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Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a serious, often
disabling, neuroimmunue disease affecting hundreds of thousands of American men,
women and children, and millions of people worldwide. In order to jump start
progress and lead to much more rapid advancement in research and care for
ME/CFS patients, 50 ME/CFS experts have,
in an open letter to Secretary Sebelius:
adopted the Canadian Consensus Criteria (CCC),
strongly urged HHS to follow their lead by using the
CCC as the sole case definition for ME/CFS in all of HHS’s activities
related to this disease,
cautioned Secretary Sebelius that failure to do so will
significantly impede research and harm patient care and
strongly urged Secretary Sebelius to abandon efforts to
engage the Institute of Medicine (IOM) because it lacks the needed
expertise to develop “clinical diagnostic criteria” for ME/CFS and because doing
so would would waste scarce taxpayer funds and threaten to move
ME/CFS science backward by engaging non-experts in the development of a
case definition for a complex disease about which they are not
a disease as complex as ME/CFS is not purely an intellectual exercise. It
requires the expertise of ME/CFS specialists who have substantial experience in treating and researching this disease. The IOM does not have that necessary expertise, just as it
didn’t for Gulf War Illness, a disease as complex as ME/CFS and the first
disease the IOM has tried to define. Shamefully, the IOM
had to admit that it was unable to do so despite having been paid $850,000 of taxpayer money for it. If the ME/CFS IOM study proceeds, the continued abuse of ME/CFS
patients based on an unscientific and flawed IOM definition is all but
guaranteed for decades to come.
IOM study is a train headed for a cliff that needs to be stopped now before any
more taxpayer money is wasted and before patients are further harmed. Please
join this advocacy movement to stop the IOM from redefining a disease that our
experts have already defined and participate in this Thunderclap campaign before the day
of the next IOM meeting on May 5, 2014. Let our voices be heard!
Please ask friends to support us. Thank you!
April 22, 2014
Just a quick status update. We broke 200 today. That is more than 200% of the projected number of supporters. Thanks to all of you who have participated. It is so much appreciated!
Let's see if we can make it to 300 or more. We almost have 2 weeks left to go. If you are able, would each of you please ask three other people to sign up. It's hard for me to drum up support all by myself. There is strength in numbers.
I am a member of the strong ME/CFS advocacy movement that calls for the termination of the HHS/IOM contract and supports the ME/CFS experts' recommendation to Secretary Sebelius to immediately adopt the Canadian Consensus Criteria.