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Whether I like it or not

Over the years I discarded several pairs of shoes. I no longer felt comfortable wearing high heels, nor needed aerobic shoes, or did not have the stamina for a pair of boots that were simply too heavy. With hindsight, I should have kept that pair of boots, because it might have been helpful with losing

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Tribunal orders release of PACE data

A tribunal panel has ordered Queen Mary University of London (QMUL) to release anonymised data from the PACE trial to Mr. Alem Matthees, a patient who requested it. The ruling has important implications for CFS patients both in the UK and worldwide. The David-vs-Goliath outcome represents the first successful attempt to begin to counter the

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Empty shoes

A few years after getting ill, I discovered that I can write interesting stories about things that happen inside or close to my home. For instance about birds or cats visiting our garden (preferably not at the same time), books, music or even what we had for dinner. This time it is about my shoes, my empty shoes. Who needs shoes while lying on the sofa, anyway?

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A personal appeal by Holly L.

Recently, I was sitting in my floor sorting through old shoes. I came across the shoe in the picture. Its mate is missing, as is so much of my former life. I got all teary-eyed and found myself just touching the shoe ,and as my fingers ran over the sides my memories came flooding back.

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NIH Telebriefing Full Transcript + Audio

On Tuesday, March 8th, NIH held a one hour tele-briefing to answer the community’s questions about their plans for the intramural study and the ME/CFS program. What follows is a full transcript of the conference call. You can view the transcript and listen to the audio of the call on the NIH website.  On the call were

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James Coyne to talk in Belfast on “scandal” of the PACE trial

Talk by James Coyne in February Professor James Coyne of the University of Pennsylvania will be giving a talk entitled “The scandal of the £5 million UK PACE trial for ME: what can be done?” to two separate audiences in Belfast, Northern Ireland, in February. One talk is directed specifically at professionals, including Members of

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Meet Marathon Mike: Running 28 Marathons for Invest in ME

Meet Mike, the man behind Mike’s EU Marathon Challenge Mike has pledged to run 28 marathons for Myalgic Encephalomyelitis awareness and Invest in ME Recently I interviewed Mike from Mike’s EU Marathon Challenge to get to know the man behind the impressive goal. If you don’t remember, Mike recently pledged to run 28 marathons for

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Takeaways from The ME Association's CBT, GET, and Pacing Report

ME/CFS Illness Management Survey Results “No Decisions about me without me” The ME Association just released the results of a patient survey taken in 2012 that covered management and self-management courses commonly offered to patients with Myalgic Encephalomyelitis, Chronic Fatigue Syndrome, or Post-viral Fatigue Syndrome. The report (available in full on the ME Association website)

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