"Never have I Felt so Heard"

Published on Jun 21, 2018

Myalgic Encephalomyelitis treatment and research

Published Tuesday, June 19, 2018

This pack has been prepared ahead of the debate to be held in Westminster Hall on Thursday 21 June 2018 at 1.30pm on Myalgic Encephalomyelitis treatment and research. The subject for the debate has been selected by the Backbench Business Committee and the debate will be opened by Carol Monaghan MP.

A debate on Myalgic Encephalomyelitis: Treatment and Research will take place in Westminster Hall on 21 June 2018. The debate will be led by Carol Monaghan MP.

There has been recent debate on a number of issues relating to treatment and research for Myalgic Encephalomyelitis (ME). These have included calls for improved awareness of this condition and greater provision of services and specialist care. Following a recent review, clinical guidelines on the diagnosis and management of this condition are currently being updated.

Both the type and funding of research undertaken into this condition is also an issue that has been raised recently. Charities and campaigners report that funding is significantly less than for conditions with a similar prevalence and disease burden.[1]

[1] ME Association, Action for M.E., ME Trust and #ME action,Parliamentary briefing for Carol Monaghan MP’s debate on Myalgic Encephalomyelitis Treatment and research, 12 June 2018

Commons Debate packs CDP-2018-0155

Authors: Nikki Sutherland; Sarah Barber; Rachael Harker

Topics: Diseases, Health finance, Health services

Download the full report

Commons Library debate pack: Myalgic Encephalomyelitis treatment and research ( PDF, 373.05 KB)


Carol Monaghan MP (Glasgow North West, Scottish National Party) leads the debate on Myalgic Encephalomyelitis treatment and research

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”.


“it is estimated that around a quarter of a million people in the UK suffer from myalgic encephalomyelitis—ME. It costs the UK around £3.3 billion per annum. Although the exact cause of the disease is unknown, numerous patients report that their ME developed following a viral infection. ME is characterized by flu-like symptoms that can vary in severity from headaches and muscle aches to debilitating pain, extreme sensitivity to light and sound, and memory and concentration problems. For some, even touch is intolerable and they require tube feeding. Despite the number of people affected and the devastating effect of the disease on sufferers and their families, it is very much a hidden illness, which is characterised by some as yuppie flu and misunderstood by doctors, the public and politicians alike....”

Full Transcript


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