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PACE trial Westminster debate - our summary

February 20, 2018

A parliamentary debate on the PACE trial has highlighted the flaws of the trial and called for greater education among the public and medical practitioners.

Carol Monaghan MP (Glasgow North West, Scottish National Party) brought the issue before the Second Chamber in Westminster Hall after being contacted by nearly 1000 people who have been affected by the PACE trial from across the world including Britain, Australia, and the US.

She highlighted that PACE participants were encouraged to become physically active and increase intensity, which led to some becoming more unwell and the media reporting that people with M.E. could exercise themselves better. She also criticised the trial’s altered thresholds for recovery and subjective reporting of patient outcomes.

She said there was a “lack of medical awareness among professionals and woeful lack of medical research” and emphasized that “patient voices must be heard in any treatments.” She added that patients were being disbelieved and accused of hypochondria and hysteria and that people who are housebound or dealing with brain fog were easy to ignore.

Her concluding remarks called for greater education among the public and medical practitioners (including compulsory training on M.E. for the medical profession) and for the next set of NICE guidelines to be drawn up by listening to people with M.E., along with proper funding for M.E. research, and for the Minister to work with DWP colleagues on new assessment criteria for people with M.E.

Other comments included:

  • Jim Shannon, DUP MP raised concerns that NICE need to review its recommendation of GET/CBT for people with M.E.
  • Alex Sobel, Labour MP, spoke about a friend who was referred to a support group and was told there was no other help available to them.
  • Layla Moran, Lib Dem MP, said a constituent’s daughter took a year to be diagnosed, meaning she missed a year of school.
  • Nicky Morgan, Conservative, said half an hour was not possible to do justice to the topic and the concerns of constituents and that it was a subject worthy of wider debate in the House of Commons
  • One MP suggested the current NICE guidance on M.E. should be suspended in light of the significant doubt being cast on the effectiveness of GET and CBT.