1. See the 'News in Brief' from w/c 12th August, by clicking here, Guest.
    Dismiss Notice

How to follow up on the Carol Monaghan debate in Westminster

Discussion in 'Advocacy Action Alerts' started by Sasha, Feb 20, 2018.

  1. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    Messages:
    3,247
    Likes Received:
    27,585
    Location:
    UK
    "The circumstances of his later life and premature death are cited by physicians who believe the extensive evidence for the biological etiology of chronic fatigue syndrome. Brynmor John had been diagnosed with the illness, and died suddenly immediately after exiting the House of Commons gym. He had been following an exercise regime based on what is argued to be unfounded and unethical medical advice: that sufferers may exercise their way toward a cure for the illness".
    @NelliePledge thanks for this info.
     
  2. NelliePledge

    NelliePledge Senior Member (Voting Rights)

    Messages:
    3,531
    Likes Received:
    24,072
    Location:
    UK East Midlands
    Thanks to @medsci for the link it would be good if someone has got some energy to send the Hansard link and this wiki one to Carol M.
     
  3. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    Messages:
    3,247
    Likes Received:
    27,585
    Location:
    UK
    already done it:)
     
  4. NelliePledge

    NelliePledge Senior Member (Voting Rights)

    Messages:
    3,531
    Likes Received:
    24,072
    Location:
    UK East Midlands
    Brilliant Sly
     
  5. Skycloud

    Skycloud Senior Member (Voting Rights)

    Messages:
    1,691
    Likes Received:
    12,799
    Location:
    UK
    Quick update. Really pleased to find an email of support from my MP today - amongst other things said if GET and CBT stay in the guidelines she will fight it.
     
    Sunshine3, Webdog, Jan and 20 others like this.
  6. Binkie4

    Binkie4 Senior Member (Voting Rights)

    Messages:
    1,163
    Likes Received:
    8,766
    Pleased to hear she will fight GET and CBT remaining in the guidelines.
    Has she signed the petition? It's an action that can be taken now.

    EDIT: have written to thank my MP for support including signing petition and asking him to work with Carol and other MPs to obtain a full Commons debate.
     
  7. Skycloud

    Skycloud Senior Member (Voting Rights)

    Messages:
    1,691
    Likes Received:
    12,799
    Location:
    UK
    I don't know - she was replying to my letter before last! Will draw it to her attention but I don't want to spam her.
     
  8. It's M.E. Linda

    It's M.E. Linda Senior Member (Voting Rights)

    Messages:
    280
    Likes Received:
    2,192
    Our local M.E. group wanted to contact the MP’s in our County (5 Cons, 1 Lab). We have members from 5 of the constituencies and the first letter has been prepared and was sent on Friday 16.3.18.
    3 of us hope to visit our MP within the next month for added impact.

    Sarah Reed from ME Action provided me with some basic info, which might help others who have the energy and also want to contact their MP’s.

    “Hi Linda,

    Great to hear from you and about your friendship group and willingness to contact Alex Chalk. I know he is very supportive and it would be well worth your time to build up rapport with him.

    Yes, I've been lobbying Nicky Morgan since Unrest and I'm working with MEA, AfME, and ME Trust to produce a collaborative briefing. Nicky (& David Drew) were planning to put in for a Westminster Hall debate just after recess ie this week onwards!! (Debates are like busses!)
    However, after Tuesday's debate Nicky, Carol, David and others are now planning their debate on a much larger scale. We were really encouraged how much cross party support there was - and it's growing!

    I've no idea when the next debate would be but I know they are hoping for 'May or sooner' to keep the momentum going.

    It would be great if you could arrange to see Alex asap and share your story. You could take our #MEAction parliamentary briefing with you as a hard copy? This focuses more on why the NICE guidelines need updating. More details on PACE can be found here: https://www.meaction.net/pace-trial/ .(I've already sent him a summary of Tuesday's debate with links to Hansard.)

    If Nicky is successful in securing a debate we might not get much notice. It could be as little as a week so it's best to get prepared now. We will email out the collaborative briefing to MP's when the time is right and all we would be asking you to do at this stage is encourage them to attend.

    MP's really do respond best to requests by constituents, so thanks very much for taking the time and energy to do this.

    Best wishes,


    [​IMG] NICE-Parliamentary-Briefing_Final.pdf


    If you are able to make personal contact with your MP, a quick email to sarah.reed@meaction.net would be appreciated as she is trying to collate a list of M.E. receptive MP’s.

    Shout if you would like more info, I’m a great believer in not re-inventing the wheel!
    (Bit slow moving, but pleased we’ve managed to get this far)
     
    Jan, MEMarge, MeSci and 4 others like this.
  9. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

    Messages:
    4,896
    Likes Received:
    51,300
    I fear that trying to fight NICE guidelines once issued is not going to have any effect. MPs, like patients, don't count in the world medical evidence. If she wants to do anything it needs to be before the guidelines get issued. We do have two years for that, though, so hopefully there will be opportunities.
     
    ukxmrv, Jan, Barry and 6 others like this.
  10. Sasha

    Sasha Senior Member (Voting Rights)

    Messages:
    3,048
    Likes Received:
    19,375
    Location:
    UK
    I really do hope that there's something we can do long before that, to get these guidelines overturned. That's a lot of patients who are going to be treated with GET in the meantime, to the detriment of their health. I'm really worried about them.
     
    Forestvon, ukxmrv, Jan and 8 others like this.
  11. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

    Messages:
    4,896
    Likes Received:
    51,300
    We might persuade NICE to remove the recommendations before 2020 but I think it will be very hard. What may be more promising is if the profile of the PACE critique is raised generally in the public consciousness. We have got as far as parliamentary debate and there are other avenues to pursue so maybe that will happen over the coming months.
     
  12. Esther12

    Esther12 Senior Member (Voting Rights)

    Messages:
    3,138
    Likes Received:
    26,014
    Just letting people know that this now seems out of date, as it looks like it was written to try to get NICE to agree to update their guidelines, which they are now doing. [I was a bit confused when reading it]
     
  13. It's M.E. Linda

    It's M.E. Linda Senior Member (Voting Rights)

    Messages:
    280
    Likes Received:
    2,192
    Sorry to confuse.

    I think Sarah attached it as possible background reading for MP’s who may not understand why we need a debate on the PACE trial.
     
  14. Indigophoton

    Indigophoton Senior Member (Voting Rights)

    Messages:
    848
    Likes Received:
    9,713
    Location:
    UK
    Just for the record, I have heard back from my MP, who wrote to Carol Dinenage to raise my post-debate queries (challenges).

    I made detailed, referenced, points regarding COI, use of Oxford criteria, PACE PIs sitting on the Cochrane review, the NICE guidelines review, the current situation regarding GET, and the FND brain study. I also described my own experience of inappropriate treatment under the current NICE guidelines, and its negative effect on my health.

    Lord O'Shaughnessy, Parliamentary Under-Secretary for Health, wrote back, but my questions were not answered. Instead, much of the reply is a re-iteration of the usual, very similar, if not identical in places, to what the Minister said at the debate.

    From Shaughnessy's reply:
    I don't think I'd realised that NICE were considering changing the diagnostic criteria, as well as potential treatment recommendations.

    On the positive side, my MP is willing to help if there is anything else she can do.
     
  15. Esther12

    Esther12 Senior Member (Voting Rights)

    Messages:
    3,138
    Likes Received:
    26,014
    Just saw this annoying response from an MP (I'm not sure where it was pasted from though):

     
  16. Esther12

    Esther12 Senior Member (Voting Rights)

    Messages:
    3,138
    Likes Received:
    26,014
    PS: I feel a bit guilty for not doing more to try to follow up on this debate. It seems like a great opportunity to get pressure applied by those outside of the usual corrupt networks. I did get into a potentially promising exchange with my MP, but have then taken ages to send a new response.
     
  17. Kalliope

    Kalliope Senior Member (Voting Rights)

    Messages:
    2,130
    Likes Received:
    21,948
    Location:
    Norway
    Not sure if this was the right thread. Perhaps we should make a general Carol Monaghan thread?




    From Monaghan on FB:
    [​IMG] Delighted to join Anna Foster on BBC Radio 5 live today to discuss the ongoing campaign to change attitudes towards ME, for better research funding and a change to the current damaging NICE guidelines.

    Did anyone listen to the whole interview and/or have link?
     
    It's M.E. Linda, Barry, MeSci and 4 others like this.
  18. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    Messages:
    3,247
    Likes Received:
    27,585
    Location:
    UK
    janice, MEMarge, MeSci and 3 others like this.
  19. Kalliope

    Kalliope Senior Member (Voting Rights)

    Messages:
    2,130
    Likes Received:
    21,948
    Location:
    Norway
    Thank you, @Sly Saint ! I'll listen to it now. It is with Merry Croft's sister and mother and I think MP Monaghan is just a small part of it.
     
    MEMarge, Barry and Esther12 like this.
  20. Kalliope

    Kalliope Senior Member (Voting Rights)

    Messages:
    2,130
    Likes Received:
    21,948
    Location:
    Norway

Share This Page