Dissension in the Ranks

There have been some assertions by patient-activists trying to distance themselves from the disparaging CFS label that "there is no fatigue in ME". However, those activists with medical training who have reviewed the older pre-CFS medical literature assure us that "fatigue" was regularly mentioned in descriptions of Myalgic Encephalomyelitis, and was often described as being just as overwhelming as it is in CFS.

The primary problem seems to be the nebulous and competing definitions of "what is CFS?"

Originally, CFS was applied to the Incline Village epidemic of a disease which was compatible with the descriptions of prior ME. As detailed in Osler's Web, government scientists' own words make it clear that they did not want to acknowledge the severe and contagious nature of the epidemic, and brushed off any attempts by independent researchers to enlighten them that this was ME (which appears to be a variant of polio), not laziness or depression.

Various groups with ulterior motives, including a cadre of psychiatrists who saw lifetime employment for themselves in the reclassification to a psychiatric paradigm, have expanded the definition of CFS until some of those definitions now can be applied to any case of fatigue from any source. The requirement of "post-exertional malaise" and symptoms made worse by exercise has entirely disappeared from some definitions of CFS, so talking about that brand of "CFS" versus the original "CFS" is comparing apples and oranges. In fact, originally, a history of depression was supposed to preclude a CFS diagnosis, not, as some would prefer, CFS being a less-stigmatizing name for depression.

The Real Thing, which was known as Myalgic Encephalomyelitis or Post Viral Syndrome prior to the 1988 CDC-mandated name change, is precipitated by an infectious event. Although many doctors would like to disregard my 105 fever and try to relate my symptoms to an emotional reaction, those who knew me both before and after February 1987 support my version that I was happy and healthy and having no unusual stress; then one day I developed a high fever and flu-like illness and was never the same after that. It has nothing to do with some imagined emotional fragility due to my gender or my marital status, just as AIDS was eventually proven to have nothing to do with the original theory of "being depressed because you're gay". Those of us who got the diagnosis before special-interest groups started playing games with it all tell the same story, which sounds a lot more like a contagious disease than a mental illness.

Now we have people with CFS diagnoses who have no symptoms other than fatigue, who cannot imagine that what us old-timers are describing is the same thing they have. But the problem with that is not with the patients ... it's with the medical professionals who don't know that Chronic Fatigue Syndrome is not the same thing as chronic fatigue, and who ignore such little inconveniences as patients whose total symptom package doesn't match the criteria for CFS because they didn't have the viral onset required for the original CFS which was really ME.

CFS expert David Bell, M.D., considers the word "fatigue" inappropriate since it is defined as a response to exertion that is relieved by rest, whereas CFS "fatigue" may result from little or no exertion and is not substantially relieved by rest. However, CDC has staunchly refused to change the name back to ME (in fact, it is almost impossible to get an ME diagnosis in the US). After agreeing to "consider" a name change, CDC later announced that the adoption of a new name would be premature. In a catch-22, the present name trivializes the illness, thereby discouraging the research funding needed to uncover the pathophysiology of the disorder, but without a definitive pathophysiology, CDC refuses to change the name. This little game has been going on for 20 years, and the patients are the losers.

If they'd put the efforts into solving CFS that were put into AIDS, a million more Americans would be fully employed and contributing to the economy, instead of begging for disability benefits which are denied because CDC ensured that early public opinion was formed on the notion of fakery, and has never done the remedial PR to educate the populace that innumerable objective abnormalities have been documented since 1984. While there is no specific CFS test, there are plenty of blood tests and neurological tests that can prove the existence of "something very wrong", but if the tests aren't done, or the judges don't understand that this how CFS is proven, benefits will continue to be denied to deserving people who, if they had any other diagnosis, would be deemed unable to work.   Costs to the economy of this epidemic are variously estimated at $9B-$25B a year; wouldn't it be better for the country to find an effective treatment and get us back to work?

Neurologists have described the fatigue of CFS/ME as "central fatigue", something very different from common tiredness. It's caused by a dysfunction of the Central Nervous System. This notion is acceptable to doctors in other neurological diseases, but somehow is deemed impossible or "doesn't make sense" in CFS. I have often noted that people with Multiple Sclerosis are fawned over and pitied when they tell people their diagnosis, but when I describe the same symptoms and same level of disability, I get verbal abuse. If I were a different sort of person, I would take the easy way out and just tell people that I, too, have MS. I'd rather educate people that CFS is closer to MS than to depression in both symptoms and pathology; in fact, some early patients were given the mistaken diagnosis of "atypical MS". There's no MS-specific blood test, either; it's diagnosed in the same way as CFS. The only real difference is that MS (which affects less than half as many people) has a higher profile and more acceptance as a valid neurological condition, and people would be embarrassed to question the diagnosis or attack a patient suffering such a debilitating illness.

The truth is, a CFS patient who does not exceed her limits probably won't experience overwhelming fatigue. I was utterly exhausted after a few days of trying to work half-time. Once I identified my limits, and made an effort to stay within them, I was only plagued by excessive fatigue when I could point to a specific cause, such as a sleepless night or a concerted effort to do housework beyond my known limits or the aerobic exercise forbidden by Dr. Cheney. More severely affected patients might have limits so low that they are utterly exhausted by walking 10 feet to the bathroom; less affected patients (such as me for a dozen years mostly in remission) might have limits so high that they can work full-time without being overly fatigued (but doing something active over the weekend instead of getting adequate rest is the straw that breaks the camel's back and brings on a relapse).  At whatever end of the spectrum, the key to your best health is the same: don't overdo.

The internationally-accepted Consensus definition at http://www.mefmaction.net/documents/me_overview.pdf describes CFS in terms compatible with the historic ME definition (a disease essentially eradicated in the US not by vaccine but by CDC fiat in mandating it be renamed CFS, and very few doctors being activist enough to use its correct name in making the diagnosis). Before disparaging CFS as laziness or mental illness or unprovable fakery, it would behoove you to read this document written by doctors and researchers who actually know what they're talking about. It is a lot more informative than the limited information CDC wants you to know. The information is out there for those open-minded enough to consider all the facts.

Dr. Bell has completed his latest book, which he describes as "not for rookies": "It describes a theory that fibromyalgia and ME/CFS are parts of a spectrum of illnesses, called here Neuro-Immune Fatigue, and that the common end pathway of these illnesses is a dysregulation of cellular metabolism leading to the inability of the cell's mitochondria to utilize oxygen." To get your copy of this compilation and summation of the newest research by one of the top US experts on CFS, send $25 to David Bell, M.D., 1276 Waterport Road, Waterport, NY 14571. In about six months, he hopes to have available "a very short book entitled Chronic Fatigue Syndrome and Fibromyalgia: A Short Treatment Guide for the Primary Care Provider. This book is short (around 50 pages) and reader friendly, designed to be given to a primary care provider respectfully by a patient with ME/CFS or fibromyalgia in order to communicate in a simple and direct way some of the treatment approaches that experienced clinicians have put in place for some years now." I can assure you, after reading Dr. Bell's writings, only the most stubborn iconoclast could still cling to the idea that there's "no proof" that CFS is a valid physical illness with objective markers. If you have questions or comments, visit www.DavidSBell.com.

But, yes, I know, there will always be those who don't want to know the truth, either because it's more fun to verbally abuse people they perceive as powerless or because they are unable to accept any opinion but their own.

For those people I offer the opinion of noted researcher, Dr. Yunus, who voices what patients have complained of for years:

It is not the patients who are disturbed, it is the physicians who are psychologically disturbed because they ignore the data, and whatever data there is, they manipulate it to say what they want it to say. -- Muhammed B. Yunus, M.D.

I have had doctors completely rewrite my life history in order to "manipulate the data" to "say what they want it to say". Years of my career and repeated expert diagnoses disappeared in the attempt to document what was necessary to support the doctor's misogynistic prejudices that divorcees don't like being back in the work force.  And, unfortunately, this fiction is the version the SSDI judge chooses to rely on, despite proof from other sources that I was never a stay-at-home wife and got my diagnosis more than a decade before I was forced to apply for benefits.  To his mind, the one doctor who refuses to accept the virologist's diagnosis -- the only doctor who says what the judge wants to hear -- is the only one who is telling the truth and all the others are lying. 

Tags: ME/CFS, CFS/ME, fatigue, diagnosis, prejudice, misogyny, manipulation, CFS, myalgic encephalomyelitis, David Bell, Muhammed Yunus