Wednesday, September 25, 2013

Support and Thank Our Experts! Adopt the CCC & Cancel the IOM Contract.

Our ME/CFS experts have spoken. We need to support them and call on HHS to follow their leadAdopt the CCC. Cancel the IOM contract as wasteful, unnecessary and harmful.

On September 23, HHS announced that it will begin working on the initiative with the Institute of Medicine (IOM) to begin work to develop “clinical diagnostic criteria” for ME/CFS. That announcement can be found here:

The same day, 35 of the leading researchers and clinicians in the field of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) sent an open letter to Health and Human Services Secretary Kathleen Sebelius announcing they have reached a consensus on adopting the Canadian Consensus Criteria (CCC) as the research and clinical case definition for ME/CFS. They called for 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 the disease and strongly urged HHS to abandon its plans to reach out to groups like the Institute of Medicine to develop clinical diagnostic criteria.

The Sept 23, 2013 open letter from ME/CFS researchers and clinicians to Secretary Sebelius can be found here:

Let's support these experts by signing and sharing this petition!  

Each of the experts will receive the following thank you message with all signatures and comments attached:

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.  

(Thanks to Mary Dimmock for pulling everyone's thoughts together to create this petition.)

October 5, 2013 Update: Due to the U.S. federal government shutdown, Congressional staff are not being paid and are unlikely to be at work answering the phones or emails.  Thus, please direct your attention to supporting the petition above until further notice.  

For U.S. residents: Please contact your congressional leaders and the President’s science advisor today and ask them to tell HHS to adopt the CCC and cancel the IOM contract. Please ask your family and network to do the same.

Instructions and a sample letter are below.

Additional background can be found here:
Answers to frequently asked questions (FAQ) can be found here: 

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Instructions for Emailing or Calling Your Congressional Leader (U.S. only)

  1. Senators and members of the House of Representatives need to hear directly from their constituents. You can get the contact information for your congressional leaders at this website:


  1. Type your zip code into the form and click on “Submit It”. The website will return the names of your two senators and one representative along with their phone numbers and a link to their contact form.   
  2. If you are calling, ask to speak to the legislative aide that deals with healthcare issues. You can use the sample letter as talking points.
  3. If you are sending an email, click on the link to the web contact form for your senators and representative. This will bring up the web contact form for that legislative leader. 
  4. If you are using the sample letter, copy it into the box provided for your message. 
  5. Use “Stop the IOM Contract to Redefine ME/CFS" as the subject. 
  6. If the online form indicates that you need to choose the nature of the issue, select a choice dealing with healthcare. 

Instructions for Contacting President Obama’s Science Advisors

  1. Go to
  2. Scroll down to “PCAST” on the menu and fill out the rest of the required information.
  3. Copy and paste the sample message into the body of the content form.
  4. Add your name to the end of the message.

Sample Message 

To be copied into the web contact form and/or used for phone calls:

I am asking you to contact the Department of Health & Human Service (HHS) today and tell them to follow the lead of Myalgic Encephalomyeltis/Chronic Fatigue Syndrome (ME/CFS) disease experts. Tell HHS to adopt the Canadian Consensus Criteria and cancel its contract with the Institute of Medicine (IOM) to redefine ME/CFS.

On September 23, HHS announced that it has contracted with the IOM to develop clinical diagnostic criteria for ME/CFS, rejecting the use of criteria created by ME/CFS experts, including the 2003 Canadian Consensus Criteria (CCC). HHS pursued the contract unilaterally with virtually no if any involvement of ME/CFS experts or patients. Further, HHS has stated that it intends to use people with no expertise in ME/CFS to redefine ME/CFS. Adding to the concerns, the IOM’s only other effort to define a disease has been harshly criticized by Gulf War Illness (GWI) advocates for using non-experts, emphasizing psychiatric issues over evidence of chemical injuries and moving it toward a broadly defined symptom-based syndrome. For all these reasons, ME/CFS patients have been protesting the IOM contract for weeks but HHS went ahead with the contract anyway.

Its important to note that on the same day that HHS announced that IOM would begin work, thirty-five of the leading ME/CFS researchers and clinicians wrote to Health and Human Services Secretary Kathleen Sebelius calling for the Canadian Consensus Criteria (CCC) to be used as the sole case definition for ME/CFS. The ME/CFS experts also urged HHS to abandon its plans to contract with the Institute of Medicine to create its own definition.

This is an unprecedented statement by our top experts and indicates researchers and clinicians are able and willing to the use the CCC now and improve on it as science develops. As the letter states, “[S]ince the expert ME/CFS scientific and medical community has developed and adopted a case definition for research and clinical purposes, this effort (the IOM study) is unnecessary and would waste scarce taxpayer funds that would be much better directed toward funding research on this disease. Worse, this effort threatens 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 knowledgeable.”

I have been personally affected by ME/CFS. It is a debilitating disease that causes neurological and immunological dysfunction and leaves patients bedridden, housebound and unable to work. ME/CFS costs the U.S. economy an estimated $17-23 billion dollars a year in lost productivity and direct medical costs. Due to the overly broad ‘case definition’ (criteria) used for this disease by HHS since 1994, patients with ME/CFS are lumped together with patients with depression, deconditioning and unspecified chronic fatigue. The use of these overly broad criteria has impeded ME/CFS research and severely impaired medical care for patients like me.

Given the overwhelming opposition to HHS’ plans by both patients and experts, I am asking you to contact HHS today and tell them to follow the lead of ME/CFS disease experts. Tell HHS to adopt the Canadian Consensus Criteria. Tell HHS to cancel the contract with IOM.

-Link to the September 23 announcement from HHS on the IOM contract:
-Link to the September 23 letter to Secretary Sebelius from the 35 ME/CFS experts:
-Link to additional background:
This Action Alert was put together by a group of ME advocates, including me.

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