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.