Posted by Cort Johnson The federal advisory committee on chronic fatigue syndrome (CFSAC) meets twice a year to propose recommendations and interview and prod federal officials to do more to meet the enormous needs of the chronic fatigue syndrome community. Join Phoenix Rising as we cover the two-day event (June 13th, 14th 9am-5pm EST) live with commentary and the opportunity
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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 Jorgen Jelstad is a Norwegian journalist with a family member who has a severe case of ME/CFS. He tweeted the Ottawa conference last year and he tweeted the Invest in ME conference yesterday. Suggesting a certain excitement and vigor is present, he reported that a brain-storming session occurred two days prior to the conference. From Dr.
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Posted by Cort Johnson For the last article in the “20 Years Ago Today” Series celebrating the 20th anniversary of International Awareness Day, we asked ME/CFS researchers and professionals to have some fun and take a look in their crystal ball and hazard a guess as to where CFS will be on a variety of topics in five years. We
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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
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Posted by Cort Johnson In the World – President George Bush made news by suddenly falling violently ill and doing a face-plant into the lap of the Japanese prime minister. The European Union is formed (perhaps to break up 20 years later?) and a 12-year civil war ends in El Salvador. Yugoslavia breaks up and the Bosnian war begins… Pope
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Posted by Cort Johnson Who’s made the most difference in the chronic fatigue syndrome research field? A measure called the ‘H-index’ attempts to determine the impact a researcher has had on a field based on how often his/her work is cited by others. Researchers publishing ‘seminal’ papers in highly read journals will do the best. The index does not measure
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Posted by Cort Johnson There’s nothing like a video to arouse passion. ME/CFS videos really came of age five years ago with the publication of Sleepydust’s ME/Chronic Fatigue video. That video, still her only one, has garnered over 130,000 views – far outpacing any others. To celebrate 20 years since CFS International Awareness Day was created, here are the top 15
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Posted by Cort Johnson “It was twenty years ago today…” Check out our “20 Years Ago Today” survey celebrating the 20th Anniversary of International Awareness day. A wide-ranging (would you take Rituximab if you could get it for free?), sometimes quirky, (what was the most you ever spent on ME/CFS?), sometimes wishful (if you had $100 million dollars to spend
ContinuePosted by Cort Johnson Discuss this article on the forums Written by Cort We’re moving tomorrow! After much testing and evaluating we hope the transition will be as seamless as possible but in a move like this some glitches are probably inevitable. All you will need to do is login again (and click the stay logged in button, if you
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Posted by Cort Johnson Taking a Big Hit- The CDC found that the average family containing someone with chronic fatigue syndrome took about a $15,000 hit yearly in medical costs, lost wages etc…and that about 1/4 of medical costs were paid directly out of pocket. .. It’s clear that many families are hit hard financially by ME/CFS and anything they
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