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Patients battle for justice

Is it possible that a disease as impairing as Type II diabetes mellitus, congestive heart failure, multiple sclerosis, and end-stage renal disease could be repeatedly belittled and delegitimized by scientists and health care professionals? Tragically, this is the case for a devastating illness affecting over one million Americans, and these patients have been deprived of their basic rights to respect, appropriate diagnosis, and humane treatment.

In the beginning, patients with this illness had a credible name, myalgic encephalomyelitis (ME), and diagnostic criteria that had been developed by the distinguished British physician, Dr. Melvin Ramsay. Yet, in 1988, the Centers for Disease Control (CDC) renamed this illness chronic fatigue syndrome (CFS). Patients were unanimous in their disdain for this trivializing term, but they were no match for the supreme power and authority of the CDC. The new name placed patients around the world in a compromised position, as they were now forced to use a degrading and stigmatizing term in explaining their illness to family members, friends, work associates and medical personnel.

Patients were next characterized as having a relatively rare “Yuppie Flu” disease, and flawed epidemiology was responsible for these inaccurate and biased characterizations. If this were not enough, the CDC in 1994 developed a case definition that did not require the cardinal symptoms of this illness (such as post-exertional malaise and neurocognitive impairments). When this porous case definition was used to select patients, the resultant heterogeneity increased the risk of failing to consistently identify biomarkers, which contributed once again to dismissing those affected as having a psychiatric illness. Misguided psychiatrists then developed treatment approaches focusing on increasing exercise, even though the patients’ chief complaints were muscle weakness and exercise-induced fatigue.

Rarely in the annals of recorded medicine has there been such a David and Goliath-like battle, with impaired and sick patients trying to defeat an entrenched medical and scientific establishment. Their story of resistance is not one of an epic skirmish, but rather a veritable war with health care professionals and scientists that has endured for decades, as has been so well documented by Hillary Johnson.

This past year, in an effort to rectify these tragic abuses, the Institute of Medicine (IOM) released a report that not only clearly emphasized the debilitating nature of this illness, but also strikingly rejected the stigmatizing name CFS and the defective case definition. Unfortunately, particularly in light of decades of past disastrous scientific blunders, the IOM once again imposed an inappropriate name (i.e., systemic exertion intolerance disease) on the patient community, but patients valiantly challenged this recommendation by collecting data that exposed the spuriousness of this foolish name change effort.  Even a federal panel called the Chronic Fatigue Syndrome Advisory Committee at its recent meeting in August has rejected this new name.

The IOM also released a new case definition to replace CFS, and our published work now suggests that these new criteria would almost triple the prior CFS prevalence rate, and this is in part due to the inclusion of individuals who formerly had been excluded. Unwittingly, this inadvertent action accomplished much of what Bill Reeves and the CDC had attempted to do a decade ago when they proposed an ill-fated expansion of the case definition.

Is there any way to salvage the damage inflicted on the larger patient community by well-intentioned scientists from the IOM?  Perhaps we might consider re-activating the brilliant scholarship of Dr. Melvin Ramsay and the term Myalgic Encephalomyelitis, which would identify a smaller more homogenous group of patients as having ME. In contrast, those meeting the broader IOM criteria, which we might call neuroendocrine dysfunction syndrome (which had been recommended by the patient inspired Name Change workgroup over a decade ago) could replace CFS and this category would represent a larger group captured by the key IOM symptoms. Those that do not meet the ME criteria or the broader IOM criteria could be classified as having chronic fatigue, which is the most general category, and represents those with six or more months of fatigue. Such a tripartite classification system would eliminate the detested term CFS, validate the original respected name ME, differentiate ME from the IOM criteria, and provide a new nonstigmatizing term for those not meeting the more restrictive ME criteria. In addition, the broader IOM criteria could be used for clinical purposes, whereas the more restrictive ME criteria could be used for research purposes. Some scientists might prefer to consider this tripartite grouping a matter of severity rather than categorical differences, but all agree that differentiations of this type occur with many diseases, and such a classification system has the potential to clarify discrepant findings from epidemiologic, etiologic, and treatment studies.

Ultimately, whatever decisions are made on the names and criteria, the vetting process needs to be open, inclusive and transparent, with patients playing a prominent, decisive, and leadership role in these deliberations.

Image credit: Photo by Dr.Farouk, CC BY 2.0 via Flickr

Recent Comments

  1. Tom Kindlon

    Small point: “Immune” was part of the previously suggested name i.e.
    Neuro-Endocrine Immune Dysfunction Syndrome

  2. Dr E Goudsmit

    Factual error. Ramsay NEVER formulated criteria. He listed inclusion criteria for a study and wrote a summary with the three key characteristics in his monograph. His colleagues then used the latter to develop criteria in 1993 and again, in 2009 (which were published). References to the Ramsay criteria are simply wrong and highly misleading. Let’s keep to facts. (And give credit where credit is due).

  3. Christopher Lierle

    As a person disabled by , I recognize the need to wipe out CFS as a name for our disease.
    Beyond that, I question much of what I read. I don’t see the IOM’s new name as “foolish” nor the thoughtful effort to make an effective change as “spurious.” Indeed, it has helped me accurately portray the illness to many people who were otherwise resistant to understanding.
    Similarly, I don’t see a narrower or more fractured definition of the disorder as advantageous for anyone. I question what makes the ME label “brilliant” as opposed to “arbitrarily exclusionary.” A person with a slightly different symptom set is not necessarily someone suffering from a different disorder altogether.
    Indeed, it would be odd if everyone DID have the same exact symptoms; systems vary from person to person, and the nature of the exertion influences the symptoms that present within those systems.
    The inclusiveness of the SEID name allows for that normal variability, while retaining only that which is consistently true across the affected population – namely, that exertion produces one or more symptoms from a relatively narrow list.
    Still, I’m sure we agree wholeheartedly on one possible replacement name: any name that lists a specific cause, as it would imply that we’ve found said cause, hopefully leading to effective tests and treatments. Let’s hope we can get to THAT name sooner rather than later.

  4. Weyland

    Let me start off by saying that I respect and appreciate your work on ME and CFS Dr. Jason.

    I disagree with some of the statements made here. You state that the CDC renamed ME to CFS with the 1988 case definition but I don’t believe this is true. The term ME does not even appear in this case definition. The 1988 definition, as stated plainly, was created to provide a framework for researching chronic fatiguing illnesses. It states that CFS is not a disease but a syndrome, potentially made up of many unknown causes. ME was classified as a distinct infectious post-viral neurological illness in 1969 and further accepted as such in 1978 by the British. The CDC was brazen but I don’t think they intended for their vague syndrome to replace a well classified and well defined neurological disease. I think this is still reflected today in their ICD-CM classifications, which as of the ICD-10-CM, make the diagnoses mutually exclusive of each other.

    If we are speaking about true ME, the cardinal feature is not PEM. The cardinal feature of ME, according to Melvin Ramsay, is rapid and severe muscle fatigability following trivial exertion, with a prolonged recovery period. This feature, combined with circulatory, cerebral, and autonomic impairments make up the core of the ME case definition (and distinguish it largely from the CFS criteria). I agree with your idea of bringing back Dr. Ramsay’s work on ME and using it going forward.

    The important message that I wish to get across is that ME is not CFS. It is very unfortunate that the loud majority of advocates in recent years have been calling to combine the two and have sadly more or less succeeded as this culminated in the IOM combination of ME and CFS into the single entity known as SEID. This is a dangerous mistake. This does not help patients of either disease, either from a clinical or research standpoint.

    The separation between ME and CFS needs to be maintained and further strengthened. Medical education needs to include information about both ME and CFS. A sane ME case definition, one matching Ramsay’s historical definition, needs to be adopted for both clinical and research purposes. I will not attempt to decide what should happen to CFS or chronic fatigue as I am not a patient of those illnesses. Regardless, your closing statement is powerful and I strongly agree.

  5. Simon Cunningham

    I have had CFS/PVFS for three years and have come to the conclusion that (1) the medical establishment has indeed half written off this ugly and debilitating condition, but also (2) that CFS patients need to *stop* arguing about what to call it. Who cares what the name is? Or whether it “stigmatizes” people? Stop being so emotionally fragile. Let’s just focus on getting more research going.

    A cure will eventually be found, must be found, but not through emotional infighting around making everybody feel good.

  6. Marybeth Sprankle

    To Simon and others who feel the way he does. I have had ME/CFS for 15 years. I understand the frustration and additional stress that others like me feel about the name. The reason we would appreciate a decent, correct and elaborative name is because this illness has mostly been ignored and even many medical professionals don’t have a clue even after all this time, when we say “I have been diagnosed with Chronic Fatigue Syndrome”. Heads are immediately turned away and the conversation is diverted to something they can handle – you know, measles, mumps, hot flashes, pneumonia and so on. For years I saw many different doctors until I finally found a CFIDS physician who diagnosed me with CFIDS and Fibromyalgia. He sent a letter to my family physician explaining in detail all that he had discovered on his exam with me and included much information for her to read. As it turned out my family physician knew this particular physician, had attended many conferences, and had read his papers. He was a pillar of the community. From that moment on I was able to converse with her in an intelligent manner and she began treating my symptoms. She was wonderful and had such a helpful, understanding attitude. Unfortunately, last year we moved 125 miles away. I now have a whole new group of doctors in different areas of practice. None of them will discuss this issue of my diagnosis and it has never been entered into their computer records. My old family physician has since left practice and no one knows how to get any records because it was before computer entry. I am back at square one.

    Please understand that no one really wants to argue about a decent, respectable name for this illness, (if their is such a thing), but picking out just one symptom from among many is just not acceptable. I don’t know if I have expressed myself well ……. I have been in the middle of a set-back and I do experience mental fogginess, so I am probably not the best of writers. I absolutely agree we must continue Research to find a cure and I have supported that as much as I have been able, but, meanwhile I would appreciate if others would not look at me as a “very tired person”. Oh, how I wish that was all that was wrong!

  7. Justin Reilly, JD

    Thank you for this excellent piece, Prof. Jason. I agree with almost all of it (except for the point about retaining a NEID disorder, separate from ME).

    It’s hard to single out any one point for praise, but I especially agree that ME patients have long been persecuted by CDC and others and “Ultimately, whatever decisions are made on the names and criteria, the vetting process needs to be open, inclusive and transparent, with patients playing a prominent, decisive, and leadership role in these deliberations.”

  8. Patti Higgins

    I had “officially diagnosed” CFS for about a year from mid-age 18 to mid-age 19. No treatment helped, but I slowly got 80% better with lots and lots of rest and vitamins. I am now in my mid-60s and have never had what I would consider normal health. I was always easily exhausted and susceptible to viral infections from age 20 to my mid-50s. At age 57 I injured a knee and developed a wide-spread pain syndrome in both legs within two months of the injury. I was diagnosed with Fibromyalgia about five years later by a rhumatologist after many other doctors and tests could not find out what the problem was. I have been on Tramadol and Neurontin since then. My pain is about 80% controlled, but I have extreme muscle weakness and get exhausted after standing or doing housework for only 5-10 minutes. I have tried four different types of physical therapy over the years, including pool exercises, and went through a six-week session at a Pain Center with a neurologist specializing in Fibromyalgia. Nothing has helped to increase my stamina, and regular exercises completely debilitate me for days.

    I wonder if my condition is some sort of relapse of CFS. I know older people sometimes get post-Polio syndrome if they had Polio when they were young and that if you had Chickenpox the virus lies dormant in the nervous system and can re-emerge later as Shingles. Has anyone done any research to see if Fibromyalgia is somehow related to having CFS earlier in life? Does anyone have any thoughts on this issue?

    I also find it odd that you never heard of Fibromyalgia a few decades ago and now it seems to be very widespread. Everyone I mention it to says they know someone who has it.

    I will be 68 tomorrow. I look younger, but I cannot walk normally and look much older when I am shuffling along. I feel like I am 88. I have had a handicapped placard for ten years. I can’t walk more than a half block without using a walker or holding onto a shopping cart. In many ways, I feel that my life is over and that I will never be normal again.

    Please, does anyone have any information on this?

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  10. Deborah Waroff

    I address two comments to Weyland, which I intend to be explanatory rather than argumentative.
    First, the idea that the CDC renamed “ME” to “CFS” Indeed reflects history, though perhaps not precisely conscious intent. One may recall that an outbreak of Myalgic Encephalomyelitis among 200 persons at Incline Village, Nevada in the winter of 1984-85 resulted in some rather lackadaisical attentions from the CDC. These brought forth in turn, in 1988, release of the “Holmes Criteria” for a new “Chronic Fatigue Syndrome.” This “CFS” definition served as a blanket rather carelessly slung to include the patients at Incline Village, although it eliminated from discussion all of their more severe neurological symptoms such as seizures.
    Thus, while CDC did not actually specify replacement of ME by CFS, its 1988 publication did have the effect of making CFS the go-to diagnosis, first in the US and ultimately, alas, world-wide.
    Secondly, I regret to point out that the “cardinal feature” so vividly described in Dr. Melvyn Ramsay’s 1950s-60s British English as “rapid and severe muscle fatigability following trivial exertion, with a prolonged recovery period” is indeed the very same phenomenon that American practitioners of the 21st century have intended to convey with the wording “post-exertional malaise.”

  11. Mark

    I originally embraced the new name simply because it was not “Chronic Fatigue Syndrome”, but I have come to see how “Exertion Intolerance” can be quickly translated by laymen’s ears as “Lazy”.

    What frustrates me more than anything is the lack of experts here in Canada, and in particular here in Vancouver, BC where I live. I have gone from family doctor to family doctor and from one specialist to another with no satisfactory results. There being no treatment in any event, I sometimes wonder why I am so ardent in my search for a champion.

    I have suffered from this debilitating illness now for over 11 years and from having to be my own diagnostician, I believe (and it is only a belief because I do not have a ‘proper’ medical background) that the dysfunction occurs in the mitochondria and the production of adenosine triphosphate. That something so basic as the Krebbs Cycle could be disrupted so traumatically and yet draw no medical attention (to my knowledge) boggles my uneducated mind. The only thing which has helped me thus far is taking a supplement, Magnesium Bisgylcinate Plus which has boosted my energy level to the point where I can engage in one ‘outside’ activity per day instead of being apartment bound for a week or weeks at a time.

    The deterioration in quality of life is hardest when it manifests a total social isolation. Watching television and trading email quips is hardly substitute for human interaction, but when such interaction carries a heavy energy cost, isolation becomes the only solace.

    We have no one to speak for us. And since none of us seem to have the energy to organize (ironic feedback loop), we remain voiceless and invisible to the rest of the world.

    Most people I encounter invariably believe there is a strong psychological component to this “illness” and usually urge that I adopt a graduated exercise regimen. I don’t know whose eyes roll the most, theirs or my own.

    Thank you for writing about this issue. The NEIDS presents more of a possible label, but until there is some medical headway as far as treatment or diagnosis, mere attention is as good as it gets.

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