Advocacy issues in chronic fatigue syndrome (ME/CFS)
Posted by Cort Johnson U.S. Senate Committee on Health, Education, Labor & Pensions Full Committee Hearing on Pain in America: Exploring Challenges to Relief February 14, 2012 TESTIMONY OF JENNIFER SPOTILA This testimony is submitted on behalf of the CFIDS Association of America, in loving memory of Christy Gaffey of Williamsburg, Iowa. Christy lost her battle with chronic fatigue syndrome
ContinuePosted by Cort Johnson Spread the word! It is time to YANK (not tug) the nation’s heartstrings again. Young People with ME/CFS – JOIN US in Speak Up About ME, to be Invisible No More! Washington DC this spring (2012) How do we yank people’s heartstrings? With the participation of young people and their families at the Chronic Fatigue
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Posted by Cort Johnson The statistics the Campaign to End Chronic Pain in Women cites are startling…$50 million women in the US suffer from six chronic pain conditions (ME/CFS, FM, Interstitial Cystitus, TMD, Endometriosus, Vulvodynia), one of which is ME/CFS, which cost the US economy 80 billion dollars a year…..yet the NIH devotes only $1.36 per woman a year to
ContinuePosted by Cort Johnson It’s hard to beat a three for one deal – you put a dollar in for ME/CFS research and the McGrath Family Foundation will match it with three more dollars. It’s particularly hard to ignore when it’s going to a research team with a proven record of success. The CAA’s research team is nothing if not
ContinuePosted by Cort Johnson We started out with seven CFS non-profits in the running for $175,000 in the Chase Community Giving Contest. We knew the contest was going to get really volatile in the last couple of days and it has with four organizations dropping like rocks. With only 22 hours left in the contest only three organizations appear assured
ContinuePosted by Cort Johnson The RMCFA is one of six CFS organizations in the running for from 25K in the Chase Community Giving Contest running until Aug 22nd. Chances are,though, that after being in contention for 2 weeks, on the last day of being in the Chase Community Giving contest, the RMCFA will drop out of the top 100 and come up
ContinuePosted by Cort Johnson Only Four days left for Chase Community Giving and two of our most important CFS non-profits are in the running. Check out why your vote for these organizations will make a difference for ME/CFS. CFS Knowledge Center The CFSKnowledgeCenter is actually two sites: a thriving Community Center with blogs, research surveys and CFS support groups and
ContinuePosted by Cort Johnson $250,000 or More for the ME/CFS Community????? Is that even possible? $250,000 may be more than all the smaller non-profits ever – put together – spent in their existence – but it is possible and its happening NOW. Chase Community Giving is at it again. In the first round – for larger non-profits- the ME/CFS Community
ContinuePosted by Cort Johnson Marly Silverman is a worker! How many people have played a major role in creating not one or two but three organizations? Marly first created PANDORA, then in response to the CDC’s new website, dreamed up the MWCPA and then was a key figure in getting the Coalition4MECFS off the ground. Plainly put Marly makes things
ContinuePosted by Cort Johnson Dan Moricoli is proof that even individuals afflicted with a severe illness can make a difference. Hampered by an alarming case of ME/CFS that has stymied many doctors Dan has nevertheless produced a unique place for people with CFS to gather and learn. The CFS Knowledge and ME/CFS Community Centers now have the most extensive trove
ContinuePosted by Cort Johnson The Coalition4ME/CFS – a coalition of US ME/CFS non-profit organizations – has issued a Call to Action on the impending DSM-5 proposal and provided information to assist organizations and patients in writing their own letter to the American Psychiatric Association. The submission period ends June 15th. THE COALITION ANNOUNCEMENT DSM-5 Background: Why this call to action
ContinuePosted by Cort Johnson Annette Whittemore, the Founder of the WPI, and the mother of a daughter of ME/CFS, appealed to all people with ME/CFS to vote for the CFIDS Association of America in the Chase Community Giving Contest and has requested that they also vote for two other organizations – and ask that they vote for us. This is
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