Thank you to our ME/CFS experts

Myalgic Encephalomyelitis (ME), also called chronic fatigue syndrome (CFS) or ME/CFS is a debilitating disease that causes profound neurological and immunological dysfunction. The disease is accurately described by the Canadian Consensus Criteria (CCC), created and used by experts for both research and clinical care.

But Health and Human Services (HHS) has rejected the Canadian Consensus Criteria. Instead, HHS has characterized ME/CFS as unexplained fatigue and lumped it together with conditions like depression and deconditioning. This has stalled research and drug development and left too many doctors not even believing that patients are really sick.

But no more! On September 23, thirty-five of the leading ME/CFS experts sent a letter to Secretary Sebelius announcing that they had reached consensus on the use of the Canadian Consensus Criteria as the sole definition for ME/CFS and urging HHS to abandon its plans to contract the Institute of Medicine to develop its own criteria for ME/CFS.

This is a remarkable and unprecedented letter. 

We applaud these experts for showing exactly the kind of leadership and courage that is needed to change the future for ME/CFS patients. Please join us in sending them a note to thank them and show them our support. 

Additional background

The letter from ME/CFS experts to Secretary Sebelius is here - http://bit.ly/15npS9B

HHS has contracted with the Institute of Medicine (IOM) to develop its own clinical criteria for ME/CFS. The description of the IOM contract is here http://bit.ly/18m7XlJ. 

In the letter to Secretary Sebelius, the 35 leading ME/CFS experts rejected the IOM contract as wasteful and unnecessary since there was consensus on the use of the Canadian Consensus Criteria as the sole definition. Further, they raised concerns that the IOM initiative would set ME/CFS science backwards. 

More about ME/CFS

ME/CFS has been described as a one way ticket to hell. ME/CFS affects up to one million Americans. Patients can be as young as 5 years old and can be sick for 20, 30, 40 or more years. ME/CFS leaves an estimated 25% of patients housebound or bedridden and 50-85% of patients are unable to work. Patients can die many years prematurely due to cancer, cardiac disease and suicide. The estimated impact to the U.S. economy $17-23 billion dollars annually in lost productivity and direct medical costs. 
 

The following thank you message will be sent to the signatories of the letter sent to Secretary Sebelius once at the end after signatures have been collected

Thank you for your letter to the Department of Health & Human Services (HHS) stating your consensus on the use of the Canadian Consensus Criteria as the sole definition for ME/CFS, for calling on HHS to adopt CCC for all its activities, and for urging HHS to abandon its Institute of Medicine (IOM) study to develop it's own clinical diagnostic criteria for ME/CFS. 



For decades, the stunning lack of clarity on the nature of ME/CFS has severely impeded research, perverted clinical care, stigmatized patients and left our country with a huge economic burden. We applaud you for showing exactly the kind of leadership and courage that is needed to change the future for ME/CFS patients and their families. We stand ready to support you and follow your leadership in achieving this. We call on HHS to do the same, starting with immediate adoption of the Canadian Consensus Criteria and abandonment of HHS’ plans to create its own criteria.