Category Archives: United Kingdom

#MEAction Network UK: FITNET letter published in Positive Health Online

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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 ...

The PACE trial: Where “recovery” doesn’t mean getting your health back

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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 ...

#MEAction Network UK’s polling results for the proposed MEGA study

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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 ...

No more ‘should’: the aim to stop punishing myself for having ME

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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 ...

SPEECHES FROM THE FRONT LINES OF #MILLIONSMISSING: TASHA & ZARA

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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!

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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 ...

A Plea for Decency to White, Chalder & Sharpe

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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 ...

Sign the UK and Global Petition: It’s time to stop GET trials for ME/CFS

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After months of hard work from #MEAction, #MEAction Network UK, and many others including advocates, government officials, lawyers, and PACE experts, a group of concerned global citizens have crafted a petition to the UK government to stop graded exercise therapy trials in ME/CFS.  If this petition reaches 10,000 signatures from ...

QMUL releases the PACE data

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Queen Mary University of London (QMUL) has released the PACE data to a patient who requested it under the Freedom of Information Act, as ordered by a recent tribunal, on the last possible day to lodge an appeal against the court’s order. The move follows the publication three days previously of ...

UK: Tribunal Orders Release of Withheld Data

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This #MEAction in the UK press release on the PACE trial decision was written by a committed team of patient volunteers, and has resulted in much of the press coverage about this important tribunal decision.  You can read the full press release by clicking in the upper right-hand corner of ...
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