Please Sign Petition: Thank You to Our ME Experts

Link to Petition:

Our experts have taken a brave and trailblazing stand for ME patients by agreeing, in an open letter to Secretary Sebelius, on an official definition for “ME/CFS,” the Canadian Consensus Criteria (CCC).  This is what Secretary Sebelius has been asking for, a consensus on the disease definition coming from the medical community. It’s here now. When HHS entered into the IOM contract to produce a case definition, it was not aware that our experts had already agreed on one. Therefore, the only reasonable response from Secretary Sebelius to the open expert letter is to rescind the IOM contract, as the experts strongly urged, and to use the about $ 1 million dollars in tax-payer money set aside for that contract where it is much more urgently needed and far more efficiently utilized: for bio-medical ME research.

Our experts deserve our deepest gratitude for uniting and standing up for us in this monumental way and, maybe even more importantly, for not wavering in the face of unrelenting, if subtle, pressure from the CFIDS Association of America and most likely other powers that be to change their position. That has taken some real integrity. We are witnessing a truly groundbreaking moment!

Please show your gratitude by signing the petition linked in the first sentence above. If you are comfortable using your name, as the overwhelming majority of people who have signed so far have done, that will be so much more meaningful to our experts and carry a lot more weight than signing anonymously. Please ask friends, family, neighbors, colleagues, etc. to sign as well. It literally takes less than a minute. When you sign, make sure to opt out of receiving further emails from the petition site if don’t wish to receive those.

Here is the petition language:

“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 –

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

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.

This entry was posted in Uncategorized and tagged , , , , , , , , , , , , , , . Bookmark the permalink.

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s