This is what the fuss is about:
The IOM contract to redefine ME/CFS is the most dangerous thing that could possibly happen to the ME/CFS community. It is worse than no funding, worse than bad research, worse than having all your friends think you are malingering. Once the IOM defines ME/CFS as a subset of "fatiguing illnesses" (which it will) and recommends GET and CBT as treatments (which it will), ME/CFS will be permanently transformed into a mental illness.
There will be no NIH funding for any research unless it supports the notion that ME/CFS is "all in our heads."
There will be no FDA-approved treatments - ever - other than antidepressants.
In short, once HHS (and the CDC, FDA, NIH and Social Security) accepts the IOM "definition" we can kiss everything good-bye. That is why 35 physicians and researchers stepped up to the mat and wrote to HHS.
You can help by exercising your rights as a U.S. citizen. This is a participatory democracy, which means elected officials have to listen to you. Write to your representative. (I just wrote a letter to my Senators, following Mary Dimmock's instructions below. It only took a minute or two,)
Tell Congress to Listen to Our Experts! Adopt the CCC - Cancel the IOM Contract!
By Mary Dimmock
On September 23, HHS announced that it will begin working with the Institute of Medicine (IOM) to develop “clinical diagnostic criteria” for ME/CFS.
That 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 that they had 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 work with Institute of Medicine staff to develop clinical diagnostic criteria for an illness the IOM knows nothing about.
Our ME/CFS experts have spoken. We need to support them and call on HHS to follow their lead. Adopt the CCC. Cancel the IOM contract as wasteful, unnecessary and harmful.
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.
The petition in support of the physicians' letter can be found HERE.
Instructions to Email or Call Your Representative (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 leaders HERE.
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.
If you are calling, ask to speak to the legislative aide who deals with healthcare issues. You can use the sample letter as talking points.
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.
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.
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
Scroll down to “PCAST” on the menu and fill out the rest of the required information.
Copy and paste the sample message into the body of the content form.
Add your name to the end of the message.
To be copied into the web contact form and/or used for phone calls:
Dear [ Your Representative],
Please contact the Department of Health & Human Services (HHS) today. Tell HHS to:
- Adopt the Canadian Consensus Criteria for ME/CFS and
- Cancel its contract with the Institute of Medicine (IOM) to redefine ME/CFS.
On the same day that HHS announced that IOM would begin work, thirty-five of the leading ME/CFS researchers and clinicians responded by writing to Health and Human Services Secretary Kathleen Sebelius. The ME/CFS experts urged HHS to abandon its plans to hire the Institute of Medicine to create its own definition. They called for the Canadian Consensus Criteria (CCC), which experts have long considered to be the most accurate case definition, to be used as the sole case definition for ME/CFS.
As their 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. The CDC estimates that over a million people in the U.S. suffer from the illness. 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’ used for this disease by HHS since 1994, patients with ME/CFS are lumped together with patients with depression, deconditioning, and unspecified chronic fatigue. This broad case definition has also led to the misdiagnoses of thousands of patients with MS, incipient heart disease, and genetic disorders. The use of overly broad definitions, like the one now being developed by the IOM, has impeded ME/CFS research and held back 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. http://bit.ly/18m7XlJ
Link to the September 23 letter to Secretary Sebelius from the 35 ME/CFS experts http://bit.ly/15npS9B
Link to additional background http://bit.ly/16qOLY3