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UK Parliament Grand Committee Room debate 21st June 2018
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[[File:UK debate 12-06-2018.jpg|right|M.E. Research and Treatment debate in the Grand Committee Room|thumb]] A parliamentary debate on the topic of "M.E. Treatment and Research" was scheduled by the Backbench Business Committee and took place between 1:30pm and 4:18pm on Thursday 21st June 2018 in the Grand Committee Room at Westminster Hall, in the House of Commons in London, England, UK.<ref name="hansardjun18">{{Cite web|url=https://hansard.parliament.uk/Commons/2018-06-21/debates/A49A6117-B23B-4E35-A83B-49FEF0D6074F/METreatmentAndResearch | title = ME: Treatment and Research - UK Parliament | last =Hansard | first= | author-link =| date = Jun 22, 2018 | website = hansard.parliament.uk|archive-url=|archive-date=|url-status=|access-date=2019-01-25}}</ref> Members resolved to consider [[myalgic encephalomyelitis]] (ME) treatment and research. The debate was attended by approximately 25-30 members of parliament (MPs) representing Great Britain and Northern Ireland. MPs present represented all four nations: [[United Kingdom|England, Scotland, Northern Ireland and Wales]]. The debate attracted cross-party support with attendees representing the governing Conservative Party, the opposition Labour Party, Plaid Cymru (Wales), the Scottish National Party (SNP), the Liberal Democrats (LibDems), and the Northern Irish Democratic Unionist Party (DUP). ==Supporting MPs== *[[Carol Monaghan]] MP *[[Nicky Morgan]] MP *[[Stephen Pound]] MP *[[Alex Chalk]] MP *[[Ben Lake]] MP *[[Kerry McCarthy]] MP ==Government representative== *[[Steve Brine]] MP (Parliamentary Under-Secretary Department of Health and Social Care) ==Government opposition representative== *[[Sharon Hodgson]] MP (Shadow Minister - Public Health) ==MPs who contributed to the debate== *Sir [[Henry Bellingham]] MP *[[Alex Chalk]] MP *[[Robert Courts]] MP *[[Jim Cunningham]] MP *Sir [[Edward Davey]] MP *[[Michelle Donelan]] MP *Dr [[David Drew]] MP *[[Patrick Grady]] MP *[[Kate Green]] MP *[[Kelvin Hopkins]] MP *[[Stephen Kerr]] MP *[[Ben Lake]] MP *[[Scott Mann]] MP *[[Kerry McCarthy]] MP *[[Liz McInnes]] MP *[[Carol Monaghan]] MP *[[Gavin Newlands]] MP *[[Luke Pollard]] MP *[[Stephen Pound]] MP *[[Jeremy Quin]] MP *[[Andrew Selous]] MP *[[Jim Shannon]] MP *[[Alex Sobel]] MP *Sir [[Desmond Swayne]] MP *[[Mark Tami]] MP *[[Michael Tomlinson]] MP *[[Liz Twist]] MP ==MPs in attendance== Other MPs attended for some or all of the debate, but did not speak: *[[James Gray]] MP (attended briefly) ==Notable public gallery attendees== *[[Charles Shepherd]], Medical Adviser to the [[ME Association]] *[[Jonathan Edwards]], emeritus professor [[University College London]] *Dr [[Eliana Lacerda]], representing the [[Cure ME]] team and the [[UK ME/CFS biobank]] *Representatives of [[The MEAction Network]] and the [[Millions Missing]] campaign ==Debate chairs== *[[Andrew Rosindell]] MP (chair for first half) *[[Michael Gapes]] MP (chair for second half) ==Professor Michael Sharpe== In advance of the debate Professor [[Michael Sharpe]] provided a pre-hearing briefing<ref>[http://www.virology.ws/2018/07/02/trial-by-error-professor-sharpes-pre-hearing-briefing-for-monaghan/ Pre-hearing briefing]</ref>. His briefing was criticized<ref>[https://lucibee.wordpress.com/2018/07/02/sharpes-briefing-on-the-so-called-pace-trial-for-the-21-june-2018-westminster-hall-debate/ Sharpe’s briefing on the (“so-called”) PACE trial for the 21 June 2018 Westminster Hall debate]</ref>. [[Michael Sharpe|Professor Sharpe]] (lead author of the [[PACE trial]]) also sent an email to [[Carol Monaghan]] MP accusing her of behavior "unbecoming of an MP". Monaghan read out a portion of the email during the debate, eliciting a response of "Hear! Hear!" from other members present. Monaghan continued by saying "I say to Professor Sharpe that if listening to my constituents, investigating their concerns and taking action as a result is 'unbecoming', I stand guilty. If Members of Parliament are not willing to stand up for the most vulnerable in society, what hope do any of us have?" ([https://www.youtube.com/watch?v=qTPYyb3P99k video]) ==The [[PACE trial]]== The [[PACE trial]] was criticized by several MPs. No debate attendee defended the study. "We now know that 13% of the participants in the PACE trial qualified at baseline as “recovered” or “within the normal range” for one of the study’s two primary measures—self-reported physical function—even though they were classified on the same measure as disabled enough to enter the study. That anomaly, which occurred because the investigators weakened key outcome thresholds after data collection, invalidates any claim that patients recovered or got back to normal. The overlap in entry and outcome criteria is only one of the trial’s unacceptable features." --[[Carol Monaghan]] MP "PACE is unique in UK medical history, in that it was part-funded by the [[Department for Work and Pensions|DWP]]. The links of some of its main authors to health insurance companies are troubling. One of those authors, Professor [[Michael Sharpe]], states in his briefing for the debate: 'Several of the investigators had done small amounts of independent consultancy for insurance companies, but this was not relevant to the trial. The insurance companies played no part in the trial.' I will leave hon. Members to make up their own minds about that." --[[Carol Monaghan]] MP "Some people consider ME to be a psychological condition, despite the fact that people with ME are not allowed to be blood or organ donors. Unfortunately, those who hold such beliefs often are in influential positions and have a blinkered view of the condition. I wonder what they have to fear from proper biomedical research into ME. If such research showed they were correct, their views would be vindicated. However, if it threw up new information that had an impact on ME treatment and care, as medical professionals they should surely support that." --[[Carol Monaghan]] MP ([https://www.youtube.com/watch?v=qZTfEG_u-rc video]) "I have seen scientists writing in journals such as the Journal of Health Psychology calling out the PACE trial, so the idea that the scientists who produced that work have gone unchallenged by other scientists is simply not true. A huge amount of evidence from eminent people in the science community questions the PACE trials, including the methodology, the evidence they used and how they treated their patients, as the hon. Lady said. Therefore, it has been proven not to be the case that the NICE guidelines, built on that questionable evidence, are the only way in which we should consider this disease, and she did that well in a previous debate." -- Sir [[Edward Davey]] MP "Some £5 million was set aside for the PACE trial; if we could have a small amount of that money to start real, biomedical research into ME, we would be making a step forward." --Sir [[Edward Davey]] MP "After spending more than £200,000 fighting a freedom of information request, Queen Mary University of London, PACE’s data custodian, had to share access to the data. Subsequent re-analyses have shown that changes to the criteria for recovery and improvement distorted the results." --[[Jim Shannon]] MP "There has been discredited research, such as the PACE trial—and others, no doubt—which is now being dismissed, and not before time." --[[Kelvin Hopkins]] MP "We must always make sure that there is a proper evidence base and that statistics are properly measured. We had a paper circulated to us that shows that the PACE statistics were false. They just did not work." --[[Kelvin Hopkins]] MP "[[Merryn Crofts|Merryn's (Croft)]] mum is critical of the PACE guidance given by NICE and attributes the worsening of Merryn’s condition to it." -- [[Liz McInnes]] MP (see [[Merryn Crofts]]) "If the PACE trial were a drug, it would have been banned by now.” --[[Liz McInnes]] MP, quoting the mother of Merryn Crofts ([https://www.youtube.com/watch?v=-H9ualBKcUY video]) "Patients with ME feel that they have been let down time and again as research such as the PACE trial — which, sensibly, we heard about — have been found to be seriously flawed. In fact, [[Jonathan Edwards]], emeritus professor of medicine, said that the PACE trial would be a great example 'in an undergraduate textbook as an object lesson in how not to design a trial'." --[[Sharon Hodgson]] MP ==Welfare benefits== The minister was criticized by [[Carol Monaghan]] MP for stating that those with [[M.E.]] could opt out of the treatments currently offered ([[CBT]] and [[GET]]): "The Minister has rightly said that any patient has the right to withdraw from medical treatment. However, when the [[Department for Work and Pensions|DWP]] is saying that patients must undertake graded exercise therapy, and when health insurance companies are saying that they must undertake graded exercise therapy, it puts the patient in a very difficult position." ==Graded exercise harms== Sir [[Edward Davey]] MP raised the prospect that if graded exercise continued to be offered on the basis it was safe, this may lead to patients taking legal action against the government: "If GPs, perhaps because they have not been trained, are making medical prescriptions for treatment following [[NICE guidelines]] because Ministers and the chief medical officer have not acted, if that treatment is harming people, and if that continues until October 2020 there will, as I said in my intervention, be a case for those who are harmed to go to court and seek compensation." He asked the minister whether [[GET]] should be withdrawn: "Should not graded exercise therapy be removed as a treatment option even before the NICE guidelines are reviewed, given the evidence that people are being harmed by it? The Minister is hearing that evidence today. Is there not a possibility that in future a court could compensate ME sufferers if they continue to be prescribed GET, given that we, the Minister and medical professionals know the evidence?" ==Support for the Millions Missing campaign== Some MPs expressed unequivocal support for the [[Millions Missing]] campaign coordinated by the [[The MEAction Network]]: "Millions Missing was mentioned by many Members, and I see some people wearing t-shirts in the Public Gallery. The hon. Member for Ealing North (Stephen Pound) is right that it has had some bad PR, but it is getting its act together. Millions Missing is an absolutely brilliant way of encapsulating the problem. A number of Members mentioned the shoes; I was particularly moved by the messages on the shoes. They were outside Richmond House, where the Department of Health used to be, as part of the Millions Missing campaign. The mission was to write what you miss; somebody had written on a pair of ballet shoes, 'I miss dancing in these shoes.' That was really moving and a human way of putting it." --*[[Steve Brine]] MP "It is essential that we speak for the millions missing, and it is great to see so many people in the Public Gallery." --Sir [[Edward Davey]] MP ==Notable statements== "Today is the day when we finally start to take (Myalgic) encephalomyelitis seriously and stop condemning people suffering from this ghastly, debilitating disease. Today is the day when we say, Yes, we understand the pain people suffer. Yes, we are going to do something about it. Yes, we respect you. Yes, we value you. Yes, today we are going to start investing in diagnosis, analysis and, God willing, a cure." --[[Stephen Pound]] MP ([https://www.youtube.com/watch?v=QWH0qVr4fSc video]) ==Ricky Gervais== During the Minister, [[Steve Brine]]'s, closing remarks he referred to a joke made by comedian Ricky Gervais in the past where he is said to have referred to [[M.E.]] as "Yes, that’s the one where they say I don’t want to go to work today". The minister urged Gervais to apologise, saying "perhaps he could retract that and apologise to the ME community today". Gervais stated on Twitter in January 2018 that he "understood the gravity of the disease".<ref>[https://twitter.com/rickygervais/status/950467074870140928?lang=en Twitter]</ref> ==Debate resources== *[https://hansard.parliament.uk/Commons/2018-06-21/debates/A49A6117-B23B-4E35-A83B-49FEF0D6074F/METreatmentAndResearch Hansard debate transcript] *[https://www.parliamentlive.tv/Event/Index/3d63c39d-18f3-4cd7-8509-c91785dced98 Debate video] *[https://researchbriefings.parliament.uk/ResearchBriefing/Summary/CDP-2018-0155 Parliamentary briefing document by patient groups, and House of Commons Library debate pack] ==Media coverage== *[https://www.bbc.co.uk/news/health-44568847 MP Carol Monaghan leads campaign for new ME treatment] *[https://www.thecanary.co/discovery/2018/06/22/a-cross-party-debate-has-offered-a-ray-of-hope-for-the-millions-missing/ A cross-party debate has offered a ray of hope for the ‘millions missing’] *[https://www.mirror.co.uk/news/politics/tory-minister-demands-comedian-ricky-12767943 Tory minister demands comedian Ricky Gervais apologises for branding ME sufferers 'lazy' in offensive joke] *[https://www.politicshome.com/news/uk/health-and-care/illnesstreatments/house/house-magazine/96009/carol-monaghan-we-must-change Carol Monaghan: We must change perceptions of the debilitating illness ME] *[https://www.loughboroughecho.net/news/local-news/parliament-debate-treatment-patients-14801745 Parliament to debate treatment of ME patients] *[http://www.thenational.scot/news/16033656.SNP_politician_to_lead_debate_on_poor_treatment_for_ME_patients/ SNP's Carol Monaghan to lead debate on treatment for ME patients] *[http://www.heraldscotland.com/news/15982563.Glasgow_MP_secures_parliamentary_examination_of_controversial_ME_trial/ Glasgow MP Carol Monaghan secures parliamentary examination of controversial ME trial] ==Patient group responses== *[[ME Association]]: [http://www.meassociation.org.uk/2018/06/mps-demand-more-biomedical-research-funding-for-cruel-death-sentence-disease-22-june-2018/ MPs demand more biomedical research for cruel ‘death sentence’ disease] *[[The MEAction Network]]: [https://www.meaction.net/2018/06/21/westminster-hall-debate-is-turning-of-the-tide-for-me/?mc_cid=a523a6bea8&mc_eid=187c2b7814 Westminster Hall debate is turning of the tide for M.E.] ==Learn more== *[https://www.parliament.uk/business/committees/committees-a-z/commons-select/backbench-business-committee/news-parliament-2017/me-research-debate-17-19/ On Thursday 21 June, MPs will hold a debate in Westminster Hall on Myalgic Encephalomyelitis treatment and research] *[https://www.parliament.uk/edm/2017-19/1247 Early day motion 1247 - ME Awareness Week 2018] *[https://researchbriefings.files.parliament.uk/documents/CDP-2018-0155/CDP-2018-0155.pdf Parliamentary debate pack] - House of Commons ==See also== * [[ME and CFS in popular culture]] * [[PACE trial]] *[[UK Parliament House of Lords PACE Trial debate 6th February 2013]] *[[UK Parliament Commons Chamber debate 24th January 2019]] *[[United Kingdom]] *[[Stigma and discrimination]] *[[Ethical issues]] == References == {{Reflist}} [[Category:United Kingdom]]
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