HHS wants to turn Nancy Lee’s use (at CFSAC meetings) of the phrase “Nothing about us, without us” into “Everything about you, without you” particularly when it comes to defining ME and keeping ME stakeholders and experts out of the equation.
The Federal fiscal year ends Sept. 30th, so the contract would need to be signed by then.
“We continue to work on a contract with the Institute of Medicine (IOM) to develop recommendations for clinical diagnostic criteria. When the contract is finalized, we will provide additional information via the CFSAC listserv and website.”
HHS is moving ahead on the IOM contract unilaterally – with total disregard for the overwhelming opposition from the ME community. HHS is undermining the work of ME experts while patients are suffering and dying.
Tell HHS to Stop the IOM Contract to Redefine ME(cfs)!
Subject line (variations encouraged): Stop the IOM Contract to Redefine ME/CFS!
Send emails to : Kathleen.Sebelius@hhs.gov
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 , email@example.com , MEACTNOW@yahoo.com
Sample email (feel free to adapt)
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.
(sign your name)