Advocacy issues in chronic fatigue syndrome (ME/CFS)
Chase is giving lots of money away in their Facebook vote off extravaganza Phoenix Rising is currently 155 on the Leaderboard with 913 votes, and any organisation in the top 196 wins $10,000. Yes, that’s a lot of money for relatively few votes. Voting ends in a few days – this Weds 19th at Midnight (EST) PR is hovering just 107 votes above
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Posted by Cort Johnson In this series of blogs we’re going to focus on what ME/CFS organizations would do with their Chase winnings and we’re going to start with (naturally :)) Phoenix Rising. Phoenix Rising has many projects it could spend the Chase winnings on; it could make the Forum more accessible to the visually impaired, hire a crisis counselor
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Posted by Cort Johnson A Health Service provider may want you (gasp)! Yes, it’s true. After all the cold shoulders and denials of coverage, etc. a health services system in the Southeastern United States (to remain unnamed) wants to determine whether it makes sense for them to open an neuroendocrineimmune center focusing on ME/CFS, fibromyalgia, lyme disease, etc. To
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Posted by Cort Johnson Bob and Courtney Miller’s effort to engage President Obama on behalf of Chronic Fatigue Syndrome patients began in a Town Hall meeting in Reno last year. At that meeting President Obama promised to look into the situation and report back and, now, through his Deputy Chief of Staff, Nancy-Ann DeParle, he has. The top aid to
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Posted by Cort Johnson Thanks to Senator Robert Casey (PA) and his colleagues Senator Richard Blumenthal (CT) and Senator Kay Hagan (NC) At the end of June, Senators Casey, Blumenthal and Hagan sent a letter to Secretary of Health Kathleen Sebelius requesting the FDA hold a stakeholders meeting on chronic fatigue syndrome. All three Senators serve on the Committee on Health, Education, Labor
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Posted by Cort Johnson For more than 25 years, the Department of Health and Human Services (DHHS) has known how debilitating chronic fatigue syndrome (CFS, known as myalgic encephalomyelitis or ME/CFS) can be. Studies have shown that ME/CFS is common, afflicting perhaps 1 million people in the U.S. and the CDC reports ME/CFS “can be as disabling as multiple sclerosis,
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Posted by Cort Johnson YOUR VOICES MADE THE DIFFERENCE We are very happy to announce that during a conference call, Dr. Janet Woodcock, Director of Center for Drug Evaluation and Research at the FDA, made a commitment to the ME/CFS community to hold a Stakeholder Meeting. We’ll let you know more as the meeting and agenda for the meeting develops. In
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Posted by Cort Johnson (Things are finally starting to move…The FDA is responding but no meeting dates are set. Stop now and we risk losing our chance; keep working and we can bust this thing wide open. We are on the brink of getting a historic meeting at the FDA… The FDA can be very pro-active in the drug approval process
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Posted by Cort Johnson (This was never going to be easy….ME/CFS has been ignored by every federal agency for over 2 decades and its going to take time and work to break down those walls. Let’s send a message that we are no longer willing stand for being ignored…Thanks to Mary Dimmock, Bob Miller and others for standing up for
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Posted by Cort Johnson An Institute for all Americans…. Or Just Some? The Department of Health and Human Services 2013 Budget proposal doesn’t mince words about whose health the Department, which oversees the NIH and CDC, is charged with protecting…. This Budget request represents the Administration’s priorities for guiding the Department of Health and Human Services (HHS) to enhance the
ContinuePosted by Cort Johnson For decades, ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) has devastated the lives of patients and our loved ones, leaving us with an alarmingly low quality of life. Today, ME/CFS affects the lives of more than 1 million Americans of both sexes and all ages at an annual cost of at least $21 billion in direct costs and
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Posted by Cort Johnson Getting Social Security Disability/Supplemental Income (SSD/SSI) can be a lifeline for financially beleaguered people with CFS (ME/CFS) but the application process is often lengthy and difficult. Anecdotal reports from physicians and patients suggest getting disability may be more difficult for CFS patients yet documentation of success rates is lacking and little hard data exists on what
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