by Jody Smith I’ll always remember my 25th wedding anniversary as being something special. I wish I could say that this was because my husband and I celebrated in some marvelous fashion, but that wasn’t it. At the age of 49, I thought I was having a stroke. I got up that morning feeling fine — or no worse than
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by Jody Smith The struggle with energy (or lack of it) is an integral part of life with ME/CFS. Whatever other symptoms each of us deals with, the ongoing energy black hole and knowing when and how to use what little oomph we might have safely, is a conundrum we all grapple with, often without success. During the times when
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Jody Smith continues her review of INIM’s Patient Conference with a look at Dr Irma Rey’s presentation. In the fourth video of the Institute for Neuro Immune Medicine’s Patient Conference in January, Dr. Klimas introduced Dr. Irma Rey, Assistant Professor of Medicine, of the Department of Clinical Immunology. Dr. Rey is also Director of Medical Education, Nova Southeastern University, College
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Jody Smith continues her review of Nova’s Patient Conference for Dr Klimas with a look at three patients who have improved significantly. “No one has ever taught me more about what to do than my patients.” So said Dr. Nancy Klimas at the Patient Conference hosted by Nova Southeastern University on January 26, 2013. This has to be one of
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by Jody Smith A Patient Conference for Dr. Nancy Klimas was hosted by Nova Southeastern University on January 26, 2013. I was delighted to see Vonnie Kennedy’s article A Celebration of Hope and Progress with her first-hand view of the morning sessions. Vonnie did not have the advantage I’ve had of being able to see the videos from the conference,
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Jody Smith reports on how CFSAC’s “High Priority Recommendations” excluded most of our priorities and our input, in an apparent violation of the Federal Advisory Committee Act The CFS Advisory Committee has made many recommendations to the Secretary for Health and Human Services in the past. But in January 2013, the ME/CFS community got an unpleasant surprise. The CFSAC had
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by Jody Smith Post-exertional malaise. The first few times I heard this term I could not grasp what it meant. Chalk that up to a CFS-crippled brain. The first few dozen times I tried to say it, my cognitive fog prevented me from being able to do so. Many years later it rolls off the tongue, though not in a
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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 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 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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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
Continueby Cort Johnson The benzodiazepines may be the most commonly used class of drugs in chronic fatigue syndrome and it’s easy to see why. Their ability to enhance the effects of the ‘feel good’ neurotransmitter, GABA, makes them a nice foil for study findings indicating that the fight or flight response is turned on in ME/CFS. Look down the list
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