Browse News: United Kingdom

computer-doctor

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

/ by / 1 Comment
#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 ...
recovery-criteria-graph1

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

/ by / 12 Comments
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 ...
research-390297_1280

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

/ by / 3 Comments
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 ...
meaction-image

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

/ by / 6 Comments
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 ...
pace-per-protocol

QMUL releases the PACE data

/ by / 44 Comments
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 ...
pace_trial

UK: Tribunal Orders Release of Withheld Data

/ by / 1 Comment
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 ...
keyboard-597007_960_720

Lancet rejects scientists’ PACE letter

/ by / 1 Comment
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, ...
padlock-322494_1280

QMUL “studying” PACE data-release ruling

/ by / 3 Comments
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 ...
Tribunal

Tribunal orders release of PACE data

/ by / 5 Comments
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 ...
Several tubes of blood a drawn from each biobank donor

The UK ME/CFS biobank paves the way for bigger and better research

/ by / 7 Comments
On ME Awareness day this year, 12th May, the London School of Hygiene and Tropical Medicine (LSHTM) opened the UK ME/CFS Biobank for business, with blood samples available from 300 patients now, and there will soon be samples for over 200 controls. The ready availability of samples for large numbers ...
Menu