CFS Facts

 

"I have treated more than 2,000 AIDS and CFS patients in my career. And the CFS patients are MORE sick and MORE disabled every single day than my AIDS patients are, except for the last two months of life!" 
                                             – Dr. Marc Loveless
(infectious disease specialist and head of the CFS and AIDS Clinic at Oregon Health Sciences University, in Congressional Testimony, CFS Awareness Day, May 12, 1995)

 

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome is a disabling neuroimmune disease that affects more Americans than AIDS, breast cancer and lung cancer combined; more people than have multiple sclerosis or cystic fibrosis; a disease where patients are more functionally impaired than those suffering from diabetes, heart failure and kidney disease. This disease costs the U.S. as much as $26 billion annually in lost productivity (according to a study by Dr. Jason), and affects at least a million Americans.  The numbers of economic impact and patients are equally significant in other countries.

 

Yet after nearly four decades as an internationally recognized and categorized disabling neurological disorder, ME/CFS here in the U.S. remains one of the most underfunded, maligned, miscategorized life-altering illnesses of our time.

 

In every other English-speaking country they use the more accurate scientific name, Myalgic Encephalomyelitis; only in the US has ME been essentially abolished from the vocabulary and medical literature – it's almost impossible to find a doctor in the US who will give you an ME diagnosis. The NIH has repeatedly misappropriated funds, sent requests for research funding to ad hoc panels with few or no expert members, and ignored recommendations by medical committees and the Chronic Fatigue Syndrome Advisory Committee (CFSAC) Recommendations available at www.cfids-me.org/cfscc/recommend.html.  The NIH and CDC continue to fund studies that try to promulgate the false premise of psychological problems; studies which are polluted by the inclusion of patients who really do have psychiatric conditions and definitely do not have ME/CFS.  The original diagnostic criteria have been so watered-down in an attempt to include patients who meet the NIH/CDC-desired psychiatric paradigm that now the Incline Village patients from whom the criteria were established don't fit the description of their own disease!

 

Twenty years after the Incline Village epidemic, the CDC admits that 85% of patients have not been diagnosed – and the majority of those who have been diagnosed receive little or no medical treatment. There is still no cure, nor even the hope of one.

 

As long as NIH and CDC continue to bury what is known about this disease, every man, woman and child in America is at risk of contracting the illness. Those who do fall ill soon discover the U.S. agencies do not even have the most basic clinical treatment standards available for their doctors; the information on the CDC website even states that the tests which would be abnormal in ME/CFS are not necessary in diagnosing CFS!

 

It has been more than10 years since Hilary Johnson's Osler's Web was published, exposing the truth which CDC/NIH have tried to hide: ME/CFS was portrayed as a purely psychological problem in order to save money for the government and insurance companies. (Many private disability policies require only two years of payments for mental illness.) CDC/NIH have even misrepresented the results of recent research, proving this leopard hasn't changed its spots.

 

Researcher Dr. Muhammed Yunus says "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." And this is certainly true of CDC's refusal to acknowledge the major biological underpinnings discovered by 5000+ studies here and abroad about this disabling disease. Instead they emphasized how "stress" affects patients, yet again implying a primarily psychological cause, while patients emphasize an infectious onset.  Even patients who were doctors and nurses who fell ill at work and were promptly tucked into a bed in their own hospital have been accused of malingering and psychiatric problems, in complete contradiction of the hospital-chart evidence that their health began to deteriorate with a flu-like illness!

 

Too many doctors still fail to distinguish between the symptom of "chronic fatigue" resulting from overwork/undersleep or as a symptom of other medical conditions and the entirely-different neuroimmune disease of ME/CFS.  We cannot entirely blame the doctors: they're not taught the difference in medical school, and the information disseminated by CDC doesn't help!

 

Dr. Elizabeth Dowsett observes:
"Research workers must be encouraged and appropriately funded to work in this field. However they should first be directed to papers published before 1988, the time at which all specialized experience about poliomyelitis and associated infections seem to have vanished mysteriously!" 
Just coincidentally (or maybe not), 1988 was the date that CDC changed the name from Myalgic Encephalomyelitis to Chronic Fatigue Syndrome.

 

And it's because of that change that every time I cite Dr. Loveless saying that CFS is worse than AIDS, I get verbally abused; people just can't imagine that the silly little name applied to my disease can encompass AIDS-like immune dysfunctions, MS-like neurological problems, Alzheimers-like disorientation, and post-viral heart/brain/spinal cord damage which has been found in multiple autopsies. 

 

Symptoms of paralytic muscle weakness from overuse that are "to be expected" in post-polio patients are disparaged in CFS patients, who are told that "it's absolutely impossible" for muscles to get weaker with use, and that they should use their muscles more to build them up. However, I have personal experience with a post-polio patient, and found that when I followed her doctor's advice to stop using my hands to the point of muscle fatigue, I was able to use them better when I really did need to use them.  If that means that I have to smile sweetly at strange men in public places and ask them to help me open my bottle of juice, so be it; it leaves me that much more functionality when I'm home alone. 

 

But generations of doctors who've grown up after the eradication of polio in the First World have never seen enough patients to make the necessary connection between the symptoms of poliomyelitis and Myalgic Encephalomyelitis,* and those doctors who've seen the epidemics first-hand are now retired.  The generation before mine was the last in the US to have an epidemic; by the 1960s, every child in the US was getting the polio vaccine.  Only because I often socialized upward in age did I get to know as many polio patients as I do.  (There are still periodic outbreaks in the Third World, where vaccines are often unavailable or unaffordable, if anyone wants to study it "up close and personal".)

 

Dr. Bruno notes that after reading his book "you now know more than any doctor you're likely to meet"; this is too often the situation, and I've certainly run into it more than once myself, with doctors who don't even know the most basic information about how to differentiate CFS from depression, and aren't interested in learning when I offer to explain it to them. "There is one thing we still don't understand: why doctors and governments throughout the world refuse to acknowledge, let alone learn about and provide treatment."

 

In the US, this is likely partially influenced by the government's Steve Straus initially ascribing CFS to "depressed menopausal women"; having taken such a stance early on, it is too embarrassing for NIH/CDC to back down so far that they have to admit that it has nothing to do with being depressed, menopausal, or a woman.  Researchers have known for over 20 years that Ampligen, an anti-viral medication, provides a miracle cure for CFS patients, and also acknowledge that FDA cannot approve it because that would require NIH/CDC to say that CFS is a contagious post-viral condition, rather than one based on "stress" or other emotional factors.  Meanwhile, Ampligen is available in other countries; if and when I hit the lotto, I'm going somewhere that has approved it.**

 

Penny-wise and pound-foolish, it has been intimated that because of the cost of Ampligen treatment, it will not be available to Medicaid patients, if it is ever approved for use in the US.  The government would rather pay $15,000+ a year in disability/Medicaid for the rest of your life than to pay $20,000 for one year of Ampligen to get you back to work so you can pay taxes and afford to pay for your own Ampligen treatments!  I am fortunate to have relatives who would and could make me a loan for something guaranteed to get me back on my feet, but I'm getting tired of waiting for it to become available so I can try it.

 

 (Thanks to Steve for his help with the first few drafts of this.  It's always a pleasure to work with you!)

 

FOOTNOTES:
*Dr. Richard Bruno writes "If you had paralysis or muscle weakness, you certainly did have myelitis, an inflammation of the motor neurons in the spinal cord."  He also notes that Coxsackie virus, which has been found in CFS patients, "can cause damage to the brain and spinal cord that is identical to polio."

 

**There are some activists who claim that Ampligen has serious after-effects, and may lead to early death.  My doctor reminds me with each prescription he writes that "every medication has side effects" some of which may not be apparent for a couple decades.  It needs to be a personal decision for each patient whether they feel the benefit outweighs the risk; I, for one, would rather sacrifice 10 years at the end of my life to have some semblance of normal life back now, than to spend the rest of my life feeling this bad because someone else has made the decision for me that I'm not allowed to take the one thing that patients have called a "miracle cure" because the FDA is more focused on the risk rather than the reward.  Easy for them to say, there's no downside for them in not taking it!

 

 

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