by Jody Smith The FDA held the Myalgic Encephalomyelitis and Chronic Fatigue Syndrome Webinar: Working Together for Change on November 15, 2012. An invitation had been issued earlier to Phoenix Rising and anyone interested in attending. There was not much mention of ME/CFS until well into the webinar, which surprised me and left me dismayed at first. Instead, speakers talked about
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By Jody Smith Energy. It’s defined by Merriam-Webster.com as the force that drives and sustains mental activity, and the capacity for doing work. ME/CFS is noteworthy for a dearth of it. Anyone with ME/CFS knows all too well what it’s like to be so exhausted that we can’t lift our heads. We have very likely had the experience of being
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By Jody Smith ME/CFS is not the only condition that the medical community can’t seem to reach a consensus about. Adrenal fatigue is another topic that raises conflicting opinions from different quarters. Is it a valid diagnosis? Is it not? Is this the paradigm of how the adrenals work? Is that paradigm closer to the truth? The debate goes on.
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Jody Smith reflects on the growth of the Phoenix Rising forums, from a handful of members in 2009 to several thousand today… There may have been other forums for people with ME/CFS back in 2009, but if there were, I didn’t know about them. Phoenix Rising’s forums, as far as I knew at that time, were unique. So when I
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by Jody Smith The Food and Drug Administration has deemed ME/CFS to be one of 39 conditions that may receive their special consideration. But of these 39, only 20 conditions will be picked. If ME/CFS is one of those 20, patients’ comments will be heard through public meetings and through mailed and emailed messages. The FDA evaluates and approves drugs
ContinuePosted by Cort Johnson Dr. Reeves produced the five year plan for the CDC’s CFS research team. He was in his element. He seemed sincere and open; patients think of him as something of an ogre but you’d never get sight of that in his presentations. Kim McCleary later noted that he’s a master at the art of presentation. But one suspects
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Posted by Cort Johnson I first met Lisa Faust at the Symposium on Viruses in 2008. She was at a table with a group of women all of whom were battling a similar sounding illness. They were definitely the acute onset infectious disease subset. My mouth dropped as I listened to their stories; some were on complete disability, others had
ContinuePosted by Cort Johnson That’s right – in the midst of the greatest economic contraction since the depression the NIH has, all of sudden, found itself in the greatest single expansion in its history. How and why demonstrates how much influence one Senator can have. Desperate to get Arlen Spectors vote on the stimulus package, the Obama administion acceded to
ContinuePosted by Cort Johnson Dr. Hanna at the NIH has repeatedly said that given the tight budgetary times there’s just no money for ME/CFS. A look at NIH funding across the past few years suggests, however, there’s more to the issue than she suggests. Underneath the seemingly placid surface of a stable budget a fierce fight goes on every year
ContinuePosted by Cort Johnson What do infection, stress, over-exercising and the intensive care unit have in common? Different researchers believe that each can trigger a chronic fatigue syndrome-like (ME/CFS) state. A recent article in the New York Times added a short stay in the intensive care unit (ICU) to the list.
ContinuePosted by Cort Johnson We know the ME/CFS research program at the CDC is in big trouble but what about its cousin at the NIH? Three years ago the CFIDS Association of America was praising the CDC’s chronic fatigue syndrome program and slamming – in a federal document – the horrible performance of the NIH’s ME/CFS program. The only thing
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