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.


  1. You're right. This is a beautifully written, articulate and thorough message. It should be sent to everyone in the Dept. of Health and Human Services, and to every Congressperson, at least.

    The CAA should wake up and represent the reality of those living with CFS.

    The word "fatigue" is about as accurate as calling a mountain a molehill. And this is a mountain.

    Glad that the author was able to write this, and hope it gets to those who should read it.

  2. Anonymous #3, I am with you 100%, I agree strongly, and I want to be your friend.

    Extraordinary. Superb. Thank you.

    All advocates need to read this IMO, not just the rest of the world. Those above 10 -- please read this.

    Thanks, Chris.

  3. What a moving testimony. Thankyou for taking the time & spending the energy on sharing your story. I agree lets drop the name 'CFS' as it just trivializes the complex & debilitating nature of this illness.

  4. As a person with severe ME myself, I am grateful to Anonymous #3 for what I consider to be testifying on my behalf, and in fact on behalf of a great many severely affected patients. I share her frustration with the lack of representation severe patients and their concerns have been given by patient advocacy groups and by researchers. Severe ME patients should be the face of advocates' publicity and the go-to population for research studies, yet we are seldom more than an asterisk in a publication or pamphlet, if we appear at all.

    Sometimes, like Anon 3, I think even some of our best known clinicians and advocacy groups don't understand the disease I have, and have never really seen, or really listened to, a severe ME patient in their careers... How else to explain, for example, their blanket exercise recommendations which, questionable as they are for the majority, ought to be contraindicated for a sizable minority of the severely affected?

    People at my level of illness are less vocal in the patient community because we rarely have the energy to make our voices heard and because it's painful to dwell, over and over again, on what our daily material existences are like. My thanks again to Anonymous # 3 for finding the energy and inner strength to struggle against the silence. I can only hope that the Chronic Fatigue Syndrome Advisory Committee accepts her challenge.

  5. (Edit - in the post above, I meant "exercise recommendations which, questionable as they are for the majority of patients, *ought to be contraindicated for the severely affected*..")

  6. A huge thank you to Anon #3 from another severely afflicted patient.

    A point of advocacy that rarely surfaces is the difficulty of getting custodial care (home health aides who provide help with cooking, cleaning, bathing and laundry.) Custodial care is not typically covered by private insurance for more than a temporary basis and must be paid for out of pocket. Patients on Medicaid can get custodial care, if they have a primary care physician willing to vouch for their level of disability. (And we all know what a crap shoot that is!). It is a difficult, paperwork-filled process that faces the risk of rejection on basis of a CFS diagnosis alone.

    At my worst, my needs were equivalent to a patient in hospice. I would have greatly welcomed type of care had it been available. Imagine my insurance company's response to a CFS patient's request for hospice care?

    I also echo D.Y.'s sentiments that some of the physicians and advocates in the ME/CFS community itself are oblivious to the needs of the severely ill. Recommendations of "gentle bed strethes" (CAA) and "five minutes of walking" (Klimas) to people who may not be able to rise and use the toilet, and who are desperately trying to figure out how to get food, are patently absurd.

    Thanks to Mr. Cairns and anon #3 for shedding light on this dark corner of the patient community.

  7. I wholly agree. Except the criteria should be stricter than what is put out in the ICC. 50% reduction of activity is still way too subjective. Research cohorts should primarily consist of only objective criteria. I'll toss out two areas that should be mandatory for inclusion: clear proven immune and neurological dysfunction.

    Clearly, the CFS bucket is picking up either a huge range of disease or is picking up multiple diseases. The bucket must be emptied to make any progress.

  8. Excellent and powerful testimony. Thanks for sharing it, and thanks to Anonymous #3 for writing it.

  9. Oh my gosh. Thank you Annonymous #3. This description is soon to be me! I also have severe ME, although I have not been scored for the disability scale. Today I lie in bed, barely able to roll over. My husband is my carer. He bathes me, and feeds me. Yes, I am unable to lift a spoon to my mouth many days. I am aware that he is weakening. It is very frightening. I think I will have to be in a nursing home soon. What will my diagnosis be, I wonder... when will someone realize that we are as ill as any AIDS pt I took care of in my past life as a Registered Nurse? Annonymous shows me how remiss I have been in not submitting testimony. This is the wake-up call I needed to write, and write more. For as long as I am able...

  10. I say that those of us with moderate ME need an "Occupy Wall Street" type movement. Since our world consists mostly of a bed with four walls and a roof, all we need are tents and sleeping bags and facilities and we can pitch camp outside the NIH or the CDC or across the street from the homes of the dignataries that say they are listening. We need to post the lab results that are "not normal"-the ones that doctors do not preform unless you ask for them. Is there anyone with ME who has a robust, functioning immune system. I was told that my NK cells were at 16, when they should be about 200. My Epstein-Barr early antigen viral titers are "above the range" that is measured. Human Herpes VI as well.
    It is the combination of immune defiency and escalated viral titers that I understand is causing my illness. Routine lab tests show that ME patients are "normal". The routine lyme test came back negative. A "PCR" whole blood test came back positive and was confirmed by the Southern Blot Test. The doctor explained that because i am immune defiecient, I am not producing enough antibodies to Lyme and therefore, the standard test would not be accurate. We need to put together a list of tests that document that we are iill. I was told by one doctor that ME is a "spiritual
    issue". She said that many people have elevated viral titers, but are "healthy" and "functiional". I asked if my lab results showed that I was an atheist. She was not amused. And I wish I did believe, If this doctor had run tests to document immune defiecency, we would have had something to talk about. Finally, those with any connection to the press,
    even People magazine or morning news programs, need to use their connections to get the message out to a wider audience. 60 Minutes devoted 15 minutes to the illness in the mid 1980's. I looked at those CFS'ers with the skepticism the journalist engendered. i did not imagine that 20 years later I would join their ranks. it is time for 60 Minutes to do an update.

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  11. I hope that this testimony becomes a rallying cry.

    I don't want it to be a blip.

  12. this is stunningly written and exceptional powerful. thank you for writing it. -- rivka

  13. Yes, agree, this should be a rallying cry. Can we help to get it around to websites and list-serves for people with CFS, to health care professionals -- doctors, researchers, and to government agencies and other organizations?

    I also wish we could do an "Occupy CDC" or "Occupy NIH." It would be such a boost to us and it would publicize the reality of the disease.

    ACT-UP did a lot to bring attention to HIV/AIDS, and to get research and treatment appeals taken seriously -- and to pressure government agences to DO SOMETHING! It took a lot of work but they did it.

    This would help us, too. But we are low or no energy.

    Maybe we could use the Internet more to get this beautiful and truthful statement out. It's an appeal really for action.

    I could relate to the blog commenter who raised a problem of how to get food. I would not have food most days, except that I can order it delivered in my city and I have a helpful neighbor. It is a problem, and so is getting bills paid on time and library books returned on time and more. There is no help if one doesn't have friends and relatives to pitch in.

  14. An FYI: Posted at several ME/CFS websites today that Dr. Mikovits and Dr. Ruscetti will be working at NCI in Frederick, Md. in collaboration with Dr. Lipkin on the study which Dr. Lipkin is leading.

  15. I agree, most doctors seem to ignore you when you say you have CFS or ME. We need better research. It is painful. I too have suffered and am feeling tons better. I have became proactive and developed a website to expose the causes related to CFS. There is a bunch of valueable information on there. . Keep up the post. I enjoy them.

  16. I am supporting your testimony. I really like this testimony.

  17. Just a point: All CFSAC meetings have been streamed live since May 2009 with videos and auto subtitles published on the CFSAC website a few days later. The November meeting was not streamed live due, apparently, to budget contraints. For the November meeting only a live phone link was available. Videos for both Day One and Day Two were posted on YouTube on behalf of CFSAC on November 17 and 18 and can be found here:

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