UK Parliament Grand Committee Room debate 21st June 2018

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M.E. Research and Treatment debate in the Grand Committee Room

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.[1] 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: 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[edit | edit source]

Government representative[edit | edit source]

  • Steve Brine MP (Parliamentary Under-Secretary Department of Health and Social Care)

Government opposition representative[edit | edit source]

MPs who contributed to the debate[edit | edit source]

MPs in attendance[edit | edit source]

Other MPs attended for some or all of the debate, but did not speak:

Notable public gallery attendees[edit | edit source]

Debate chairs[edit | edit source]

Professor Michael Sharpe[edit | edit source]

In advance of the debate Professor Michael Sharpe provided a pre-hearing briefing[2]. His briefing was criticized[3].

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?" (video)

The PACE trial[edit | edit source]

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 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 (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'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 (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[edit | edit source]

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 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[edit | edit source]

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[edit | edit source]

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[edit | edit source]

"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 (video)

Ricky Gervais[edit | edit source]

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".[4]

Debate resources[edit | edit source]

Media coverage[edit | edit source]

Patient group responses[edit | edit source]

Learn more[edit | edit source]

See also[edit | edit source]

References[edit | edit source]

  1. ↑ Hansard (June 22, 2018). "ME: Treatment and Research - UK Parliament". hansard.parliament.uk. Retrieved January 25, 2019.
  2. ↑ Pre-hearing briefing
  3. ↑ Sharpe’s briefing on the (“so-called”) PACE trial for the 21 June 2018 Westminster Hall debate
  4. ↑ Twitter

myalgic encephalomyelitis (M.E.) - A disease often marked by neurological symptoms, but fatigue is sometimes a symptom as well. Some diagnostic criteria distinguish it from chronic fatigue syndrome, while other diagnostic criteria consider it to be a synonym for chronic fatigue syndrome. A defining characteristic of ME is post-exertional malaise (PEM), or post-exertional neuroimmune exhaustion (PENE), which is a notable exacerbation of symptoms brought on by small exertions. PEM can last for days or weeks. Symptoms can include cognitive impairments, muscle pain (myalgia), trouble remaining upright (orthostatic intolerance), sleep abnormalities, and gastro-intestinal impairments, among others. An estimated 25% of those suffering from ME are housebound or bedbound. The World Health Organization (WHO) classifies ME as a neurological disease.

myalgic encephalomyelitis (M.E.) - A disease often marked by neurological symptoms, but fatigue is sometimes a symptom as well. Some diagnostic criteria distinguish it from chronic fatigue syndrome, while other diagnostic criteria consider it to be a synonym for chronic fatigue syndrome. A defining characteristic of ME is post-exertional malaise (PEM), or post-exertional neuroimmune exhaustion (PENE), which is a notable exacerbation of symptoms brought on by small exertions. PEM can last for days or weeks. Symptoms can include cognitive impairments, muscle pain (myalgia), trouble remaining upright (orthostatic intolerance), sleep abnormalities, and gastro-intestinal impairments, among others. An estimated 25% of those suffering from ME are housebound or bedbound. The World Health Organization (WHO) classifies ME as a neurological disease.

See single nucleotide polymorphism.

single nucleotide polymorphism (SNP) - A single nucleotide polymorphism (SNP, pronounced "snip") is a potential genetic mutation that occurs in a single spot in the human genome; a difference in a single DNA building block. SNPs are often represented by an "rs" number, such as "rs53576".

PACE trial A controversial study which claimed that CBT and GET were effective in treating "CFS/ME", despite the fact that its own data did not support this conclusion. Its results and methodology were widely disputed by patients, scientists, and the peer-reviewed scientific literature.

biomedical research basic medical research on organisms, such as humans or other living things, that helps increase medical knowledge. (Learn more: me-pedia.org)

NICE guidelines Clinical guidelines used in the UK.

graded exercise therapy (GET) - A gradual increase in exercise or activity, according to a pre-defined plan. Focuses on overcoming the patient's alleged unhelpful illness beliefs that exertion can exacerbate symptoms, rather than on reversing physical deconditioning. Considered controversial, and possibly harmful, in the treatment or management of ME. One of the treatment arms of the controversial PACE trial.

See Graded exercise therapy.

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