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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.

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Page 17 of 17
  1. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    Interesting to see 'DecodeME results' billed for May 14th!!
    It might happen.
     
    Jonathan Edwards, Apr 24, 2025 at 9:17 PM
    #321
    oldtimer, Fizzlou, MeSci and 15 others like this.
  2. NelliePledge

    NelliePledge Moderator Staff Member

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    We know the APPG on ME is planning to do a report on severe/very severe this year. Probably a good question for this meeting would be to ask whether people with severe/very severe Long Covid with ME type symptoms are experiencing the same difficulties accessing care and nutrition as people with ME/CFS. What is being done within the NHS to prevent further deaths.
     
    NelliePledge, Apr 24, 2025 at 9:47 PM
    #322
    oldtimer, MEMarge, MeSci and 10 others like this.
  3. Robert 1973

    Robert 1973 Senior Member (Voting Rights)

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    @Andy Do you know if the expectation is that some results will be published by 14 May, or Chris intending to talk to the APPG about the results prior publication?
     
    Robert 1973, Apr 25, 2025 at 1:17 AM
    #323
    Binkie4, hotblack, Peter Trewhitt and 1 other person like this.
  4. Andy

    Andy Retired committee member

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    No, I don't expect results, complete or otherwise, to be published by then. I'm afraid I don't know what Chris may or may not intend to say.
     
    Andy, Apr 25, 2025 at 5:31 AM
    #324
    Nightsong, oldtimer, MEMarge and 7 others like this.
  5. MEMarge

    MEMarge Senior Member (Voting Rights)

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    MEMarge, Apr 25, 2025 at 4:36 PM
    #325
    Sean, oldtimer and Peter Trewhitt like this.
  6. Binkie4

    Binkie4 Senior Member (Voting Rights)

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    Wrote to my MP yesterday after learning of the date of the next APPG meeting asking him to attend.
    I based the letter on the template- first time I've done that but I was exhausted- altering or adding my own information in several places. It did make it a lot easier than starting from scratch. I added that with 3 weeks notice, I hoped his diary could accommodate this.

    Was amazed to open my first email this morning to find it was from a Parliamentary assistant saying MP would endeavour to attend subject to any conflicting Parliamentary business- as much a yes as could be expected I think. He's new to Parliament so hope he may get involved in ME. I also hope the 14th May meeting gets a good attendance and that the APPG gets fully involved.
     
    Last edited: Apr 25, 2025 at 6:51 PM
    Binkie4, Apr 25, 2025 at 6:06 PM
    #326
    MeSci, Nightsong, Trish and 6 others like this.
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