Knocking Down NIH Bias
MEadvocacy.org has published two blogs regarding NIH’s invitation to Edward Shorter to speak at their NIH Clinical Center on November 9, 2016. Researchers, advocates and patients were opposed and fought this presentation because it would be used as propaganda to validate the unscientific psychosomatic view of myalgic encephalomyelitis (ME). See our blogs for more information: Systemic Bias Continues at NIH and Our Response to Dr. Koroshetz' Refusal to Cancel Lecture by ME Disease Denier.
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Systemic Bias Continues at NIH
See bottom of blog for updates.
The myalgic encephalomyelitis (ME) community became aware November 3, 2016 that the U.S. National Institute of Health’s (NIH) ME/CFS Interest Group had scheduled a lecture, “Chronic Fatigue Syndrome in Historical Perspective,” by Edward Shorter, Ph.D. to take place on November 9, 2016 (see here for original event). This was discovered through Dr. Maureen Hanson’s tweet about the lecture to the community. Dr. Shorter is a professor of history and psychiatry who has been an open proponent of the misguided belief that myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a somatoform condition.
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Our Response to Dr. Koroshetz' Refusal to Cancel Lecture by ME Disease Denier
This letter is in reply to Dr. Koroshetz letter of Nov 4, 2016 to the ME/CFS community refusing to cancel the invitation by NIH of a lecture to NIH investigators titled: “Chronic fatigue Syndrome in Historical Perspective”.
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THE INTERNATIONAL CONSENSUS CRITERIA What is it? Do I fit the criteria?
Revised November 14, 2016 to include steps to evaluate for atypical ME as defined by ICC.
MEadvocacy.org understands there is a great deal of confusion about the various criteria for myalgic encephalomyelitis, so we created an easy to follow questionnaire to help patients see if they may fit the 2011 International Consensus Criteria.
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Tom Jarrett, ME Patient Advocate, Passes
It is with very heavy hearts that we report the passing of our friend and fellow ME advocate, Tom Jarrett.
Tom came to MEadvocacy in the fall of 2014 looking for help with a protest against the Pathways to Prevention Workshop (P2P) at the National Institutes of Health (NIH). Despite being in constant pain and needing to lay in a zero gravity recliner, Tom organized on very short notice an awareness event, traveling 10+ hours to protest at the NIH, with himself, church and family members, including his wife and two young boys, in attendance. It was a very cold winter day. A cameraman from the documentary, “Canary in a Coalmine” stopped by to film.
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Gone Fishin'
The MEadvocacy Advisory Committee is taking a well deserved break for the summer. See you in the fall.
Diseasemaps.org - Let's Put ME on the Map!
As you may know, the general public, medical professionals and politicians are mostly unaware of the prevalence and severity of myalgic encephalomyelitis (ME) in the U.S. and around the world.
A visual representation can have more impact than words or numbers, or as a wise person once said “A picture is worth a thousand words”. A visual map representing the thousands and thousands of ME patients in every nation, state, city and voting district can be used to show how many of a politician’s constituents are affected, and hopefully spur them to action on our behalf.
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MEadvocacy Reaches Members of Congress
Appropriations Submissions
Each year the Senate and House appropriations committees take submissions for planning the federal budget and expenditures. This includes funding for federal disease research. This spring, MEadvocacy once again sent in submissions outlining the devastating nature of myalgic encephalomyelitis (ME) and the need for research.
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Circulatory Impairment in Myalgic Encephalomyelitis: A Preliminary Thesis
Guest blog by Maryann Spurgin, Ph.D.
Note: I wrote this proposal in the late Fall of 2015 and in early 2016 as a work proposal (Circulatory Impairment in Myalgic Encephalomyelitis: A Work Proposal —by Maryann Spurgin, Ph.D. January 16, 2016)
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Eileen Holderman CFSAC Public Comment About NIH Study
CFSAC
Public Comment
May 18, 2016
Eileen Holderman
Good afternoon to the Advisory Committee Members and to all stakeholders listening.
My name is Eileen Holderman - I'm an advocate for ME, GWI and other neuroimmune diseases.
Recently, I served as consultant to MEadvocacy, an organization advocating on behalf of nearly 1 million American men, women and children suffering from Myalgic Encephalomyelitis (ME).
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