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Testimony before the
Chronic Fatigue Syndrome Coordinating Committee (CFSCC) of the
U.S. Department of Health and Human Services
Washington, DC
24 April 2006

© Mary M. Schweitzer, Ph.D.

Thank you for allowing me time to speak.

Today I am going to talk about the disease Myalgic Encephalomyelitis, or M.E.; the Rnase-L Factor as a diagnostic biomarker, and the consensus documents that bind M.E. and CFS together with a well-conceived set of diagnostic criteria and treatment protocols.

Many people in this room are probably under the misperception that M.E. is merely an antique name for the condition Stephen Straus named “Chronic Fatigue Syndrome,” or CFS, in 1986, which was formally recognized by the CDC in 1988 after the Holmes committee met.

The purpose of the Holmes committee was to identify or name the cluster outbreak of disease that had occurred at Incline Village, Lake Tahoe, Nevada, and the patients being newly diagnosed with this symptom cluster in the United States. The press had already created its own names for the disease: “Yuppie Flu” (not because the victims were yuppies, but because Lake Tahoe is a resort town) and then AIDS-Lite.

However, had those patients lived in Sussex, England, instead of Nevada, they would have received the diagnosis of M.E. from the beginning. The victims of the cluster outbreaks all fit the definition of that disease. But the NIH and CDC were determined to present the cluster outbreak as something “new”.

There were at least two people at the Holmes Committee meeting who knew that this “new” disease was not new at all, but it was the same disease being diagnosed in the United Kingdom as Myalgic Encephalomyelitis. Their advice was rejected. The formal reason was that there was no evidence of “itis” (or inflammation). In retrospect, that was a rather flip response to a disease that had been diagnosed – at the time – for over thirty years in a fellow English-speaking country whose medical professionals (I would presume) share the same rigorous training as those in the United States. We are not talking about slipping over borders to receive ground apricots and coffee enemas. The last time I looked, medicine in England was not that much different from medicine in the United States. Yet the CDC and NIH responded as if we were at war with England, or as if it was a Third World country – the U.S. chose to completely ignore three decades of information that was placed at their disposal about this disease.

It is not my purpose today to go into the many problems with the name (and diagnosis) of Chronic Fatigue Syndrome. That is pretty well documented in existing patient testimony over many years – from the CFS-ICC, to the CFSCC, and finally the CFSAC.

In his press conference on Friday, Dr. William Reeve acknowledged that the experts brought into the CDC genome project have found the Kansas City CFS patient group to comprise a heterogeneous population. Consequently, it is important to acknowledge the subgroups that would comprise a homogeneous population for study.

Therefore, I am asking that the United States CDC recognize the disease Myalgic Encephalomyelitis. I am asking that we allow the market of ideas to function freely and without political barriers, so that those of us who meet the diagnostic criteria for Myalgic Encephalomyelitis be permitted to use that diagnosis. That would also permit rudimentary scientific research to proceed using patients diagnosed with M.E. in the United States as subjects.

I am also asking that the CDC recognize the Rnase-L Factor and permit the designation of a subgroup of patients who have that biomarker. The CDC has long insisted that the Rnase-L Factor is not a “test” for “CFS” because not everyone with CFS has the marker. However, nearly everyone who has the Rnase-L Factor meets the Fukuda definition for CFS. Consequently, we have identified a subgroup, and I would like the CDC to let researchers know that this subgroup exists. It may turn out that these two subgroups (M.E. and the RNase-L Factor) overlap considerably. Either way, the public needs to know that we already have subgroups identified – the only barrier is the CDC.

Myalgic Encephalomyelitis

Dr. Melvin Ramsay is credited for having coined the phrase Myalgic Encephalomyelitis when describing a cluster outbreak among nurses at Royal Free Hospital in London in 1955. Actually, it was an editor at the Lancet who invented the name, attaching the word “benign” to the front to mean that the disease was not immediately life-threatening. Ramsay’s response was that there was nothing “benign” about it – but formally the term “benign” has stuck, and that is the phrase the World Health Organization (WHO) uses – Benign Myalgic Encephalomyelitis. Dr. Ramsay continued to work with patients who had M.E. until his death in 1989.

I have attached in Appendix A the classic Ramsay definition for M.E., and also in Appendix B a statement by Ramsay about the illness. Compare the complexity of these descriptions with the paucity of the Holmes and Fukuda definitions. Ramsay spent a great deal of time treating patients with M.E. He composed a set of symptoms that they actually had.

If this story is mentioned at all in the literature available in the U.S., it stops there. M.E. is presented as one of many names for outbreaks that historically mimic the Incline Village and Lyndonville, NY, outbreaks of the mid-1980s – others are atypical polio, infectious neurasthenia, Tamanui flu, and even “spasmophilia.”

It is a gross misreading of the history of medicine to include M.E. in a list of now-dead terms for the condition known as “CFS”.

M.E. is a contemporary disease that continues to be recognized by the British government. There are roughly 300,000 patients in Britain with Myalgic Encephalomyelitis – not “CFS”. It is not a “historic” term – it is a disease of the twenty-first century; just one that is not recognized by the United States.

Why does that matter? It matters because the confusion over what is “CFS” and what is “M.E.” has resulted in misrepresentation. It matters because patients and medical personnel in the United States know nothing of the half-century of diagnostic and clinical experience in England – where M.E. is diagnosed far more easily than CFS can be diagnosed in the United States. Finally, it matters because banning a disease diagnosis in this manner is simply unscientific.

But I have a more personal reason.

For five years I had severe pain behind my eyes and in the back of my neck. I had massive confusion. I had expressive aphasia, dyslexia, dysgraphia, dyscalculia, significant short term memory loss, significant spatial misperception; bright lights hurt my eyes and loud noises hurt my ears. I also had a viral disease known to cause encephalitis and possibly meningitis. Occam’s Razor: I had Myalgic Encephalomyelitis.

The World Health Organization incorporated M.E. into ICD-9-DM in the same category with post-viral fatigue syndrome (PVFS), a name that appeared in the UK for the disease in the mid-1980s. M.E. was cataloged as a neurological illness, given the number 323.9.

The ICD enumerations take on additional significance in the United States because insurance companies require doctors to use the ICD-9-CM numerical codes when requesting reimbursement for treating a patient. For many years, M.E. was included in ICD-9-CM. In fact, there were patients in the United States who had been diagnosed with M.E. and their physicians used 323.9 when asking for reimbursement.

Unfortunately, in 1998 the U.S. took M.E. out of ICD-9-CM on its website. As a result the diagnosis of M.E. is basically censored in the United States.

In the past year I have noticed the name M.E. is not even used when discussing the Ramsay definition for the disease.

What is going on here is nothing less than censorship, although of a private nature.

If CFS is superior to M.E. as a diagnosis, presumably M.E. would simply die out. Why censor all reference to it?

One can only assume that the Untied States does not believe in the free market of ideas when it comes to medical information. If M.E. is the same thing as CFS – as the CDC would have us believe – there would be no need for such a draconian solution.

This is the real problem: A diagnosis of M.E. is very different from a diagnosis of CFS.

First of all, a diagnosis of M.E. is based upon the positive identification of a set of symptoms. The diagnosis of CFS, in contrast, is one of exclusion. CFS is “unexplained” chronic fatigue. Secondly, the diagnosis of M.E. focuses on Central Nervous System disruption, a medical concept. The diagnosis of CFS focuses on “fatigue”, a term that is very difficult to nail down for the purposes of formal medicine. Finally, the Fukuda definition includes CNS disruption as an OPTIONAL symptom for CFS. Thus it is possible for someone to be diagnosed with CFS and not meet the definition of M.E. at all.

This is, in fact, what has happened in the UK. Dr. Simon Wessely, a psychiatrist who openly asserts that CFS is a somatoform disorder, diagnoses the disease in a manner altogether different from the M.E. diagnosis. – and for that matter, different from the Fukuda definition, recognized by the U.S. CDC. Many of the people Wessely diagnoses with CFS would probably only meet the definition for “chronic fatigue” in the United States. Thus we really have two CFS definitions in the international literature – CFS-CDC (the Fukuda and Holmes definitions) and CFS-UK (the definition that Simon Wessely and Michael Sharpe have used in their studies of the disease).

I have not had much time to look at it, but I was deeply concerned that the fruits of the CDC’s longstanding “genome” study appear to be yet another effort to demonstrate that CFS is caused by the individual’s inability to “handle stress.” Such a conclusion is only possible when the disease is perceived as fatigue, writ large. May I briefly suggest that the direction of causation might be reversed? Severe illness decreases the body’s ability to “handle stress.” In focusing on the ability to handle stress as the illness, instead of a symptom of the illness, the CDC seems to be invading Simon Wessely’s territory.

It would probably be useful to point out that Dr. Wessely is currently under investigation in Parliament – what is called “the Gibson Inquiry” – for unethical behavior and possible malfeasance for his unseemly relationship with insurance and pharmaceutical companies. Following Dr. Wessely’s path does not appear to be a good idea.

We are at a turning point in the way we look at the disease “CFS” in the United States. The ability to recognize and respect the diagnosis of M.E. is key to whether or not we will join the international world or continue along our current isolationist path. – a path that should never be taken when scholarly research and information is involved.

First, let me remind this group that the 11 recommendations sent to the Director of Health and Human Services by the CFSAC in 2004 included adopting the WHO’s ICD-10-DM designation for “CFS” – in G93.3, under the chapter on neurological disorders, together with PVFS and M.E. The alternative would be to start using the phrase “Fatigue Syndrome”, which is what Simon Wessely uses in the UK. Fatigue Syndrome is classified under “neurotic, stress-related, and somatoform disorders” in F48.0, along with neurasthenia. When “fatigue” is punched into the CDC’s own search engine for ICD-10-CM, it pops out under F48.8, the same chapter as F48.0, but not in the neurasthenia category. F48.8 is “other specified neurotic disorders”.

While a nation may omit a WHO designated illness from their own manuals, it is against the rules for a signatory nation, the United States, to place a disease in a different chapter than the one where WHO has placed it. Dr. Wessely broke the rules when he placed chronic fatigue syndrome under F48.0. We would be breaking the rules if we placed CFS anywhere but in G93.3.

If ICD-10-CM is approved in the U.S., it is the stated intent of the CDC is that CFS would remain under R53 for “malaise and fatigue” in the chapter on “Symptoms, Signs, and Abnormal Clinical and Laboratory findings, not elsewhere classified”. But to do so would violate the rules by which we are a member of WHO. CFS can only go in G93.3.

Today the CDC solves the problem by simply omitting the offending numbers. You cannot find M.E. in ICD-9-CM – and you can’t find either M.E. or CFS in ICD-10-CM. This is censorship. Isn’t it time for this to end? Why are we treating Britain as a competitor instead of an ally? Why are we siding with Simon Wessely instead of Melvin Ramsay and Malcolm Hooper?

As long as I have had this disease, which is a bit over a decade, the CDC and NIH have behaved as if there was a contest between M.E. and CFS – as if “M.E.” was the enemy instead of a medical diagnosis. But compromise is at hand, and this is the time to seize it.

In 2003 a committee of experts on M.E. and CFS – half of whom practice in the United States – produced a “consensus document” defining standards for the clinical diagnosis of “ME-CFS” and treatment options for those so diagnosed. My own specialist, Dr. Peterson, is one of the authors – so is Dr. Nancy Klimas, who has been a member of this committee. The document itself is roughly 100 pages long. I have brought with me a summary that was written by Dr. Bruce Carrothers and Marjorie van de Sande and is being distributed in Canada in pamphlet form; there are enough copies for everyone here. Canada formally adopted these standards in 2003.

The CDC has yet to approve formal diagnostic criteria for “CFS” in the United States. Why reinvent the wheel? Let’s accept the ME-CFS name, diagnostic criteria, and treatment protocols of the Consensus Documents of 2003.

The RNase-L Factor

Dr. Robert Suhadolnik of Temple University first discovered the Rnase-L Factor in 1995, while studying patients from the Incline Village outbreak of 1984. I have appended a presentation he gave at the Madison, WI, AACFS meeting that does a better job of explaining the Rnase-L Factor than I could. The NIH and CDC have both complained that this biomarker is not “replicable”. That is a misuse of a statistical term. Technically, “replicable” means that the test will come out the same if another researcher attempts it with THE SAME SUBJECTS. In that sense, of course this test is replicable.

Furthermore, before they knew that Dr. Suhadolnik was doing the same thing, two French scientists, Bernard Le Bleu and Catherine Bisbal, made the same discovery using a different technique. As a scholar, I was impressed by this confluence. This does not happen very often, and when it does, dispassionate researchers generally take notice.

However, the CDC has been adamant in insisting that the only purpose the Rnase-L Factor could possibly serve would be as a biomarker that identified “CFS” patients. I find that stance absurd. The RNase-L Factor identifies people with the Rnase-L Factor! Every person so identified has been seriously ill. If only half of “CFS” patients turn out to have the Rnase-L Factor, we have identified 500,000 individuals with a severe immunological abnormality. Why does the CDC continue to cover this up?

Conclusion

I therefore ask the committee to consider four actions:

1. Return M.E. on the CDC website to ICD-9-CM at 323.9 so that those who have the appropriate symptoms can be diagnosed with M.E. for purposes of accuracy, treatment – and research.

2. Request that the CDC to take the advice of the CFSAC in 2004 and accept the ICD-10-DM designation of CFS along with M.E. and PVFS under neurological conditions at G93.3. The cause may be immunological, viral, endocrine, toxic – it does not matter. CNS disruption is a significant, if not the significant, symptom of this disease. It is well past time for the CDC to accept this. In the early 1950s, the CDC was similarly reluctant to reclassify Multiple Sclerosis from hysterical paralysis to a neurological condition – something that seems ridiculously obvious today. It took an Act of Congress for them to do so. Do we need an Act of Congress to meet WHO’s classification system today?

3. Inform the public and the medical community that a subgroup of patients who meet the Fukuda definition for “CFS” have an immunological abnormality in the 2'-5'A Synthetate Antiviral Pathway. The 37kDa Rnase-L abnormality makes the patients vulnerable to viral assault because although they can weaken viruses, their bodies are incapable of dispatching them. At the same time, the rogue kinase protein released by this abnormal biochemical process exacerbates autoimmune responses, and also causes “channelopathy,” or ion channel disruption, which in itself can be responsible for many of the symptoms ME-CFS patients experience.

4. This is the most important: We must join with our neighbor to the north and formally adopt the 2003 Consensus Documents for diagnosing and treating ME-CFS.

Eighteen years after the CDC accepted the Holmes criteria for a disease they called “chronic fatigue syndrome,” even the CDC accepts that 85 percent of patients who have this disease called “CFS” have yet to be diagnosed. Of those who have been diagnosed, many are receiving no treatment whatsoever. The idea that this was a “new” disease; the new name “CFS”, and the absence of a usable clinical definition has left patients in limbo for twenty years. And even Dr. Reeves admitted in his press conference that it the “genome project” has yet to produce anything that can directly help patients. The decision to treat the Incline Village outbreak as a new disease and name it “chronic fatigue syndrome” has not served patients well, if two decades after its adoption 85 of 100 patients remain undiagnosed, and those who are diagnosed are offered little with regard to treatment.

At a time when budgets are small in the executive branch, simply disseminating information to correct prior disinformation can make an enormous change for the better, and it is virtually cost-free. For everything that M.E. and CFS patients in the United States have suffered in the past two decades, for all those who are still told that they can “exercise” or “think” [CBT] their way out of the disease, for those who live on the streets or in cars, for the children who are looked upon as malingerers and truants – for all of us – I ask that this committee advise the CDC to do the right thing:

Permit the diagnosis of M.E. in the United States.

Move towards the acceptance of the WHO ICD-10 category for “CFS” in G93.3

Inform the public that a subgroup of ME-CFS patients in the U.S. has the Rnase-L biochemical abnormality.

Accept the 2003 ME-CFS Consensus Documents and name.

Thank you.

Mary M. Schweitzer, Ph.D.


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