Posted by Cort Johnson What is ME/CFS in Vermont like?’ Invisible’ suggests that it’s much like it is in the rest of US. A struggle for health and a struggle to maintain ones sense of mental well-being in the face of a medicals community’s disregard and often disdain. Vermont does have something or rather someone who is different, though, and
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Advocacy issues in chronic fatigue syndrome (ME/CFS)
Olympic Champion Supports ME/CFS
Posted by Cort Johnson Dan Moricoli is doing some great stuff at the ME/CFS Community Center. (Look at the Scientific Committee members!) Check out this video of an Olympic Champion espousing the need for more support. Olympic Champion Laura Kraut on ME/CFS and the ME/CFS Pocket Money Research Fund. The ME/CFS Champions Campaign seeks to raise public awareness of ME/CFS,
ContinueFirst ME/CFS Ad Now Running in the Washington Post!
Posted by Cort Johnson ME/CFS is hitting the lawmakers in Washington DC right in the chops today with a provocative half page ad suggesting that everybody, healthy or not, is put at risk when the federal government ignores ME/CFS. The ad has been the fruit of months of work from people with ME/CFS, the MWPCA and PANDORA. The MWPCA has
ContinueThe Stars Begin to Align at the NIH: A CFS Review Panel…. For CFS!
Posted by Cort Johnson A Head-Splitter – Of all the problems at the NIH the makeup of the panel that reviews and scores ME/CFS grants – called the CFS SEP – may have been the most head-splittingly frustrating. No subject is guaranteed to raise blood pressure levels more quickly and perhaps, no other group has been more effective at throttling
ContinueNo Money For ME/CFS? Think Again
Posted by Cort Johnson Oct 13 Testimony to the CFSAC Whenever the CFS community asks for funding we always hear are that ‘money is tight’ – too tight to help out with CFS – as if doing so would somehow break the budget. The truth is there’s always money for the NIH to do what it wants to do. Every
ContinueCDC at the Edit CFSAC Meeting: Dr. Unger’s Job Interview and More
Posted by Cort Johnson Dr. Unger’s ‘Job Interview’ by the CFSAC Committee The new CDC CFS chief should be announced fairly soon and Dr. Unger is one of the candidates to lead it. With that fact in mind the Committee at times asked her some fairly pointed questions. A Biological Basis – Really? Dr. Unger stated that ‘there has never
ContinueIACFS/ME President Urges CDC Writing Campaign
Posted by Cort Johnson Dr. Fred Friedberg, President of the IACFS/ME, requests that CFS/ME professionals and patient-oriented activists write letters to the CDC to Dr. Stephan Monroe with copies to Dr. Thomas Frieden regarding the selection of a new Chief of the Chronic Viral Diseases Branch at the CDC. See below for Dr. Friedberg’s request which is posted with his
ContinueAktion Time! The CFSAC Action Begins
Posted by Cort Johnson (The CFSAC meetings are the only time during the year when ME/CFS advocates sit down and prod federal officials to do the right thing. We all know the statistics – we know the federal government has basically been pretending we don’t exist for decades. The action Bob, Rivka and Charlotte created initiates a new brand of
ContinueFinally Getting ‘IN’
Posted by Cort Johnson XMRV has turned the ME/CFS world upside down and in a very good way. In the past year a‘cast-out’ disorder has shown signs it may be getting ‘in’; getting into major research facilities, getting into the discussion of major officials, getting into the groove that most diseases participate in…. in short its shown some signs of
ContinueA Time to Act!
Posted by Cort Johnson “A Time to Every Purpose Under the Heaven” Ecclesiates says there is a “A time to every purpose under the heaven”. I suggest that our time is now. ME/CFS has been ignored and kicked to the side of the road for decades. Twenty-five years later – long after it has been shown to afflict at least
ContinueStanding Up For ME/CFS: Rivka in Washington DC
Posted by Cort Johnson (With so much happening and so much at stake, Rivka reminds us that now is the time to act) Dear Everyone Who Cares About People With ME/CFS, I just held my one-woman demonstration at the Red Cross national headquarters in Washington DC (Red Cross collects 45% of all blood donations in this country) and at the
ContinueBreakthroughs Happen: A Model For ME/CFS Success
Posted by Cort Johnson The New York Times lead article today “Sharing of Data Leads to Progress on Alzheimer’s”. described how a bold new type of research effort paid off big time in Alzheimer’s. All it took to succeed was for researchers to make a commitment to work together, share and collaborate…. nothing much really – just a commitment to
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