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UK: Forward ME charities at the RCGP conferences, 2018, 2019

Discussion in 'General ME/CFS News' started by MEMarge, Sep 11, 2018.

  1. MEMarge

    MEMarge Senior Member (Voting Rights)

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    The stand will be manned or womanned from 4-6 Oct.

    Workshops are on 4 Oct.

    "Dr Charles Shepherd, Hon. Medical Adviser, ME Association.

    Following a meeting last year with Professor Kamila Hawthorne, Vice Chair Professional Development at the Royal College of General Practitioners (RCGP), it was agreed that the charities who are members of Forward ME would help the College improve GP education on both diagnosis and management of ME/CFS.

    This has included the preparation of a review article covering diagnosis and management for the journal ‘GP Frontline’ (currently awaiting publication), and a Workshop on ME/CFS at the RCGP annual conference in Glasgow – taking place from 4th to 6th October 2018.

    The ME/CFS workshop will be on Thursday 4th October at 4.00pm and will consist of three presentations:
    1. Early and Accurate Diagnosis of ME/CFS – Dr Charles Shepherd, Hon. Medical Adviser, ME Association.
    2. Management of adults with ME/CFS – Dr Gregor Purdie, semi-retired GP, NHS Dumfries and Galloway, and Medical Adviser to Action for ME.
    3. Diagnosis and Management of Children and Adolescents with ME/CFS – Dr Nigel Speight, Consultant Paediatrician and Hon. Paediatric Adviser to the ME Association and Tymes Trust.
    All three presentations will also refer to issues relating to people with severe ME/CFS.

    They will be followed by questions and discussion. We do not know if the workshop session will be recorded but have made enquiries to this effect.

    The Forward ME group will also be hosting a stand in the conference exhibition centre for the full three days and there will be literature available from all the charity members including the 2018 clinical and research guide from the ME Association.
    [​IMG]
     
    Last edited: Sep 11, 2018
    Luther Blissett, Inara, Joh and 12 others like this.
  2. Hutan

    Hutan Moderator Staff Member

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    Excellent.

    Perhaps the article could be forwarded to Red Whale to inform their GP update seminars?
    @Russell Fleming
     
  3. Esther12

    Esther12 Senior Member (Voting Rights)

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    There are so many things I want to criticise the RCGPs for. So many.

    METRIC might be a good place to start:

    https://hansard.parliament.uk/Commo...4E35-A83B-49FEF0D6074F/METreatmentAndResearch

    From all I saw of METRIC it looks like a good explanation for why so many ME/CFS patients are still unhappy with the way they're treated by their doctors:

    http://elearning.rcgp.org.uk/course/info.php?id=93

    PS: I am assuming any stand will be used as an outpost for all out attack on the RCGP... it could be that this is why I'm not offered many stands. But I should be!
     
    Last edited: Sep 12, 2018
  4. NelliePledge

    NelliePledge Moderator Staff Member

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    Not sure what AFME will be giving out at least MEA have the Purple Book which hopefully they will be.
     
  5. MEMarge

    MEMarge Senior Member (Voting Rights)

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    Yes, purple books will definitely be available, probably a few special editions of the JHP on PACE.
    It would have cost extra to get our very own @Graham to sign them!
     
    Last edited: Sep 12, 2018
  6. Graham

    Graham Senior Member (Voting Rights)

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    Perhaps we could have an S4me stand and hand out the green JHP books, with me, Tom, Keith, Carolyn, Jonathan, and David all offering to sign them (for a small phee of course). Perhaps, instead of being known as the PACE trial issue, it should be called the S4ME issue.
     
  7. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    From AfME website:
    "
    Forward M.E. charities, including Action for M.E., will host an exhibition stand and workshop at next month’s Royal College of General Practitioners (RCGP) conference in Glasgow – please encourage your GP to come and say hello if they are attending.

    Stand number E42 will be manned by staff and volunteers from the Action for M.E., ME Association, The 25% M.E. Group and #MEAction on Thursday 4 and Friday 6 October (the exhibition runs for two of the conference’s three days only), who will share key resources from each Forward M.E. member organisation, with the aim of increasing knowledge and understanding of M.E. among GP delegates. We will be sharing our Newly diagnosed with M.E. booklet, aimed at healthcare professionals and people with M.E. who would like more information and support about the diagnosis, symptoms and management of M.E.

    At 4pm on the Thursday, delegates have the option to attend a Forward M.E. workshop, presented by:
    Dr Charles Shepherd, Hon. Medical Advisor, ME Association, giving an overview of early and accurate diagnosis of M.E.

    ·Dr Gregor Purdie, Medical Advisor, Action for M.E., on management of adults with M.E.

    ·Dr Nigel Speight, Hon. Paediatric Adviser to the ME Association and Tymes Trust, on diagnosis and management of children and adolescents with M.E.

    We currently have 230 GP delegates book in to attend our workshop on M.E."

    The 'Newly Diagnosed with M.E. booklet' is from 2015 and, given what has been happening since then, is out-of-date.

    I hope it is revised before being handed out to all these GP delegates.
     
    Last edited: Sep 26, 2018
    Amw66, adambeyoncelowe, Inara and 8 others like this.
  8. NelliePledge

    NelliePledge Moderator Staff Member

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    Agree with @Sly Saint concern about @Action for M.E. newly diagnosed booklet being 3 years out of date shouldn’t be given out without an overhaull. MEA update the purple book annually so hopefully GPs will get and read it

    The fact that 230 GPs are interested in hearing from ME organisations is a positive start on tackling education
     
  9. Suffolkres

    Suffolkres Senior Member (Voting Rights)

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    I have some inclining of the logistics at the event_ a 2x2 meter enclosure shared by 7 charities with many constraints on what can and can't be done and by whom..... Plus possiblity of a £180 fee for admission ...
     
  10. MeSci

    MeSci Senior Member (Voting Rights)

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    Source: Action for ME

    Date: October 4, 2018

    URL:
    https://www.actionforme.org.uk/news/highlighting-me-at-rcgp-conference-today-and-friday/

    Highlighting M.E. at RCGP conference today and Friday
    -----------------------------------------------------

    Dr Gregor Purdie, Medical Advisor, Action for M.E., will join two other clinicians to lead Forward M.E.'s workshop at the RCGP conference in Glasgow today.

    Chaired by Prof Kamila Hawthorne, Vice Chair (Professional Development), Royal College of GPs (RCGP), the workshop will cover early, accurate diagnosis and appropriate management of M.E. in children, young people and adults.

    Dr Purdie, a former GP based in Dumfries and Galloway, and co-author of the Scottish Good Practice Statement on ME/CFS, will be joined by Dr Charles Shepherd, Honorary Medical Advisor, ME Association; and Dr Nigel Speight, Honorary Paediatric Adviser to the ME Association and Tymes Trust.

    https://www.scot.nhs.uk/scottish-good-practice-statement-on-me-cfs/

    As well as the workshop, Forward ME has a stand in the exhibition centre sharing key resources from each member charity. Clare Ogden, Head of Communications and Engagement, Action for M.E., will be there tomorrow to speak with GP delegates - around 1,500 are expected to attend the conference - and share our Newly diagnosed with M.E. resource.

    Also manning the stand today and tomorrow are staff, Trustees and volunteers from the M.E. Association, the 25% M.E. Group and #MEAction Scotland.

    We are enormously grateful to Carol Monaghan MP and her team, for their kind support in setting up the stand and ensuring resources from each Forward ME charity are delivered to the venue on time.

    You can follow the conference on Twitter @RCGPAC and please do encourage your own GP to come along and say hello if they are attending - we're on stand E42, from 8am to 4.30pm, tomorrow and Friday.

    http://twitter.com/RCGPAC
     
    ahimsa, DokaGirl, ukxmrv and 9 others like this.
  11. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    2019 conference

    https://www.actionforme.org.uk/uplo...ward-ME-briefing-RCGP-conference-Oct-2019.pdf


    Attending the RCGP annual conference as part of Forward-ME
    October 24, 2019
    https://www.actionforme.org.uk/news/attending-the-rcgp-annual-conference/
     
    Last edited: Oct 25, 2019
    It's M.E. Linda, rvallee and MEMarge like this.
  12. Cinders66

    Cinders66 Senior Member (Voting Rights)

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    I just saw an advert regarding GP training “Spotlight project” day in Cambridge on POTS , LYME etc which is of mild interest given the concerns some have about both conditions .

    The RCGP has also produced a free on-line e-learning module on Lyme disease: http://elearning.rcgp.org.uk/course/info.php?popup=0&id=164

    obviously I can’t access it but it was notable that they emphasised that the module had been drawn up with the charity Lyme disease action. Which is in contrast with their approach to ME material etc where charities have been excluded and then establishment stuff imposed onto the community. The Lyme charity might not be great but I thought that it Showed the way pwCFS are being “managed” differently. If the rcgp are starting to allow charity input that’s great but until recently everyone “our side” were not included.

    i hope that the CFS workshop at the rcgp conference is recorded because it would be interesting to see current GP reception and attitude
     
  13. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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  14. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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