Posted by Cort Johnson Looking Up Down Under – the PHANU Story ME/CFS research around the world is pretty spotty. The US and the UK are long-time hubs, with Canada coming on in the last few years. Outside of the Nijs/DeMeirleir work in the Netherlands/Belgium, you can scratch out most of Europe. South of the equator, the picture is bleak
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Posted by Cort Johnson A strong and forceful personality who vowed to ‘be the last man standing’ in ME/CFS, Dr. William Reeves died at the age of 69 on August 2nd. The head of the most prominent chronic fatigue syndrome effort in the world for over ten years, no one made a bigger difference in how this disorder is viewed
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Posted by Cort Johnson Reversing a 2009 decision some commentators felt was potentially crippling to Hemispherx BioPharma, Ampligen’s producer, the FDA today stated they would not, after all, require a expensive 300 person study to assess Ampligen’s effectiveness in chronic fatigue syndrome (ME/CFS). (Safety concerns appear to have been taken care of.) Instead they would allow Hemispherx to use new
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Posted by Cort Johnson In a surprise, Chief Justice John Roberts joined the four liberal members of the Supreme Court to uphold most provisions of the Affordable Health Care Act including the individual health care mandate. The implications of the Supreme Court’s decision are substantial for people with chronic illnesses, in general, and for people with chronic fatigue syndrome who
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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 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 Funny, charismatic and often an inspiration to others, for almost two decades Patrick battled an illness his doctors couldn’t fix and his country has essentially ignored. Patrick was, by all accounts, what doctors might call a ‘good’ ME/CFS patient; he worked hard on the physical side, trying the different protocols available, and on the mental side-
ContinuePosted by Cort Johnson Discuss this article on the forums by Rivka Rivka (at) ThatTakesOvaries (dot) org So you want to take a stand and make a stink — do something more visible to help your ME/CFS community? Good for you. Consider organizing a demonstration (demo) to advocate for people with ME/CFS. Consider going public, alone or with others, in
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Posted by Cort Johnson After 17 years of being ill with chronic fatigue syndrome, Patrick Wylie Kelly, took his life on April 15th leaving many in the ME/CFS community shocked. An inspiring figure to many in Sept 2011, Patrick posted on the Phoenix Rising Forums that he (Hub_Halo on the Forums) was working on accepting the losses that come with
ContinuePosted by Cort Johnson Discuss this article on the forums Many researchers think the problems in the brain or central nervous system probably play a key role in ME/CFS. Some of the most interesting research in the past couple of years has focused on the brain and the Ottawa conference was no exception. At the conference we saw research findings
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