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Carol Monaghan granted a Backbench debate (UK Parliament) Thursday 24th January 2019

Discussion in 'General ME/CFS news' started by Andy, Jan 17, 2019.

  1. Andy

    Andy Committee Member

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    Hampshire, UK
  2. Gecko

    Gecko Senior Member (Voting Rights)

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    Thanks for flagging this up. I assume the 95% figure comes from here:
    A systematic review describing the prognosis of chronic fatigue syndrome
    But it should have been referenced, as should those endnotes have been completed. I'll feed this back to #MEAction and see if there's any way of getting it fixed.
     
    Barry, andypants, MSEsperanza and 4 others like this.
  3. MEMarge

    MEMarge Senior Member (Voting Rights)

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    Thanks @Gecko for all that you and other MEAction people are doing
     
    Barry, Inara, MSEsperanza and 4 others like this.
  4. EspeMor

    EspeMor Established Member (Voting Rights)

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    Thank you all for the feedback, it has been noted and we will try to fix before the debate, but as you can imagine, there are quite a lot of things going on.

    The briefing we have produced, as you can see, it's essentially tailored made for this motion and so we didn't have much time to publish and send to all once this was announced, hence some things might have been missed. In any case, I do think it's a great document for this debate and it will help MPs immensely.

    ps: keep emailing your MPs!!! :)

    Espe
     
    MSEsperanza, Cinders66, MeSci and 8 others like this.
  5. Kalliope

    Kalliope Senior Member (Voting Rights)

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  6. Sasha

    Sasha Senior Member (Voting Rights)

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    Am I right in thinking we still don't really know what time the debate is, other that it's some time (possibly hours?) after 9:30 am?
     
    MEMarge, Barry and Trish like this.
  7. Cheesus

    Cheesus Established Member (Voting Rights)

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  8. Esther12

    Esther12 Senior Member (Voting Rights)

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    That parliament website confused me too, but I think that the 'main chamber' section lists all the main chamber's business that day, rather than just being what comes before the others things listed.
     
    MEMarge, ukxmrv and Cheesus like this.
  9. Barry

    Barry Senior Member (Voting Rights)

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    Do we know how much time has been allocated to this debate?
     
    MEMarge likes this.
  10. Cheesus

    Cheesus Established Member (Voting Rights)

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    95
    Some Google-fu has led me to conclude that it will be 3 hours.

    Now that I am looking at the parliament website correctly (thanks @Esther12), I think a 2pm start is a safe bet. An adjournment debate (the only business remaining after our spot) is typically half an hour and Parliament usually ends for the day at 17:30. A backbench debate can last either 90 minutes, 3 hours or 6 hours.

    Putting all that together, it looks like a 3 hour debate starting at 2.
     
  11. Trish

    Trish Moderator Staff Member

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    MSEsperanza, MeSci, Hutan and 4 others like this.
  12. EspeMor

    EspeMor Established Member (Voting Rights)

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    It might go for up to 3 hours starting from 2/2.30pm (parliamentary business allowing that starting time!). Last WOW debate was delayed by several hours but let's hope this is not the case!

    We will be live tweeting and posting on social on the day to provide the most accurate info as we can! And if we do have additional info before that, we will make sure everyone has it! ;)

    Espe
     
  13. Andy

    Andy Committee Member

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  14. NelliePledge

    NelliePledge Moderator Staff Member

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    What is WOW??
     
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  15. MeSci

    MeSci Senior Member (Voting Rights)

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    Cornwall, UK
  16. MeSci

    MeSci Senior Member (Voting Rights)

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    4,503
    Location:
    Cornwall, UK
  17. Gecko

    Gecko Senior Member (Voting Rights)

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    Location:
    England
    WoW is a long running campaign against the "War on Welfare". Or more specifically the cuts to disability benefits, and the hardship caused by PIP and ESA assessments.
    You can ready more about it here: https://wowvoices.uk/what-is-wow/
     
    EspeMor, MeSci, ukxmrv and 5 others like this.
  18. NelliePledge

    NelliePledge Moderator Staff Member

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    13,285
    Location:
    UK West Midlands
    Right I have actually heard of WOW it but it wasn’t obvious to me in this context what it meant
     
    Gecko likes this.
  19. Gecko

    Gecko Senior Member (Voting Rights)

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    Location:
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    Virtual Demonstration in support of the ME debate motion:

    https://www.meaction.net/2019/01/22/join-the-virtual-demonstration-in-support-of-the-me-debate/

    [​IMG]


     
    EspeMor, ukxmrv, rvallee and 2 others like this.
  20. Suffolkres

    Suffolkres Senior Member (Voting Rights)

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    1,522
    Another result and fulsome reply! Peter Aldous Waveney Suffolk MP

    Dear Ms R
    Thank you for contacting me about ME, which can be a painful and extremely debilitating condition, impacting on the quality of life of an individual.
    While there is currently no cure for ME, there are treatments that may help to ease symptoms, although no one form of treatment may suit every patient. Patients should be involved in decision-making throughout every stage of their care. Furthermore, patients should be offered information about local and national self-help groups and support groups for people with ME and their carers.
    Research into this area is vital. The Medical Research Council (MRC) and the National Institute for Health Research welcome high quality applications for research into all aspects of ME. ME research is a current MRC priority area and so far over £2 million has been invested into this research area.
    The majority of services for people with ME are the responsibility of local clinical commissioning groups. To assist diagnosis, the National Institute for Health and Care Excellence (NICE) produced clinical guidance on the diagnosis, treatment care and support of children and adults with ME.
    NICE is currently reviewing these guidelines. This process will require thorough and careful consideration, and NICE expect to publish new guidelines on ME in 2020. Ministers advise that these new guidelines will take into account patients' concerns about the PACE trials and the effectiveness of some existing recommendations.
    I do have commitments tomorrow which may make it difficult for me to participate in and to attend the whole debate, though I shall try to be in the Chamber for at least part of the debate and if I feel that there are specific points that need to be made I shall raise them.
    Thank you again for taking the time to contact me.
    Yours,
    Peter Aldous
     
    ladycatlover, Lisa108, MeSci and 4 others like this.

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