Thursday, December 29, 2011
Saturday, December 10, 2011
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.
Wednesday, December 7, 2011
Thursday, November 17, 2011
Wednesday, September 21, 2011
“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 22nd. 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.
Sunday, July 24, 2011
Friday, July 22, 2011
Saturday, June 25, 2011
Saturday, May 28, 2011
May 10, 2011 To the Members of the Chronic Fatigue Syndrome Advisory Committee:
In 1994, I was a healthy 20-year-old college student who led an active, happy life. One afternoon in June, I was struck down by ME/CFS. Over the years I got gradually worse until I became essentially bedbound in 1999 and again in 2005.
My plans for graduate school, a career, marriage, and children have been on hold for 17 years..
I think there is a common misconception, even among doctors and researchers well-versed in ME/CFS, that this illness is not especially disabling. Even if they are unable to work, the thinking goes, most patients are able to take care of their basic needs and engage in activities of daily living.
That’s not the case for me and many people I know. Due to my extreme post- exertional fatigue, muscle weakness, and orthostatic intolerance, I’m forced to spend 95% of my time lying on my back on this mattress in my small bedroom with one window. I haven’t been able to take a shower since 2005—not even with the help of a shower chair. I bathe and clean my teeth in my bed. Once a month my elderly mother washes my hair for me in the bathtub.
My parents bring all of my meals to my room on a tray. If I want to go to another upstairs bedroom I have to be pushed in my wheelchair. I haven’t been able to go downstairs or outside since November. I’ve gone years at a time unable to leave my home, even to see a doctor. I’ve had periods of being incapable of feeding myself. I spend my worst days immobilized and unable to think, watching my bedroom get light, then dark, then light again. Outside my window, the seasons change, over and over.
My incapacity is not unique. One of my friends with ME/CFS hasn’t been able to leave her home in seven years and can’t walk; she uses an electric wheelchair to get to the bathroom. Another needed a catheter in her bladder because she couldn’t get up at all. Other friends are so weak that they can’t lift a cell phone or speak above a whisper. I’m lucky that my parents are supportive; some of the worst off have no financial or physical help from their families.
This intersection of severity and poverty turns their lives into a hellish struggle for food, shelter, and other basics of survival.
As severely ill as my friends and I are, many people are considerably worse off. At least I can type a little bit, lying down, and talk on the phone a couple times per week. But some patients have virtually no contact with other human beings or the outside world; their minds are too weak to hold a thought or to interact. They spend their years in an abyss of isolation and suffering.
How many patients are like me or worse? No one knows, because our government and advocacy groups have never studied us. Most doctors don’t know we exist because we have extreme difficulty going to their offices. We are excluded from virtually every research study, meeting and conversation about this disease.
Despite the realities imposed by severe ME/CFS, our government and even our largest advocacy group continue to portray this illness as a relatively benign condition that might slow people down for a few years, but otherwise isn’t a big deal. Average patients, according to them, should be able to undergo the CDC’s recommended treatments--exercise and psychotherapy—in addition to caring for themselves and maybe even working part-time.
For me, exercise is changing my nightgown. And the exertion of leaving my home for psychotherapy sessions—transported lying down—would set me back so far that I might not be able to lift a glass of water for a year.
Our government so devalues this illness that it spends 100 times more per capita on MS research than it does on ME/CFS research. As I struggle to brush my teeth and walk a few steps to the bathroom or bedside commode, I remember that our government considers my life only 1% as valuable as the life of someone with MS.
The government claims that ME/CFS is a poorly-defined condition, but surely I have as many abnormal test results as an MS patient: an abnormal SPECT scan; a LMW protein in RNase-L; undetectable IgA and low IgG3; POTS/NMH; and evidence for numerous infections (Lyme, Bartonella, Babesia, Erlichia, Mycoplasma, C. pneumoniae, EBV, and HHV6-B). I am also XMRV-positive.
On behalf of all the severely ill patients who can’t represent themselves at CFSAC or anywhere else, I ask you to pass vigorous resolutions on the following issues:
1. The International Classification of Diseases must accurately categorize CFS. This is an extremely urgent matter because the draft proposal is due to become final within months. The International Classification of Diseases 9 Clinical Modification (ICD-9-CM), currently used in the United States, will become the ICD-10-CM in 2013 and remain our country’s medical bible for years or decades. Unfortunately, the draft proposal for the new edition continues to place CFS in a wastebasket section of the ICD for “ill-defined conditions”. Another problem is that CFS will be renamed to CFS NOS (Not Otherwise Specified) . Excluding CFS from classification as a neurological disease under G 93.3, and renaming it CFS NOS, perpetuate the myth that CFS is a vague, poorly-defined non-disease. These actions may cause us to be labeled as hypochondriacs or malingerers, may adversely affect our insurance and disability payments, and will undermine research efforts into biomedical causes of CFS.
You must strongly advise that the CDC reclassify CFS as a neurological disease under G 93.3, the code used for CFS by the rest of the world in their versions of the ICD.
Secretary Sebelius must be made aware that this is a serious issue with a looming deadline. Furthermore, please discuss additional means of pressuring the CDC to recode CFS under G 93.3.
2. In the name of equal rights for equal disability , you must pass a resolution seeking parity in funding for ME/CFS research. ME/CFS should receive funds from Congress commensurate to the serious nature of the disease, and equivalent to what is received by similarly disabling illnesses, like MS. Asking for $100 million in funds would be a step toward righting the current gross disparity in research dollars.
3. The NIH has rejected every grant proposal from the Whittemore Peterson Institute since the publication of its landmark paper in Science linking ME/CFS to the retrovirus XMRV.
Please pass a resolution stating that this is unacceptable, and investigate why this has occurred. Is it because the Special Emphasis Panel responsible for reviewing ME/CFS grants is composed of so many dentists, psychiatrists and psychologists? If so, the review process for ME/CFS grants needs to be changed, perhaps by moving ME/CFS research out of the ORWH to NIAID.
4. Please resolve that the use of the Empirical Definition (Reeves Criteria) in research is absolutely unacceptable and should not be funded by the United States government. The Empirical Definition does not correspond to any disease entity but to a hodgepodge of psychiatric conditions, simple tiredness and unwellness.
Research based on this definition, which grossly inflates the number of Americans with CFS, is virtually meaningless. Furthermore, please advise the CDC and NIH to adopt the Canadian Consensus Criteria, or the equivalent, as the its official ME/CFS definition.
Thank you. It will take me a week to recover from writing this letter, which was the only activity I could manage for several days.