UK MPS Secure Westminster Hall Debate on ME

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Mark your calendars! A 3-hour Westminster Hall debate on Myalgic Encephalomyelitis (ME) treatment and research has been scheduled for Thursday, 21st June, 1:30-4:30 p.m.
The fight for a larger debate on ME has had cross party support with Carol Monaghan MP securing the debate, along with the support of five other MPs.
#MEAction UK and three other ME charities – ME Association, Action for M.E., and the ME Trust –  came together to prepare a parliamentary briefing on Myalgic Encephalomyelitis. The partnership originally formed after these charities expressed interest in getting involved in the “Time for Unrest” campaign following the parliamentary screening of the documentary, Unrest.
Together, these charities had worked to secure the first Westminster Hall debate on the PACE trial last February, and to apply for a larger House of Commons debate that has resulted in this Westminster Hall debate on 21st of June.  
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Carol Monaghan had applied for a full debate in the House of Commons. Her application to the BackBench Business Committee was supported by five other cross party MPs. The fact that Carol’s application was successful is great news, and there is still a chance that a full Chamber debate might be granted in the autumn.
Supporting MPs include: Nicky Morgan MP (Cons), Stephen Pound (Lab), Alex Chalk (Cons), Ben Lake (Plaid) and Kerry McCarthy (Lab).
We need your help to keep the momentum going. Help us hire a full-time, on-the-ground #MEAction team member in the UK to support more work like this by donating to our UK crowdfunding campaign today.

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6 thoughts on “UK MPS Secure Westminster Hall Debate on ME”

  1. Why was Invest in ME not involved in the parliamentary briefing? Of all the charities in the UK, it is the one that most has its finger on the pulse of current research into ME. I sincerely hope Invest in ME will be included in future.

    1. Adriane Tillman

      Hi Alison,
      Thank you for your comment. #MEAction absolutely appreciates the importance of Invest in ME and hopes to collaborate with as many charities in the UK as possible. We just published an article about how the UK parliamentary briefing came about.
      Essentially, the Unrest team reached out to every national charity in the hope of being as collaborative as possible, and the following ones were the charities that came forward to be official supporters of the film. The idea for the parliamentary briefing came out of this collaboration. You can read more about the process here: https://meaction.net/2018/06/07/learn-more-about-the-uk-parliamentary-briefing/

  2. Why aren’t you asking for CBT/GET to be removed from the NICE guidelines as a suitable (in fact as the only) treatment for M.E.? That’s totally unacceptable, your organisation doesn’t speak for me as a severe ME sufferer

    1. Adriane Tillman

      The Parliamentary Briefing speaks to the NICE guidelines on pg. 5, and makes a strong case for removing CBT/GET from the NICE guidelines based on evidence of the harm from prescribing those treatments.
      “Recommendations from ME charities
      ● Recognise that ME is primarily biological, not psychological, in line with a growing
      international consensus
      ● NICE to take patient concerns about treatments into account, by removing Graded Exercise
      Therapy or at least including its potential harms
      ● Enable patients to make fully-informed decisions about the healthcare they are offered
      ● NICE ought to make a public statement about the harm that can be caused by inappropriate
      use of the current guideline, for the period it remains active (until the new guideline is
      published in October 2020)”
      Beyond the Parliamentary Briefing, #MEAction UK has been working hard to have the CBT/GET recommendation removed from the NICE guidelines. You can read more about their work here: https://meaction.net/2018/05/30/listened-to-but-were-we-heard-the-nice-guidelines-scoping-workshop/
      You can also see our past actions here: https://meaction.net/2017/07/12/troubled-by-nice-guidelines-three-easy-ways-you-can-help/

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