Parliamentary ME/CFS Questions | Luton North MP piles pressure on government over PACE, NICE, treatment strategy and direction of research | 25 November 2016

In some of the fiercest parliamentary questioning about ME/CFS ever, Labour MP Kelvin Hopkins (Luton North) has tabled a stream of questions about the PACE Trial, the National Institute of Health and Care Excellence guidance, treatment strategy and the direction of research.

On 17 November, he asked the Secretary of State for Health, with reference to the PACE trial, Pacing, graded Activity and Cognitive Behaviour Therapy, if he will ask NICE and the NHS to revise their approach to treating myalgic encephalomyelitis to removing references to Cognitive Behaviour Therapy and Graded Exercise Therapy.

Health minister Nicola Blackwood MP replied on November 23:

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.

Mr Hopkins came back to the subject on November 22, when he asked the Secretary of State for Health, if he will institute a revision of NICE guidelines for chronic fatigue syndrome/myalgic encephalopathy.

He also asked if the Health Secretary “will remove CBT and GET from the list of treatments for ME patients”.

On 25 November, Nicola Blackwood replied to both questions:

I refer the hon. Member to the Answer I gave on 23 November 2016 to his Question 53645.

In parallel questioning to the Department for Business, Energy and Industrial Strategy, which holds the government purse strings on medical research, Mr Hopkins moved up several gears.

On November 22, he asked two questions to that Department:

1) If the Secretary of State if he 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.

2) If the Secretary of State 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.

On 25 November, Jo Johnson MP (Minister of State for Universities, Science, Research and Innovation) replied to both questions:

Department for Business, Energy and Industrial Strategy indicated that it will not be possible to answer this question within the usual time period. An answer is being prepared and will be provided as soon as it is available.

And there’s more.


AWAITING ANSWERS


Q
Asked by Kelvin Hopkins
(Luton North)
Asked on: 22 November 2016
Department for Business, Energy and Industrial Strategy
Chronic Fatigue Syndrome: Research
54353
To 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.

The minister, Jo Johnson, provided this answer on November 30:

Management of individual staff within the Medical Research Council is a matter for the MRC as the legal employer.

Q
Asked by Kelvin Hopkins
(Luton North)
Asked on: 22 November 2016
Department for Business, Energy and Industrial Strategy
Chronic Fatigue Syndrome
54354
To ask the Secretary of State for Business, Energy and Industrial Strategy, 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.

Jo Johnson provided this answer on November 30:

The MRC welcomes applications to support research into any aspect of human health and these are subject to peer review and judged in open competition. Awards are made on the basis of the scientific quality of the proposals made. The MRC has promoted research into Chronic Fatigue Syndrome/Myalgic Encephalopathy (CFS/ME) through highlight notices for a number of years.
 
Concerning dissatisfaction of patients, I will write to the Chair of the Medical Research Council to request an account of the development of relevant policies and in particular how CFS/ME patients’ views have been considered. I will deposit a copy of his reply in the Libraries of the House.

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