[Co-Cure ME/CFS & Fibromyalgia Information Exchange Forum Logo]

The CDC is Redefining ME/CFS -- We Need to Redefine our Advocacy Approach

by John Herd
June 13, 2007

Just because the Pied Piper is playing the only song in town, should we follow him into the Weser river? Do we follow a piper, such as the Centers for Disease Control's CFS program, just because it is the only agency expending considerable dollars on ME/CFS? Many seem to feel that is enough reason to support the piper. But, what if the beliefs of such a piper about ME/CFS are potentially very flawed? More importantly, what if those beliefs appear to be in significant opposition to our scientific and medical best interest as patients with ME/CFS?

Such is the logic of continued advocacy efforts to increase funding for the CDC's research program on CFS. Some feel because the CDC has been conducting the bulk of the government's medical research on the illness that we should follow the pied piper and that we should enthusiastically support the health department's ME/CFS research funding with no restriction on how it would be used. However, this approach makes an assumption. The assumption is that increased spending is evidence that funds will be used in a helpful, rather than a harmful, manner.

We've seen far more biologic research advancements in the understanding of ME/CFS coming from independent (extramural) research than from the health department. In fact, I suspect that much of the biological findings pertaining to ME/CFS are not attributable to the efforts of the health department. This was evident at the January 2007 IACFS Conference.

A significant portion of the health department's ME/CFS funds have been expended on research that has had little or nothing to do with finding a root biological cause (or causes) of pure ME/CFS. A great deal of this research focuses on how fatigued patients perceive symptoms and react to stress. Some of the health department's research may well impede efforts to get closer to an end goal of finding a cause and effective treatments. Their research could deleteriously change perceptions about the illness.

Now we're seeing the CDC CFS research program gradually redefine what ME/CFS is through the development of new, and allegedly "scientific", tools. Their use of the Symptom Inventory, the Medical Outcomes Survey Short Form-36 (SF-36) and the Multidimensional Fatigue Inventory (MFI are too inclusive. The end result of this "integrative" approach is that they appear to be mixing psychological disorders into the pot they're calling CFS. Gradually, the CDC has changed the CFS case definition from an true clinical identity to a "fatigue" research soup.

Even worse, the CDC CFS research program intentionally restricted their "landmark" genetic profiling study to only include results pertaining to neuroendocrine (stress response) aspects. Why announce research findings as "landmark" that do not comprise a complete genetic picture? Could it be that such an announcement, based on a restricted investigation of the genetic picture of CFS, was used to validate their interest in post-traumatic stress?  It's not hard to utilize science to validate whatever results a person wants to achieve, if they are so inclined. It happens all too often.

The CDC knows what they are doing. They would not use these protocols if it were not their intent to obtain results that portray ME/CFS as a stress response disorder.

There is a long history of Dr. Reeves' involvement with stress response type research and his belief that it may play a role in CFS. At a meeting for Gulf War Syndrome in 1998, Reeve's stated that CFS was probably caused by "multiple major lifetime stresses in the year before one becomes ill" (1). Dr. Reeve's now holds a position in the Department of Psychiatry at Emory University, as does another author of the CDC's latest prevalence article.

Don't just accept my word for it. Read Leonard Jason's in-depth review of the CDC's latest prevalence data. (http://iacfs.net/p/1,544.html) Leonard Jason is a leading expert in the fields of medical statistical research and the various ME/CFS diagnostic criteria. Jason is also a respected psychologist with great insight into psychiatric conditions that have overlapping symptomatology with ME/CFS.

Remember, just because a scientist declares an illness to be "real" and to have a "biological basis", is not evidence that he has come to believe that illness is not a psychiatric disorder. All psychiatric conditions, and in fact all thoughts, are considered to be real and biological, because they are all of electro-chemical origin in the brain.

Kim McCleary, President and CEO of the CFIDS Association of America states, "The [CDC's] study is also a call to action to increase research funding to enable scientists to determine the cause or causes of CFS and to identify more effective treatment options to help patients manage this debilitating, and often disabling, condition." The problem with such a statement is that it shows no concern for how money is spent. In fact, wouldn't such a statement endorse the health department's flawed beliefs about CFS? Most likely, yes. Political advocacy can produce harmful results, if we are not led by leaders who care how DHHS money is spent. We need leaders who go beyond calling for more funding to articulate specific research needs.

We in the United States need an independent non-profit body of expert ME/CFS doctors to act as a research advisory source -- a conduit for private ME/CFS research funding. This body would function along similar lines of ME Research UK. Forming such a resource would not be enough though. We the people, the patients, would need to fund the research. And why shouldn't we? After all, we're the ones to benefit from it. We need to take direct responsibility, through research donations, if we're to find the cause of our illness and more effective treatments. Isn't that a worthwhile investment?

Given the figure of one million Americans afflicted by ME/CFS, if we each donated just $10 a year, those donations would amount to far more than our health department is spending on ME/CFS research. That $10 is equivalent to a few Starbucks cappuccinos, or Big Macs, annually. And for the cost of one month's Internet service per person, we could probably triple that research. The problem is that over the years few patients or families of patients have donated to private research. Many of those who have done so have stopped because of displeasures with the current ME/CFS organizations. It is time to ask all patients to become part of a solution toward progress, rather than remaining inactive.

Let's determine our own futures. If doctors will establish such a non-profit for funding research, I'll donate the first check.

_______________________________

1. Reeves, W., Chief, Division of Viral Exanthems and Herpes Virus Branch, National Center for Infectious Diseases, Centers for Disease Control and Prevention, testimony before the Presidential Advisory Committee on Gulf War Veterans' Illnesses, November 1995.

[Return to index]


Copyright © 2007 Co-Cure
Last Revision: June 13, 2007
Please report any problems with this page to the Webmaster.