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Patients to DHHS: This problem needs to be fixed now

Posted Jun 05 2013 7:10am
Picture This is a letter written by Mary Dimmock, whose son has ME, to the entire CFS/ME community. Mary has been a steady ME advocate, testifying at FDA and CFS Advisory Committee meetings, and, most recently, helping to form the National Advocacy Alliance for ME ( NAAME ). In this letter she provides some background information for the recent  DHHS letter  sent by several ME/CFS organizations and advocates. Specifically, she answers the question: Why change the name? 


There shouldn't be any doubt in anyone's mind that chronic fatigue syndrome, as a name and as a diagnosis, has to be dropped. Let's do that now.  Sign the petition.

Dear Patients, Caregivers and Advocates

Of all the issues that we face today, the one which has created the most problems is the use of multiple, diverse, and overly broad “CFS” definitions. This single issue has severely affected research, drug development and clinical care and has misled the medical community on the very nature of this devastating disease, causing many doctors to dismiss their patients’ suffering. Until we stop this confusion over the nature of the disease, patients will continue to pay a terrible price.

Today, the CDC states that “chronic fatigue syndrome” can be described by any of a set of diverse definitions. Some, like the Canadian Consensus Criteria and the ME International Consensus Criteria, require the hallmark symptom of post-exertional malaise (PEM) as well as neurological and immunological impairment. But the two most commonly used definitions, the Fukuda (also known as CDC) and Oxford criteria, do not require this hallmark symptom. In fact, the Oxford definition only requires six months of disabling fatigue and allows primary psychiatric disorders.

The result? Myalgic encephalomyelitis, the disease seen in outbreaks throughout the twentieth century and recognized by the World Health Organization in 1969, has disappeared. In its place, we have the catchall term “CFS”, which has been associated in the literature with depression, deconditioning, medically unexplained chronic fatigue, and, for some researchers and clinicians, fatigue due to “excessive rest” or “false illness beliefs.” In clinical practice, the diagnosis of “CFS” is given to a variety of patients – those with ME, those with the conditions listed above, and those who have been misdiagnosed or whose doctors use “CFS” as a catchall for unexplained fatigue.

Exactly what disease are we talking about here?

As Dr. Carruthers stated in the ME International Consensus Criteria, “Research on other fatiguing illnesses, such as cancer and multiple sclerosis, is done on patients who have those diseases. There is a current, urgent need for ME research using patients who actually have ME.” We must have a disease appropriate definition for ME that is separate and distinct from all the other unrelated conditions encompassed by the overly broad, fatigue-focused “CFS” definitions.

To that end, a group of patient organizations and advocates have submitted the letter at this link (http://bit.ly/18hDBE4) asking the Department of Health and Human Services (DHHS) to adopt the Canadian Consensus Criteria, to stop using the term “CFS” and the non-specific definitions like Oxford and Fukuda, and to fully engage ME patients and experts in the planning and execution of this transition.

You may ask whether we really know enough about the disease or whether we need more study before we change definitions. Certainly, with more study, we can better operationalize the definition and validate biomarkers to make patient diagnostics easier. And we must get rid of the six-month waiting period. But in the meantime, we know that PEM is a hallmark symptom that reflects a distinctive biological pathology. We must use a definition that includes this pathway, and stop using the Fukuda criteria, which does not.
Some of you may prefer the ME International Consensus Criteria over the Canadian Consensus Criteria. 

The ME-ICC has some excellent features. But practically speaking, the Canadian Consensus Criteria has been used clinically and in research for a decade. Studies have been successfully completed using the Canadian criteria. The U.S. government has posted the IACFS/ME Primer, which is based on the Canadian Consensus Criteria, on DHHS’ Guidelines.Gov.

Changing the definition is going to be difficult, but adopting the Canadian case definition is more likely to be acceptable to the DHHS as a reasonable first step, especially when considered against the alternative of continuing to use the inadequate Fukuda criteria while more studies are done.

What about dropping the name “CFS”? You may be concerned that this means we will lose the literature base that has provided insights into the pathology of ME. Admittedly, some of the best articles have used the term “CFS.” And so have some of the worst. The point is that the literature base is a mess because the same label, “CFS,” has been used for multiple unrelated definitions for many years. When the term “CFS” is employed as the only label for so many different conditions, it loses all meaning. We need to stop using it.

Finally, what about the name ME? Does it really describe the disease? Is there a better name? That is a question that science will need to decide over time, but it is something that has happened in many other diseases which have changed their names as more information about them comes to light. What is clear is that “chronic fatigue syndrome” will never be an appropriate name for this illness, and should never have been established as a synonym for ME.

Patients have paid dearly with lost lives for the CDC’s failure to address definitional issues for the last thirty years. We cannot wait for more study to finally stop the harm being done to patients by the continued use of these overly broad definitions.

This problem must be addressed now.

You can help. Please  sign the petition  calling on DHHS to stop the confusion and start using the Canadian Consensus Criteria as a disease appropriate definition for ME.

If you have any questions, send an email to  mecfsaction@yahoo.com .
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