We must keep up the pressure to get the IOM contract cancelled and the CCC officially adopted by the U.S. Department of Health & Human Services.
We must get our Congressional delegations to contact the key Senators and Representatives with jurisdiction over HHS -- the power to hold investigations, cut funding, and basically make the Department uncomfortable. We must email the President, Vice President, and the President's science advisors. We must get HHS to listen and to ACT.
Remember, fifty ME/CFS experts stated in a letter to HHS,“[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...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.” (Emphasis added)
Our ME/CFS experts have spoken. HHS must follow their lead and adopt the CCC. HHS must cancel the IOM contract as wasteful, unnecessary and harmful.
For U.S. residents only:
Please contact your congressional delegation as soon as possible and ask them to contact these congressional leaders 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.
For everybody - U.S. and international members of the community:
Please contact the President’s science advisors as well as the President and Vice President today and ask them to tell HHS to adopt the CCC and cancel the IOM contract. Directions are below.
Also, if you have not done so, please sign the following two petitions calling on HHS to adopt the CCC and cancel the IOM contract. Ask your family and friends to do the same.
- October 7, 2013 petition calling on HHS to stop the HHS/IOM contract and accept the CCC definition - http://bit.ly/GUedsp
- June 2013 petition calling on HHS to adopt the CCC and stop using the name ‘chronic fatigue syndrome’ http://www.thepetitionsite.com/255/349/958/fatigue-is-not-a-disease/
Instructions to Email or Call Your Congressional Delegation (U.S. only)
- Senators and members of the House of Representatives need to hear directly from their constituents. You can get the contact information for your congressional delegation at this website:
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.
- 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.
- If you are using the sample letter, copy it into the box provided for your message.
- Use “Stop the IOM Contract to Redefine ME/CFS" as the subject.
- Select a choice dealing with healthcare if needed.
To be copied into the web contact form:
I am asking you to contact one or more of the following Senators and Representatives who chair committees with jurisdiction over the Department of Health and Human Services (HHS): Senators Harkin, Murray, Alexander, Mikulksi, Shelby, Sanders, and Burr; and Representatives Upton, Kingston, Pitts, Pallone, DeLaura, Rogers, and Lowey, on my behalf. Ask them to contact HHS today and tell Department to follow the lead of Myalgic Encephalomyeltis/Chronic Fatigue Syndrome (ME/CFS) disease experts. Ask them to tell HHS to adopt the Canadian Consensus Criteria and cancel its contract with the Institute of Medicine (IOM) to redefine ME/CFS.
Fifty of the leading ME/CFS researchers and clinicians have written to HHS Secretary Kathleen Sebelius calling for the Canadian Consensus Criteria (CCC) to be used as the sole case definition for ME/CFS. These experts also urged HHS to abandon its plans to contract with the Institute of Medicine (IOM) to use non-experts to create its own definition. On the same day, despite an outpouring of patient opposition, HHS announced that it was going forward with the IOM contract to develop its own clinical diagnostic criteria for ME/CFS, instead of adopting the 2003 Canadian Consensus Criteria (CCC) created and endorsed by ME/CFS experts.
Regarding the IOM contract, the fifty experts stated,“[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 ... 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.”
The use of non-experts is especially concerning because, thanks to the bad definitions that HHS has promoted, the disease is so poorly understood that the medical community at large believes the disease is either not real or is a form of depression or deconditioning. ME/CFS is not deconditioning or depression. It is a devastating 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.
Given the overwhelming opposition to HHS’ plans by both patients and experts, I am asking you to do whatever you can to get HHS to follow the lead of ME/CFS disease experts. HHS must cancel the contract with IOM. HHS must adopt the Canadian Consensus Criteria.
For more information, see the following links or send an email to firstname.lastname@example.org.
- Link to Sept 23 announcement from HHS on the IOM contract - http://bit.ly/18m7XlJ
- Link to letter to Secretary Sebelius from the 35 ME/CFS experts -http://bit.ly/15npS9B
- Link to additional background - http://bit.ly/16qOLY3
Instructions for Contacting President Obama’s Science Advisors, President Obama, and Vice President Biden:
- Copy and paste all but the first paragraph of the sample message below into the body of the content form.
- Substitute "Please order HHS to adopt the Canadian Consensus Criteria and cancel its contract with the Institute of Medicine (IOM) to redefine ME/CFS." for the first paragraph.
- Send the modified email to the President's science advisors: email@example.com (cc firstname.lastname@example.org).
- Some of these emails are bouncing back. The President has 18 PCAST advisors. Just in case they are not receiving the message, use the form at http://www.whitehouse.gov/administration/eop/ostp/contactus. Scroll down to “PCAST” on the menu and fill out the rest of the required information. Copy and paste the modified message for the body of the content form.
- Go to http://www.whitehouse.gov/contact/submit-questions-and-comments, check "Health & Human Services" for the subject, and copy and paste the modified message to President Obama and Vice President Biden.
Background Information (not to be included in the sample letter)
Note: For those who are telephoning or meeting with their Congressional delegations, the following also are fodder for talking points.
On September 23, HHS announced that it had engaged the Institute of Medicine (IOM) to develop “clinical diagnostic criteria” for ME/CFS. That announcement can be found here: http://bit.ly/18m7XlJ
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 (HHS) Secretary Kathleen Sebelius announcing they have reached a consensus on adopting the Canadian Consensus Criteria (CCC), calling on HHS to adopt the CCC as the sole definition for ME/CFS and urging HHS to abandon its plans to develop its own diagnostic criteria. Fifteen additional experts added their signatures to this letter in October. The letter can be found here: http://bit.ly/15npS9B
General background can be found here http://bit.ly/16qOLY3.
Additional facts about the HHS/IOM contract for ME/CFS can be found here – http://bit.ly/1hIz4ej