Dr. Denise Faustman, researcher

Since 1990, for unspecified reasons, I have been reading every day about diabetes. Over that time, I have followed diabetes research and treatment closely. I have learned a great deal about the illness, but I know very little about the actual science of the research.

Since about 2002 I have been reading extensively about ME/CFS and other immune dysfunction illnesses. Again, I have no scientific knowledge upon which to draw.

While I have no scientific or medical background, I believe that it is possible to gain a "feel" for these illnesses- diabetes and ME/CFS -  in spite of being scientifically ignorant. In both situations I have no built-in prejudices and have no vested economic or career interest in either field that might interfere with my judgements. In other words, I have no connection to the "Industry" of these illnesses. Most importantly I have always tried to connect to gifted people who can flesh out my own "insufficiencies".

Years ago I was privileged to meet Al Mann, the founder of Minimed. With his small, flexible and innovative company, Minimed, Al Mann greatly improved the maintenance possibilities of diabetic patients. Al Mann was an amazing man who cared deeply about patients - and it was a sad day when Minimed was sucked up by the large Minnesota company, Medtronic.

Early on, in learning about diabetes. I stumbled upon the work of Dr. Richard Bernstein. At the time Dr. Bernstein and his ideas about diet and diabetes were highly discredited by mainstream endocrinologists. Since that time, Dr. Bernstein's ideas have gained great currency. His book can be purchased here. There are intimations of Dr. Bernstein's ideas in Dr. Joseph Burrascano's imploring Lyme patients to ditch the carbs.

Diabetes, at the moment, is a maintenance illness. With slightly more information, perhaps ME/CFS can reach this status? More needs to be known about the etiology of ME/CFS.

In this post I am unable to list all the diabetes researchers that I admire and follow. Instead I would like to focus on one of them: Dr. Denise Faustman of Massachusetts General Hospital. I have written a previous blog post on Dr. Faustman here.

Dr. Faustman is back in the news this week with a very small, early stage paper publication in PLoS ONE.  The proposed treatment, a relatively safe tuberculosis vaccine in use for eighty years, is apt to yield no profits for the pharmaceutical industry.

The hope is that this vaccine can shut down the autoimmune reaction in type 1 diabetes (and perhaps other autoimmune illnesses). Perhaps ME/CFS researchers Mella, Fluge, Peterson, and Kolgenik are reading about Dr. Faustman's work? I certainly hope so.

Several articles on Dr. Faustman's paper can be found here and here.

From the Bloomberg article:

"Faustman and her colleagues at Massachusetts General in Boston are working to get the vaccine to market. After their early findings in studies with mice, she said they tried to interest every major drug maker in developing the vaccine as a possible cure for diabetes. All told her there wasn't enough money to be made in a cure that used an inexpensive, generically available vaccine, Faustman said."

This publication is very exciting news for those interested in a solution for type 1 diabetes. However major questions rear their ugly heads. Why is there so much resistance to this research? Why is Dr. Faustman so isolated with this research after so many years? Who is going to finance further research? In the big picture, these questions are disturbing - and yet they are so familiar, familiar also to those who know the history of research into ME/CFS.

Dr. Faustman outlines her research and answers some pressing questions in several youtube videos, the first from 2012, the second from the year before.






Dr. Faustman is a very impressive researcher. She does not look like she is going to be dislodged from pursuing her interests. She gives me hope that there are other individuals out there looking for unique solutions to complicated medical questions - and specifically that there will be some spill-over into ME/CFS/lyme diseases.

"The Garden"

In the course of my job as patient advocate for my daughter, I travel to various places - CA, London, New York City, Ottawa, Brussels. Most of the time I am mired down in patient advocate work, which is only partially rewarding. One positive reality is that I do get to meet many extraordinary people - and this could certainly be the subject of another and longer post. In these travels there are moments of relief -  ducking into the National Gallery to view my favorite painting (Titian's The Death of Acteon), a hot dog with mustard and sauerkraut on the corner of 69th and Lexington on a sweltering day, checking out the Gauguin painting at the Indianapolis Museum of Art, or going to an Orchestra concert in Minneapolis.

Gauguin, 1889

Throughout the mid-West there are these extraordinary museums reflecting broad and deep collecting interests of past inhabitants of these towns - Minneapolis, Detroit, Cleveland, Cincinnati, and St. Louis.

This summer I had the privilege of visiting with Dr. Dale Guyer at his Institute of Molecular Medicine in Indianapolis. I really admire this clinician. I have learned fundamental approaches to ME/CFS from him. At the end of my time with him, I asked if I could have a picture taken with him. Dr. Guyer suggested that we go out into "The Garden" for the picture.

I stepped out back of his clinic and encountered an astonishing world.

Chris Cairns and Dr. Dale Guyer

In the approximately 1/2 acre behind his clinic, Dr. Guyer has planted a vast array of conifers and Japanese Maples. Dr. Guyer explained to me that the two plants directly behind us in the above photo were recently added and are of a species that is quite rare, yet can exist in the environment of Indianapolis.

I can only assume that Dr. Guyer has made every single decision in regards to the plantings and combinations of this rare and beautiful garden. One can discern from the photos the care taken regarding color, variety, size and placement of each and every plant, stone and path. The reality is very powerful. Everything is calculated to deliver the greatest visual and emotional impact. Nothing is haphazard and the entirety has a sense of oneness, of great unity. It is like a gigantic three dimensional painting.

It occurs to me also that this garden is an extension of Dr. Guyer's skill and experience as a physician. Certainly the garden gives a clear insight into the complexity of his personality. His staff jokes that when he gets really refined in his medical practice, he will just send his patients out back to sit, resonate and heal in the environment.

I spent some time walking around "The Garden" and took a few pictures. My only regret was that I did not stay longer, and I have thought about this space and its effect on me a great deal since then. It is very seldom that I am swept away by a spot and enter into a suspended space where I am lost or do not know where I am. This is the profound effect of this garden as you walk into its midst. Suddenly you are transported to - who knows where? It is another world, a world suspended from the raucous existence of modern life.

Dr. Guyer's garden reminded me of another favorite destination of mine, a place that I have not been for many years, but to which I yearn to return: Bok Gardens and Tower in Lake Wales, FL. Although Bok Tower is much different than Dr. Guyer's garden, it has the same powerful effect on the visitor. Much of the impact comes from not expecting it. Bok Garden takes you into a suspended world where you are suddenly and completely detached from yourself. I suppose many people, like me, return there for solace and removal from life's travails - and to reacquire a bit of peace or peace of mind.

I asked Dr. Guyer what he does in his Garden? He says that he sits there in the evening with a glass of wine.

It is not possible this morning to leave this appreciation of Dr. Dale Guyer and his garden without mentioning a recent article that appeared this morning. The article is found here and concerns gut ecology. Both Dr. Guyer and Dr. Kenny De Meirleir  have emphasized the need to heal the gut. It is a central issue in ME/CFS to both of them. Recent research into the gut environment begins to confirm what a number of ME/CFS physicians and researchers believe - that gut ecology might very well be at the center of this illness. If one wonders - as I do - why MAF 314 brings improvement to the patients who have access to it, this article suggests an answer.

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.

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.

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.

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.

Voices from the Shadows

“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.