#MEAction blog post, 21 June 2018: Westminster Hall debate could be a ‘turning of the tide’ for ME

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.”

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.

Thank the MPs who attended

Thanks to Ben Lake, MP for Ceredigion, for supporting Carol Monaghan and this debate. He said:

The hon. Member has made a very important point about the decades of underinvestment.  A friend of mine, John Peters, suffers from ME and was first struck down in the 1980s.  The impact on his life has been total.  He acknowledges that he would not have been able to do everything in life; he knows that there would have been ups and downs.  But as he quite painfully put it to me, he has not had the ​chance to fail.  His is a life unlived.  So, given those decades of underinvestment, it is so important that we now change things for the future.

Watch the full debate

#MEAction is asking for your help to keep the momentum going.  Donate today to support their crowdfunding campaign and help them hire their first, on the ground UK coordinator.