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Mary Schweitzer's Essays on ME/CFS
Other testimony I have given to the CFSCC and CFSAC

Testimony to the
Chronic Fatigue Syndrome Advisory Committee (CFSAC)
of the
Department of Health and Human Services (DHHS)
United States Federal Government
Washington, DC
November 20-21, 2006

Mary M. Schweitzer, Ph.D.

Thank you for permitting me time to speak [30 minutes instead of the usual 5].

I would like to mention the very nice website on CFS at the Office of Research on Women's Health (ORWH) at NIH. Perhaps you could link to it from your home page. I think it was well done.

I have some handouts for you.

First, I have presented a summary of My Life with M.E..

Next, I have noticed that the CDC has added Myalgic Encephalomyelitis (M.E.) to their website and suggested that it is not the same thing as CFS. I would like to take this occasion to offer the "gold standard" of M.E. definitions to the CDC to use: Melvin Ramsay's description of M.E. from his textbook on M.E., published in 1986 and revised in 1988. Unfortunately, Dr. Ramsay passed away in 1990.

Conversely, I was not pleased to find neurasthenia on the CDC's website - in fact, listed right next to M.E. The American Psychiatric Association does not recognize neurasthenia (or hysteria) as modern diagnoses. You will not find either in DSM-IV - or DSM-III for that matter. It does not belong on a U.S. CDC website.

The CDC website has taken on a larger role now that there has been a public relations campaign to educate people about CFS. I think the overall impact of the campaign has been positive. However, once patients and their doctors "get aware", the only place they are told to go is the CDC's website or the CDC toolkit. We will get to the toolkit later in this talk. Right now I want to look at the website.

The next handout is the Bibliography from the summary version of the Canadian consensus document for diagnosing and treating ME/CFS, by Dr. Bruce Carruthers and Marjorie van de Sande. The endnotes for the complete article amount to 130 references, so I have only included the shorter version.

Then I have a handout of the effective bibliography from the CDC's website for CFS. It is every article that is included on what should be an informational website.

There is only one article in common between the two: the article with the 1994 Fukuda definition. The CDC website does not include the article itself (although it used to), nor does it include a link to the article.

Let me just point out a few articles in the Canadian document here. There is the Komaroff survey of the literature that was published in the American Journal of Medicine in 2000. That was six years ago, and that was when Dr. Komaroff (who is on this committee) first made the statement that the debate over the pysical nature of this disease should be over. I note that he repeated that statement in the press conference that was called by CDC earlier this month - except that in the intervening 6 years, the number of scientific journal articles has grown from the 2,000 mentioned in the AJM article, to over 4,000 today.

Why isn't that article on the CDC's website? Or, for that matter, the origial Komaroff article that first demonstrated brain abnormalities in patients with CFS?

I would also like to point out the Rowe and Calkins article published in JAMA (the Journal of the American Medical Association) in 1995. You will have to look under "b" for Bouholaigah, the first author. This was a pathbreaking article, and there has been a lot more research in this area. The CDC just published an article denying the validity of any connection between NMH/POTS and CFS - one would think at least some of the literature on this subject by other authors should be included for balance and in the spirit of scientific debate.

The Peckerman article raises a number of concerns about undiagnosed heart conditions in patients with CFS. This strikes me as important information for any clinical physician to know. It is in the Canadian handout - but not the CDC's website.

I also notice that the Canadian handout includes the Jason study of 1999. Lenny Jason and the DePaul demographers used a different approach than the CDC did in Wichita. Although the studies were conducted at the same time, the Wichita study estimated only 500,000 patients with CFS, whereas the Jason study estimated 800,000. Since many researchers use the Jason study, it should at least be included on the website.

Here is the point. When you are directing people to an informational website - particularly professionals - you should have an informational bibliography. There is nothing wrong with having a separate website to show that the CDC has been working on the subject. But it cannot be the only - or even the main - bibliography for this particular purpose. It must not be the only research to which the curious researcher, or physician, or science reporter, is referred. That is not the purpose of the CDC.

My suggestion is that the CFSAC itself form a subcommittee to start with the Canadian bibliography and put together an unbiased overview of the research for the CFS toolkit and the CFS website.

Back to the CDC website as informational. No matter how good the PR campaign was, it all comes back to one sentence in the CDC toolkit for professionals:

"As yet, there are no diagnostic tests or laboratory markers for CFS, and its pathophysiology is unknown."

The Fukuda article concluded that the development of markers would create subgroups of patients who could be diagnosed and studied using these tests and markers.

And that is precisely what is happening. I represent perhaps four subgroups:

  1. I have NMH/POTS,
  2. I have Myalgic Encephalomyelitis - using Ramsay's definition,
  3. I have the 37kDa Rnase-L Factor, and
  4. I have Human herpesvirus 6, variant A (HHV-6A). For that matter, I had problems with recurring EBV. There are many viruses we never tested for. How many did I have? I do not know.

As I mentioned in my short autobiography, I have been helped by receiving treatment for these conditions. The treatment I receive for HHV-6A and the Rnase-L Factor has restored me from a Karnovsky score of 30 (on a scale where 0 is dead and 100 is perfectly healthy) to a 70 - quite a spectacular jump. However, I have to stay on it for the foreseeable future, and it is not inexpensive. It costs $20,000/year for this drug alone (and the co-pays).

There is no way that most patients can come close to the diagnoses and treatments I have received. They are too expensive, and as long as the CDC denies their existence, they aren't covered by insurance.

I should point out that if insurance covered it and others could get it, the company could make it in larger batches and the cost of each treatment would plummet dramatically. Insurors should not take the cost I have to pay as indicative of their costs. Furthermore, had I been treated earlier, I believe I could have gone back to work full time. A 30 to a 70 is pretty good - suppose I had only been a 50 or 60 when I began treatment? We are being long-run foolish here.

I have so many questions about all of this! How did I get it? Which came first? Why doesn't anyone else in my family have any of these? Is my daughter at partiular risk?

But the research is still at the stage of trying to get attention - a decade after all of these were known (and a half-century since M.E. was recognized and named.)

The suggestion that antidepressants, painkillers, cognitive behavior therapy and graded exercise are the only known treatments for someone diagnosed with this disease is simply wrong. There are identifiable subgroups, and identifiable treatments for those subgroups.

Meghan Shannon will be coming along after me. She was stricken with an adenovirus 25 years ago. That is yet another subgroup. I have a dear friend who perhaps had coxsackie and passed it to her son. Why are we not studying these things? And if we have treatment to offer, why is that treatment not available?

One of the six pages in the CFS Toolkit (front and back) is devoted entirely to cognitive behavior therapy. Pharmaceutical intervention rates a scant paragraph by comparison.

There is a lot about exercise - one side of a page. Some of is it common sense - the type of coping skills I learned from Dr. Marsha Wallace about staying within my energy envelope. But some of it is not. In the section on "Severely Ill Patients", CDC does acknowledge that "A subset of people with CFS are so severely ill that they are largely housebound or bedbound." I was appreciative of that, because before being treated with an immunemodulator/antiviral, I fell in that category. But CDC continues: "They require special attention, including a modified approach to exercise. Hand stretches and picking up and grasping objects may be all that can be managed at first." (at first?)

"Gradually increasing activity to the point patients can handle essential activities of daily living - getting up, personal hygiene and dressing - is the next step."

I invite all to read my short autobiography and ask - was that really what I needed when I was so sick with this disease? The assumption that an extremely ill person can - through willpower - become self-suffcient is cruel. It is also wrong.

The section ends: "Focusing on improving flexibility and minmizinmg the impact of deconditioning so patients can increase function enough to manage basic activities is the goal with severely ill patients."

NO. The goal is treatment. The goal is to find out what is wrong with these patients. What helped me was to be diagnosed with HHV-6A and the Rnase-L Factor, and then to receive treatment for it. Then and only then could I start any kind of graded exercise program - any kind. First we had to take care of the disease. The disease is not "deconditioning."

The disease is not fatigue.

As I said in the autobiography, being tired was not what made me disabled. Not being able to read, not being able to communicate, not being able to drive a car, not being able to walk across a room because my balance was so bad - and eventually because I was so weak, and the constant pain behind my eyes and in the back of my neck, and the headaches ...

I was not sick because I was tired. I was sick because my brain was broken.

Finally, I have handed out to everyone a copy of the summary version by Dr. Bruce Carruthers and Marjorie Van de Sande of the Canadian Consensus M.E./CFS diagnostic and treatment criteria. That can be found at the following website: The National ME/FMS Society of Canada.

Lenny Jason published a study that "examined differences between patients meeting the Canadian clinical and the Fukuda criteria for ME/CFS with people who had clinically fatiguing illnesses explained by a psychiatric condition. The Canadian Clincal Criteria selected out patients with more physical functional impairment, more fatigue/weakness, neurocognitive, and neurological symptoms, and had more variables that signiicantly differentiated them from the psychiatric somparison group than did the Fukuda criteria. The findings do support that the Canadian criteria point to the potential utility in designating post-exertional malaise-fatigue, sleep dysfunction, pain, clinical neurocognitive, and clinical autonomic/neuroimmunoendocrine symptoms as major criteria."

The groundwork has been laid. It will save time and money to make use of this document, and can help us get the information out to physicians as soon as possible.

This is an urgent issue. Casey Fero's brief 23 years on this earth were spent while the CDC and NIH ignored the growing evidence about this killer disease. His death from viral myocarditis was unnecessary. But maybe we can prevent it from happening to others.

How can we stop this disease from spreading further and faster? That should be the question on everybody's minds - particularly the CDC.

The PR campaign was a good start - but only a start. If we do not work now with the information we already have into subgroups, physical symptoms, tests, and treatments, then more lives will be lost to this disease - in the sense that most of those with this disease have no real life, and in the sense that some will die from the disease while we are wasting precious time.

It could be your children next.

I have tried to speak from my heart, and for the silent voices of people struck down by this illness. It has been my fortune to get testing and treatment that has made me better. All I want for my friends is for them to get better, too.

Thank you again for giving me this time.

Mary M. Schweitzer, Ph.D. Newark, Delaware, USA

Links to the handouts:
  1. My life with M.E.
  2. Melvin Ramsay's definition of M.E., 1986
  3. Canadian ME/CFS Consensus Bibliography
  4. CDC Effective Bibliography from CFS Website
  5. Summary of the Consensus Criteria for Diagnosing ME/CFS, by Bruce Carruthers and Marjorie van de Sande

Go to the CFIDS/M.E. Information Page
Mary Schweitzer's Essays on ME/CFS
Other testimony I have given to the CFSCC and CFSAC