Browse News: United Kingdom

Parliament EDM 271 Urges NICE to Update Guideline on ME

Parliament EDM 271 Urges NICE to Update Guideline on ME

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UPDATE On 20th September, NICE overturned the original proposal and announced it would review its guideline on ME. This is great news but means we need to double our efforts to make sure that the new guideline is robust enough to protect and help people with ME for generations to come ...

FITNET trial criticised in Behavioural Sciences journal

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Severe ME patients publish paper questioning central findings of Dutch CBT/GET trial ...

#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 ...

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 ...

Lancet rejects scientists’ PACE letter

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The Lancet has rejected a letter criticising the PACE trial that it invited from a large group of scientists.  This decision was made after its editor discussed the matter with the study's authors. Professor Vincent Racaniello, who led the letter, described the behaviour of Dr. Richard Horton, editor of The Lancet, ...

QMUL “studying” PACE data-release ruling

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Queen Mary University of London (QMUL) have issued a statement in response to Tuesday’s tribunal ruling that they must release anonymised PACE trial data to a patient who requested it under the Freedom of Information Act. The data would allow the calculation of main outcome and recovery figures using analyses that ...
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