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UK: All Party Parliamentary Group (APPG) on ME news, 2020 onward

Discussion in 'News from organisations' started by Andy, Feb 19, 2020.

  1. InitialConditions

    InitialConditions Senior Member (Voting Rights)

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    Not sure if you are aware, but, according to a post I saw on Twitter earlier, the AGM meeting has been postponed. Not sure of the source for that info.

    EDIT: The source is an MEA Facebook post.
     
    Peter Trewhitt and Binkie4 like this.
  2. Binkie4

    Binkie4 Senior Member (Voting Rights)

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    I need to check this. I saw a comment on facebook that it was on as if it had previously been cancelled but reinstated. I will recheck tomorrow and post accordingly.

    EDit: see below for confirmation of postponement. @InitialConditions - thank you
     
    Last edited: Mar 16, 2023
    Peter Trewhitt likes this.
  3. InitialConditions

    InitialConditions Senior Member (Voting Rights)

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    MEMarge, Peter Trewhitt and Binkie4 like this.
  4. Binkie4

    Binkie4 Senior Member (Voting Rights)

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    https://meassociation.org.uk/2022/0...liamentary-party-group-appg-for-m-e-29-march/

    Post now on ME Association page. Meeting rescheduled to 29th March, 10-10.30am.

    edit: the revised schedule only allows half an hour for the meeting rather than the hour initially announced. It is hard to see how the initial agenda will fit into half an hour.

    The following items no longer seem to be on the shortened agenda
    • "a one year-on review of the implementation of the new NICE guideline including a presentation from Action for M.E. on the results from a Freedom of Information request regarding the implementation of the revised NICE Guideline responded to by 106 ICBs and NHS Trusts.
    • a discussion of support for those with severe ME" (post #158 @Andy )
    ie the most interesting items seem to have been removed from the agenda announced on 6th March. Anyone?

    edit2: Apologies all. The link above refers to last year's APPG meeting which appeared at the top of my MEA fb page. Sorry I didn't catch it. For other info see below.
     
    Last edited: Mar 17, 2023
  5. Ariel

    Ariel Senior Member (Voting Rights)

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    This is really worrying as they are so important; perhaps this can be reinstated? What is going on? :/
     
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  6. Binkie4

    Binkie4 Senior Member (Voting Rights)

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    What is going on? Does anyone know anything about AfME's FOI request about the implementation of the new Nice guidelines responded to by 106 ICBs and NHS trusts? What information did they collect?

    Why would a discussion on support for those with severe ME be withdrawn at a time when we have a number of severe ME patients in extremis and lacking support?
     
    Fizzlou, Ariel, Trish and 1 other person like this.
  7. Trish

    Trish Moderator Staff Member

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    It may be as simple as diary clashes and this being the only time slot the leaders of the group could find. Hopefully they will find a time soon for those important discussions.
     
  8. Binkie4

    Binkie4 Senior Member (Voting Rights)

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    I very much hope so.
     
    Peter Trewhitt, Trish and Ariel like this.
  9. Binkie4

    Binkie4 Senior Member (Voting Rights)

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    Apologies all. I have been in touch with MEA. The link I posted for the pending APPG in fact refers to last year's meeting. The new date has not yet been set.

    It has also been confirmed that the length of time for the pending meeting remains as originally planned and the content of the meeting as originally advertised. Phew! I apologise for setting a hare running and causing consternation and unnecessary concern.
     
    MEMarge, Dolphin, Arnie Pye and 5 others like this.
  10. Fainbrog

    Fainbrog Senior Member (Voting Rights)

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    Feels like the APPG leadership (there are 5 or 6 co-chairs) and/or the secretariat, can't organise the proverbial drink up in a brewery.

    No meeting for something like 10 months, what could been seen as a hastily organised meeting when there was a bit of agitation on social media (such as The Chronic Collaboration) and now this is it/isn't it happening.

    Is it any wonder many folks with ME are so despairing when our elected representatives can't bring themselves together to fight, even a bit, on our behalf?

    There was an opportunity for the APPG to get some momentum last year with the DHSC piece and build from there, however, yet again, we have a complete vacuum.. Many people with ME will have contacted their MP, using precious energy that they can ill afford to waste, most of those MPs will not have attended anyway, but that effort/energy can't be gained back.

    Sorry, end of moan..
     
    MeSci, Sean and Peter Trewhitt like this.
  11. Trish

    Trish Moderator Staff Member

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    There are hundreds of APPG's and they have no formal role or clout in parliament and are a tiny part of any MP's role. The ME/CFS APPG has impressed me with what they have achieved so far, including debates and a good report. Meetings have to be fitted into busy schedules and are liable to change at short notice. I think Carol Monaghan has been fantastic.
     
    MeSci, CRG, MEMarge and 3 others like this.
  12. CRG

    CRG Senior Member (Voting Rights)

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    APPGs aside (and I echo Trish's comment on the ME/CFS APPG) the UK Parliament is relatively weak compared to the Government, this something that has accelerated over the last 40 years. Individual MPs have very little actual power and even the most dedicated will find progress difficult unless it accords with the ambitions of the Government of the day. The average UK MP has 70,000 electors and 100,000+ constituents, of who 300 may have ME/CFS, for the average MP we aren't going to be a major focus.
     
    bobbler, MEMarge, Arnie Pye and 2 others like this.
  13. NelliePledge

    NelliePledge Moderator Staff Member

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    Agreed MPs have little to no direct power to do anything. They do have much more influence than average UK subjects though. Otherwise we wouldn’t have had the lobbying ethics scandals in the past and more recently.

    Select Committees, only introduced in the 1970s, are fairly influential for example. The opportunity to lobby ministers and officials through formal meetings and informal discussions is very useful. A cause which has the support of effective NGOs and parliamentarians will register with Ministers and Departments Policy Officials as an issue much more than if individual members of the public are raising it.

    Agreed ME/CFS is only one topic in thousands that an MP will be asked to get involved with. That’s why it worthwhile individual PWME wherever possible engaging with their MP - all the people involved in the debates had been engaged by constituents.


    Obviously it isn’t worthwhile pursuing engagement with a disinterested MP once you’ve established where they stand.
     
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  14. Binkie4

    Binkie4 Senior Member (Voting Rights)

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  15. Amw66

    Amw66 Senior Member (Voting Rights)

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  16. Binkie4

    Binkie4 Senior Member (Voting Rights)

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    Bump to confirmed date for next APPG- Wednesday THIS WEEK, 10th May.
     
    bobbler, MEMarge, John Mac and 3 others like this.
  17. Binkie4

    Binkie4 Senior Member (Voting Rights)

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    Has anyone heard what happened at Wednesday's APPG? I am assuming it took place as planned.
     
  18. Binkie4

    Binkie4 Senior Member (Voting Rights)

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    I found this on Action for ME's fb page today. I had been checking on it regularly but only found it today although it says it has been up for several days.
    I wonder what " soon" means. From memory I think they are supposed to post within 28 days.

    upload_2023-5-15_23-34-54.jpeg
     
  19. Fainbrog

    Fainbrog Senior Member (Voting Rights)

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    When I asked about minutes after previous meetings, I got very short shrift from Carol Monaghan that they would be agreed at the next meeting and then published.

    ETA: I'd not be holding my breath..
     
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  20. Binkie4

    Binkie4 Senior Member (Voting Rights)

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    I've been in touch with Action for ME a couple of times. I was initially told that there would need to be a meeting to agree the minutes which would then be posted on the APPG website. I emphasised the importance of the info on the implementation of the new guidelines and treatment of the severely ill, to the ME community.

    Today there has been an addition sent by the Communications Officer
    "I wanted to inform you that we will be sharing the findings from the Freedom of Information request regarding the implementation of the revised NICE Guideline responded to by 106 ICB’s and NHS Trusts, as soon as possible. We are currently in negotiations with the press and media to try and secure coverage and awareness-raising with the public."

    I was glad to read this and that they are seeking publicity for the findings from the FOIs. Hopefully this will be released quickly.
     
    Hutan, Fainbrog, MeSci and 6 others like this.

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