The Feds announced they’ve reversed their decision to stop the contract with the IOM to produce a definition for doctors and are continuing forward……….End of conversation.
The ME/CFS experts have been cut out; career bureaucrats are making the decisions now. This is weird and unsettling in so many ways.
In order to save money the next CFSAC meeting will not be streamed live; meanwhile the the Feds have embarked on an expensive program – no one asked for – to produce a definition of ME/CFS for doctors by people outside the field – that’s already been done. It’s called the Canadian Consensus Criteria and it took ME/CFS experts several years to produce.
Bemoaning his inability to complete a vital ME/CFS project Dr. Lipkin recently castigated the Feds for not funding vital ME/CFS research – yet they may be spending millions of dollars to produce a definition nobody is asking for…..
Please support this movement from Mary Dimmock and friends to stop this waste of money and get ME/CFS experts back into play:
September 17 ME Advocacy Action: Urgent
Tell HHS to Stop the New IOM Contract. Tell HHS Not to Redefine ME.
Despite the strong outpouring of patient opposition to HHS’ August 27 announcement to contract the Institute of Medicine (IOM) to “develop clinical diagnostic criteria for ME/CFS”, HHS announced, on September 12, that is going forward with its contract with IOM to redefine ME. HHS plans on signing the contract with IOM before September 30 and has said it will share information with the ME community only after the contract is finalized and signed.
Adding insult to injury, HHS has announced that the fall CFSAC, long a face-to-face meeting, will not be in person but instead will be held by webinar. We are being told that HHS cannot afford a face-to-face CFSAC meeting but it can waste millions of dollars undoing the science that our experts have already created.
HHS is speaking loudly and clearly. HHS does not want to hear what we have to say about our disease. HHS has every intention of pursuing its plans to redefine ME, unilaterally and in secret. HHS dismisses the definitions of our experts and even questions the hallmark criteria of our disease. HHS has repeatedly stated that they want to use people who have no experience with our disease to develop the criteria for it. And let’s not forget the May allegations of threats of eviction of CFSAC members by an HHS staff person for speaking their minds.
The IOM contract is a waste of precious time and money. It is a waste of our precious lives!
HHS needs to adopt a definition our experts have already created and use that definition to reeducate the medical community and drive an aggressive and fully funded research campaign to validate biomarkers, understand the pathophysiology and identify treatment approaches.
Tell HHS to not sign the IOM contract. Tell HHS to stop trying to redefine our disease and start using what our experts have already created.
Additional background is below.
Immediate Actions You Can Take to Stop the Latest IOM Contract
- Send an email to Secretary Sebelius every day to voice your opposition to this contract. Directions and a sample letter are below.
- Distribute this action alert to your networks and your family and friends, and urge them to send an email.
We can and must stop HHS from wasting precious time and dollars redefining our disease.
If you have questions, please contact MEACTNOW@yahoo.com.
Instructions for Emailing HHS:
- If you are using the sample email provided below, copy the sample email into the body of an email message. If you wish to personalize it, add a sentence or two at the beginning of the letter.
- Add your name and country to the end of the letter.
- Add the Subject Line “Stop the IOM Contract to Redefine ME”. Feel free to change the subject line from time to time to avoid spam filters. Another tip: If you have more than one email account, use one on one day and the other on another.
- Copy the following addresses into the ‘TO” and “CC” boxes
CC: firstname.lastname@example.org, email@example.com, Tomfrieden@cdc.gov, Marilyn.Tavenner@cms.hhs.gov, firstname.lastname@example.org, Mary.Wakefield@hrsa.hhs.gov, email@example.com, firstname.lastname@example.org, MEACTNOW@yahoo.com
The CC includes addresses for the heads of all HHS agencies. The email address MEACTNOW@yahoo.com is used to track the numbers of messages sent.
Sample Email for HHS – To be copied into the body of an email message.
Dear Secretary Sebelius,
I strongly urge the Department to abandon its plan to contract with the Institute of Medicine (IOM) to define its own clinical diagnostic criteria for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).
Researchers and clinicians with years of experience in studying and treating this disease have already created peer-reviewed case definitions – the 2003 Canadian Consensus Criteria (CCC) and the 2011 ME International Consensus Criteria (ME-ICC), which used the CCC as its baseline. These definitions are supported by clinical guidelines for medical practitioners, guidelines also created by experts. These definitions are well regarded by patients, ME doctors, and ME researchers. The CCC has been used both clinically and in research for years.
But rather than adopt these expertly defined disease criteria and the associated medical guidelines, HHS has promoted its own overly broad view of ME that does not require the hallmark symptoms of ME. HHS has questioned these hallmark criteria and misrepresented our disease in its medical education. HHS has even unilaterally reclassified “CFS” to be a subtype of chronic fatigue, in complete opposition to the standards set by the World Health Organization and all other countries that classify this disease as a neurological disease.
Now, HHS is intent on defining its own new criteria for ME using the IOM, an organization whose only effort to define a disease was harshly criticized by Gulf War Illness Advocates for redefining the disease too broadly and for using non-experts to define the disease. HHS has repeatedly stated their intent to use non-experts to define ME. This is a very serious concern for patients who face widespread disbelief every day from the general medical and research community. Adding to these concerns, the description of ME/CFS in the January 2013 IOM report on Gulf War treatments failed to accurately represent ME and listed CBT and GET as treatments, treatments that our experts have said can be harmful.
HHS is progressing the IOM contract unilaterally and with disregard for the overwhelming opposition from the ME community. HHS is undermining the work of our experts while patients are suffering and dying. HHS must stop wasting precious time and dollars. HHS must stop wasting our precious lives.
I strongly urge HHS to abandon its plans to contract with the IOM to define clinical diagnostic criteria for ME/CFS. It is time for HHS to adopt a definition that our experts have created and use that definition to drive an aggressive campaign of fully funded research and to reeducate the medical community.
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