Action for M.E announces research
July 17, 2017
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UK charity Action for M.E has announced that they are funding two new research studies, totalling £42,000
Category: United Kingdom
Troubled by NICE guidelines? Three easy ways you can help
July 12, 2017
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When you go to the doctor, you expect treatment to help, not harm you. But the NICE (NHS) guidelines for ME/CFS only recommend two main therapies for ME: Graded Exercise Therapy (GET – which asks you to gradually increase your exercise each week, ignoring any worsening symptoms) and Cognitive Behavioural Therapy (CBT). The majority of
Write to Your MP in 5 Minutes about the ME/CFS NICE Guidelines
July 12, 2017
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The NHS’ NICE guidelines are badly out of date, and only offer two main treatments: Graded Exercise Therapy and Cognitive Behavioural Therapy. We’ve just heard that NICE, despite being due for a revision this year, are intending not to revise the guidelines after all. This is worrying for all patients who have been harmed
#MEAction Network UK: FITNET letter published in Positive Health Online
December 15, 2016
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#MEAction Network UK’s statement denouncing CBT as a form of treatment for ME has been published in the January edition of Positive Health Online today. The letter was sent in response to FITNET, a controversial study that purported children and young people with ME could be successfully treated through CBT conducted over the internet. Esther
The PACE trial: Where “recovery” doesn’t mean getting your health back
December 14, 2016
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Do people really recover as a result of CBT and graded exercise? Sadly not, says a new analysis of PACE People with ME/CFS dream of recovery — of getting their health and lives back. So the results published by the PACE trial, showing that 22% of participants recovered after just 12 months of CBT or
#MEAction Network UK's polling results for the proposed MEGA study
October 24, 2016
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Last week, we asked for your thoughts on the proposed MEGA study. The poll ran for 5 days and 154 of you lent your voice to the concerns raised by many. Here are the results of the vote: “The study must include severely and moderately affected patients.” 140 of 154 voted this. (90.9%) “Those researchers/advisors
No more 'should': the aim to stop punishing myself for having ME
October 15, 2016
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Have you ever noticed how so many of us beat ourselves up for having this chronic illness, almost as if it is invisible even to us, even as we feel the pain and exhaustion? While we feel the need to not give up and keep a hold of all we can of our lives, I’m becoming aware that I for one often get this fight tangled up with a lot of damaging self-judgement.
SPEECHES FROM THE FRONT LINES OF #MILLIONSMISSING: TASHA & ZARA
October 11, 2016
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FROM THE FRONT LINES OF #MILLIONSMISSING ROUND 2: SPEECHES BY TASHA AND HER DAUGHTER ZARA (AT NYC PROTEST)
Join us in the #isignedfive challenge!
September 23, 2016
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Want a way to raise your voice this #MillionsMissing but don’t know how? Perhaps you’re unable to attend a protest in person, or want to do a little something extra to make a difference. The stopGET petition against graded exercise therapy trials is one of the most vital actions circulating at the moment. With a
A Plea for Decency to White, Chalder & Sharpe
September 21, 2016
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The time for decency in the face of the overwhelming failure of PACE for many has justifiably passed you by, but potential futility aside, I make this appeal regardless. Every day there is a new ME/CFS patient. Today you can spare that patient from harm. You can spare them from being accused of malingering by their own friends and family. You can spare them from wrongful imprisonment in a psychiatric ward. Today you can set ME/CFS research on an expedited path that leads to real treatments and ultimately a cure. End this tragedy now.