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UK: Physios for ME

Discussion in 'News from organisations' started by PhysiosforME, May 16, 2020.

  1. PhysiosforME

    PhysiosforME Senior Member (Voting Rights)

    Messages:
    296
    Thank you @Andy for sharing the news about our student podcast and our poster success.

    Not sure which I am most excited about - the physio students were amazing with their questions and there was a lot of positive feedback on twitter which gives me hope for the future!

    Plus getting two posters at the world congress is also very exciting - it was supposed to be in Dubai but is now online!

    And then they say good things come in threes, found out today that the Royal College of Paediatrics and Child Health have taken down their elearning module which was totally based on the deconditioning theory. I messaged them and got a very standoff response saying they would update in April when the new NICE guidance was available but they seem to have removed it already! Taking that as success https://twitter.com/user/status/1353290364216553479
     
    mango, JaneL, ahimsa and 23 others like this.
  2. Tia

    Tia Senior Member (Voting Rights)

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    Wow, so much good work you're doing! Thank you!
     
    Forestvon, alktipping, Kitty and 12 others like this.
  3. obeat

    obeat Senior Member (Voting Rights)

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    A comment from a GP after reading @Jonathan Edwards testimony to NICE

    "I’m pondering what immense additional suffering has been added to the burden of sufferers by the approach of the health care world.
    A gaping hole, and worse-wrong teaching, for medical schools to start to address."
     
  4. NelliePledge

    NelliePledge Moderator Staff Member

    Messages:
    13,145
    Location:
    UK West Midlands
    Where was that comment made?
     
    Michelle, alktipping, Kitty and 2 others like this.
  5. PhysiosforME

    PhysiosforME Senior Member (Voting Rights)

    Messages:
    296
    This week we had our monthly catch up - our focus for the next couple of months is preparing for the publication of the NICE guidance to make sure we have as much information to support physios with their implementation. We also caught up with Long Covid Physio - it's great having them as an ally who can take on the long covid challenges leaving us to be able to focus on ME.

    Plus we need to produce our posters for world congress - so lots going on behind the scenes
     
    alktipping, Kitty, MEMarge and 18 others like this.
  6. Daisymay

    Daisymay Senior Member (Voting Rights)

    Messages:
    682
    Thank you so very much for all your work!

    Will you be including information on consent, to ensure they are aware it is their legal obligation to ensure patients are fully informed of any material risks etc etc?

    I bring this up as a way to protect patients from anyone who may either want to stick to the status quo (CBT/GET, patients wrongly thinking they are ill etc) in spite of the new guidelines or for any physio who may be pressurised by superiors to stick to CBT/GET and variations against their better judgement.
     
  7. PhysiosforME

    PhysiosforME Senior Member (Voting Rights)

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    296
    Good point - thank you. adding it to the list
     
  8. Daisymay

    Daisymay Senior Member (Voting Rights)

    Messages:
    682
    Thanks, and if I may add, if you are in touch with Forward ME, any other ME charities and MPs could you please bring the issue of consent up as I think ensuring fully informed consent could be a really pivotal tool to enforcing the new guidelines and the re-education of medics happens as soon as possible.

    The Royal Colleges and professional bodies need to quickly be made aware of the new guidelines and the legal implications for their members (or even their institutions) if their members fail to adhere to the new guidelines (through ignorance or design) and therefore fail to fully inform patients.

    Edit: sorry I hope you get the gist, not very coherent!
     
  9. Andy

    Andy Committee Member

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    21,810
    Location:
    Hampshire, UK
    Physios for ME and Long Covid Physio
    https://www.physiosforme.com/post/p...-covid-physio?postId=60210fa29d41ed00183804cd
     
  10. PhysiosforME

    PhysiosforME Senior Member (Voting Rights)

    Messages:
    296
  11. Barry

    Barry Senior Member (Voting Rights)

    Messages:
    8,385
  12. PhysiosforME

    PhysiosforME Senior Member (Voting Rights)

    Messages:
    296
  13. PhysiosforME

    PhysiosforME Senior Member (Voting Rights)

    Messages:
    296
  14. Andy

    Andy Committee Member

    Messages:
    21,810
    Location:
    Hampshire, UK
  15. Trish

    Trish Moderator Staff Member

    Messages:
    51,883
    Location:
    UK
    MSEsperanza, Kitty, Binkie4 and 5 others like this.
  16. Andy

    Andy Committee Member

    Messages:
    21,810
    Location:
    Hampshire, UK
  17. Andy

    Andy Committee Member

    Messages:
    21,810
    Location:
    Hampshire, UK
  18. MSEsperanza

    MSEsperanza Senior Member (Voting Rights)

    Messages:
    2,855
    Location:
    betwixt and between
    Barry, Midnattsol, Kalliope and 4 others like this.
  19. PhysiosforME

    PhysiosforME Senior Member (Voting Rights)

    Messages:
    296
    Thanks for sharing the post about our book news

    We deliberated long and hard before making the decision to go ahead but decided it was too good an opportunity to help achieve our aim of educating physiotherapists about ME.

    We are aiming to provide information about the known pathophysiology of ME and to discuss how it is directly relevant to a physiotherapist's clinical practice.

    The publisher is wanting to branch out into more academic/medical text books and we're one of their first avenues into this. And just to reassure you that we have control on content.
     
    Daisybell, Kirsten, Sean and 14 others like this.
  20. Trish

    Trish Moderator Staff Member

    Messages:
    51,883
    Location:
    UK
    Given how little is known, I'm sure you will be careful not to overstate it. As far as I can see from all the research we've been following, the 2 day CPET seems to be all we can be fairly sure shows something.

    Thank you for your work. Good luck with the book.
     

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