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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Joel (snowathlete) explains why he decided to consult Dr Kenny De Meirleir and describes his journey to De Meirleir’s clinic in Belgium… I was diagnosed with Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS) in the summer of 2009 by an ME/CFS clinic run by the National Health Service. The UK is about as backwards as it gets when it comes to
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by Karen Luoto I still cannot believe it… I NEED to tell you about a cross country trip I recently took with the emotional and logistic help of other ME/CFS’ers from the community. Although I am in severe pain now, feeling as though every bone in my body is breaking with every step, the tendons and ligaments have all torn
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by Simon McGrath A new study, from Julia Newton’s group in Newcastle, UK, has found evidence that reduced blood flow to the brain is associated with muscle abnormalities in CFS patients. Earlier work by the same group had found that with many CFS patients, muscles don’t regulate acid levels properly after exercise. Another study, by Ben Natelson, had shown reduced
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by Jody Smith Llewellyn King has been gaining quite a reputation for himself in ME/CFS circles of late. He has been a journalist, foreign correspondent, editor, creator of his own publishing group, and public speaker over his long career. And now King is an advocate for people with ME/CFS. He writes about us often on his White House Chronicle blog.
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by Sasha If any of us was Bill Gates, we wouldn’t ask ourselves whether we should donate money to ME charities. We’d just do it. We’d reach into our gigantic bank account and drop our billions on the problem, secure in the knowledge that we were pouring such shedloads – no, planetloads – of cash onto it that the problem
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by Jody Smith Nova Southeastern University College of Osteopathic Medicine is hosting a Patient Conference for Dr. Nancy Klimas on January 26, 2013. Klimas is considered to be an expert in immune disorders and one of the world’s best researchers and clinicians for ME/CFS. The theme of the conference is CFS/ME and Gulf War Illness 2013 – A Celebration of Hope
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TheChronicSituation writes about how choosing to live hidden behind even a partial mask can seem easier, especially when it saves on bothersome explanations. But, at the end of the day, pretense can come at a cost – nobody really knowing who you are… The majority of people I know, don’t know that I have CFS/ME. In a way, I feel
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by Sasha “There comes a point in human suffering when acceptable risk is most appropriately determined for oneself, not by government.” So said Suzy, in an online comment about the failure of the FDA Advisory Committee on Ampligen to vote in a manner that would have got approval for the drug’s use for patients with ME/CFS. But it’s not too
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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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