Analysis of CFSAC August 2015 Recommendations for the IOM Criteria
The Chronic Fatigue Syndrome Advisory Committee (CFSAC) provides advice and recommendations to the Secretary of Health and Human Services (HHS) through the Assistant Secretary for Health on issues related to Myalgic Encephalomyelitis and Chronic Fatigue Syndrome (ME/CFS). It meets twice a year.
The last meeting took place August 18 and 19, 2015. The theme of the meeting was HHS’ response to the Institute of Medicine (IOM) and Pathways to Prevention (P2P) reports on redefining ME/CFS. A CFSAC working group was created to work on recommendations for these reports which were presented at the meeting.
Tackling all the recommendations and information provided at the meeting would be too long to include in one blog. Since we believe that the diagnostic and research criteria are a crucial element, we decided to concentrate on the recommendations which reference the criteria.
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Instead of Sending Me a Holiday Message...
One of our MEadvocacy.org volunteers, Sonya Irey, recently had a birthday. She requested in place of a happy birthday post from her Facebook (FB) friends and family, that they help with myalgic encephalomyelitis (ME) advocacy efforts.
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Why MEAdvocacy Does Not Applaud the News from NIH...Yet
The Announcement
The myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) community has welcomed and applauded the National Institutes of Health (NIH) News Release announcing a strengthening of efforts by the NIH to advance research for the disease. The overwhelming feeling is that the promises outlined in the announcement ushers a new era of hope for the long suffering ME/CFS patients.
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Tell HHS to Remove Flawed PACE Recommendations from Clinical Guidelines
MEadvocacy.org, along with 11 other U.S. ME/CFS organizations representing a vast number of ME patients, have signed a letter sent to officials at HHS calling for investigation into the flawed PACE trial. Among the requests, the letter specifically asks that the CDC remove all recommendations and risk and prognosis statements based on PACE and other Oxford studies from its current and planned medical education material.
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Social Security Disability Insolvency Crisis
If nothing is done, the Social Security Disability Insurance (SSDI) program will become insolvent in late 2016, causing a 19% cut in an already meager payout. This, of course, would be catastrophic for the 11 million people who rely on these payments, including many ME patients.
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2 Easy Ways to Host a Forgotten Plague Movie Screening
As you may be aware, the documentary, Forgotten Plague, directed by Ryan Prior, has been released. The Huffington Post calls it; “...must see TV, particularly when telling the stories from individuals diagnosed with ME/CFS.” See the full review HERE.
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Help Free Karina – Donate To Save4Children
Image courtesy of Justice for Karina Hansen
Article reposted with kind permission from the ME Global Chronicle 10-7-2015 p.102
The charity Save4Children has been created by the editors of the ME Global Chronicle (http://www.let-me.be) and helps parents whose children have been forced into psychiatric wards by authorities, to try and set them free by legal procedures, if the parents have proven to be incapable of affording needed legal assistance.
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3 Ways to Help Karina Hansen - ME Hostage in Denmark
Graphic by Wendy Boutilier Artz Studio
Unbelievable Situation
Severe ME sufferer Karina Hansen of Denmark, at the age of 24, was forcibly removed from her home on Feb. 12, 2013 and placed in a psychiatric facility.
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Shocking Canadian ME Statistics and What You Can Do About It (Aviva Contest)
Abysmally Low Research Funding
Despite having officially recognized the best ME definition of any country (the Canadian Consensus Criteria), Canada has almost nonexistent funding for ME, making research difficult.
The Canadian group, the National ME/FM Action Network reports the following statistics:
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Donate to Keep MEadvocacy Alive!
Fighting for Equitable Treatment for ME Patients
Inspired by yet another round of egregious actions of the US Department of Health and Human Services against myalgic encephalomyelitis (ME) patients, MEadvocacy.org was launched a year and a half ago. We have approached advocacy in a creative way, utilizing technology to our advantage. In particular, for our website, we’re using the NationBuilder platform – a technology purpose-built for advocacy.
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