Category Archives: United Kingdom

FITNET trial criticised in Behavioural Sciences journal

/ by / 0 Comment
Severe ME patients publish paper questioning central findings of Dutch CBT/GET trial ...


/ by / 2 Comments
Journal of Health Psychology Special Issue on The PACE Trial, Vol. 22,  No 9, Aug. 2017 Publication date: 31 July 2017   A Special Issue of the Journal of Health Psychology on the PACE Trial, is to be published and freely available online on Monday 31 July 2017. It marks a special contribution ...

#MEAction UK response to NICE 2017

/ by / 2 Comments
#MEAction UK response to NICE 2017 Background information UK clinical guidelines are written by a body called the National Institute for Health and Clinical Excellence (NICE). The current guidelines were last revised in 2007 and contain recommendations that people with ME consider unsuitable and potentially harmful. These guidelines also impact how ME ...

Troubled by NICE guidelines? Three easy ways you can help

/ by / 1 Comment
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 ...

Write to Your MP in 5 Minutes about the ME/CFS NICE Guidelines

/ by / 7 Comments
  The NHS' NICE guidelines are badly out of date, and only offer two main treatments: Graded Exercise Therapy and Cognitive Behavioural Therapy.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 ...
Action for M.E announces research

Action for M.E announces research

/ by / 1 Comment
UK charity Action for M.E has announced that they are funding two new research studies, totalling £42,000 ...

#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 ...

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

/ by / 13 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 ...

#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 ...

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

/ by / 5 Comments
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 ...