play in ME/CFS. Rich has existed on the periphery for too long. He needs to be brought into the discussion. Rich is a welcome addition to this list of speakers, and perhaps this exposure will get some traction for his ideas.

I have followed closely the work of Rich for a good number of years now. Rich has presented poster papers at each of the major ME/CFS conferences (and at various other conferences). Once in a blue moon, he is actually invited to speak, and to present his thesis on the connection of the methylation blockage and glutathione depletion in ME/CFS. His ideas are firmly based in biochemistry and very well might play an important part in understanding and penetrating this illness. Certainly Dr. Enlander believes in the reality of methylation blockage, and his formula for treatment involves elements either borrowed from Rich's theory or coincident with it. Other clinicians also are paying more attention.

Rich's presence at the recent IACFS/ME conference was very noticeable, as he seems willing and able to talk individually with people without prejudice. He is on his feet all day of the poster conferences, presenting in a nutshell his complex set of ideas. Why he has never been given a time slot to directly address a conference session I will never know. His ideas need further exposure.

Here is a article by Rich van Konynenburg on Phoenix Rising. A revision of the original simplified protocol and a discussion can be found here. Discussions of the methylation protocol can also be found on various ME/CFS forums.

The first time I observed Rich van Konynenburg in action was at the 2007 IACFS/ME in Ft. Lauderdale. At that point, attendees to the conference could come to an open microphone and ask questions directly to the panels. In general the panel members "froze up" with the clarity and persistence of Rich's (and others) questioning. It was obvious that the "ability" of the panel members to engage unfamiliar territory was limited. Rather than trying to come to terms with what Rich was suggesting, they changed the format at the next conference to written questions - and in this way the organizers could control (and eliminate) the questions that were more penetrating or "difficult". This "technique" is used more and more today by important people who are averse to things "entering in". My response has always been, "Let's hear more from this fellow".

Recently, Rich gave a three-hour long lecture at a conference in Sweden. It is available online in three sections and they can be accessed in the following videos. I recommend viewing it in parts, as it is well worth watching.

Treatment for this complex, yet measurable, dysfunction is relatively simple, and can be found in various places on the internet. Rich himself engages on various forums, discussing with patients and advocates the specifics of his ideas, disassociating himself from giving medical advice.

It becomes obvious that his interest in ME/CFS is a labor of love. Certainly he cannot be accused of making money off of his idea, as he is always "on his own dime". Instead we find that his motivation to "get involved" is similar to many others in this field. He has a friend who has the illness.

Rich also is free of the usual entanglements - as he is neither an academic researcher nor an ME/CFS clinician. Instead his background is in electrical engineering. In his retirement, he has turned his fine mind onto the problem of solving or getting to the source of ME/CFS. Actually, like other important contributors to the mechanisms of ME/CFS (Dr. John Chia comes to mind here with his revisiting of older UK research of enteroviral involvement in ME/CFS), these ideas on glutathione depletion are not new, but borrowed from practitioners in autism. Rich had the insight to see the connection. We will all benefit from his insights.

Mt Sinai ME/CFS Center - November 20, 2011 conference

2011-11-07T15:29:00.000-08:00

A surprising amount of research and treatment into ME/CFS has been generated in the wake of the efforts of the WPI over the last few years. This is especially true of the last few months. Annette Whittemore and Judy Mikovits lit the spark and elevated ME/CFS to a level where it now gets fair consideration.

One of the most exciting pieces of recent news is the opening of an ME/CFS Center at Mount Sinai Hospital in NYC. This center is currently funded by a generous gift from a patient - with the possibility of matching gifts to come. The center is about to open - and the first conference is going to happen in two weeks - on November 2oth.

Mount Sinai is one of the major hospitals in NYC, and it is tremendous news that this center is opening - focusing on this difficult and debilitating illness. This is a dream come true. The last major CFS treatment and research center at an American university was run by Dr. Phillip K. Peterson at Hennepin County Hospital in Minneapolis in the 1990's. It closed, for unknown reasons, in 2000.

The main clinician at the Mount Sinai ME/CFS Center will be Dr. Derek Enlander. Dr. Enlander is a familiar name to all of us, and he is considered to be one of the very top clinicians making inroads into this disease. Dr. Enlander has treated patients with ME/CFS in the NY area since the mid- eighties, and he has always kept an open mind towards treatment modalities. While his clinical experience with ME/CFS is very deep and broad, Dr. Enlander also has a wider medical practice - and has taught at Mt. Sinai for many years. He is the perfect individual to coordinate a larger effort to get at this illness.

Additional senior faculty will be Dr. Ila Singh, who has recently been recruited by Mt. Sinai from Utah, and Dr. Eric Schadt, PhD. Here is an article on Dr. Schadt.

The clinical practice will employ various treatments currently being used by Dr.Enlander, including GcMAF, Ampligen, Hepapressin, and Immunoprop.

Some of the research will delve into genomics, and one current study is underway - and recruiting patients. You will remember that Dr. Enlander was quite close to Dr. Jonathan Kerr and Kerr's work in the UK. Dr. Schadt is well qualified to continue and expand this work. Most of us are familiar with Dr. Ila Singh, and welcome her back to NY.

Treatment research will involve methylation cycle defect, viral effects and correlations, immunology, immune system defects (Ampligen, GcMAF, MAF 314, Nexavir, Hepapressin), and mRNA before and after Post Exertional Malaise.

This enterprise is privately funded and has no connection to the recently announced CFI. We look forward to Dr. Enlander's participation on a larger stage. This is certainly a bit of good news.

And now today comes the announcement of the first conference at the Mount Sinai ME/CFS Research and Treatment Center. This will occur on Sunday November 2oth. Registration will be at 10:30 in the morning with the conference starting at 11. The conference, entitled "New Methods of Diagnoses and Treatment," will feature Dr. Derek Enlander, Dr. Kenny De Meirleir, Dr. David Bell, and Dr. Eric Schadt. Subjects will include treatment summary of GcMAF, MAF 314, Retuximab, CMX 001, Ampligen and Nexavir. This is just the kind of consolidation of clinical experience and allied research that is needed at this exciting time.

Registration $30 in advance, $40 at the door. The conference will be held in the Seminar Room, first floor, Icahn Institute, Mount Sinai Research Building, 1425 Madison Avenue (at 98th st), NYC.

Rituximab and the Press

2011-10-24T21:16:00.000-07:00

Recent events have reminded me of Dr. Marcus Conant's admonition "Do not trust the press. They are not your friends". According to Dr. Conant, a veteran (and great, selfless hero) of the wars on AIDS, the press has their own agenda - and they do not have our interests in mind.

At this moment we have to ask ourselves a question. Why has there been so little mainstream news coverage of the Norwegian rituximab study and ME? In the last few days, the Norwegian rituximab study with ME is seeping very slowly into the mainstream. But it is small potatoes compared to the flood of crap vomited worldwide in the supposed demise of a retroviral involvement in ME. (Incidentally this retroviral story is not over. Dr Mikovits and others will resurface and continue their research into HGRVs. And it is worth remembering that Dr. Mikovits was early on in Norway trying to find out about these cancer scientists and Rituximab. Dr. Mikovits has always been open to suggestion.)

It is one thing for the press to ignore a story. It is quite another to frame out a story incorrectly - especially if it masquerades in the same phony guise that ME has been characterized for the last 25 years. This becomes tiresome - and disingenuous. These hapless press stories of the past two years lead nowhere. They can just be heaped up with all the other ME dodges of the past.

It is not true that any press is better than no press. A truthful story line is important. I wrote a post on this subject some months ago called The Story Line.

In the last year, four mainstream journalists - Amy Marcus, David Tuller, Trine Tsouderos, and Michelle Fay Cortez - have decided to get involved with the retroviral association to ME story - each for "their own reasons". All of them have developed the sometime habit of writing about ME. Each goes in a different direction, each with no cohesion of story. Why is this so, Marvin Macy? For the rest of us the reason for these disconnects is especially unclear right now. The neglect in covering the Rituximab study with ME calls into question all these journalists' previous motivations. It makes us suspect. What was their agenda? What were they really interested in?

In the last few years something quite different (than what is depicted in the press) has been going on in the research and treatment world of ME. In the last few months, amidst the worldwide , hyperbolic "take out" of retroviral research into ME, various other researchers have been plugging along - and expanding their interests. These include Dr. Jose Montoya at Stanford (in collaboration with Dr. Ian Lipkin at Columbia), the newly announced Chronic Fatigue Initiative at Harvard, Columbia (again Lipkin) and Duke, financed by the Hutchins Foundation, the impending opening of a treatment and research center at Mount Sinai in NY with Dr. Derek Enlander as one of the clinicians, the Simmaron research group of Dr. Daniel Peterson and associates in alliance with Bond University in Australia - to name just a few. To this, we might mention the ongoing research of Dr. John Chia into enteroviral involvement in ME, the disciplined, longstanding work of Dr. Nancy Klimas in Miami, the Lights in Utah, Dr. A. Martin Lerner in MI, and Dr. Kenny de Meirleir in Belgium. And we do not want to forget the WPI, which will reconstitute itself and make important additional contributions. This list goes on, and apologies to those left off. It is an exciting time. A great consolidation is taking place. Does anyone get the idea that the press is trying to tell this story - to explain or sell this consolidation? In no instance are they "on this story".

And now comes the Rituximab study - seemingly from out of the blue. This is a major story in ME, perhaps the major story. The picture is best expressed by Dr. David Bell in this short youtube clip. Meanwhile, where are our "friends" in the press? Are we to accept and believe the lame excuse that mainstream journals do not cover small phase II trials? Are you kidding me? I would surmise that Dr. Bell would trade in all the "human interest" stories on ME for one decent accounting of the current research into this illness - especially regarding this Rituximab study.

Over the years there has been so little consolidated research in ME. One of the big hopes is that something will "slop over" from another drug study in another disease. This appears to be what has happened here - pure serendipity (combined with the observations of two very insightful cancer researchers). Perhaps we can expect more of this in the future? Let us hope so. In the meantime, this Fluge/Mella study, and many other items, convince us that certain scientists have fantastic minds for making unexpected connections.

We can all make up our excuses why this trial means nothing - it is "too early", it is "too small", the researchers are Norwegians, the drug is really dangerous, we don't know the mechanism, it is better to wait for more trials, how could ME be an autoimmune disease - the list of negative thinking goes on and on. It is worth mentioning again, at this point, Dr. Bell's startling statement: "I have not seen results like this in any medical study in the twenty-five years I have been in the field. These are extraordinary results".

Meanwhile Fluge and Mella move on to larger and more specific trials. A new trial will test Rituximab on four of the most severely ill ME patients. (If you need to be educated on this patient group, watch the powerful film "Voices from the Shadows".) These two Norwegian researchers have been backed by the Kavli foundation to find a blood test marker for ME. We can expect this research to continue and grow, most likely extending into Sweden. Several clinicians in the United States have their eye on trials with Rituximab.

The story of ME, in all its sordid reality, lies there at our feet, ready to be told. Who will tell it? What journalist has the courage to tell it? There is no longer any uncertainty. ME is a nasty and dangerous disease. The patients with ME and their caregivers have been abused for years. This study tells us that this serious disease may need a serious drug. ME is most likely viral in origin involving various immune abnormalities. It is very possibly communicable. This Rituximab study opens additional doors to research. The urgency is now. Too many patients have already gone down the tubes with astonishing neglect.

Even "the end of the story" is provided now (for journalists). They no longer have to speculate and fall back on their threadbare notions. Consider the amazing admission of the Norwegian Directorate of Health in the wake of the published study on Rituximab.

"I think that we have not cared for people with ME to a great enough extent. I think it is correct to say that we have not established proper health care services for these people, and I regret that."

"Such a public apology from a governmental health agency has never occurred before."

How long do we, in the United States, have to wait for our story to be told, for our apology?

Rituximab

2011-10-19T19:07:00.001-07:00

The long-awaited Norwegian study on Rituximab and ME was finally published today. This story is here. This is a very big deal. It will be interesting if this is picked up by the mainstream media, and this reality will be a key to determining if ME has reached a higher level in the the consciousness of "Important People". Where are Amy Dockser Marcus and David Tuller when we need them, when there is a real thread or story to be followed? I mean it is not like they didn't know this was coming?

Many who had seen the presentation by the two Norwegian cancer researchers, Drs. Fluge and Mella, at the InvestinME conference in May in London, or had seen the subsequent DVD lecture, knew what was coming - and awaited the official publication with excitement. This is going to open up an entire potential new branch of investigation of ME as an autoimmune illness characterized by immune disregulations. This association, which needs further study, potentially puts ME a step closer to an acquired immune deficiency. Another door has been opened into research and treatment - but many new questions can now be asked.

These two Norwegian cancer researchers stumbled upon the association of Rituximab and ME by serendipity. However they immediately realized they had struck upon something interesting, and aggressively pursued a double-blind, placebo-controlled trial with thirty patients. While the trial was small, the results were impressive.

A larger trial is underway, and we can be assured that these two researchers will continue to pursue and investigate this treatment - even though it is a side-light to their main cancer work. Both these researchers give the impression of being extremely serious in their studies - and they make no false claims. They are both cautious and optimistic.

Other clinician/researchers will also pick up on this study and build on it. Further studies investigating treatment protocols, involving dosage and timing, with Rituximab or with upcoming drugs in this class will now also occur. A ball has started rolling here. Clinician/researchers in the United States and perhaps elsewhere will explore the use of Rituximab off-label in ME. Kogelnick in CA is rumored to be doing a trial with Rituximab. Peterson is known to have interest in this drug. One can imagine the WPI or the new Mount Sinai ME/CFS research and treatment center giving Rituximab a try.

The most interesting thing about Rituximab is that it is an existing drug that is heavily used world-wide. Rituximab is not without side effects, but future drugs in the same class promise to be more tolerable and safe.

Cort Johnson has written an excellent essay of Rituximab in December 2010 and I refer you to that here.

IACFSME Conference - Ottawa

2011-10-06T10:31:00.000-07:00

I imagine that the organizers of the recent IACFSME meeting in Ottawa were surprised when they stepped out of their cabs on Wednesday, September 21st, and found the conference site, the Delta Hotel, was "under construction". For weeks the hotel website indicated that this was in the process of happening. This reality made for a shoddy start for what was billed as "an important conference". The flighty title of the conference was "Translating Evidence into Practice".

At first blush it was difficult not to see this "construction thing" as a symbol - a symbol of the current state surrounding this illness, and particularly of this conference and its organizers. This was not a good start. The hotel employees were quite cheerful about it all, happy I suppose to have this group show up. Somebody has to keep the hotel going, and it might as well be unwitting IACFSME conference attendees.

The consequence of this renovation was that fully one third of the ground floor and first floor of the hotel was unavailable for the conference. Most people are aware that 83.3% of meaningful interaction at conferences takes place in "informal settings". Researchers and clinicians find places in the lobby to meet and exchange ideas - and at all times of the day. Insomniacs stumble through the lobby and have fascinating conversations with strangers from half-way around the world. This is what hotel lobbies are designed for - the random meetings of people under relaxed circumstances. This is where shit happens. In this case, this part of the conference was canceled, and, not surprisingly, it had a negative effect on the atmosphere. There was no place to sit down - except for a ground floor bar. Outside of the conference room itself there was no place to sit and watch people come and go. Upstairs there was a room for patients to rest - but otherwise patients also had no place to sit, rest and enjoy the atmosphere.

The interior itself was very claustrophobic with the hallway spaces constricted with newly installed sheetrock and plastic drapes. The entire front part of building smelled of mold, dust and debris. Various fans were set up in the hallways to "circulate" air or to "filter" air, but from what or to what? None of the fans were vented outside, either for intake or outtake. It was difficult to determine what these fans were actually doing. One had a label of "Hepa" but every vacuum cleaner and fan in the world has the label "Hepa" on it. On the last day of the conference, the fans were shut off, and the side doors to the outside were open. This was the one moment with an "inside-outside" experience, where one did not feel quite so entombed. I wonder how many people besides me got sick in this building?

The first day was the Patients Conference. This set of lectures painted in broad strokes the nature of this illness and the research into it. Comments from patients ranged from it being "a massive overload of information" to "not presenting anything new". The bottom line is that this day performed its function very well, particularly to those new to the illness. They got to see Byron Hyde, Nancy Klimas, Annette Whittemore, Alison Bested, Leonard Jason and Anthony Komaroff. What could be better? To the newcomers, all of this is incredibly fascinating - and this day was very important for them.

The second day featured a bit of grandstanding by the conference organizers. They made a weak attempt to recreate the "lightning in a bottle" of the April NIH confrontation between Coffin and Mikovits - a day that seems so far away now. In spite of the build-up, this was not "the biggest presentation of Mikovits' life". That day occurred in July 2009. There was an aspect of "a chronicle foretold", and the struggle over a gamma retrovirus involvement in ME will continue. Dr. Mikovits' slides can be seen on Dr. Deckoff-Jones' blog here. Dr. Coffin seemed a bit subdued and meandered on his way, with his little bag, presumably back to Boston to see his Red Sox get smushed.

Shortly before this encounter, the audience was treated to an excellent lecture by Dr. Maureen Hanson. This woman has a fine way of delivering a lecture, presenting information in a clear and palatable form, with just enough humor and tantalizing possibilities to keep the listener riveted. Dr. Hanson gave perhaps the best lecture with a cadence and delivery of someone in touch with and at ease with her subject.

The poster papers went up on the morning of the second day - the beginning of the "Professional" conference. I never have been able to understand why the "first day" patients are not privy to this information. Many of the most interesting research items are presented at the poster sessions. Here again there were no chairs to sit down - no chairs for patients who might be in attendance. I assume that these poster papers will be made available on the internet - but you never know with "these people". They sell a DVD set for three hundred dollars, very much beyond the reach of most people. Perhaps the poster papers will be in the DVD but I would prefer to see them online for nothing. InvestinME does something quite different. They sell their DVD for $20, or, if you can't afford it, they give it to you.

There were about 50 poster presentations. The common denominator was that all were underfunded. I took special note of the posters on GcMAF. There were several of them. Dr.Cheney presented the results of a MAF 314 trial in August in collaboration with Dr. Marco Ruggiero. Marc Fremont presented an interesting poster on Redlabs new Metagenomics fecal analyis, which promises to link up with GcMAF treatment in a useful way. Dr. Shoemaker presented a paper on a small trial with VIP. There were several presentations on low NK cell function, as well as various papers on the working of various diagnostic markers. A Japanese team, working with rats, found the bioflavanoid resveratrol regenerated the atrophied hippocampus. (I immediately reached for my bottle.) Rich van Konynenburg had an update of his independent and crucial research. Recently Rich went to Sweden to give a lecture and his three hour presentation can be viewed here. Here the viewer will find "Everything one wants to know about glutathione - and more". Check it out.

There were many other worthy poster presentations that are not mentioned here.

The third and fourth days were filled with a dizzying array of lectures on various subjects. As usual, it was difficult to find the thread. For a full accounting of the research presentations on these days, I direct you to Cort Johnson's site. Currently there are "quick hits", but soon will be more extensive and detailed examination of the presentations. Cort does an amazing job of summing things up and of finding a coherence to the various threads of research that were presented. I noticed that Cort "takes notes". To me, this seems like cheating. No wonder he can put together all this information in a coherent fashion.

Saturday night's banquet featured a talk by Dr. Byron Hyde, the Canadian veteran ME clinician. He gave a presentation on the history of ME outbreaks. Various well-deserved awards were made - to Leonard Jason, Mary Ann Fletcher, Lydia Neilson, Ekua Brenu and Ellen Piro, The winner of the researcher of the year was Nancy Klimas. This was a nice choice, but could there have been a better one, a more fitting one? Yes, there could have. The IACFS could have given it to Dr. A. Martin Lerner. What were they thinking of - to not have done this? (I ran into Dr. Lerner in the elevator on the first day. He was his usual friendly and enthusiastic self - and said that he had a very exciting announcement - ME/CFS is definitely a heart problem - and that he has Holter monitor, and Echo data to prove it. )

The conference was attended by many familiar faces, Klimas, Fletcher, Broderick, Cheney, de Meirleir, Fremont, Lerner, Mikovits, Baraniuk, Hyde, and so forth. However, this conference was also defined by who was not there. Notable figures were missing - for various reasons, some bordering on the absurd. For instance, Dr. Enlander was not in attendance, nor was Dr. Brewer or Dr. Levine, or Dr. Guyer or Dr. Shoemaker or Dr. Natelson or any of the UK physicians. I had hoped to see Dr. Michael Dean or Dr Theoharis C. Theoharides, both of whom attended the NIH conference. No one from the CAA attended. What was that all about? One wonders why so many people did not show up? Some would say that these "absences" had no effect on the success of the meeting, but I would beg to differ.

I tend to focus on clinician/researchers. I suppose this comes from my own sense of urgency - of wanting to get on to treatments. Personally I would like to see a small clinician/researcher-driven conference, more in line with the InvestinME conference. I would like to see more concentrated discussion of treatment options and focused discussions among doctors and researchers who understand this illness and/or have clinical experience. I would like to see more coordinated, structured talks on biomarkers, and a broader, focused discussion of options for treatment trials. The time to do this is now. The Ratna Ling group and the InvestinME conference give us the examples to follow. I would like to lock in a room various people - Brewer, Cheney, de Meirleir, Guyer, Klimas, Bell, Enlander, Myhill, Levine, Peterson, and Montoya - and not let them out until they agreed on something in regards to diagnostics and treatment. I know it is there. Why can't this happen?

There are other important things on which to focus. Many are intent on continuing the search for a viral or retroviral insult with this illness. More are convinced of this now than at any time in history. This is not 1992. The question is how to deal with this, how to move forward with existing or new therapies. Those who think that the final pounding has occurred with HGRV had better think again. Retroviral drugs, in a few people, are working against something. Most likely they are the wrong drugs and the wrong dosage, but there are possibilities in this direction.

I spoke to Dr. Peterson while we were waiting to board a plane in Ottawa. He emphasized that there were now three options for treatment - Ampligen, Rituximab (Rituxan) and anti-virals. (I don't think he was including anti-retrovirals.) And there are other options that he did not mention.

Meanwhile the Hutchins foundation has pledged ten million to study viruses in this illness. Leading their study is the ever-present Ian Lipkin, who has a powerful idea about himself. He certainly has the equipment and the lab to probe deeper into the viral cause. The question is, will he build on recent experience and find what already has been found? I think many people would be perfectly happy if he did this.

Further information:

It looks like the Chronic Fatigue Initiative (despite its terrible name) is going to do some of the studies that the CDC should have done years ago. They’re using both the Canadian Consensus Definition and the CDC’s “empiric” definition. This seems to be a mistake at first glance, but, if they analyze the two groups separately and show that the “empiric” definition doesn’t really define anything, it could be useful.

Specifically, the CFI is funding some important epidemiological research at Harvard. Researchers there will look at a large group of nurses and health professionals that already have been followed for many years to see who develops “CFS” and what happens to them over time. Hopefully, this will provide the longitudinal picture of the disease that has been lacking up to now, as well as insights into predisposing factors. They will examine a large sample of men and women with “CFS” to determine what environmental exposures they have had. This, too, has been poorly understood. Hopefully, they will be able to begin to understand whether viral infections lead to environmental sensitivities or vice versa (i.e., environmental exposures adversely affect the immune system which makes patients prone to re-activation of old viral infections or acquisition of new ones). This population of patients, as well as the group of nurses, apparently has blood available from both before and after becoming ill, so there is the potential to look at what specific triggers do to various blood tests. This could enhance our understanding considerably. One hopes that they will also be looking at geographic and family clusters--if not now, soon.

CFI is also hoping to clarify pathogenesis by recruiting 200 well-characterized “CFS” patients with the help of Drs. Klimas, Bateman, Peterson and Montoya, as well as 200 healthy matched controls. They will collect clinical data and biological samples from the two groups, looking for clues about what causes the disease. They will store the biological samples in a centralized biobank at Duke University. The samples will be available to other researchers for study. Once this database is complete Dr. Ian Lipkin and Dr. Mady Hornig will be using the samples to look for novel viruses or other pathogens. Again, this is a long-delayed effort that is sorely needed and has the potential to be very productive.

Finally, the CFI is establishing a program called Mechanism of Illness that will provide grants for research looking for the mechanisms involved in “CFS”. The first grant is funding a Fellow in Infectious Diseases at the New York Presbyterian/Columbia University Medical Center. It is important to train new clinicians and researchers who will spend their careers studying and treating ME/CFS. We can hope that other grants under this program will advance the understanding of ME/CFS.

The CFI states that its aim is to fund programs which will stimulate interest in “CFS” and result in increasing commitments by other institutions to research. Certainly, the efforts of the WPI over the past two years have done that. We can certainly hope that the CFI will help to continue that momentum.

Online screening: Voices from the Shadows

2011-10-06T08:16:00.000-07:00

Natalie Boulton and Josh Biggs' ME film "Voices from the Shadows" will be available for people in the USA and Canada to watch free of charge online - during the Mill Valley film festival, where the film is being premiered. The film festival runs from October 6th-16th and the free screening will be extended to October 30th. The film will be able to be accessed for streaming at http://mubi.com/festivals/mill-valley. It will not be downloadable.

This screening is available through a Mill Valley/MUBI collaboration. The will be more information on the website: http://voicesfromtheshadowsfilm.co.uk

This is a timely event. Today is a very good day to reflect on the serious nature of this illness, Myalgic Encephalomyelistis - and to expand the knowledge base of information so that necessary research and treatment can move forward for these neglected and abused patients.

This is a must-see film.

Voices from the Shadows

2011-09-21T14:42:00.000-07:00

“Voices from the Shadows” is a film about severe Myalgic Encephalomyelitis (ME). Natalie Boulton and her filmmaker son Josh Biggs made this film, which focuses on patients in the UK. This is an excellent, excellent film.

The name of Natalie Boulton might be familiar to some of you. Natalie made the book “Lost Voices”, also about severe ME, for InvestinME, the UK organization that sponsors the very best ME conference, annually in London. Richard and Pia Simpson, the guiding lights of InvestinME, do a great deal to further serious clinical and research work in the ME field.

“Voices from the Shadows” is an independently made video development of the book and focus on the consequences of psychiatric and psychosocial misunderstanding about the illness. Because of its sound, editing, pacing and interviews, it carries much more of a wallop.

“Voices from the Shadows” will be premiered at the Mill Valley Film Festival on Saturday, October 8th 2011 where it will followed by a panel discussion featuring Dr. Jose Montoya, the ME clinical researcher from Stanford University, and David Tuller, a medical journalist from the NY Times. Further screenings are being arranged. A trailer of the film can be found on the webpage of the film and is presented here.

I recently watched a finished version of “Voices from the Shadows” to preview it. I had seen several preliminary versions, and was struck by how the balance and pacing of the film was improved each time that I saw a new version.

The film follows various bedbound patients - from early home movies of happy children through the random strike of an “insult” (virus) to later illness severity. Caregivers and patients are interviewed. All interviews are set up and edited for maximum clarity and impact. The timing and fusing of many of the images is first rate. Care was taken in building and constructing every frame. The music is also carefully chosen and interwoven with the images for maximum effect. The music is subtle and persuasive, used with discretion and for visual and emotional emphasis. Particularly striking is the cello music, an instrument whose sound is so compatible with the “aching distress” of the subject. The bottom line is that every single square inch of this film is “considered” - to heighten the difficulties of ME and the obstacles that these patients face. Josh and Natalie have a close and abiding “attachment to the subject” – and it shows.

The film features three true heroes in the public ME world, Dr. Leonard Jason from DePaul University, Dr. Nigel Speight, Consultant pediatrician of Durham University Hospital, and Dr. Malcolm Hooper, the Dean of ME physicians in the UK. Each speaks with a clarity and conviction about the seriousness of ME - and of the longstanding disregard and mistreatment of ME patients. These three people are filmed and interviewed in such a way that their message is delivered with great emotional intensity and clarity.

It is my belief that this film will have a major impact on educating a wider audience about the true nature of ME. Natalie and Josh have made the absolutely correct decision to focus on the very severely ill, and on their medical treatment (or non-treatment). “Voices from the Shadows” depicts “the very bottom” of the illness, what I like to refer to as “the core of the illness”. This was an important choice - as this “bottom” is where the severity of the illness can be most clearly seen –and tested. More clinicians, more researchers should seek access to these patients to find out what really is happening in this illness. Even though the patients are sequestered in rooms, sophisticated, experimental tests can be run on them - involving, blood, urine, saliva and stool samples. The only physician that I know of who engages "the most ill" is Dr. Kenny de Meirleir, who goes into the homes in Norway and other places - and tries to determine what is happening through testing. Perhaps other clinicians do this? I would like to know who they are, as they are important witnesses. Too often clinicians see patients who are “half sick”, patients that can actually get out of their houses into a doctor’s office - so that they do not get an entirely clear or full view. But what about those who cannot move -or cannot be moved? Who sees them?

Josh and Natalie have made a number of exquisite decisions regarding this movie. In the first place it is the right length, a few minutes over an hour long. Within this span of time the story builds through a set of pictures and interviews of patients and physicians. The three principal medical personal reappear throughout the film giving it a great continuity. The pacing and image cutting/building is first rate, riveting the viewer along the path to a catastrophic ending. This film is not for everyone. I do not recommend that patients watch this film. But for others, clinicians and doctors, it is just the ticket to sober them up a bit about this illness.

This film is not a “Professional” movie made by outsiders with a large budget and a large crew. This is a first rate documentary made on a low budget by two people who have access to the “core of the reactor”. There has never been a film like this, and there is apt not to be one again in the near future. This “core terrain” is a difficult place to access, as the illness itself being “stress-related” (“Picking up a glass of water is stress.”) disallows the spectator or helper getting close to the patient. Getting close requires great empathy with the patient’s particular situation, and one has to have great experience being around these ill patients. These two, Josh and Natalie, have a special key to get into the inner sanctum, and they do a marvelous job in a very trying situation.

One quibble that I have about the film is that it does not explain enough the condition of the patients that one sees in the images. For instance, several of these patients are wearing what appear to be headphones. In actuality, these are construction sound blockers. These patients have severe hyperacusis (noise sensitivity) along with photophobia (light sensitivity). Many wear masks twenty-four hours a day. Often they are afraid of sound, as it is incredibly painful to them. Certainly they wish they could listen to music, but it is impossible. Many patients live totally in isolation, in the dark, unable to see, hear or talk. Sometimes a patient has to have a sheet suspended above them, as the contact with the sheet is too painful.

Perhaps this film will do its part in hammering home the true nature of ME. Anyone who looks at this film is going to ask themselves a question. Is this the fatigue illness where patients lounge around or place their heads on the table in class, or drop dishes in the kitchen? Does this look like a “yawning” disease? Or does this depiction of ME indicate a virally (or retrovirally) induced sickness with serious autonomic and immune incapacities? ME is a serious neurological illness that include attacks on all senses – sight, sound, touch, smell, as well as the brain and every other organ in the body. Watch this film and see for yourself.

Too many doctors and too many researchers and too many friends and family do not want to go down the road to look at this illness. There are reasons why so many people turn away from the patients - and leave them abandoned and bereft. The illness is very Medieval and frightening. Most people, most doctors, most researchers, look away. This movie will help people take a good look. This movie will help wake people up.

And yet the film does focus on "those who do not back away" - the caregivers. These caregivers are trying valiantly to save their loved ones, but the stress is in their eyes, in their movements. It is a very difficult position to be in, to chose to move in close and support the very ill patient. Moments of interchange between the caregiver and patient are excruciatingly poignant and painful. This illness is terrible for the patients. It robs them of much of life's normal activities and interaction, and yet the caregiver, in his or her giving, suffers terribly also - and this film delivers that message. A properly balanced interaction between caregiver and patient - something that is extremely difficult to get right - is depicted with extraordinary sensitivity by these filmmakers.

“Voices from the Shadows” is being shown in a special sneak preview at the IACFS conference in Ottawa, It is scheduled for viewing between 5:30-7 on Thursday September 22^nd. The end of the day is the wrong time to show this film. This should be shown at the beginning of each day to get the conference participant's minds focused on their task. This is a breakfast film. The film will disabuse the viewer of any false notions that they might have had about this illness, and replace it with known facts and reality. "Voices from the Shadows” is a labor of love. It strikes from the heart – to the heart. Everyone who has an interest in this illness should see this film – from beginning to end.

Reno, Nevada -September 15, 2011

2011-09-16T12:12:00.000-07:00

I spent a magical evening in Reno, Nevada at the Whittemore Peterson Institute's 7th annual gala fundraiser. This event was attended by about 400 persons and is designed to both celebrate the work of the Institute and to raise money for research and treatment for ME. The evening unfolded over five hours with silent auctions, a cocktail time, dinner, awards and dancing. Music was provided by Nashville singer Suzi Oravec, including her version of "I hope you dance".

The atmosphere was serene and beautiful, with an unusually strong sense of sympathetic and deep community support for the WPI and its tasks. It was a pleasure to observe this.

The work of the WPI, particularly the research of Dr. Judy Mikovits, has lit the fuse on the explosion of interest in ME that has occurred over the past two years.

In the course of accepting the Outstanding Advocate award, I said the following:

I am most honored to accept the WPI's Outstanding Advocate award. In doing so, I pay tribute to the Institute and to the broad and varied forms of advocacy performed by so many dedicated people, each playing his or her part in the fight against neuro-immune illness disease the the WPI was created to combat.

My daughter, Alexis, is seriously ill with Myalgic Encephalomyelitis (better known as ME).

She has been housebound in St. Paul, MN for five years. Because of her deteriorating condition, I have had to move full time from my home in Philadelphia to help her. Our biggest problem is that she has no attending physician. She is unable to travel to an office and we have found no one willing to manage her care at home. I, a sculptor, make medical decisions for my daughter, based on telephone consultations with a web of physicians throughout the U.S, Canada and Europe.

One of the fundamental difficulties in dealing with this illness is this lack of ongoing medical care. Doctors for the most part do not believe the illness is physical or infectious, and in large part are unable or refuse to treat it. Another giant hurdle is the lack of coherent data. The WPI is dedicated to addressing these problems.

Patients with neuro-immune diseases are taken out of the game of life, and there is so little help. They, and their advocates and caretakers alike, are isolated from friends and family, and cut off from the usual avenues for medical care. Lives of patients and families are constrained, limited and indeed shattered by these experiences. An ME sufferer once said to me: "This is not the worst disease but it is among the cruelest."

I am here today because thd WPI is a bastion of hope for my family. I was in Reno in August 2010 for the dedication of the WPI building, and to help my son Peter make a short informational video for the WPI. In an interview for the video, WPI founder and President Annette Whittemore recalled a watershed moment. About the illness, she thought:

"Why isn't anyone doing anything? And you keep asking the question, and then one day you wake up and say, maybe that person is me, maybe that is what I am supposed to be doing."

Out of Annette's moment of revelation, the WPI was born.

In this chaotic world of illness-dictated living, my daughter and I are like an island detached from the mainland of life. The WPI is a new causeway, a bridge bringing less isolation, more cohesive research data and more treatment. Through the tireless work of Dr. Judy Mikovits and Dr. Vincent Lombardi, the WPI represents a new dimension: a new dynamic. The Institute's goal is to bring research data to the study of neuro-immune disease, and to provide a framework where doctors can accumulate and share treatment options.

The question I ask myself is what can I do to help?

Personally I do not believe the government is going to step in and help to find a cure for ME. Instead I think the future for research and treatment is as a private enterprise with private financing, like the March of Dimes. We cannot wait to be rescued. We have to do it ourselves. Increased scientific research and improved clinical medicine costs money.

Over the last two weeks I have contacted everyone that I know and everyone that my daughter, wife and sons know, and asked them to make a small donation to the WPI. In the course of this effort each of these individuals has learned more about my daughter's illness - and about the Institute that is working for a solution. Many people came forward (some with a little persuasion). All these people are new givers. All now know more about neuro-immune disease - and the WPI's work to find treatments that work. All of them will give in the future. In two weeks, I have raised $10,000.

I present my efforts as a demonstration, an example of what one person can do. Stringing a number of these smaller grass roots gifts together can meet achievable and valuable goals - hiring an additional lab technician, making informational videos for outreach, or financing small pilot treatment trials.

I ask that each of your consider acting as I have done to spread the word about the WPI and to increase knowledge of and support for the Institute's critical work. The need is so immediate and so great. Those whose lives have been destroyed by this illness deserve all the help we can muster. There is great urgency.

Thank you.

This modest effort at fundraising involved mostly non-ME related individuals. If some of my readership is interesting in joining this effort, you are most welcome and gifts are still coming in, with my name on the designation. I realize that many people already give to the WPI and in no way do I want to interfere with that, but there might be some who want to give an additional gift and I would welcome this. I also realize that many patients cannot afford to give and support the WPI in other ways, ways that are critically important.

Dr. Vincent Lombardi

2011-09-01T08:46:00.000-07:00

Llewellyn King and Deborah Waroff are doing an important ongoing series of videos on ME/CFS. The most recent edition of ME/CFS Alert, Episode 5, can be seen on youtube here. It is an interview with Dr. Vincent Lombardi, the Clinical lab director of the Whittemore Peterson Institute. This interview describes the important ongoing research by Dr. Lombardi regarding an immunological profile for ME/CFS patients.

A profile of Dr. Lombardi from 2009 can be found here, courtesy of InvestinME. It is of interest that he started out with Dr. Daniel Peterson and later worked with Dr. Robert Suhadolnik at Temple. I imagine during this time in Philly, Dr. Lombardi became a Philadelphia Phillies fan. I certainly hope so.

I have seen Dr. Lombardi make several public presentations and always had great confidence that his work was going to be both important and successful.

Comments of hyperacusis

2011-08-17T19:27:00.000-07:00

One thing about writing a blog is that you get very perceptive comments. Here are a few comments on hyperacusis, thiamine and sensitivity issues. They both expand on and confirm points made in my previous post on hyperacusis. Thanks for the contributions.

Erik Johnson:

"Cindy Duehring, co-founder of the Chemical Injury Information Network and winner of the 1997 Right Livelihood Award (The alternate Nobel Prize) suffered from severe noise sensitivity. The sound of her own voice induced seizures.

http://ciin.org/pages/04-fund.html

http//www.wtv-zone.com/infchoice/news/bismarck/dies.html

Cindy Duehring made a surprising and extraordinary shift in focus during the last months or her life. From investigating chemicals, to studying mold."

Sheena:

"After having a severe relapse for 5 years and amongst other things trying a high protein, low carb diet, I ended up in the hospital unable to digest anything and with hypoglycemic symptoms. They gave me simple cars and 200 mg of thiamine. I woke the first night feeling euphorically better, put on weight and was discharged. At home I switched to an easy to digest diet but a year later I'd again deteriorated to the point where I was struggling to digest anything. So I bought myself some B1 capsules and again instantly felt better. Unfortunately no doctor has been interested in finding out what my problem with B1 is and I think there would be no chance of getting injections in the UK. I find it particularly annoying that I'm having to self treat myself with any doctor support or investigations."

Kelly:

"All drugs will do is temporarily suppress symptoms (with the exception of those that might treat a CPN or other infection). Check out RIBOFLAVIN. Works with B1, activates B6, is essential for proper mitochondrial function, treats seizures, tremors and above all, the deficiency of which causes extreme SENSITIVITY TO LIGHT, among many other symptoms."

Anonymous:

"Neurontin helps with noise, sleep, anxiety and some pain. Increased brain fog is the major side effect (take Lithium Orotate 3x's/day to counteract this along with NeuroProtek 4 x's/day.) Foam ear plugs at night are a godsend. But I'm the first generation of this illness and probably don't have it as badly as some."

Jim K:

"You might also look into secondary porphyria as a cause of hypersensitivity to noise, light, and sensation including pain. Intracellular pathogens associated with ME, such as chlamydia pneumoniae, as well as mitochondrial ATP dysfunction makes for inadequate ATP to complete heme production in certain cells. Incompete heme by-products, porphyrins, are highly neurotoxic and can accumulate in body tissues. Porphyrins bind with GABA receptors, the natural buffers for our nervous system, and make for inadequate inhibitory control of stimulation. The result can be increased pain, hypersensitivity to sensation and cognitive dysfunction. Sounds familiar? All common overlap with ME. It is a commonly overlooked result of ATP dysfunction."

Anonymous:

"I am familiar with the most severe type of hyperacusis - the type where you have to whisper; tiptoe in stocking feet; ban music; replace the telephone ringers with flashing lights; remove ticking clocks; eat off quiet paper plates with plastic forks; cover the window with sound-deadening padding; cover the toilet with a sleeping bag. You wrote:"Most patients suffering from hyperacusis try to protect themselves by covering themselves up with earplugs and noise blocking ear protectors." I don't think this protection is a bad thing. I look on severe hyperacusis as a brain injury, and I think it is good and necessary to protect the brain as much as possible for a period of time. I also recommend the tiny, in-ear noise producing gadgets that can be controlled by the patient. And yes it does take time to recover - maybe a couple of years - but people do recover."

Kkrizani:

"I have been taking a supplement called Benfotiamine which is a form of fat soluble thiamine for seven years. I started it because it is used for preventing damage to cells from glucose in diabetes (which I also have). Despite being fat soluble its been shown to be non-toxic in studies overseas. It stopped the neuropathy that was developing in my legs and feet. If I take it, no neuropathy, if I stop the pains starts within a week. Pretty straightforward. Here is where I order it from - they also have a good FAQ: https://www.benfotiamine.net/default. aspx"

Rebeccafromdaforums:

"I have severe ME/CFS and once experienced extreme sound sensitivity, to the point where I had to wear both earplugs and earmuffs to block the sound of water running or the hum of the refrigerator. As tested by my audiologist, my maximum sound tolerance was 30 decibels, the rustling of paper. I could eventually whisper a little with people, but doing so was difficult because I had to take out my earplugs and deal with the ambient noise of insects buzzing. Over about 2.5 years the hyperacusis did gradually go away with the help of the Modified Tinnitus Retraining Therapy, which involved graded exposure to while noise emitted by devices that look like hearing aids. The noise sensitivity alone was enough to drive me to the limits of my coping ability. The isolation twisted my soul."

Losartan

2011-08-16T12:49:00.001-07:00

My Google Alerts brought this interesting mitochondrial study today. The drug Losartan rang a bell. Dr. Ritchie Shoemaker had mentioned it to me in Reno in 2009 as he was explaining his poster paper. Dr. Rosamund Vallings wrote a bit about it in her summary, and I found the following on the Phoenix Rising website.

"TGF-beta 1 in the treatment of autoimmunity in CFS associated with HLA DR by PCR - Ritchie Shoemaker - The ability of Losartan (up to 50 mg a day), an angiotensin receptor blocker, labeled for treatment of hypertension, to lower TGF beta-1 may affect TH-17 cells that in turn affect T regulatory cells. Losartan may have a role in the innate immune abnormalities in CFS."

Hyperacusis

2011-08-05T18:56:00.000-07:00

The following observations should not be taken as medical advice, as I am not a doctor. All medical decisions should be put in a doctor's hands - if you are able to find one who will "deal” with this illness. On the other hand, many ME patients and their advocates are "on their own" with this disease and its peculiarities. Consequently the normal way of "doing business" does not apply. Most doctors take one look at this illness, and turn away.

Hyperacusis, or noise sensitivity, can be a nasty symptom or set of symptoms of ME. It is one of those neurological breakdowns, along with photophobia, sensitivity to touch and sensitivity to smell or taste that plague ME patients. The symptoms themselves can take various forms. Hyperacusis often is attended by tinnitus or misophonia, two other serious neurological hearing problems.

Noise sensitivity arrives either rapidly or slowly, stays or goes away, gets better or worse - and always follows a course of its own. In other words it is like everything else in this unpredictable illness that is ME.

Hyperacusis is one symptom in the large array of symptoms of ME that affect any and all organs of the body. For those who seek general information on hyperacusis read here and here and here. There are many other valuable information sites. Maiji Haavisto, who writes so well on ME medications in her book "Reviving the Broken Marionette", has an excellent article on photosensitivity and hyperacusis here.

In reading the internet one can deduce this:

Dr. Paul Cheney might suggest taking Klonopin or Neurontin to lower the threshold of excitotoxicity.

Abraham Shulman produced a study showing the benefit of taking Neurontin (along with Klonopin) for hyperacusis. Unfortunately there is also ample anecdotal evidence that Neurontin can make hyperacusis worse. So the patient or advocate is put in the usual bind. Will this drug make things better or worse? Do we want to take the chance?

Dr. Kenny de Meirleir would suggest that the trigger is excessive H2S in the gut. His treatment might be vancocin or rifaxin in short doses, combined with probiotics VSL3 and Mutaflor.

Dr. Dale Guyer might lean towards the idea that the hyperacusis is caused by low adrenal function.

Dr. Jamie Deckoff-Jones speculates on her important blog about sensitivity issues. "I was speaking to the father of a patient today who is having severe light and sound sensitivity, much like the very severe patients in the UK and Norway. Ali is being triggered by smells, even natural smells like essential oils. My light bulb for today was that these problems are all very similar, all extremely heightened responses to different sensory stimuli. My first symptom was heightened and altered sense of taste. Many patients, and autistic children, have problems with touch, can't stand tags in clothing, are hypersensitive to light touch, etc. I suspect it's a kindling phenomenon, less than seizures, but similar, a little less than a full-blown disease, as often happens in ME/CFS. Networks of neurons are being synchronized inappropriately by sensory triggers. Repeated stimulation leads to threshold reduction.”

Right away the patient, or advocate, is confronted with various "possibilities”, or causes, of the sensitivity issues: brain excitotoxicity, excess H2S, low adrenal or thyroid function, or continuous mini-seizures. To these can be added mercury poisoning, mitochondrial myopathies, and Lyme disease. What can one make of this? Perhaps the reader can add to the list? I know what ErikMoldWarrior might add - and he is correct.

Several interesting items surface on the internet. The first is the repeated connection of neurological sensitivity issues with Lyme disease. Certainly these issues are also associated with ME, but since no one knows what ME is (or it doesn’t exist), suddenly Lyme becomes a more interesting avenue to explore. Dr Brian Fallon, a noted Lyme researcher, conducted a very small (could hardly be smaller) study at Columbia using the drug Carbamazepine. (Please notice the name of Pawel J. Jastreboff on the study.) This study followed two Lyme patients who took Carbamazepine for hyperacusis and both showed improvement. There was no follow-up study. My email questions to Dr. Fallon went unanswered.

In reading about Carbamazepine, one notices that it has certain side effects, some of which are not pleasant. This includes Stevens-Johnson syndrome that you can read about if you want to get frightened or discouraged. SJS will resurface when and if Rituxamab becomes a real possibility for ME.

A good article on Lyme disease and hyperacusis can be found here. It is worth mentioning again Melody O'Beau's fine article on Mitochondria disorders and hyperacusis and thiamine activation problems.

The prudent advocate will approach this very difficult Hyperacusis situation with caution. Hyperacusis is an extremely delicate issue, and it does not lend itself to a lot of banging around. Initial hopes will lean towards the noise sensitivity going away on its own- exiting from the stage in the same fashion that it made its appearance. The chance of this happening is low, but one can hope.

The next logical step is to rule out an ear infection. Having a doctor look into the ears rules this out pretty quickly.

It also seems reasonable to make a concerted effort to determine if any existing therapy or drugs are producing this symptom. This process involves getting off of all new (or old) drugs (or supplements) that might cause hyperacusis. This process in itself takes some time, and precludes moving forward at the same time. In order to be rational in these situations one must be patient and thorough and, as usual, the patient is on their own. If one has the privilege of asking a doctor about such neurological sensitivities, one gets a shrug of the shoulders.

One can read that Doxepin, Elavil, Lorazepam and various sleep/anxiety medications have side effects of sensitivity issues, particularly photophobia (or light sensitivity). The side effect numbers are very small, but they do have to be considered.

In terms of drug treatment one can read that Klonopin or Neurontin can both help and exacerbate hyperacusis. Does one want to take the chance with these drugs? It is a flip of the coin.

Having set aside the idea that drug or supplements are the cause of the hyperacusis, one has to keep looking for a way out.

There is evidence, slight, that magnesium can help, especially if it is combined with high dose B6. There is one study of autistic children that shows some benefit of this therapy. There is also some thought that thiamin deficiency has something to do with hyperacusis, and this can be seen in another post. Sleep deprivation can certainly exacerbate sensitivity issues, leading one to fix problems with sleep.

In the meantime, the patient has to be protected from loud or unexpected noise. This can take many forms - including building sound blocking rooms and windows, using drapes, getting rid of noisy neighbors, shutting down the nearby lawn mowers. Once one enters this business of trying to avoid or limit sound, one notices that certain problems arise. For instance, it is very difficult to silence birds or children's playful voices, or traffic moving by on the street, all of which cause great distress in the patient and the advocate, neither of whom really knows what is happening or where this came from or where this is going. Welcome to nightmare land.

Ongoing, severe hyperacusis can be life altering. One ME patient with serious hyperacusis says that it “twists the soul” (or "warps the soul"). The situation can be worsened by other sensitivities, the inability to tolerate light or the inability to speak above a whisper, or indeed, speak at all. The consequence of hyperacusis, especially if it is attended by photophobia, is that the patient is "walled up"- completely cut off from reality, unable to have information moving in and out of themselves. Can you imagine the effect of such isolation? Most of us would go right off the deep end. It takes an unusually strong person to withstand this peculiar tortuous form of brain sensory attack. At its worst, hyperacusis is a living nightmare.

Floating in the background is one treatment approach, one that indicates a way to overcome or neutralize hyperacusis, no matter the cause. This treatment - Tinnitus Retraining Therapy (TRT)- places hyperacusis in a category of being something that can be reversed.

An ENT doctor, a friend, was kind enough to look at my daughter’s ears (determining that there was no infection). He wrote this to me:

“One thought about noise sensitivity - the typical remedy for that is to gradually increase a white noise exposure over time. It is based on the body’s ability to accommodate: when you are in a noisy room full of machines, but you don't notice the sound until someone turns them off - that is because your body accommodates and recognizes that it is not important sound. So noise isolation can TYPICALLY make the sensitivity worse. What we would generally recommend is that the person get a very quiet, non-irritating white noise - such as soft radio static, a fan, or a baby sound generator. The person very gradually increases the volume as they find they have tuned the sound out. If one couldn't tolerate it on the lowest setting, you could put it on a timer to start at night while sleeping, and turn off in the morning for a while, and eventually to be on when you wake up and so on. Just like being in the dark all night makes the bright bathroom lights hurt at 3am, total sound isolation can have the same effect.

The heavy-duty sound isolating head phones may be causing her pain - they work great, but put a lot of pressure on the ear, which can make it tender.”

The advice was welcome news as it reinforced the direction that I was moving. I had been aware of TRT for years, in relation to tinnitus.

TRT is fully and completely adaptable to hyperacusis. TRT is a tinnitus/hyperacusis therapy that was invented by Margaret Jastreboff and Pavel J. Jastreboff. It is taught and practiced across the US (and I assume other countries). It is fully adaptable to ME and Lyme patients, and in many ways fits well other treatments with which ME patients might be familiar – meditation, resting and pacing, and amygdala retraining, among other things.

An article by Pavel Jastreboff and his wife Margaret on hyperacusis is here.

http://www.audiologyonline.com/articles/article_detail.asp?article_id=291

The treatment protocol is very specific - yet time consuming, and slow. It is available in two forms – either with the guidance of a doctor or an audiologist, or done on one’s own. Information on doing it on one’s own can be found at the Hyperacusis network where you can order a pink noise cd and receive full instructions on how to proceed.

The key to success in TRT is discipline over time. Often it takes months to see improvement. Baby steps are the name of the game.

Fear of the unknown rears its ugly head with these sensitivity symptoms. They are terrifying in themselves, especially since so little is known about them. Overcoming the fear and uncertainty is the first step to take to escape hyperacusis.

Several key ideas are important. Most patients suffering from hyperacusis try to protect themselves by covering themselves up with earplugs and noise blocking ear protectors. While this is a natural reaction - to pull back into an avoidance mode - this protection only heightens the problem. The patient must get off the ear protection devices. This might take time, and it is also dependent on several other things.

The second important point is that the patient must learn (or know) that noise (what they perceive as loud noise) will not "damage" the ears (unless, of course, it is over the OSHA levels that will damage the normal person’s ear).

The third essential factor of recovery is that all “control” of noise must be in the hands of the patient. The patient must have the confidence that they can control the level of incoming noise. TRT uses either pink or white noise machines to create a constant level of tolerable sound to the patient. This can be agonizingly low (imperceptible) at the beginning. Brookestone makes an excellent “sound machine”. This has a volume control that can easily be adjusted by the patient.

A fourth key principle is that all sound associations need to be “positive”. This can involve listening to favorite music or recordings of sections of the Philadelphia Phillies games (of whom my daughter is a great fan).

These are the bare bones of the more elaborate but relatively simple and direct process known as TRT. Further information about TRT is available on the internet, or preferably from an audiologist who knows how to guide it.

Please be aware of the possibility of functional thiamine deficiency, low functioning magnesium and/or B6, and sleep deprivation issues.

Squeaks and Peeps - and a few sharp bites

2011-08-03T21:11:00.001-07:00

A number of weeks ago I read, in quick succession, several articles about Dr. John Coffin. The first told of his and his colleague Brigette Huber's research interest in HERV K18. This is serious research and an "artful collaboration". This article makes abundantly clear where Dr. Coffin's immediate research interests lie. (To some it has long been known that Dr. Coffin has been attached to this HERV K18 retroviral connection, an idea that contends with XMRV.) This is all well and good, serious and legitimate in its own right. The question is, with this background and association, how did Dr. Coffin gain prominence as a"neutral" party in the emergence of the association of XMRV with ME/CFS?

There is another, more predictable, article here, where Dr. Coffin goes knocking about with "the XMRV thing". This has been a habit of his now for over a year.

Because of this conflict, and because of his inept grandstanding, Dr. Coffin has limited credibility. However, he has achieved what he set out to do.

It is worth looking at what we know.

Dr. Coffin was included in early talks about the emergence of XMRV and ME/CFS in the summer of 2009. How he was included in this is anyone's guess. Presumably this "surprise" paper, soon to be published in Science magazine, needed "special handling". Little did the presenters of the paper realize what this "handling" would mean, and what the consequence would be of giving others the heads-up on XMRV.

By the time of the CFSAC meeting of late October 2009, Dr. Coffin, in one way or another, had insinuated himself onto the public stage as a "retroviral expert" - regarding XMRV. Many of us got to see him preening on the videos of this meeting. At that time he presented himself as a dispassionate observer with "a detached interest" in this new retrovirus and its association with ME/CFS.

Seven months later, Brigette Huber gave a presentation of her HERV K18 research at the 2010 InvestinME conference in London. Simultaneously she had also been busy doing a little work on XMRV, looking in the blood of 110 patients of Dr. Susan Levine.

Dr. Huber held in her little valise the results of this study - but she informed participants at the conference that she would not reveal the XMRV study results in her presentation the following day. (The results were suspected to be negative.)

While it was late in the evening in London, it was still cocktail hour in Boston. We can imagine Dr. Coffin, sitting on his porch, listening to his beloved Red Sox, sipping his Courvoisier. We can see him on the line, long distance.

For some reason - your guess is as good as mine - Dr. Huber changed her mind overnight - and at the end of her HERV K18 presentation, clumsily announced the negative results of her XMRV study. This had an unseemly feeling to it. Dr. Peterson leaned towards me and said that he had "never seen anything like this". As she scurried out of town, one imagines that Dr Huber was a little chagrined at having presented this negative information in front of so many sick and disabled patients. At the time it was difficult to determine exactly what the point was. There is no question that it was a sandbag job, and that Huber was shoved into it.

From this moment, it was clear the Dr. Coffin was "on the other side" - pushing against XMRV.

This feeling of Dr. Coffin's "softening" on the XMRV association with ME/CFS was reinforced in September 2010 at the XMRV conference, and again at the Blood Working Group in December 2010. In Gaithersburg, I was able to witness his "academic challenging" - partially supportive, partially equivocal, partially negative, but always shifting positions. The water was being stirred, and it was becoming muddy. Those of us in academia all know that the preferred position is to shoot at others (and how easy it is), and this was on full display on this afternoon.See here.

By early April 2011 at the NIH Dr. Coffin was directly and publicly engaging Dr. Mikovits in scientific needling, still posturing as a "neutral force", directly trying to "deep six" XMRV research. See here and here.

Over these months, there was a series of negative squeaks and peeps coming from others, presumed "academic colleagues" of Dr. Coffin - all aimed to marginalize the association of any viral or retroviral research with ME.

Was Dr. Coffin the best retrovirologist to take a "neutral position"? Who assigned him the position - Fauci? Was he ever "open to suggestion" on XMRV research in the association with ME/CFS - or was his position always academic posturing, a perverted form of "career enhancement"? Why would he bother? What is at stake? Doesn't he have other things to do? It is all a bit thick.

Whatever Dr. Coffin's original intent, or his original involvement, "the goal" has been reached, the one that had been announced in the late fall of 2009 that the WPI was "going to be taken out". XMRV has been "put on hold", and the WPI and their efforts have been stymied. Now we have to wait - and for how long, and for what?

While Dr. Coffin tries to tread a narrow line, knocking about XMRV and at the same time leaving open the possibility of another virus or retrovirus (which will never materialize and which he never will pursue), other folks are less subtle and are more openly aggressive. Coffin is straight out of the American university system. He is careful and covers his bases.

The fellow in the UK (who will remain nameless) plays roughhouse. I opened the paper the other day and read the headlines - and an incomprehensible idea floated into my mind. I said to myself, "Holy smokes, someone finally has pulled the plug on these suckers!" In a few seconds I realized that I had been deked, and the "other guys" had pulled off another tremendously successful stunt. You have to hand it to them, they are clever, resourceful - and dangerous. (This BBC story was a first-rate psychological inversion, where reality is stood on its head.) There is something at stake here. This UK game is not like American academic life. It is real hardball, played with steel bats and no gloves.

And where are our friends Amy Marcus and David Tuller these days? What happened to their story, the one that was going to bring them their journalist reward? Their story lies in a ditch. It was the wrong story - a story without legs. The bottom line is that the storyline has been lost, the tables have been turned. ME has again been smushed in the public arena.

For those of you who think this is a battle over XMRV, I suggest you think again. This is a concerted effort to "deep six" this neurologic illness, and put an end to any sustained serious research into it. The evidence lies there at our feet - there is no data on this illness, and there is no emerging newly fueled research. All outside effort is towards slamming the door.

So the situation is now put in the hands of Daddy government, and we are to wait dutifully for him to come to his conclusion. The problem is that Daddy has not proved himself to have been a good Daddy. On the contrary, he has been abusive, mean, unpredictable, indifferent, inconsistent and venal. Where does that leave us?

Thiamine

2011-07-24T15:47:00.001-07:00

For years I have read about thiamine, and thiamine deficiency, in ME. Thiamine deficiency is known to cause many symptoms that are similar to ME. There are a few stories of people improving with taking thiamine injections. Here is one story. There are others, enough to make me wonder more than once over the past few years of the need to check for thiamine deficiency.

In the search for information about hyperacusis I came across this fine article by Melody O'Beau, written, I presume, years ago. In it she relates her experience with a rare metabolic disorder that short-circuits thiamine being taken up and used by the body. It is not so much the amount of thiamine in the blood, but more the "functionality" of thiamine in the body. This functionality is low, presumably the result of a missing enzyme. Melody postulates, in her case, that this is a mitochondrial defect. Coincidentally, a few months ago, Dr. Joseph Brewer handed me a copy of this same article (of which I was aware) but this "reminder" stirred my interest enough to finally pursue the functional thiamine test (for my daughter) suggested in Melody's blog.

This test is call the transketolase test and can be done for $1oo at the King James Medical Laboratory in Westlake, OH (1-800- 437-1404). The lab needs two blood vials, one ambient, one frozen, both shipped overnight. They give two result - one, a baseline blood level of thiamine, and two, a level of the functionality of thiamine under TP provocation. Results over 17% indicate poor functionally of thiamine - and the need to raise thiamine levels, most likely through injections. Results of raising thiamine can be dramatic.

Dr. David Bell writes about this low thiamin functionality in his Lyndonville News.

"Full thiamine deficiency is rare because of generally good nutrition, but some persons have a defect in the enzyme system that uses thiamine and as a result have dysautonomic symptoms. This can be detected with an erythrocyte transketolase index, where thiamine pyrophosphate (TPP) stimulation test greater than 14% demonstrates thiamine deficiency. The illness, caused by an enzyme abnormality, can be effectively treated by giving very high doses of thiamine which bypass the defect."

People with this situation have a difficult time raising thiamine with oral supplements. In this case, they take thiamine injections on a daily or twice weekly schedule. The injections can range from .1 ml to 2ml depending on the patient's particular need, which is determined by trial and error.

Thiamine function deficiency has been postulated to cause fatigue, muscular and sensitivity issues. The following bit of information appears on various sites: "Vitamin B1 (thiamine) deficiency produces optic nerve dysfunction". A noted mitochondrial researcher wrote to me, "The functional thiamine deficiency is an important finding as vitamin B1 is needed to get magnesium into cells. In muscle ATP always works as a complex with magnesium so correcting intracellular magnesium and factors that affect it like thiamine status is important."

From another dysautonomia study can be found this: "In spite of its largely unknown action TTP deficiency may play an important part since it is synthesized in mitochondria, supporting the conclusion that thiamine is an important nutrient where there is mitochondrial disruption."

Thiamine deficiency falls into the realm of something that is clearly identifiable and "something that is treatable". These are categories that escape ME patients except in rare instances - like Hashimoto's thyroiditis.

The internet is quite an amazing place to gather information. In this case the "trip-switch" information was written up quite a number of years ago by a seriously involved Lyme patient. Years later others are able to benefit from her written testimony/experience. I have communicated my appreciation to Melody herself, and noted the usefulness of this article written long ago.

Mitochondria

2011-07-22T09:22:00.001-07:00

Recent events have gotten me to focus again on mitochondria and its relation to ME. None of the following is presented as medical advice or guidance. I am not a doctor and I do not want to be one. On the other hand, it is worth noting that those with ME are "on their own" when it

comes to medical diagnosis and treatment. The situation for ME sufferers is worse than the 19th century, when physicians at least would ply their trade.

Dr. Sarah Myhill's website, perhaps the most extensive ME website on the internet, has ample information on the critical role that mitochondria play in ME. It is a great starting point. Another informative article is by Dr. David Bell, and can be found in his Lyndonville News here. Dr Bell, an excellent clinician trying to find answers, has had a long-standing interest in the role of mitochondria in ME.

Various clinicians - Dr Joseph Brewer, Dr Sarah Myhill, Dr Paul Cheney - believe that mitochondrial irregularities play a part - perhaps a very large part - in ME/CFS. You can read an article by Dr. Myhill here. In this article Dr. Myhill outlines how mitochondrial failure plays such a very big role in ME. (Incidentally not everyone has caught on to this idea.)

Dr. Myhill collaborated with Dr. John McLaren Howard and Dr. Norman Booth in an important study published in January 2009. This paper, which can be viewed here, was presented by Dr. Booth at the IACFS conference in Reno, NV in 2009. A short article on these three researchers is available here.

Dr. John McLaren Howard is a real unsung hero in ME research. Dr. Howard co-founded Biolab in London (with Dr. Stephen Davies). Prior to retiring from Biolab a few years ago, Dr. Howard pioneered some very important testing in the area of mitochondria and ME. He has continued to do these tests at Acumen lab in Cornwall. His son Mark continues to work as Manager of Biolab.

Dr Myhill's website gives a good explanation of what Acumen is looking for in their testing.

The test itself is relatively easy to do. I believe my daughter was the first person from the US to do this test, back in 2007. In crude terms the test measures ATP function (the rate at which it is recycled into cells) and the efficiency with which ATP is made from ADP. Further testing looks at various blockages to the transport of ATP and ADP. Here is an example of an ATP results page:

The blood test requires one heparanised and one EDTA tube, shipped ambient via Fedex to Acumen lab in the UK. USA Fedex shipments have to be sent to Acumen labs, c/o Cameras Plus, 17A Gold Street, Tiverton, Devon UK EX16 6QB. The samples have to be shipped "international priority" which will get them to Dr. Howard in 48 hours. They need to be shipped in an insulated pack with the proper paperwork. Fedex will help with the international shipping label. They will not help with the packaging in any way. A triplicate copy of an international waybill needs to be filled out in a specific way, the process of which can also be learned through the Fedex site. If the blood is drawn into the correct tubes, if the shipment is packed according to international Fedex procedures, if the paperwork is filled out properly, the sample will breeze through customs to Acumen labs in a timely fashion. Some care has to be taken in these matters.

The test can be done through Dr. Myhill. She will write a particularized summary that is very useful. She has seen hundreds of these tests and works closely with Dr. Howard.

Rich van Konynenburg's thoughts (always welcome) on mitochondria and ME can be seen on the Phoenix Rising forum. This ME/CFS information site was founded by Cort Johnson. This website provides us all with much needed information and connections - and is an ongoing, necessary resource. Not a day goes by that I do not read it.

The big question is, once the specific mitochondria problems are identified, can these deficiencies be rectified? As with all matters with ME, the proof is in the pudding. It is trial and error - but at least the patient has a target, and a means of measurement and tracking. Many people have been helped by this test and its targeted treatment.

Is it possible that such sharp and diverse minds as Myhill, Cheney, Howard, Booth, Bell, and Brewer can be gathered around a subject - mitochondrial failure - and that there be nothing there? No, I do not think so.

The interesting thing about mitochondria dysfunction or illness in general is that it is viewed as a disease - as opposed to ME, which is viewed as nothing. At the moment there is broad attention being paid to mitochondrial diseases and mitochondrial dysfunction, and this reality opens up an entire area on to which ME might be able to piggyback. One of the greatest hopes for ME patients is that something will slop over from another research area - HIV, cancer, mitochondria, MS, stem cell - and inadvertantly land in the lap of ME.

Several national mitochondrial disease websites can be viewed here and here.

The proposed intervention, tailored by the physician to the particular needs of the patient, revolve around what is know as the "mitochondria cocktail". Dr. Myhill stumbled upon mitochondria support through the research of Dr. Stephen Sinatra, the American metabolic cardiologist. The mitochondrial cocktail consists of various supplements. These include NAD, Co-Q10, d-ribose, carnitine, Idebenone, b2 (riboflavin), b1 (thiamine), creatine, and magnesium and b12 injections. A good webpage that covers some of these supplements is this Medscape article. Each patient's cocktail is particularized - either by a physician or by trial and error. The experienced patient, whether with lyme or ME or both, will be able to tell what works for them, and what doesn't, thus devising their own balanced protocol.

Dr. Denise Faustman

2011-06-25T20:51:00.000-07:00

I know nothing about science and its practitioners. Personal circumstances have led me to read and learn about type 1 diabetes research for almost 25 years now. The cure or solution to diabetes type 1 was always presented as being around the corner, five or ten years away. Diabetes, especially type 2, is a huge industry with great pressure against a "breakthrough". There have been several promising avenues towards a cure for type 1 that have been pursued over the years. One has been islet cell transplants - and a small company - LCT - in Australia leads the way in this field, struggling mightily for financial support. More recently promising trials have begun in the US using stem cells. There are many fine researchers working in the field. Of special note is Bernhard Hering here at the University of Minnesota.

One of the most astonishing researchers in the field is Dr. Denise Faustman. Dr. Faustman has developed her own ideas about how to deal with this nasty illness. She is a revolutionary thinker. For many years now, Dr. Faustman has met stiff resistance - in spite of being connected to a first class laboratory at Mass General. Most of her research financing has come from private sources - Lee Iacocca in particular. The main- stream diabetes research organizations have been strangely reluctant to get behind her. Others have spent some time trying to sidetrack or "borrow" her research ideas, at the same time discounting them. It is an ugly story. Dr. Faustman has remained unfazed through all this, and continued at her work. She is a remarkable woman and you can see an interview with her here.

Today there is the following article in the Wall Street Journal. The story is also in many other newspapers. The reader will notice that there are several interesting angles to this story.

Dr. Denise Faustman has long been a great hero to me, and this news comes as no surprise to me. She is one great gal. Many of the readers of this blog will not miss the parallels to another great researcher - Dr. Judy Mikovits.

Red Letter Day

2011-06-17T13:09:00.000-07:00

I opened up the paper (computer) this morning and was astonished to read the announcement on Dr. Jamie Deckoff-Jones' blog. The Whittemore Peterson Institute in Reno, NV is going to begin seeing patients on August 1, 2011. In a sea of shit, this is one beautiful piece of information. You can read all about it on Dr. Deckoff-Jones's blog.

Many years ago now, a small group of people resolved to tackle these complex neuro-immune illness - ME/CFS in particular. They gave up waiting around for others to step forward, and they decided to do it on their own. These are remarkable people, able to push a situation to its fulfillment. In today's world, this kind of self-driven accomplishment is almost unheard of.

Today's announcement marks the beginning of the full realization of the dream of the Whittemore family (and their wide network of supporters in Nevada and world-wide). They dreamed to have a research and medical facility - researchers and clinicians - working side by side (bench to bedside) to figure out this complex disease - and to design treatments. They resolved to establish an Institute that had the sensitivity, expertise, and determination to wrestle with this illness that has been so marginalize and neglected for so many years.

Now the world has a physical place that can be a destination point for the thousands of patients who suffer from ME/CFS. Perhaps some of us will not be able to get to the medical treatment center - but all treatment protocols will be transportable. The real hope is that this medical unit will be the first of many. This is a huge step forward in this illness. This treatment center is something very real - and its reality is full of great symbolic meaning.

It is worth spending a moment viewing this short video about the WPI made by Peter Cairns last summer. In it you can catch a glimpse of Dr. Fredericks, an endocrinologist, the first specialist attached to the treatment center.

Congratulations to the WPI and all those who are attached to it. Special congratulations should be extended to Dr. Jamie Deckoff-Jones, for assembling this team of physicians. Her work and expertise will serve as a model for future clinical staffs working with this illness.(It is also worth viewing Dr. Deckoff-Jones' remarkable interview in this video.)

For those of you who want to read up on the meaning of "red letter day" go here.

The blood boils

2011-06-14T20:33:00.000-07:00

Exchanges of letters are always interesting - and revealing. One can spend a long time - a life-time - waiting for a response letter like this one from Wanda Jones - to Dr. Joan Grobstein. It is a whopper, a classic of avoidance, and with short-circuited, empty promises. The sophisticated reader can detect a bit of irritation here - even petulance - and a veiled threat too.

Dr. Grobstein's articulate and respectful documentation of misdeeds taking place at the recent CFSAC meeting remains unanswered in substance. It is met by a contemporary "open/closed" mindedness. Frankly, we are sick of this.

Wanda Jones did learn a bit from the preceding exchange, keeping this one short, thus avoiding revealing too much by running on and on. However, she is unwilling to address the main issues, or to take responsibility for the very crude, illogical and inexplicable behavior towards patients at the recent CFSAC meeting, an "event" for which she is responsible. What can be done with such a person? The answer is - nothing can be done. Such people are insulated from reality, and can do whatever they please, subject to the whims of their bosses. While Wanda Jones moves on to more fertile pastures, will her replacement be more just, more reasonable towards ME/CFS patients? Don't count on it.

We are trained in modern times to know that small, seemingly innocuous responses can have big meanings. This letter reveals a complete and total world of indifference. There are those who will say this - Please leave Wanda alone, she is the friend of CFS. Let me tell you that these people are wrong. One more friend like Wanda Jones and ME/CFS patients are finished.

Please do not miss the quotation at the end of her letter.

Here is her letter:

Dr. Grobstein,

We are moving forward to clarify instructions with staff who are supporting future CFSAC meetings.

The resting area we provide at the back of the room, separated by partitions, is a courtesy accommodation we provide to people with CFS who attend the meeting. We are not required to provide footstools, benches, cots, or other types of accommodation that have been requested over many years by persons with CFS. Our videocast of the meetings has provided access to more people than we could ever accommodate in one physical facility, and we will continue to provide that service.

If you choose to attend future meetings, I hope you will find them improved by your suggestions.

Wanda K. Jones, Dr.P.H.
Principal Deputy Assistant Secretary for Health
Designated Federal Official--Chronic Fatigue Syndrome Advisory Committee
US Department of Health and Human Services
200 Independence Ave. SW, Room 716G
Washington, DC 20201
Phone (main) 202 690 7694
Phone 202 260 4432
Fax 202 690 6960
Email wanda.jones@hhs.gov

"Mobilizing leadership in science and prevention for a healthier nation"

Dr. Joan Grobstein responds to Wanda Jones

2011-06-13T13:23:00.000-07:00

A number of weeks ago I posted a letter from Dr. Joan Grobstein to Wanda Jones in which Dr. Grobstein addressed a number of "shortcomings" at the recent ME/CFSAC meeting.

Generally people in the position of Wanda Jones will do one of two things. They will either reply immediately - or not at all. Let's give credit to Wanda Jones for her speedy reply. Her letter follows here:

"First of all, Dr. Grobstein, I assure you these circumstances were NOT at my direction. Indeed, registration is not required for a public meeting, but we are limited by capacities set by fire codes. We have little history of having more than 50 people in attendance at a CFSAC session, and we had no reason to think we would have more demand than we could accommodate this time.

As soon as I heard that people were being turned away, I went to the lobby to find out what was going on. There was a miscount of people signed in, and staff thought we were at the fire limits for the room that second morning. Only people who had already signed in and were returning were able to enter; we straightened out the counts, and in fact added 8 more chairs. To my knowledge folks who came after things were clarified were allowed entry, at numbers up to the room capacity. We had very few, if any, empty seats the morning of day 2. We also looked for several people who had not returned for day 2, so that further enabled attendance by others. I am not aware of the guards turning people away, but we will ensure that the procedures for managing building entry are clear for future meetings.

Rules governing Federal Advisory Committees require that all materials provided to the Committee as part of the proceedings must be distributed through the Designated Federal Officer or designated staff. Individual leafleting or leaving materials (including testimony) on a table in the back of the room is not permitted, the goal being that ALL materials provided are part of the public record. (We have discontinued providing copies of everything because of the cost; when we analyzed what was left over, we found ourselves recycling over 80% of the copies, not a good use of taxpayer funds. All the material provided as part of the meeting is posted on the CFSAC website, and is in a notebook at the back of the room for viewing during the meeting.) We did distribute copies of Megan’s testimony to the members, and it will be posted on the website, as is all material submitted. Materials at the back of the room are to be placed there solely by the DFO and staff, not by audience members. We monitor the tables for new additions and remove those items as we find them. This is how CFSAC has been managed since its first meeting in 2003, and this policy is consistent with the regulations governing Advisory Committees.

I was not aware that everyone was removed from the meeting room during lunch. That has never been our policy, as we recognize that some people bring their own food and others simply need the quiet, as you have expressed. That room is engaged by us for the whole day, and again, going forward, we will ensure that a staff member remains in the room. We have been admonished ourselves by HHS Security, for failing to observe the requirement that we accompany visitors whenever they leave the meeting space. I’m sorry this seems obtrusive, but as you know the configuration of the meeting area and the nearby restroom is only minimally acceptable for a large meeting. You’re right that no one should be shouted at, and so, we’ll address these issues with the folks who are providing onsite support for future meetings.

Finally, your suggestion of recapping the recommendations at the end of the meeting is a good one. This meeting, unlike others, generated recommendations as it progressed, rather than in the flurry of the last hour or so of the scheduled time. It would have been good to restate all the recommendations at one time. Three recommendations endorsed by the Committee will be submitted to the Secretary by the end of May. She has 30 days to review them before we post them. Again, this is a standard procedure for advisory committees run by HHS.

Thank you for taking time to point out some of the logistical and other concerns with the May 10-11 CFSAC meeting. As the responsibilities for managing the Committee had already begun their transition, resulting in many new people assisting with various aspects of the meeting, there were bound to be some miscommunications and problems. We are committed to providing a fully accessible meeting, and your feedback is helpful in attending to the onsite issues. "

The problem with rapid responses is that they are rapid. Too much comes out in misdirected fashion. A more measured, reflective response might have served Wanda Jones better in this situation - a situation, incidentally, that she created herself.

Nevertheless we will leave it to Dr. Joan Grobstein to point out the deficiencies in Wanda Jones response. Dr. Grobstein's letter follows:

Dear Dr. Jones,

Thank you for your very quick reply. I wish I was capable of replying as quickly.

I have some concerns about your reply.

First, the literature distribution policy has not been consistent since 2003. At the first meeting I attended in October, 2009, I brought copies of my oral testimony and handed them to a staff member who placed them at the back of the room. There were many other copies of testimony on the table. Audience members were free to take these copies. I understand that the government may not want to pay to make copies if few are actually read. However, it does not seem reasonable to prohibit the public from bringing their own copies, handing them to a designated staff member who can save a copy to incorporate into the public record and then make them available to whoever wants to take one. We are all willing to follow rules, but the rules must honor our right to free speech and assembly, which is not suspended when we enter a room where a Federal Advisory Committee is meeting. Also, the rules should be clear and consistent from meeting to meeting. Any changes should be announced in advance, and all rules should honor basic constitutional rights.

Second, you have not explained why CFSAC staff was not permitted to distribute Charlotte von Salis' copies of the Overview of the Canadian Consensus Definition to Committee members. She referred to this document in her testimony, so it was already part of the public record. She also was not permitted to have CFSAC staff distribute copies of a petition, signed by over 550 members of the patient community, stating that they do not recognize the CFIDS Association of America as their representative agency (http://www.change.org/petitions/petition-to-disassociate-from-cfids-association-of-america-as-our-advocacy-representative). This was also part of her testimony and was also already part of the public record. No member of your staff volunteered to distribute these documents, as occurred for other people who submitted written material. It appears that rules for distribution of written material were not the same for all audience members. Ms. von Salis has written to you about this matter and other difficulties she experienced at the meeting. Meghan Shannon has also documented her experience. I have appended Ms. Shannon's documentation at her request. It is important that the rules not only be consistent over time, but that they be applied consistently to audience members with differing points of view.

Third, you have not explained why Ms. von Salis could not give copies of these documents to a fellow audience member when asked to do so. This is not "leafletting". This is free speech between two private citizens. It is odd that one's normal rights are suspended when entering a public meeting.

Fourth, you have not addressed the reality that people were told this meeting was not a public meeting and were turned away. You state that you did not direct the "circumstances" that led to people being turned away. However, somebody did. Somebody told the guards at the front of the building that this was not a public meeting. Somebody needs to take responsibility for this misinformation to ensure that it does not happen again. People travel a long distance at considerable personal expense to attend this meeting. No one should be turned away. We need to know who to contact if this situation arises again. It may have been a mistake, but it is a violation of civil rights to deny access to a public meeting. The people who were prevented from entering also are protected under the American Disabilities Act.

Fifth, you have not indicated what the solution to possible overcrowding in the meeting room will be in the future. The threat of not being admitted to the meeting because of overcrowding is a significant deterrent to attendance by this disabled community. A plan for accommodation must be in place.

Sixth, it is extremely important that your staff be aware of the physical limitations of this patient population. I was told by a staff member that I was not allowed to eat in the meeting room. Your response indicates that eating in the meeting room is permissible. Patients should have been allowed to remain in the meeting room. The rules regarding use of the room need to be clear to both staff and attendees. If a larger room is used for the next meeting arrangements for eating need to be clear. This patient population is not highly mobile. Most patients require regular nourishment, including snacks. Also, many patients have orthostatic intolerance. Prolonged standing should be avoided. It would be very helpful to have footstools available in the meeting room. Accommodation for these needs is necessary.

Thank you for addressing the need for courtesy by all staff members. I look forward to substantive plans to address the above six concerns.

Finally, thank you for addressing the important need to review all recommendations at the end of the meeting to make sure that everyone understands them.

Sincerely,

Joan Grobstein, M.D.

Letters of "Idealism"

2011-06-06T17:41:00.000-07:00

Back in the day, when students read books, things were different. A typical college student in the fifties or sixties would walk around carrying a book, or having one in their back pocket. Often the book had nothing to do with what was assigned in class, and would have arrived in the purview of the students’ focus through any number of oblique avenues - but never from “the Professor”.

One of these touchstone books was Rainer Maria Rilke’s “Letters to a Young Poet” This small book was a set of eight exquisite letters written from the 28-year-old poet Rilke to a 19-year-old would be poet, a fellow named Franz Kappus. This set of letters gave “advice” and “reflection” to the younger aspiring poet about love, life, resignation, solitude and a host of other feelings and experiences. The book is still in print but seldom read by college students - who have other things on their mind these days.

Please consider the following from the perspective of Rilke’s Letters. These two letters, part of an ongoing series, are written as “guidance” to a contemporary and hypothetical young researcher. They are the contribution of one of my alter-egos.

Dear “Hypothetical”,

Let's start with reading a published paper describing scientific research. Unless it is directly in a field vital to your continued existence, you can pretty well ignore the title. It will be inscrutable at best, with many omissions and obscurities. Reading the abstract may possibly tell you what the title was intended to mean, but this only takes you to another level of obscurity.

The important information comes from the names of authors and their current affiliations. Do you recognize any 'invisible colleges' worth joining? Has the balance of power shifted?

Real meat is hidden in acknowledgments of grants. Which funding did they use, and how much? What does this tell you about alliances between organizations? It is vital to discover what went into this research. The output is far less important, you hold it in your hands.

Next, scan the paper for useful information. Hard data which can't be reinterpreted can generally be ignored. Nobody needs your support for facts. Opinions are another matter entirely. Does this tell you how to slant your next grant proposal? If the authors were nobodies, you wouldn't even bother. If they are 800-lb. gorillas, the dominant silverbacks of the field, you have to pay careful attention to their slightest quirks.

I cannot emphasize enough the importance of recognizing the final arbiter of scientific truth early in your career -- the ability to obtain funding.

With admiration,

Dear “Hypothetical future important person”,

Your idealism is commendable in the abstract, but an absolute disaster in concrete career terms. You have this notion that scientists move ahead by solving problems of great importance to society. The truth is that they move forward by working on such problems, not solving them.

Let us consider the clear example of the Apollo program, in which scientists were curious about the composition of the Moon, and engineers were employed with the mission of landing a man on the Moon, and returning him safely to Earth, before the decade was out. Here was a mission stated clearly at the highest levels of government. Thousands worked on this, and solved the problem ahead of the stated deadline.

What happened? Thousands of them were laid off, starting even before the first Moon landing. Many lost their homes, some lost the automobiles they planned to use in search of their next job; the federal credit union which had loaned them the money to buy these even kept their last paycheck on the reasonable assumption that such jobs were going to be few and far between once the program ended, leading to defaults on loans.

A better paradigm is exhibited by the War on Cancer, launched during this same period. Has cancer been vanquished? Do patients still tremble when given these diagnoses? Has the cost of treating cancer fallen or risen? Do scientists working on cancer research still have jobs?

I should think the important career lessons are blindingly obvious.

Sincerely,

Please vote for WPI

2011-06-06T08:38:00.000-07:00

Keep voting everyday and fund research for neuro immune disease. WPI remains number 1 in their region.

"Voices from the Shadows" trailer

2011-06-05T13:14:00.000-07:00

Voices from the Shadows Trailer from Josh on Vimeo.

Here is the trailer of "Voices from the Shadows", a film made by Natalie Boulton and her son Josh. We look forward to the video, as it is a powerful document - and a necessary one. Nothing will do more to jar people awake about the severity of ME/CFS than this video.

Here is the facebook page for "Voices from the Shadows", which will be presented at a film festival later this year.

With the making of this movie we have another example of individuals putting themselves on the line and making a difference. These two care-givers took the time to do this right and to produce a powerful documentary. Most of the material sprang from their own research and their closeness to ME/CFS - and they were motivated by personal as opposed to commercial reasons. They want to move things along. They want to draw attention to the serious nature of this illness and, in this way, propel research. This effort comes from the heart and the project is entirely self-financed. These two do not stand around waiting for someone else to finance their project. The video was not made to make money, but only to project the suffering of these patients to a larger world. In this, Josh and Natalie are going to be successful, and what they have made is a fine effort. I myself saw a preliminary cut and am anxious to see the finished version. I know it is going to be good, very good.

For those of you who might be interested, several years ago InvestinME sponsored the book "Lost Voices", which can be purchased here. This book anticipates in many ways the video "Voices from the Shadows" and the book carries great weight on its own. Recently the book, compiled and edited by Natalie Boulton, has received a renewed interest. It was handed out at the recent NIH State of Knowledge conference.

Moving forward in an imperfect world

2011-06-03T13:58:00.000-07:00

In January 2007, I was in the men’s room of the conference facility in Fort Lauderdale, FL washing my hands when Dr. Byron Hyde walked in. He started to complain to me, a stranger, about CFS and the conference sponsors, saying that this illness was 30 separate diseases wrapped in one, and that he could only help 15% of his patients. He was perplexed and angered by the vagaries of this conference, and its inability to focus on the problems. At that time, I had to inform him that he was saying this shit to the wrong fellow, as I was only interested in getting answers to my daughter’s illness. Since then I have come to understand more of the cesspool world of ME/CFS that Dr. Hyde was describing.

A few years later Dr Hyde was very quick to dismiss the possibility of an XMRV association with ME/CFS. He has his own ideas and they can be viewed here. In the past few years, Dr. Hyde has disappeared off the larger ME illness stage, presumably to continue his practice that yields so little success.

Time moves on, and Dr. Hyde is now joined by a host of people who have set aside the possibility of the association of a retrovirus with ME/CFS illness. Today we are told that the editors of Science magazine have asked the WPI and Judy Mikovits and Vincent Lombardi and the other co-authors to withdraw their October 2009 paper of the association of retroviruses XMRV with ME/CFS. What are we to make of this?

For starters, this request, to the initiated, should come as no surprise. There has been a feeling of inevitability to the dismantling of the retroviral (or viral) involvement in this illness since the publication of the October 2009 paper. Someone does not want this to happen – and it has nothing to do with science.

(Recently I saw an old acquaintance, a woman who was friends with Elaine de Freitas in the early nineties (their children were friends). The acquaintance got a “close up” view of the dismantling of Dr. de Freitas by the CDC, and it was not pretty picture – nor was it subtle.)

The only surprise is that the Science editors did not have the courage to withdraw this paper themselves. If they have made a mistake in publishing this paper, where is their courage in withdrawing it? How is it possible that the greatest “Science” research magazine in the world has made a mistake of this magnitude? When was the last time that something like this happened? Are these Science editors the Bernie Madoff investors of the science world? Perhaps there are other answers, answers to which we are not privy?

Why has it taken so long to knock out this paper - the weak association of a retrovirus with the innocuous fatigue syndrome knows as CFS? At the moment, we are to believe that the paper was lousy science; next we are to believe that the editors of Science were somehow duped. And all this took over a year and a half to supposedly disprove. What is with this? Is this how high-level science occurs? Remind me why I couldn’t get any of my three very smart kids to take any science classes in college. To them, one look was sufficient.

I stand with Dr. Mikovits and the WPI. This remarkable woman and this remarkable institute have brought so much to the field of ME/CFS research. I admire Dr. Mikovits tremendously for what she is doing for my daughter and for thousands of others. Please count Annette Whittemore and Vincent Lombardi in this group - and all the other researchers at WPI, all those who are driven to find a solution to ME/CFS. Please also include all those who are allied with and inspired by the Whittemore Peterson Institute.

People argue that the XMRV phenomenon has been a distraction, that it has taken attention away from other serious research in ME/CFS. Of course this is a fantastic joke. Please show me the serious research; the consolidated research that was happening that has been neglected. I, and the WPI, would be very interested in what has been dislodged. The WPI, even before XMRV, has elevated the level of research to the very top and - forgive me, for revealing this - they will continue to do so in the future. This institute, their researchers and clinicians, are committed to seeing an end to this illness. They will do whatever is necessary to get to that point. The interest spawned over the last few years linked to XMRV and other WPI research has propelled ME/CFS onto the world stage. Many people – important people – are now aware that this illness is a serious disease and needs attention. Researchers like Ian Lipkin, Harvey Alter, and even John Coffin are on record to find out more about this illness, its cause and treatment.

Of course there are other heroes in this field – too many to name. Not all of them line up directly with the WPI - but they have the spirit, the drive to look for solutions. Some are clinicians, some are researchers, and some are both.

Foremost among them is Dr. John Chia. Dr. Chia, an individualistic clinician/researcher, has gone perhaps farther than anyone to nail down a significant aspect of this illness He has revived a forgotten triggering aspect of the illness - Enterovirus (Echo and Coxsackie B viruses). His research has found real virus in real tissue. His current treatment (with oxymatrine) has modest success with 52% of patients. Dr. Chia believes that other treatment possiblities are in the pipeline with Roche Pharmaceuticals, perhaps available in the next two years. Dr. Chia, devotedly supported in his work by his wife and his son Andrew, is living proof that one person can make a difference. In this discombobulated, confused world of ME/CFS this is often forgotten and discounted. Dr. Chia is a very smart and dedicated man. Incidentally Dr.Chia does not spend any time denigrating others who are seriously working in the field of ME/CFS research. Instead he maintains his independent stance while admiring the work of others, including that of Dr. Judy Mikovits.

And then there are clinician/researchers like Dr Joseph Brewer, Dr. Jose Montoya, Dr Kenny deMeirleir, Dr. Patricia Salvato, Dr. Derek Enlander, Dr. Susan Levine, Dr. Sarah Myhill, Dr. Nancy Klimas, Dr. David Bell and Dr. Paul Cheney, all working to put together the pieces of this illness. All of these people have great interest in serious scientific pursuit. I can’t imagine that any one of them agrees with this Science magazine withdrawal request. All of them believe something significant is behind this illness, and all have wrestled with it for years.

And then there are the more confusing aspects of ME/CFS illness - aspects that are very difficult to decipher. In Reno Nevada in 2009, I stood three feet away from Dr. Dan Peterson, who was being honored by his patients. In a deeply emotional scene, Dr. Peterson, overwrought, was barely able to respond. It was a profound moment and I was glad to be there. At that point Dr. Peterson was in on the beginning research of the WPI. Shortly thereafter he resigned his Medical Directorship at the WPI – for unknown reasons. Later, I sat in front of Dr. Peterson at the InvestinME conference at the moment of Judy Mikovits’ presentation directly following the sandbag lecture of Dr. Huber. Dr. Peterson leaned forward to me and said that he hoped Judy “could control herself”. (She did). His comment struck me as signifying something. At this same conference he expressed to me his belief that XMRV was part of the problem - but not at the percentages presented in the Science paper. Since then Dr Peterson’s attachment to XMRV has wilted. Why? We need to know. Does he believe HHV6 is the primary culprit in the illness - and where is his study to prove this? HHV6 has been a suspect for 20 years without any proven diagnosis or treatment. HHV6 is our greatest hope? We might as well all go home. What went wrong here between the WPI and Peterson? Is this the stage we are at - where personality disputes control our lives, our health? What is the problem?

In the last year the retreat from an XMRV association to ME/CFS has gathered strength in a controlled and measured fashion, with various people switching sides, Stoye, Coffin, Singh, Peterson – a steady drumbeat of defection, unfolding as if choreographed by Merce Cunningham. Why have all these former advocates jumped ship?

Many others are still committed to the idea that something is seriously wrong with these patients, and they continue to try to figure it out - treating it as less of an “Abstraction” (an intellectual game), and more as a real illness with devastating, life-altering or life-destroying consequences.

What forces are at work here? There is great evidence of a power struggle – but over what? And who are the real losers? This last question is easy to answer – the patients get the short straw.

There is much strangeness to this situation. A single patient advocate, pinned down with disease problems of his daughter, can only catch a few glimpses in passing. But by stringing them together, one is left to wonder.

It is known that Jonathan Kerr’s samples from Dr. Enlander “disappeared” in a UK study and are unaccounted for. In the process, Jonathan Kerr himself has “been disappeared” for his fine research efforts in ME/CFS - and is now packing groceries at Sainsbury’s. All of Kerr’s efforts went down the drain. His alliance with the WPI was ground into paste. What is the consequence for the rest of us?

Dr. Bridgette Huber, a protégé of John Coffin, pledged the night before her lecture at the 2010 InvestinME conference that she would not present the results of her negative XMRV study. Something happened later that evening and Huber changed her mind. Most likely she got a late evening call from “Boston” telling or urging her to drop the bomb. It was evident at this time that something big was at stake. There was great eagerness on someone’s part to take advantage of the situation, despite it being the wrong forum in which to present this flawed data.

And then there was the delay in the Alter study. Please explain this to me? Along the way, perhaps you can explain it to Dr. Alter?

It is known that a researcher at the NCI was approached by a colleague early on in the XMRV discussion and told to “distance himself” from the WPI because “they were going to be taken out”. What does this mean in the world of “science”? I suppose this could have been some kind of joke, but subsequent events indicate otherwise.

In this entire sorry affair of trying to dismantle a retroviral association with ME/CFS, Dr. Coffin has played an important role. Dr. Coffin first took center stage at the CFSAC meeting in October 2009 as the resident "retroviral expert”. Relatively quickly he changed sides, devoting great efforts to dislodge any retroviral association with this illness - presumably forever. In the attempt, Dr. Coffin is doing a great disservice to continuing research into this illness. Whether he knows it or not, he is helping put the brakes on any continuing serious research, retroviral or not. His public preening and grandstanding include his misstep at the NIH State of Knowledge meeting where he impulsively recommended “moving on” – and then immediately started backing up. I imagine that Dr. Coffin might have something to do with the Science withdrawal request. There is some larger issue here.

Repeatedly the long suffering patients with this illness are accused of showing “bias” or hysteria in their interest in a potential solution - as though it were a crime to have aspirations for betterment, and their own sense of knowledge about what concerns them the most.

Clinicians are criticized - by nonentities - for treating very sick patients with antiretroviral drugs. These drugs are deemed to be “dangerous” and “with side effects” - even though these same drugs are being given out like candy in Africa as a prophylactic against HIV. ME/CFS itself has “side effects” - a crippling set of symptoms that delivers a “living death” to many patients. Why this great interest in prematurely closing the door on a potential treatment? Why do these “warning” come from “researchers”? What do they know? What is their real interest in this disease? Why do they feel compelled to practice medicine?

I advance these instances because I have stumbled upon them in my effort to aid my daughter. What I present is a partial picture of what I have observed. These instances disturb me, and make me wonder what has become of the world of science that I grew up in? Today’s world of “science” seems more a world of bad human drama, where there are no rules or restraints. Anything goes, and anything is possible. Who gets trampled on in the process makes little difference.

In the last year and a half we have witnessed a withering set of attacks on XMRV - the only consolidated serious shot of real science applied to this ME/CFS in many years. What has provoked this attack? Are we to believe that there is serious fault with the science – and that it is some big mistake? How come the resistance comes from so many different directions - some of it half-assed, some of it more serious - and yet, collectively, unable in over a year and a half to knock out XMRV? Science is said to be slow, but this is a bit thick. It is worth mentioning that resources for this dismantling have been “available” (from where?). A great deal of funding is working on the discrediting side of the equation, very little on the advancement side. Why is this?

The larger question, the most important question, remains unanswered. Where is the ongoing and future interest in this illness? Where are the larger research ideas and platforms? Where is the data? How come the WPI sponsored association of XMRV has not generated an ounce of further positive research at the NIH - perhaps outside of XMRV, perhaps looking to other causal factors? How come so few advance an interest in research into the fundamentals of this illness - even if XMRV is wide of the mark? There is a larger, more deadly association here - and it is to finish off all serious research into this particular illness. Why?

My contention, my belief, is that this illness generates disregard, disbelief and distaste. The patients are ignored, mistreated, and abused; those who have the courage to contend with the disease are ostracized and ridiculed; and those who research it are quickly sunk. One can speculate where the disregard comes from - what particular shape it takes - but all the evidence is there for those who want to look.

In this polluted environment, the WPI and Dr. Judy Mikovits and Vincent Lombardi are trying to make headway against neuroimmune illnesses. In spite of the very stiff resistance, momentum is on their side. Their aspirations are noble, and their cause is just. The WPI remain undeterred and are moving forward.

Us poor little suckers suffering from this illness are supposed to believe that both pure science and perfidy can exist side by side. This is a big lie. They overlap and are intertwined. Today, it is difficult for the average to above average intellect to figure out what is going on. It is very difficult to regard any efforts surrounding this illness to be moving towards a larger field of betterment. Everything is tangled to an infinite degree, and much of it is very negative - hostile even.

This illness has never enjoyed any sense of anything - just a lonely gloom, and the feelings of misdirection, hopelessness and unnecessary rip-off. What is it about this disease that frightens people and puts them off? Can someone explain to me the unexplainable?

I come back to the essentials. I love the WPI and Judy Mikovits - because they exist. Once they are gone, once they too are “disappeared”, we are going to notice the difference. In a perfect world the WPI would have spawned, as was their hope, other groups working hard at a solution. Perhaps the perfect world is still to come?

It becomes clear that ongoing research is going to have to come from private funding. The government is committed to hanging these patients with ME/CFS out to dry. Efforts will need to be made to secure private research funding. Research must continue into this disease, and those committed to it must not be put out of business. If not XMRV, then what? This is the question that researchers should be asking – and answering. There is no excuse for not pursuing the cause or causes of this serious illness. We need answers and we need treatments.

Anonymous #3 - CFSAC testimony

2011-05-28T21:01:00.000-07:00

May 10, 2011 To the Members of the Chronic Fatigue Syndrome Advisory Committee:

In 1994, I was a healthy 20-year-old college student who led an active, happy life. One afternoon in June, I was struck down by ME/CFS. Over the years I got gradually worse until I became essentially bedbound in 1999 and again in 2005.

My plans for graduate school, a career, marriage, and children have been on hold for 17 years..

I think there is a common misconception, even among doctors and researchers well-versed in ME/CFS, that this illness is not especially disabling. Even if they are unable to work, the thinking goes, most patients are able to take care of their basic needs and engage in activities of daily living.

That’s not the case for me and many people I know. Due to my extreme post- exertional fatigue, muscle weakness, and orthostatic intolerance, I’m forced to spend 95% of my time lying on my back on this mattress in my small bedroom with one window. I haven’t been able to take a shower since 2005—not even with the help of a shower chair. I bathe and clean my teeth in my bed. Once a month my elderly mother washes my hair for me in the bathtub.

My parents bring all of my meals to my room on a tray. If I want to go to another upstairs bedroom I have to be pushed in my wheelchair. I haven’t been able to go downstairs or outside since November. I’ve gone years at a time unable to leave my home, even to see a doctor. I’ve had periods of being incapable of feeding myself. I spend my worst days immobilized and unable to think, watching my bedroom get light, then dark, then light again. Outside my window, the seasons change, over and over.

My incapacity is not unique. One of my friends with ME/CFS hasn’t been able to leave her home in seven years and can’t walk; she uses an electric wheelchair to get to the bathroom. Another needed a catheter in her bladder because she couldn’t get up at all. Other friends are so weak that they can’t lift a cell phone or speak above a whisper. I’m lucky that my parents are supportive; some of the worst off have no financial or physical help from their families.

This intersection of severity and poverty turns their lives into a hellish struggle for food, shelter, and other basics of survival.

As severely ill as my friends and I are, many people are considerably worse off. At least I can type a little bit, lying down, and talk on the phone a couple times per week. But some patients have virtually no contact with other human beings or the outside world; their minds are too weak to hold a thought or to interact. They spend their years in an abyss of isolation and suffering.

How many patients are like me or worse? No one knows, because our government and advocacy groups have never studied us. Most doctors don’t know we exist because we have extreme difficulty going to their offices. We are excluded from virtually every research study, meeting and conversation about this disease.

Despite the realities imposed by severe ME/CFS, our government and even our largest advocacy group continue to portray this illness as a relatively benign condition that might slow people down for a few years, but otherwise isn’t a big deal. Average patients, according to them, should be able to undergo the CDC’s recommended treatments--exercise and psychotherapy—in addition to caring for themselves and maybe even working part-time.

For me, exercise is changing my nightgown. And the exertion of leaving my home for psychotherapy sessions—transported lying down—would set me back so far that I might not be able to lift a glass of water for a year.

Our government so devalues this illness that it spends 100 times more per capita on MS research than it does on ME/CFS research. As I struggle to brush my teeth and walk a few steps to the bathroom or bedside commode, I remember that our government considers my life only 1% as valuable as the life of someone with MS.

The government claims that ME/CFS is a poorly-defined condition, but surely I have as many abnormal test results as an MS patient: an abnormal SPECT scan; a LMW protein in RNase-L; undetectable IgA and low IgG3; POTS/NMH; and evidence for numerous infections (Lyme, Bartonella, Babesia, Erlichia, Mycoplasma, C. pneumoniae, EBV, and HHV6-B). I am also XMRV-positive.

On behalf of all the severely ill patients who can’t represent themselves at CFSAC or anywhere else, I ask you to pass vigorous resolutions on the following issues:

1. The International Classification of Diseases must accurately categorize CFS. This is an extremely urgent matter because the draft proposal is due to become final within months. The International Classification of Diseases 9 Clinical Modification (ICD-9-CM), currently used in the United States, will become the ICD-10-CM in 2013 and remain our country’s medical bible for years or decades. Unfortunately, the draft proposal for the new edition continues to place CFS in a wastebasket section of the ICD for “ill-defined conditions”. Another problem is that CFS will be renamed to CFS NOS (Not Otherwise Specified) . Excluding CFS from classification as a neurological disease under G 93.3, and renaming it CFS NOS, perpetuate the myth that CFS is a vague, poorly-defined non-disease. These actions may cause us to be labeled as hypochondriacs or malingerers, may adversely affect our insurance and disability payments, and will undermine research efforts into biomedical causes of CFS.

You must strongly advise that the CDC reclassify CFS as a neurological disease under G 93.3, the code used for CFS by the rest of the world in their versions of the ICD.

Secretary Sebelius must be made aware that this is a serious issue with a looming deadline. Furthermore, please discuss additional means of pressuring the CDC to recode CFS under G 93.3.

2. In the name of equal rights for equal disability , you must pass a resolution seeking parity in funding for ME/CFS research. ME/CFS should receive funds from Congress commensurate to the serious nature of the disease, and equivalent to what is received by similarly disabling illnesses, like MS. Asking for $100 million in funds would be a step toward righting the current gross disparity in research dollars.

3. The NIH has rejected every grant proposal from the Whittemore Peterson Institute since the publication of its landmark paper in Science linking ME/CFS to the retrovirus XMRV.

Please pass a resolution stating that this is unacceptable, and investigate why this has occurred. Is it because the Special Emphasis Panel responsible for reviewing ME/CFS grants is composed of so many dentists, psychiatrists and psychologists? If so, the review process for ME/CFS grants needs to be changed, perhaps by moving ME/CFS research out of the ORWH to NIAID.

4. Please resolve that the use of the Empirical Definition (Reeves Criteria) in research is absolutely unacceptable and should not be funded by the United States government. The Empirical Definition does not correspond to any disease entity but to a hodgepodge of psychiatric conditions, simple tiredness and unwellness.

Research based on this definition, which grossly inflates the number of Americans with CFS, is virtually meaningless. Furthermore, please advise the CDC and NIH to adopt the Canadian Consensus Criteria, or the equivalent, as the its official ME/CFS definition.

Thank you. It will take me a week to recover from writing this letter, which was the only activity I could manage for several days.

Sincerely, Anonymous

A voice for the most severe ME patients

2011-05-24T19:42:00.000-07:00

It is always of interest to read about the ineptitudes of the functionaries who work for the United States Government. We must thank Dr. Joan Grobstein for her letter to Wanda Jones, outlining the abuse dished out to those ME patients who can actually move and attend a CFSAC. With these recent incongruities we are entering a zone of total absurdity and contempt. Something needs to change at the highest levels of the federal government in relation to this ME disease. They have gotten a free pass for too long and they take advantage of it with continued abuse toward these patients.

Consider for a moment the reality of this illness and of those who suffer at the very bottom. This is where the nuts and bolts of this illness presents itself and where research needs to be directed. Natalie Bouton has done a great service for the rest of us and for the uninitiated by giving us the InvestinME sponsored book "Lost Voices" which documents the most seriously ill ME patients. Soon we will be able to see an astonishingly powerful video produced by Natalie and her son Josh. It packs a wallop and presents this illness at its ground zero moment.

Another powerful articulate and sustained voice of the desperately ill has emerged recently and can be viewed here.

An open letter to Wanda Jones

2011-05-22T17:42:00.000-07:00

Dear Dr. Jones,

I am addressing my concerns to you because you were the Designated Federal Officer for the CFSAC meeting on May 10 and 11 of this year. I understand that future responsibility for CFSAC is passing to Nancy Lee, but you are responsible for the events that transpired at that meeting.
You were aware that people who were attempting to attend the CFSAC meeting were turned away from the HHS building on the second day, May 11. I know of at least eight people, myself included, who were told by the guards at the entrance to the HHS building that the CFSAC meeting was not a public meeting, and we were not permitted to enter the building unless we were on “the list”. This is obviously false. The Federal Register states that the meeting is open to the public. Some people were also told by guards that we were required to register for both days of the meeting. I have attended three previous CFSAC meetings; registration to attend the meeting has never been required. Four of those who were denied entrance on May 11 had entered the building without challenge on May 10. All of those denied entrance had travelled a considerable distance with the attendant expenditure of time, energy and money, and most were disabled patients.

Later we were told that there was a limit to how many people could be in the room because of fire codes. This clearly points to the need for planning for a larger room or some way to handle overflow. In any case, information obtained from someone in the room stated that all seats were not filled on the morning of May 11. I observed that there were many empty seats in the afternoon when I was finally allowed in.

Staff indicated that these new policies had come from you. Sick patients and their family members spent money and time to get to Washington to attend a public meeting in a building which, as taxpayers and citizens, we own. Several people insisted on their right to attend the meeting and were ultimately admitted but were forced to wait at the entrance to the building for a long period of time. At least one person assumed he would not be admitted and left. This should never have happened. It must never happen again.

Turning to another matter, I have heard of at least four instances where members of the public were prevented by CFSAC staff from giving written information to committee members and, in one instance which I myself observed, even from giving a document to another audience member:

Pat Fero was not permitted to make copies of her excellent summary of recent NIH funding available at the back of the room.

Meghan Shannon was not permitted to pass out copies of her testimony and other literature to Committee members.

Charlotte von Salis was not permitted to give copies of a petition regarding concerns about the CFIDS Association of America or copies of the Canadian Consensus Definition, which were both mentioned in her testimony, to Committee members.

I personally observed an incident where Ms. von Salis was prevented from giving a copy of the condensed version of the Canadian Consensus Definition for ME/CFS to another audience member. A CFSAC staff member told her to "close her box and put it away".

I am not an attorney, but it seems to me that these incidents are violations of these three citizens' right to free speech and assembly. Meanwhile, I’ve been told that you yourself were observed distributing Bob Miller’s testimony to Committee members. Why was his testimony treated differently than Ms. von Salis’ and Ms. Shannon’s?

At past meetings, literature and/or copies of testimony were available at the back of the room. Information was passed freely between audience members and between audience members and Committee members. Why were policies arbitrarily changed without notice at this meeting?

People spend time and money making copies of testimony and other documents for distribution to Committee members and audience members. This exchange of information is vital to the advisory role of this Committee. There is no excuse for limiting the flow of information to Committee members as long as it does not disrupt the meeting. I cannot think of any reason why patients should not be allowed to exchange documents among themselves or distribute them to interested Committee members. We live in a democracy. We have freedom of speech. We are citizens of the United States of America.

Security at the meeting was extremely tight. We were told it was because of bin Laden's death. Meghan Shannon has talked with someone who works at the FDA, and was told there was no heightened state of alert at that agency on May 10 and 11. Several people were admonished in loud voices when on their way to lavatories or the cafeteria. This is an unjustified invasion of privacy. Usually only small, naughty children and prisoners are watched and spoken to in this way. Were staff members instructed to be insulting to patients and to raise their voices when they spoke to them? I observed no misbehavior among the meeting attendees. What can possibly justify treating law-abiding citizens, many of them disabled, like naughty children or criminals?

I was not permitted to remain in the conference room during lunch on the first day, which I wanted to do to get a little peace and quiet. Is this reasonable accommodation for disability? We have not been subjected to this level of scrutiny at past meetings. It is not clear why a group of disabled patients are treated as though they are a threat their own government. Our goal is to educate government officials about the severity of our disease and contribute to the solutions for the problems of one million Americans with ME/CFS. The current treatment of ME/CFS patients is a national disgrace.

The events that happened at the CFSAC meeting on May 10 and May 11, 2011, should never happen again. Attendees should not be shouted at. Attendees should be free to distribute literature to Committee members and to each other. Attendees should be allowed to rest in the conference room whenever they need to. Attendees should be free to come and go to the cafeteria and lavatories at will. These are basic rights. Above all, this is a public meeting. All who wish to attend should be accommodated. It is surprising to me that these issues even have to be addressed. Who would think that American citizens would be treated in this way?

Finally, all of the Committee’s recommendations should be reviewed at the end of every meeting. Most patients are not able to watch or attend the entire two days of meetings. When I spoke to several people who attended or watched the meeting, including two Committee members, I got several different versions of the recommendations. Even the two Committee members differed in what they thought the recommendations were. It is important that everyone involved in the meeting have a clear idea of what the Committee’s recommendations are, as well as what progress has been made on previous recommendations. It is very important to review the recommendations during the time allotted for that purpose in the last session of the meeting, so that everyone understands them. Given that the meeting was adjourned almost an hour early, there was plenty of time to do so at the May meeting.

The recommendations from the May meeting are not yet listed on the CFSAC website. When will the recommendations be posted?

I am posting this letter on the internet, because I think it is important that people know what occurred at this meeting. I have also sent an abbreviated version to the White House. Many people will be interested in your reply.

Of course, many people are grateful
for what you have done for the ME/CFS patient community in the past
. It is unfortunate to have to ask you to address these issues now.

Sincerely,
Joan Grobstein, M.D.

Please vote for the Whittemore Peterson Institute and ME on Chase Community Giving!

2011-05-21T12:26:00.000-07:00

Vote for WHITTEMORE PETERSON INSTITUTE FOR NEURO IMMUNE DISEASES on Chase Community Giving!

By NKR:

Every single vote counts! If you are on Facebook please take just a few seconds of your time to vote for the WPI - and then please encourage as many friends as you can to vote too. They need to beat several other organizations also vying for the same funds in order to win - if everyone with ME voted, they would win easily!

STEP-BY-STEP Instructions:

1. From your Facebook page, go to Chase Community Giving:

http://www.facebook.com/ChaseCommunityGiving.

2. "Like" Chase Community Giving by clicking on the "Like" button. (If you have done this before, no need to repeat)

3. Now search for Whittemore Peterson Institute for Neuro-Immune Disease.

4. Cast your vote for WPI by clicking the "Vote Now!" button. That's it! Easy!

If you would like more information about WPI and their work, please go here: http://www.wpinstitute.org/help/index.html

Thank you so much!

InvestinME message from Annette Whittemore

2011-05-20T22:43:00.000-07:00

Hello Everyone,

The Invest in ME Conference just ended a few hours ago. This conference brought new and exciting ressearch to ME that is soon to be published. Dr. David Bell discussed how the patients that he saw as children are now adults ...around 40 years old. Several have cancer, while others are still severly ill, but the majority are coping and say they are well but are actually still living with CFS. Dr. Demeirlier continues his important XMRV research, in Belgium and around the EU, finding many of the sickest patients positive for the retrovirus. Dr. Mikovits showed more "footprints" of XMRV infection from the patient's immune system data and described how XMRV seems to act more like HTLV than HIV. Dr. Bieger, a delightful iimunologist from Germany, is doing exciting work with XMRV and EBV. The rest will have to wait until the conference DVD is completed.

Discussions following the conference were very lively as those in the audience stated their frustration with the British medical/political establishment at not having adequate medical care in the UK. Howeveri, all in all, it was the best conference to date. I am overwhelmed with emotion over the expressions of thankfullness for all that the WPI is doing to bring awareness of this disease to the rest of the world. I wish we could all get together in one place to share stories and meet face to face. I realize how connected we've become, in our quest to find the answers to this devastating disease. I'll be flying home tomorrow while Judy travels to Ireland to give another presentation and more hope to those who suffer. Goodnight all! Annette