Today was a turning of the tide for Myalgic Encephalomyelitis (ME) as 26 MPs attended a Westminster Hall debate on treatment and research for ME.
MPs called for the immediate removal of Graded Exercise Therapy (GET) from the NICE guidelines, as patients have consistently reported being harmed from attempting to undergo this treatment. MP Ed Davey called for the suspension of the GET guideline, suggesting that not doing so risks litigation.
“Never have I felt so heard,” said Sian Leary from Sheffield who has been housebound with ME for the past 5.5 years.
“Today is the day, here, in June 2018, where finally we started to take Myalgic Encephalomyelitis… seriously and we stopped condemning people who suffer from this ghastly debilitating disease,” said MP Stephen Pound, one of the 6 MPs who petitioned for the debate. “Today is the day we said, “Yes we understand the pain people suffer . Yes we’re going to do something about it. Yes we respect you. Yes we value you. And yes today we’re going to start investing in diagnosis and analysis and, god willing, cure”.
Carol Monaghan MP, who had led the petition for the debate, said that Professor Sharpe, one of the authors of the PACE trial, emailed her this week to tell her that her behaviour is “unbecoming of an MP”.
“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. [Hon. Members: “Hear, hear!”] If Members of Parliament are not willing to stand up for the most vulnerable in society, what hope do any of us have?”
MP Liz McInnes spoke about how GET had worsened Merryn Croft’s condition. Merryn Croft, 21, died from severe ME.
Health Minister Steve Brine, MP, welcomed the NICE’s decision to undertake a full review of ME guidelines, but avoided taking responsibility saying, “It would be inappropriate and wrong for Ministers to interfere with the process, but I feel sure that NICE will be listening to the debate and taking a keen interest in it.”
[maxbutton id=”16″ url=”https://hansard.parliament.uk/Commons/2018-06-21/debates/A49A6117-B23B-4E35-A83B-49FEF0D6074F/METreatmentAndResearch” text=”Read the Transcript” ]
The debate was a result of 6 MPs petitioning for a full debate in the House of Commons with support from MPs Carol Monaghan, Nicky Morgan, Stephen Pound, Alex Chalk, Ben Lake, Kerry Mccarthy. #MEAction mobilized over 2,800 constituents to urge 605 MPs to attend the debate. (Thank you to everyone who reached out to their MPs and encouraged others to do the same!)
The debate follows on the heels of 27 cities across the UK joining the global #MillionsMissing protest last month, and months of intense campaigning and actions from #MEAction UK and many charities participating in Forward ME. This past February, we secured a debate on the PACE trial. We also secured signatures from 100 MPs for the Early Day Motion 1247 that called on the House of Commons to acknowledge the detrimental effects of the PACE trial.
We need your help to keep the momentum going. Now more than ever, it’s crucial we have the capacity to sustain and grow the impact of this work. Donate today to our crowdfunding campaign and help us hire our first, on the ground UK coordinator.
Watch the full debate:
Goodbye to graded exercise therapy but concerns about physical activity programmes – Community Discussion
There were significant concerns about the recommendation of a physical activity programme in the draft ME/CFS guideline, even with the caveats attached. The recommendation that a physical activity programme should be considered if patients would ‘like’ to start one, was felt to imply that there is a choice or a desire involved, rather than increased physical activity being impossible for many.