January 25, 2019

Historic Parliamentary Debate Shaped By People With ME

On Thursday 24th January 2019 a historic debate took place. Over 40 MPs from across the political divide sat in the House of Commons to debate a motion on myalgic encephalomyelitis (ME), with 27 making impassioned contributions on behalf of their constituents.

Together they unanimously passed this motion:

“That this House calls on the Government to provide increased funding for biomedical research into the diagnosis and treatment of ME, supports the suspension of Graded Exercise Therapy and Cognitive Behaviour Therapy as means of treatment, supports updated training of GPs and medical professionals to ensure they are equipped with clear guidance on diagnosis of ME and appropriate management advice to reflect international consensus on best practice, and is concerned about the current trends of subjecting ME families to unjustified child protection procedures”.

This debate built on two Westminster Hall debates last year, which demonstrated the breadth of support for this subject and need for further debate on a centre stage. Opportunities to debate issues raised by backbench MPs are hard to come by, yet Carol Monaghan MP’s persistence and hard work in petitioning parliament, along with a strong backing in particular from Nicky Morgan MP, Stephen Pound MP, and Alex Chalk MP, turned this into a reality.

However, it was the sheer numbers of people with ME, their families, friends and allies, who had contacted their MPs imploring them to speak up on their behalf, coupled with the strength of their testimony, that ensured the human cost of this devastating disease was heard in the corridors of power.

Carol Monaghan MP used her opening speech to describe the case of “B”, who became ill at just 8 years of age. A harrowing tale then followed of parents being told they would have child protection proceedings initiated against them if they didn’t fully comply with social services demands. “B” rapidly deteriorated through graded exercise therapy. She continued to deteriorate whilst on an activity programme in an inpatient unit, and her mother was banned from visiting. Like many families of children with ME, they turned to TYMES Trust and Dr Nigel Speight. “B” was finally allowed home and her name eventually removed from the “at-risk” register, but, at 15, she is now bedridden, paralysed and unable to feed or wash herself.

Every single MP who spoke brought up the dearth of biomedical research funding for ME, lambasting the failures of both government and funders. Sharon Hodgson MP poignantly reminded the House that UK ME research funding is lower now than it was in 2013/14.

There were frequent mentions of the harm caused by graded exercise therapy and cognitive behavioural therapy, with MPs from all the main parties decrying the October 2020 timescale for the publication of the new NICE guidelines, and demanding NICE immediately issue a public statement about the harms that can be caused by the current guidelines. Watch Nicky Morgan’s statement here.

Stephen Pound MP made an especially rousing contribution to the proceedings, declaring that:

“This House recognises the reality of your condition. This House will not sit idly by while you suffer. This House will not ignore you. This House will devote its intelligence and its resources to research, ultimately to resolve and to cure, this terrible condition (…). ME sufferers the world over must know that this House and this nation is finally speaking for you.”

Despite the previous debate over-running and MPs’ speaking time limited to four, then two minutes, many MPs chose to devote their short time to speak not only their own words, but those of their constituents. Nick Thomas-Symonds MP read out the words of Reg, his 94 year old constituent, who wishes only for his severely ill grandson to be well enough to visit him on his 95th birthday. Watch it here.

Disappointingly, the strength of feeling expressed by contributing MPs was not reflected in the government’s response. The responding minister, Steve Brine MPsought to excuse the lack of research, and minimised the mistreatment of people with ME by medical professionals and the harm caused by current therapies. He failed entirely to acknowledge the families who had been subjected to child protection proceedings. The weak offering made no solid commitments for imminent change. However, a round table discussion, including Carol Monaghan MP, on medical training with Helen Stokes-Lampard of the RCGP was proposed, with a mention that the All Party Parliamentary Group on ME could be reinstated. The minister also said that he would look into the point raised by Carol Monaghan MP and others about a request for an early statement from NICE.

Stronger Going Forward

The narrative of this debate was set by people with ME, the language was of people with ME and their families, and the advocacy was for people with ME. For the first time in UK history, those who have previously set the parameters for discussion and denied the experience of people with ME were silent. Our community is more connected than ever, and yesterday Parliament spoke with one voice on our behalf. This is a powerful marker of discursive change, and gives us new and authoritative leverage in our continued campaigning. #MEAction will keep campaigning for the rights of people with ME and this debate will help us build stronger campaigns and lobby to the relevant government and health government bodies in the future.

Beyond the House of Commons, the participation in #MEAction’s virtual demonstration supporting the motion ensured this debate reached tens of thousands across social media.