Several years ago, the board of the National CFIDS Foundation (NCF) was asked to change their name to the CFS/ME Foundation, Inc. The board voted it down unanimously. We don't know what CFS is. We don't know exactly what the Centers for Disease Control and Prevention (CDC) uses for test patients in any of their recent studies. We do, however, know that, by excluding any patient that has neurological problems, they are excluding everyone who has ME (myalgic encephalomyelitis). So why don't we change the name to ME and drop the CFIDS? There is no federal medical code for ME in our country and physicians are unable to diagnose a patient with anything but "CFS."
In the late fall of 2000, the numerical code for myalgic encephalomyelitis (ME) was removed from the U.S. code of ICD-9CM.
As explained in our last issue of this newsletter, CFS was a name selected by a committee appointed by the CDC in 1988. Horrified at the erroneous, insulting and trivializing name, Seymour Grufferman, M.D., Ph.D. suggested the use of CFIDS or Chronic Fatigue Immune Dysfunction Syndrome as the immune dysfunction problems had already been proven scientifically. England, at the urging of one NIH (National Institutes of Health) highly placed employee, has also adopted CFS and seen a similar quagmire develop. Their own government has been preparing draft guidelines for medical conditions and several groups have found fault with the language presented for "CFS/ME". Our own government has been responsible for defining CFS so loosely that it resulted in a vague collection of symptoms in which the symptom of chronic fatigue is paramount. In the United Kingdom as in the United States, this has resulted in a very mixed group of patients that continue to stray farther and farther a field of the well-defined, virally triggered disease with neurological complications which is what the World Health Organization calls myalgic encephalomyelitis. The result of renaming this "CFS" and avoiding all proven science has led medical practitioners to treatments that could be damaging and those who have milder cases could well be pushed into further severity by some of these suggested treatments. If one of the major symptoms of a disease, for instance, is post-exertional malaise, it is not only illogical but inappropriate to prescribe exercise as a treatment that could well result in furthering the severity of the disease.
ME and the artificially constructed CFS are not the same illness. In England, the draft report of NICE, the National Institute for Clinical Excellence, were so hotly contested by some patient groups that the publication was delayed from April to August. One of the objecting groups was The Young ME Sufferers Trust who feels that a good solution would be to separate ME from CFS "for the sake of patients and medical accuracy." Alexis Shelekov, M.D.. who was on the CDC's committee that named "CFS" and quit in disgust was the first recipient of the AACFS's Rudy Perpich Memorial Lifetime Achievement Award for CFIDS/ME. In his acceptance speech, he called for a change to the name.
The only clinical guidelines that exist today is the Canadian Criteria for CFS/ME which has recently been updated. However, the United States does not recognize that criteria and has carefully erased ME from its diagnostic code. If they were to adopt the Canadian Criteria, the CDC would have to revise all the work they have done along with all the press releases they have issued on "CFS."
Historically, there are many who were against our government obliterating any reference to ME by continuing to carefully craft the new version of CFS to be a mysterious and unexplained illness. In 1999, the NCF joined together with RESCIND, INC. and the Medical Professionals with CFIDS to have the United States recognize ME. They did not ask for CFS to be eradicated but for ME to be recognized. Jean Harrison of MAME, Inc. wrote "Recognizing ME (London) will be a great step in the right direction. It will debunk the false notion that this is a new disease..." (Vol. 1, No. 4, Forum). An ensuing investigation led Jean to question Joe McDade, Ph.D. of the CDC who made the announcement of the diagnostic code for CFS that put it under "Malaise and fatigue." He said he didn't know why it was done even though the National Center for Health Statistics (NCHS) is under the CDC's auspices.
By the spring of 2001, an effort to recognize ME in the United States that was well underway in the same manner that Multiple Sclerosis advocates had changed the name of "Hysterical Paralysis" was crushed. A senator referred by Senator Edward Kennedy (D, MA) had agreed to add an attachment to a bill that was going to be approved by the United States Congress. This attachment would recognize ME. At the last minute, there was a decision change and a senior aide to this senator admitted she had talked to Kim Kenney McLeary of the CFIDS Association of America. Ms. McLeary told the CFSCC (CFS Coordinating Committee) that she wanted to wait until a conference slated to be held in Brussels had a chance to vote to hear a world opinion despite the international medical community, along with their own membership, being in favor of ME.. The Belgium conference overwhelmingly supported ME but the damage had already been done in the United States and Ms. Kenney and The CFIDS Association of America had successfully blocked the recognition of ME in the United States.
How did professionals react to the trivializing and erroneous name of CFS? In a newspaper article run by Reuter's Health by Julia Schleszer, Leonard Jason, Ph.D. said, "I have felt for many years that the term chronic fatigue syndrome, which came in 1988, was...a trivial name. If I said you had chronic cough syndrome, you would probably think that is kind of trivial. But if I said you have tuberculosis you would probably say, well that is serious." In his book, Faces of CFIDS. David Sheffield Bell, M.D. wrote, "It’s absurdly trivial and unscientific name: chronic fatigue syndrome...not only debases the patient who suffers from it, this name also seems to chip away at the self-esteem of the doctor, especially if he is a highly paid specialist with a reputation to protect." The president of the AACFS at the time, Dr. Sudhit Gupta, felt "it would be a mistake to change the name until we know this disease better." Along the same lines, Dr. Nancy Klimas said in a post to the internet that she "was listening hard" but was concerned that a name change (to ME or otherwise) may be harmful as she could "envision folks having their disability claims turned down in the confusion of a name change." In response to this, the Spring, 2001 Forum article by Robert Huntington reported "This is totally absurd and we even checked with SSA (Social Security Administration) to verify our own thoughts. The SSA responded that they merely change the name on their materials and let all within the system know! Why the false scare tactics? Is Klimas afraid of not winning more government money?...they use every excuse, including not wanting a name that has an improper meaning, that is merely another fallacy. There are more diseases with names that mean nothing but they don't serve to obscure the illness...malaria means 'ill wind' after all, and cancer was and is an astrological sign!" Daniel Peterson, M.D. said the name has allowed for the disease to be trivialized and said "We've been held back by biases."
A Name Change Workgroup was appointed by the CFSCC (CFS Coordination Committee) but the majority of the members were heavily biased. Commenting on an Interim Report from this DHHS appointed Name Change Workgroup in a guest editorial printed in The National Forum in 2001, Tom Hennessy, Jr., president of RESCIND, Inc. wrote, "This workgroup was a sham from the beginning. For the patients, they completely ignored anyone from RESCIND, Inc. which STARTED the name change movement and had brought up the name change at EVERY meeting in public or private for 12 years. They ignored the Medical Professionals with M.E. which had been outspoken with the need for a name change since 1991. They ignored the National CFIDS Foundation that had worked to get a name change written into law for several years. They INCLUDED Ms. Kim Kenney, who has done almost nothing positive for the past 10 years and who had worked to STOP any name change movement whenever possible. They included a relative of Stephen Straus, whose incompetence, bias, and venal pettiness are legendary, and another former NIH person with NO experience in any support groups, NO experience in the name change movement, and NO credentials in organization of ANY kind...So it was set up to fail from the start...just like every OTHER committee for the past twelve years." The Workgroup's recommendations were ignored when the CFSCC disbanded and the CFS Advisory Committee (CFSAC) convened. One of the ignored recommendations made by the CFS Advisory Committee was to recognize "CFS" as a neurological disease. That, of course, was ignored as was all the other recommendations.
At a meeting that was held in order to determine a new criterion for CFS held by the CDC, the lead author, Dr. Keiji Fukuda, was asked about epidemics of the disease of ME around the world. He agreed that there were numerous epidemics of ME but none of them were epidemics of CFS. Dr. Fukuda was telling the truth. In the CFS definition, CFS remains quite open to interpretation that points to it being a psychiatric disease instead of a physical illness. Although the CDC has consistently claimed that CFS is a physical syndrome, nobody can name another disease that where one is subjected to a six month waiting period before diagnosis. Both the 1988 and the 1994 CDC criteria are very similar to the Diagnostic and Statistical Manual of Mental Disorder's somatization disorder. ME is not the same. Primary ME is chronic and disabling and it has both central and peripheral aspects along with clear central nervous system abnormalities that have been proven scientifically.
The NCF continues to refer to CFIDS/ME and they agree that "CFS" is a mysterious syndrome but it is not CFIDS/ME. We are referring to a disease that produces neurological symptoms including but not limited to impaired cognition, calculation difficulties, spatial disturbances, sleep disorders (already ruled out in some new research by the CDC for "CFS"), unusual nightmares, numbness or tingling feelings, disequilibrium, ringing in the ears, intolerance of bright lights, intolerance of alcohol, frequently saying the wrong word, night sweats, alterations in taste, smell and hearing, twitching muscles, excessive urination at night (nocturnia), headaches, etc. If you have just one of these symptoms that came on when you got sick, you do not have CFS, you have myalgic encephalomyelitis.
In the Nightingale Research Foundation's definition of myalgic encephalomyelitis, written by Byron Marshall Hyde, M.D., it states, "Myalgic Encephalomyelitis is not CFS. Fatigue was never a major diagnostic criterion of Myalgic Encephalomyelitis. Fatigue, loss of stamina, failure to recover rapidly following exposure to normal physical or intellectual stressors occur in most if not all progressive terminal diseases and in a very large number of chronic non-progressive or slowly progressive diseases. Fatigue and loss of stamina are simply indications that there is something wrong. They cannot be seriously measured, are generally subjective and do not assist us with the diagnosis of Myalgic Encephalomyelitis or CFS or, for that matter, any disease process."
The CDC has made the "CFS" criteria so loose that it eliminates anyone with any neurological signs or symptoms yet ME is a neurological disease. The damaging effects of their criteria along with the trivializing name have served to have other patients who do not have ME able to be diagnosed. The pathophysiology has been harmed. Science has taken a giant step backward as illustrated again and again. One new example is a study from Norway that found cognitive behavioral therapy and graded exercise "of proven value." What did these Norwegian adolescents have that produced improvement with these treatments? All new research reports coming from our own CDC are not only not addressing CFIDS/ME but their information ignores the neurological coding along with all the science that has come since the 1960's. This misinformation continues with the recent CDC's public awareness campaign that has ignored all the science.
When we refer to CFIDS/ME, we do not refer to CFS but
to ME. We wish we had the power to force our country to
recognize a disease that was carefully chronicled decades
ago by Dr. Melvin Ramsey and has been listed by the World
Health Organization as a neurological disease. If, indeed,
the CDC feels Americans are incapable of pronouncing myalgic
encephalomyelitis (that was one excuse given), let them
call it Ramsey's Disease but it is more than apparent
that their excuses were untruthful at best. We refused,
years ago, to change the name of our foundation to CFS/ME.
We do not address CFS. We don't even know what CFS is.
We do know that it is not what we have and it is not what
we are funding toward research that is looking for real
answers. While the CDC eliminates all people from research
who have neurological signs or symptoms, we ask those
physicians who participate in our research studies to
make sure that the patient has them and are diagnosed
The National CFIDS Foundation * 103 Aletha Rd, Needham Ma 02492 * (781) 449-3535 Fax (781) 449-8606