by Mary Schweitzer
Twenty years ago, the U.S. CDC concluded that the disease breakout at Incline Village, NV, and other similar outbreaks around the nation, was not Epidemic Neuromyesthenia (as Myalgic Encephalomyelitis, or M.E., was called in the U.S.), but a new disease entity entirely.
CDC epidemiologist Ian Holmes and some members of a committee that had met the previous year on the subject published an article naming the “new” disease chronic fatigue syndrome (CFS), insisted it was not chronic Epstein-Barr Virus (mono or glandular fever), and gave it a definition that looked a lot more like EBV than the disease still known as M.E. in the UK. [The definition of M.E. from Dr. Melvin Ramsay’s textbook on the disease can be found here: http://www.cfids-me.org/ramsay86.html].
In the meantime, in Europe, the World Health Organization (WHO) had published its tenth revision of the International Classification of Disease (ICD-10). By the early 2000’s, every major nation had adopted ICD-10, except the U.S., which is still on ICD-9. In ICD-10, both M.E. and CFS are coded together at G93.3 in the chapter on neurological diseases.
After Canada adopted ICD-10, the National ME/FM Action Network of Canada brought together a committee for a consensus document to help physicians diagnosis and treat the disease ME/CFS. As a group, the clinicians in the group had treated over 20,000 patients. The Canadian Consensus Document that resulted was published in the Journal of CFS in 2003. A summary pamphlet is available online: http://www.mefmaction.net/documents/me_overview.pdf .
Two years ago, the CDC went all-out on a publicity campaign that (finally) stated the disease was significant and debilitating. Some of us thought that perhaps they were going to join the 21st Century. But the CDC went in a different direction.
Using a prevalence estimate closer to that of Britain’s Simon Wessely than the 1999 estimate by U.S. researcher Leonard Jason, they even suggested that there might be as many as four million victims in the U.S. alone, quite a jump from their estimate of 500,000 at an AACFS conference in Boston, 1998. An increase in eight-fold in eight years? Either this is a much more contagious illness than CDC will admit—or there is something wrong with the way the CDC goes about diagnosing the illness in the first place.
Along with the new definition came a new set of pamphlets for physicians: the CDC’s “CFS Toolkit for Professionals,” available on the web at: http://www.cdc.gov/cfs/toolkit.htm
It was pretty and respectful, but in the end had little practical information to offer physicians or patients. According to the CDC, “there is no diagnostic laboratory test or biomarker for CFS.” [CFS Overview]. They offered—as they have offered since the early 1990s—antidepressants and pain killers. But now they also added the solution British psychiatrists offer overseas: There is an entire pamphlet on CBT (cognitive behavior therapy).
CBT is a type of behavioral therapy that is used in everything from drug addiction to major mental disorders. The CDC is not suggesting simple counseling to help the patient accept his or her limitations or live within one’s “energy envelope”—to the contrary, the program assumes the patient accepts a higher degree of limitation than really exists, and needs to be taught or shown how to try to do more. The CDC’s belief that improvement is in the willpower of the patient, if the patient only knew how to use it, can be found in the final sentence of the pamphlet on “Managing Activity”:
“A subset of people with CFS are so severely ill that they are largely housebound or bedbound … Hand stretches and picking up and grasping objects may be all that can be managed at first. Gradually increasing activity to the point patients can handle essential activities of daily living—getting up, personal hygiene and dressing—is the next step.” CFS Toolkit, “Managing Activity”
It apparently has not occurred to the CDC that these patients might be so severely afflicted because they are beset by one or more viruses or other microbes, or have an abnormal immune system that has left them vulnerable to diseases. Who in their right mind would suggest a program of graduated exercise for a person who had viral encephalitis? And yet, that is what patients with HHV-6 have. The problem is that the CDC does not accept the possibility that CFS patients are ill with HHV-6, or enteroviruses (coxsackie viruses, polio viruses), or mycoplasma, or environmental toxins such as black mold. If the solution is behavioral, we must assume, so must be the problem.
In summary, no matter what the CDC statements imply, when it comes to actually dealing with patients, the treatments are almost entirely psychological:
- Cognitive Behavior Therapy, and
- Graded Exercise Therapy.
The only non-psychological treatment offered is painkillers.
With fewer and fewer doctors able to offer anything of use to their patients disabled with ME or CFS in the United States, we cannot wait for a solution far in the future. There already exists a set of criteria for diagnosing, testing, and treating patients with this disease:
The bibliography from the Canadian Consensus Document makes it clear that the barrier to treatment and care for patients in the U.S. is not scientific: it is political. So must the remedy be.
Join the movement to Adopt the Canadian Consensus Document in the U.S. To begin, go to:
Source: Posted to Co-Cure.org by Mary Schweitzer; MAY BE REPOSTED IN FULL