Carol Monaghan MP presented her application for a debate on ME to the Backbench Business Committee on Tuesday October 30th supported by Nicky Morgan MP, Steve Pound MP and Kelvin Hopkins MP. The application was also supported by over 30 other MPs from across the political divide at a crucial time for people with ME in the UK. MPs hope that this substantive motion will lead to a House of Commons Main Chamber debate this autumn. We expect to hear whether or not the application was successful within a week – stay tuned!
Carol Monaghan MP called into question the independence of the NICE guideline review process with over 60% of appointees being supporters of Graded Exercise Therapy (GET). Another point highlighted by the presenting MPs is the plight of children. Children with ME suffer from debilitating physical symptoms and have the added burden of suspicion. Some families are subject to child protection orders as parents are suspected of causing harm to their children. The MPs called for an investigation into these cases, which Carol Monaghan labeled as sinister.
Nicky Morgan MP mentioned the powerful cross-party support for the last ME debate, how widely reported this issue was and how she had been contacted by people from around the world after the debate. A Main Chamber debate would also give people a voice against a very powerful medical community.
Kelvin Hopkins MP talked about his personal connection with ME and the failure of the medical profession to diagnose and treat. He reported Dr Ian Gibson, a former MP for Norwich and expert witness, was ‘incandescent’ about PACE and the terrible damage it has done.
Stephen Pound MP talked about the double disability of ME and it being invisible and denied. He called for intervention in the ‘remorseless rolling rockfall’ that is likely to crush so many constituents. He pointed to the unequal contest between patients and doctors and the deep concern of ME patients about current treatments. He said that ‘medics have got it wrong in the past’. ‘If we don’t get this right,’ he concluded, ‘the consequences, particularly for paediatric ME sufferers will be absolutely disastrous’.
Watch the MPs call for the debate on ME before the Backbench Business Committee:
This follows on from two successful Westminster Hall debates. Monaghan led the parliamentary debate on the PACE trial last February in which the Minister acknowledged a wider debate would be warranted. Subsequently, Carol Monaghan MP sponsored the Westminster Hall debate on 21st June 2018 along with support from MPs Carol Monaghan, Nicky Morgan, Stephen Pound, Alex Chalk, Ben Lake, Kerry McCarthy.
We need as many people as possible to contact their MPs and tell them how important it is that they support the debate and hear what the ME community has to say. You can use the Parliamentary Toolkit to arrange a meeting with your MP in 4 simple steps. We have also put together a social media toolkit with useful tips for online advocacy. Find it here!
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If your MP hasn’t yet signed Carol Monaghan’s EDM 1247 then you can ask them to sign it. Check if your MP has signed here.
The ME community has had a lot of questions about whether it is safe to get a COVID-19 vaccine. ME/CFS experts from the Center for Complex Diseases, the Institute for Neuro-immune Medicine, the Bateman Horne Center and, in the UK, the ME Association have weighed in with their recommendations on this matter. Overall, clinicians are