Dear Patients, Caregivers and Advocates
Of all the issues that we face today, the one issue that has created the most problems is the use of multiple, diverse and overly broad “CFS” definitions. This single issue has severely impacted research, drug development and clinical care and misled the medical community on the very nature of this devastating disease, causing many doctors to disbelief their patients. Until we stop this confusion on the nature of the disease, patients will continue to pay a terrible price.
Today, CDC states that “CFS” can be described by any of a set of diverse definitions. Some, like the Canadian Consensus Criteria and the ME International Consensus Criteria require hallmark criteria like PEM and neurological and immunological impairment. But the two most commonly used definitions, Fukuda and Oxford, do not require these hallmark criteria. In fact, Oxford only requires 6 months of disabling fatigue and allows primary psychiatric disorder.
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 were 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 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 and we stop using Fukuda and instead utilize a disease definition that requires that symptom.
Some of you may prefer the ME International Consensus Criteria over the Canadian Consensus Criteria. The ME-ICC has some excellent features. But practically, the Canadian Consensus Criteria has been used clinically and in research for a decade. Studies have been done with it. The U.S. government has posted the IACFS/ME Primer, based on the Canadian Consensus Criteria, on DHHS’ Guidelines.Gov.
Getting any change on the definition is going to be difficult, but this is more likely to be acceptable to DHHS as a reasonable first step, especially when considered against the alternative of continuing to use Fukuda while more study is 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 used the term “CFS”. And so do some of the worst. The point is that the literature base is a mess because the same label, “CFS”, has been inexplicably used for these multiple unrelated definitions for many years. When the term “CFS” is used as the one label for so many different conditions, it loses all meaning and we need 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, something that has happened in many other diseases. But what is clear is that “chronic fatigue syndrome” will never be an appropriate name and should never have been established as the alternative or synonym for ME.
Patients have paid dearly with lost lives for CDC’s failure to address the 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 firstname.lastname@example.org.