Thursday, December 29, 2011

Myalgic Encephalomyelitis - an impact video

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.

Saturday, December 10, 2011

CFSAC Testimony of Anonymous #3

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.

Friday, December 9, 2011

Congratulations to Dr. Nancy Klimas

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.

Wednesday, December 7, 2011

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

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

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.

Sunday, December 4, 2011

Two items - Sunday December 4

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.

Friday, November 25, 2011

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

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.

Monday, November 21, 2011

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

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.

Thursday, November 17, 2011

Mt. Sinai conference - Rich van Konynenburg

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 Merad. 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.

Monday, November 7, 2011

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

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.

Monday, October 24, 2011

Rituximab and the Press

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?

Wednesday, October 19, 2011


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.

Thursday, October 6, 2011

IACFSME Conference - Ottawa

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.