News from other CFS/ME organisations and elsewhere
More news from UK CFS/ME Research Collaborative
The 2018 Research Collaborative conference is in Bristol this September, see: http://www.meassociation.org.uk/2018/05/2018-cmrc-research-conference-register-now-for-me-cfs-bristol-conference-25-may-2018/ and the page includes an interview with Chris Ponting the new Deputy Chair.
M.E. highlighted at the 71st World Health Assembly
First M.E. event to be held in Geneva at World Health Assembly!
IAME’s letter to the WHO for M.E. Awareness Day
“The International Alliance for M.E. (IAME), based in Geneva, is a collaboration between M.E. organisations across the world, including Action for M.E. and Forward ME, led by the Countess of Mar.
Following its #MillionsMissing protest at the Place de Nations in Geneva - you can see images from this on Facebook and Twitter – the IAME has written to the Director General of the World Health Organisation, Dr Tedros Adhanom Ghebreyesus, to ask for a meeting.
As we set out in our letter, sent on the eve of M.E. Awareness Day 2018, we want to “highlight the serious and significant impact of this often unrecognised condition, and explain why we are seeking urgent national and international action to increase research on the condition and ease the suffering of patients around the world.”
As well as supporting the IAME’s event in Geneva, Action for M.E. is also attending the #MillionsMissing protest in Bristol, and sharing stories, films and images online to join the global call for M.E. health equality.”
This site provides a weekly news summary. Here is May 21st: https://www.s4me.info/threads/news-in-brief-may-2018.3942/#post-75493.
ME Research UK
“We’re happy to let you know that the spring 2018 issue of Breakthrough is now available to read online.
The magazine includes features on a cardiac marker found to be increased in ME, a study of brain blood flow and heart rate variability, and new research looking at the gut microbiome. As always, you’ll also find news from the world of ME, recent research from around the world, and our supporters’ fundraising stories.
“An article in the journal Clinical Rheumatology proposes a theory that CFS may be a condition that precedes a full-blown autoimmune disease, given that the early symptoms of some autoimmune diseases are very similar to CFS. Some patients also go on to develop autoimmune diseases such as lupus, multiple sclerosis, rheumatoid arthritis, or have family members with these conditions.”
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.
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.