by Jody Smith Thanks to the misleading name Chronic Fatigue Syndrome, the misunderstandings concerning sleep are numerous and contradictory. Those who are unfamiliar with ME/CFS often may conclude that we are sleepy all the time. It doesn’t really work that way. Some of us can’t sleep at all. Others sleep for long periods but never when they’d like to. Many
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by Elaine Stammers As a new year begins, I sit in my house looking out at the falling rain and think about Gillian McCarthy sitting in her unheated and leaking hut, many miles away from me in Somerset, UK. She awaits the return of the group of people who, by starting to build her a warm shelter for winter, have
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by Jody Smith Christmas can prompt intense mixed feelings for those of us with ME/CFS. Those of us who were not stricken in our youth may have some wonderful memories of the holiday season. This can prompt anticipation and longing, accompanied by dread. Anticipation may be triggered as an automatic desire for a repeat performance of those early experiences. Longing
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by Jody Smith We’ve all known people we’d prefer to avoid. People who make us want to run the other way when we see them coming, because they do nothing but complain. It galls me no end that there are people who react this way to me if I talk about what life with ME/CFS has done to me. Llewellyn
ContinueThis Sunday November 18th, members of the ME/CFS, Lyme and MCS communities are invited to join together in a teleconference to say “Thank you; We love you; Goodbye” to Rich Van Konynenburg. All are invited to the ME/CFS, Lyme and MCS community’s Memorial Service for Rich Van Konynenburg on November 18, 2012 On Sunday, November 18, 2012, please join
Continueby Cort Johnson It’s no fun when your ‘gas tank’ is empty. In fact it’s crazy how many of us are running on fumes on so many levels…personally, medically, financially…How nice it would be, out of the blue, to have a little fill up once in a while. With the winners of the contest riding away with a cool $5,000
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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
Continueby Cort Johnson The results of the Presidential election leave the ME/CFS Community with a chance and some hope, but no guarantees of major change… Research With President Obama in office, the National Institutes of Health (NIH) will remain as budget challenged as ever, and the chances of getting significantly more funding remain low at best, but as the country
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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
ContinueForum member RivkaRivka extends an invitation to members of the ME/CFS, Lyme and MCS communities to join together in a teleconference to say “Thank you; We love you; Goodbye” to Rich Van Konynenburg. All are invited to the ME/CFS, Lyme and MCS community’s Memorial Service for Rich Van Konynenburg on November 18, 2012 On Sunday, November 18, 2012, please
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Help win $100,000 for Medical Equipment for a new Chronic Diseases Clinic in Vancouver. Vote every day until Monday 9am PST, 6pm UK. The Aviva Community Fund Contest is open for Canadian projects and international voters – anyone in the world can vote – and your vote is urgently needed daily until Monday at 12 noon Toronto time (9AM PST, 6
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