The talking points for the email about the DHHS/IOM proposed contract prompted advocate Joe Landson (thanks for sharing it Joe) to send this letter:
Subject: MECFS definitions
Secretary Sebelius,
As a disabled veteran, and an ME/CFS patient, I am writing to protest the Department of Health and Human Services’ proposed sole-source contract (or grant?) to the Institute of Medicine, towards a consensus definition of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, or ME/CFS. I am given to understand that due to ME/CFS community feedback, this sole-source proposal has been shelved. I sincerely hope it has.
In January of this year, the IOM released a report on Gulf War Illness (GWI), which the IOM terms Chronic Multisystem Illness (CMI), a characterization arguably blander and less substantial than the tapioca pudding provided in many hospital meals. While the pudding can, in theory, be consumed, I am not sure that my fellow patients and I can stomach another attempt to portray our crippling illness as a series of bland generalities and vague complaints, treatable with talk therapy.
Yes, we need a consensus definition. However I submit that we can best serve patients, clinicians, researchers and policymakers by writing a definition based on actual understanding of the mechanisms and causes of the illness in question. In cases where consensus science does not provide knowledge of illness cause and mechanism, then perhaps the DHHS can fund research that actually produces such knowledge. If DHHS cannot even do that, then perhaps it should avoid the definition-writing process until such consensus science does emerge. First, do no harm. Bad definitions do us harm by misdirecting research, and by exposing us to ridicule and ignorance, from which we suffer daily.
Thank you for your consideration. Go Jayhawks.
Joe Landson
The CFSAC meeting will be live-video streamed at www.HHS.gov/Live
Published May 21, 2013 Uncategorized Leave a CommentTags: advocacy, CFSAC, chronic fatigue syndrome, early onset ME/CFS, government, health, ME/CFS, public comment, science, treatment, upcoming events, Washington
When: May 22-23, 2013
The CFSAC meeting will be live-video streamed at www.HHS.gov/Live 9AM-5PM
Listening- if you prefer to listen only audio, (via telephone)
Audio Line to call in to the CFSAC meeting: 1-866-500-6250, participant code: 9487727
www.hhs.gov/advocomcfs
Agenda
CFSAC Spring 2013 Meeting
May 22, 2013
Roll Call
Housekeeping
Chair
Nancy C. Lee, M.D.
Designated Federal Officer
Principal Deputy Assistant Secretary for Health
U.S. Department of Health and Human Services
Chair
CDC, CMS, HRSA, SSA
Chair
Director of Coverage and Analysis Group Center for Clinical Standards and Quality
Centers for Medicare and Medicaid Services
Day 2
Agenda
CFSAC Spring 2013 Meeting
May 23, 2013
Roll Call
Opening Remarks
Housekeeping
Chair, CFSAC
Nancy C. Lee, M.D.
Designated Federal Officer
AHRQ, NIH, FDA
Deputy Assistant Secretary for Health
(Science and Medicine)
U.S. Department of Health and Human Services
Lisa W. Corbin, M.D., FACP
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