Kelvin Hopkins, Member of Parliament for Luton North, has addressed some written parliamentary questions about ME/CFS research and treatment recommendations to the Department of Health and Department for Business, Energy and Industrial Strategy.
He asked if the Secretary of State for Business, Energy and Industrial Strategy will request that the Medical Research Council conducts an inquiry into the management of the PACE trial to ascertain whether any fraudulent activity has occurred; and if he will prevent the PACE trial researchers from being given further public research funding until an inquiry into possible fraudulent activity into the PACE trial has been conducted. The Department for Business, Energy and Industrial Strategy indicated on 25th November that it will not be possible to answer these questions within the usual time period and that answers are being prepared and will be provided as soon as they are available.
Two further questions by Kelvin Hopkins, which are currently awaiting answers, ask the Secretary of State for Business, Energy and Industrial Strategy, if he will take steps to identify those responsible for the Medical Research Council’s policies towards ME research over the last decade; and if he will seek those people’s removal from positions of influence over future of ME research; and if he will review the policy of the Medical Research Council (MRC) in so far as it relates to addressing the dissatisfaction of ME patients with MRC’s approach in this area.
Kelvin Hopkins also asked questions of the Secretary of State for Health regarding review of the NICE guideline and treatment recommendations. The answer was –
The National Institute for Health and Care Excellence (NICE) is an independent body and is responsible for ensuring that its guidance remains up to date. NICE has advised that it has brought forward the next review date for its guidance on the diagnosis and management of chronic fatigue syndrome/myalgic encephalomyelitis from 2019 to 2017 to coincide with the expected publication of relevant new evidence.
NICE’s aim is to make a decision on whether an update of the guideline is required by the end of 2017.
You can find the parliamentary questions and answers here –
Short link – http://bit.ly/2gyJ0il
The Opposing MEGA petition organisers have not been in contact with Kelvin Hopkins, but these parliamentary questions are relevant to our rejection of the call by MEGA for ‘mainstream research funding’ which stands to amount to at least £9m.
MEGA (M.E./CFS Epidemiology and Genomics Alliance) is a project of the CFS/ME Research Collaborative (CMRC). The CMRC formed in 2013 following on from the last CFS/ME ‘Expert Group’ of the Medical Research Council (MRC).
The MRC co-funded the £5m+ PACE trial, designed to provide evidence that the psycho-behavioural and graded exercise therapies recommended by the National Institute for Health and Care Excellence (NICE) are effective and cost effective treatments for ME/CFS, along with the Department for Work and Pensions and other co-funders.
The PACE trial was led by Professor Peter White of Queen Mary University London (QMUL). The university spent some £200k of public funds appealing a decision by the Information Commissioners Office for release of raw data from the trial for analysis by independent researchers. A tribunal upheld the ICO decision, published August 2016.
Professor Esther Crawley of the University of Bristol relies on the PACE trial as research evidence to support funding applications for studies into paediatric ME/CFS. She stated, during the extensive media coverage of her new FITNET trial at the beginning of November 2016, that PACE was a “great, great study”, and further demonstrated a lack of comprehension by misrepresenting the results of the recent reanalyses of the PACE trial data.
Esther Crawley is Vice-Chair of the CMRC and is listed by MEGA as an applicant in their petition to mainstream research funders. MEGA announced on 3rd October 2016 that Peter White had retired from the group and will have an advisory role.
Confusingly then, Chair of the CMRC Professor Stephen Holgate, has put in writing that MEGA and the CMRC have no connection with the PACE trial or Peter White now that he has retired.
It is refreshing to read that Kelvin Hopkins has asked such pertinent parliamentary questions, as the answers that various people are receiving in writing from members of the CMRC Board about MEGA sound as though they are coming from establishment politicians rather than scientists or medical doctors, and only serve to make us ever more certain that we are right to have no confidence in MEGA.
You can cast your vote against giving more millions of pounds of ‘mainstream funds’ to anyone connected to highly suspect research activities by signing our petition Opposing MEGA – https://www.change.org/p/opposing-mega-a-vote-of-no-confidence-in-mega-research-for-me-cfs