We remember Nancy Lee saying “Nothing about us without us”…
In Chronic Fatigue Syndrome Advisory Committee (CFSAC) discussions Designated Federal Official (DFO)Nancy C. Lee, M.D. has used the phrase “Nothing about us without us” implying that stakeholders should be involved in all things regarding ME/CFS.
But (on Sept 12th) HHS says:
“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. This topic will be included as an agenda item for the November webinar.”
Yet CFSAC members, ME experts and ME stakeholders have been shut out of the HHS/IOM contract development and process.
Sooooo, how exactly is that “Nothing about us without us”? (Just to be clear — the question is in jest.)
Because the reality is that HHS is moving ahead on the IOM contract unilaterally and 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.”
Take action today(!) and everyday (if you can).
Share widely and encourage others to act!
Tell HHS ENOUGH IS ENOUGH!
Subject line (variations encouraged): Stop the IOM Contract to Redefine ME/CFS
Send (daily) emails (from many people from any country) to:
CC: howard.koh@hhs.gov , txf2@cdc.gov , Tomfrieden@cdc.gov, Marilyn.Tavenner@cms.hhs.gov , margaret.hamburg@fda.hhs.gov, Mary.Wakefield@hrsa.hhs.gov , collinsf@mail.nih.gov , richard.kronick@hhs.gov , cfsac@hhs.gov , MEACTNOW@yahoo.com
Email templates can be found here: http://www.occupycfs.com/2013/09/17/insult-meet-injury/#comments
and here: https://www.facebook.com/events/705280782832088/
(MEACTNOW@yahoo.com is used to tabulate emails sent)
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)
Background info for those sending emails (do not include with email) —— https://dl.dropboxusercontent.com/u/89158245/Action%20Alert%20Sept%2017%20HHS%20on%20IOM.pdf
Another Non-Answer from HHS
Published November 25, 2013 Uncategorized Leave a CommentTags: advocacy, allegations, assistant secretary koh, Assistant Secretary of Health, CFSAC, Department of Health and Human Services, Designated Federal Officer, DHHS, early onset ME/CFS, Health and Human Services, howard koh, investigation, Jedi mindtricks, Jennie Spotila, ME, ME/CFS, Nancy Lee, public comment, upcoming events
Remember the allegations of intimidation at the May 2013 CFSAC meeting?
Remember the letters sent asking for an investigation of those allegations?
It seems fair to say that HHS (Department of Health and Human Services) is running true to form, because yet again we have a NON-answer from them…
Read more about it at this OccupyCFS post :
http://www.occupycfs.com/2013/11/25/nothing-to-see-here/
“Nothing to See Here
November 25th, 2013 Jennie Spotila Leave a comment Go to comments
After more than four months, Assistant Secretary Dr. Howard Koh has finally responded to our request for an investigation into the allegations that Dr. Nancy Lee attempted to intimidate at least two voting members of the CFS Advisory Committee. His response boils down to something along the lines of, “Ok people, move along, nothing to see here.” In fact, his letter is so dismissive of the allegations and so vague on what he’s done about it, that it barely qualifies as a response at all.”
REMINDER – Public comment for CFSAC is due Friday Nov 29th(https://www.blsmeetings.net/CFSACdec2013/publicComments.cfm) — If you are still working on your public comment, consider adding in your take on this much delayed lack of answer (and perhaps other examples of non-communication by HHS)……
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