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News from other CFS/ME organisations and elsewhere

March

ME Association

Some very important news from UK CFS/ME Research Collaborative:

The CFS/ME Research Collaborative (CMRC) Announces Major Change in Policy and New Deputy Chair | 07 March 2018” – here for details: http://www.meassociation.org.uk/2018/03/the-cfs-me-research-collaborative-cmrc-announces-major-change-in-policy-and-new-deputy-chair-07-march-2018/

The chair of this “collaborative” is Prof. Stephen Holgate who will be the speaker at this year’s Medical Lecture.

Action for ME

The February edition of Keep Me Updated has a summary of the parliamentary debate on the PACE trial. The PACE trial of 2007 has received a lot of criticism and this debate brought that into the open. The Keep Me Updated summary is here: https://www.actionforme.org.uk/news/pace-trial-westminster-debate-our-summary/?dm_i=1HO,5HH50,GGATG8,L9J79,1

The following is an introduction to PACE taken from the MEpedia website:

The PACE Trial (short for “Pacing, graded Activity, and Cognitive behaviour therapy; a randomised Evaluation”) was a large-scale trial of treatments for people with Chronic Fatigue Syndrome (CFS), also known as Myalgic Encephalomyelitis (ME).

The study compared standardised specialist medical care (SMC) alone to SMC plus Adaptive Pacing Therapy (APT), Cognitive Behavioural Therapy (CBT), or Graded Exercise Therapy (GET). The experimenters hypothesised that the CBT and GET groups would do best, and reported that this is what the trial’s results showed but the claim has proved controversial.

The PACE trial dominates clinical policy in the United Kingdom and other countries, in both government funded health care and private medical insurance.

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November 2017

Invest in ME Research

“A disease such as ME presents many challenges to a patient and to a family.
It can provide challenges also to schools when a child or young person is unable to continue full time education.
Isolation is one of the most insidious consequences of ME – the full effects often not realised until much later.
We want to help change that.

In Norway, a small white robot has become a stand-in in the classroom for children and youths suffering from ME.
We want this possibility to be offered to young people affected by ME throughout the UK – and, at the same time, spread awareness of this disease throughout the education system.”

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