Webinar 4th June 2024: Royal College of Physicians Edinburgh RCPE: ME/CFS and Long COVID

Discussion in 'General ME/CFS news' started by bobbler, Apr 23, 2024.

  1. bobbler

    bobbler Senior Member (Voting Rights)

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    I've seen this mentioned on social media so thought I'd link to it here. I think it looks good from the speakers.


    https://events.rcpe.ac.uk/rcpe-mecfs-and-long-covid
    • Events
    Book Now
    TUESDAY
    04 June
    2024
    RCPE: ME/CFS and Long COVID

    Please note that this event will be delivered online, and access information will be emailed to all registered delegates the day before the event.

    The latest in our special edition series is focused on Myalgic Encephalomyelitis (ME)/Chronic Fatigue Syndrome (CFS) and Long Covid. These complex multi-system illnesses have increased in prevalence since the Covid-19 pandemic, and can be highly disabling, significantly impacting a person’s ability to work and function in daily life.

    During this webinar you will learn about the pathophysiology of ME/CFS and Long Covid, clinical presentation, making a diagnosis, and common associated conditions such as Postural Orthostatic Tachycardia Syndrome (POTS). You will also learn about up-to-date management strategies and treatments. You will hear from the patient perspective, a very important aspect in learning, understanding and managing these conditions. Levels of severity of ME/CFS will also be discussed, including the impact on nutrition and the use of supplemental nutrition. Finally you will hear about current and emerging research into both the understanding and management of ME/CFS and Long Covid.

    We would like to express our sincere thanks to Dr Marie-Claire Grounds and Dr Hannah Preston for their support in developing this event.

    This online event allows the opportunity for delegates to watch the presentations live, or at their convenience for up to 6 months following the original broadcast. Please note the presentations will be available to view on catch-up the second working day after the live event. Delegates can continue to register for catch-up access only after the live event has taken place.

    Delegates will have the opportunity to submit questions to the speakers which will be addressed live at the event taking place at 6.00pm – 8.30pm (BST)
     
  2. bobbler

    bobbler Senior Member (Voting Rights)

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    Programme:


    Improving our clinical understanding of infection-related chronic illness

    18.00
    Introduction & Welcome by
    Dr Kerri Baker, Dean of Education, Royal College of Physicians of Edinburgh

    18.05


    Co-Chairs: Dr Marie-Claire Grounds & Dr Hannah Preston

    Patient perspective
    Speaker Details - TBA

    18.15


    Overview - What is ME/CFS, brief pathophysiology, common symptoms, PEM and pacing
    Dr Nicola Clague-Baker, Physiotherapy Lecturer, School of Health Sciences, University of Liverpool
    & Ms Karen Leslie, Chartered Physiotherapist

    18.40


    POTS and Dysautonomia- what, tests, current treatments
    Dr Nicholas Gall, Consultant Cardiologist, King's College Hospital, London

    19.05


    Severe and Very Severe ME
    Jaime Seltzer, Scientific Director, MEAction Network, USA #MEAction

    19.30 Refreshment Break

    19.40


    Long Covid - What, how, who, impact
    Professor Danny Altmann, Professor of Immunology, Imperial College, London

    20.05


    Current and emerging research
    Dr David Putrino, Director of Rehabilitation Innovation, Mount Sinai, New York City

    20.30 Close & Thanks
     
  3. bobbler

    bobbler Senior Member (Voting Rights)

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    People's thoughts on whether there are any 'catches' I've missed?

    It feels like being able as a community to find ways to get as many people as possible - medics, HCPs, but maybe also others (I'd like to see us starting to get into education/schools etc for example as BPS hammered that one) - to be attending and getting educated by good, modern useful stuff

    SHould there be some sort of network that can have a badge for 'good things' vs bad? Or maybe not in that manner as I know for example the MEA links to articles for information then puts their thoughts etc.

    It would be really good if the 'goodies' and those who know a bit could start to band together to help pointing those who are either laypersons 'trying to help' (but often then getting swayed into thinking offering you mind stuff is being kind) and even newbie patients to 'find their way through the mire' of different things?
     
  4. Fainbrog

    Fainbrog Senior Member (Voting Rights)

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    That's a pretty stellar line-up imho
     
    Kitty, PhysiosforME, MEMarge and 8 others like this.
  5. rvallee

    rvallee Senior Member (Voting Rights)

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    From the names involved, looks pretty solid.
     
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  6. Andy

    Andy Committee Member

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    Personally, given that this is an event organised by a UK organisation, I would have preferred to see this topic covered by the 25% ME Group, who are both based in the UK and specifically focus on this group of patients.

    adn this could have been covered by, perhaps, someone from ME Research UK and/or a UK based LC equivalent?
     
    Kitty, bobbler, Amw66 and 4 others like this.
  7. MEMarge

    MEMarge Senior Member (Voting Rights)

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    I think this has been arranged by MEAction Scotland/UK, which probably explains why Jaime S is on the program.
     
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  8. NelliePledge

    NelliePledge Moderator Staff Member

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    Agreed @Andy at least do it as a collaboration the Drs need to understand there are UK organisations and researchers they can seek information and advice from
     
  9. Lou B Lou

    Lou B Lou Senior Member (Voting Rights)

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    RCPE webinar on #MECFS and #LongCovid


    https://twitter.com/user/status/1798047943418843479




    Tweet from KarenPhysioCoUK:

    'Presentation done

    Key points: PEM is NOT "fatigue after exertion"
    Pacing is NOT typical quota-contingent (goal driven) approach

    The seminar is still running and has some great speakers, very powerful start from Karima'
    .
     
    bobbler, Kitty, rvallee and 11 others like this.
  10. Trish

    Trish Moderator Staff Member

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    A pity it's only available to delegates.
     
    bobbler, Kitty, Simon M and 4 others like this.
  11. Sean

    Sean Moderator Staff Member

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    This.
     
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  12. MEMarge

    MEMarge Senior Member (Voting Rights)

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    I wonder if recordings will be available afterwards @PhysiosforME
     
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  13. Solstice

    Solstice Senior Member (Voting Rights)

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    Just a throwaway comment not particularly to do with this. I see webinars, inquiries etc. at a volume I don't think I've ever seen before. Am I wrong in that regard or is there really an uptick in these things?
     
    bobbler, Sean, Kitty and 6 others like this.
  14. PhysiosforME

    PhysiosforME Senior Member (Voting Rights)

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    HI there - you can still register and access the event for the next six months
     
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  15. PhysiosforME

    PhysiosforME Senior Member (Voting Rights)

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    I stepped in for Nikki as she had a family emergency. It seemed like a really positive event - the hosts are both medics who have long covid (they are on social media) and the RCP in Edinburgh said they hadn't seen as much engagement on slido (where people were asking questions during the event). As Physios for ME we are pretty chuffed as the president retweeted a picture of one of our slides with what we thought was a message of support for the event https://twitter.com/user/status/1798077236068876383
     
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  16. Trish

    Trish Moderator Staff Member

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    I had the impression it was only open to clinicians.
     
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  17. PhysiosforME

    PhysiosforME Senior Member (Voting Rights)

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    I've just checked the event info and it is targeted at clinicians. Not sure if you had to say when registering.

    There were apparently about 280 people registered so if that's really impressive it is only clinicians
     
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  18. MEMarge

    MEMarge Senior Member (Voting Rights)

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    Have been able to register, with my area of interest being medical education.

    I can access the webinar for £20.

    I'd certainly be interested in Danny Altmann's latest research.
    Am very familiar with Dr Gall and his work on POTS/orthostatic intolerance.
    Probably not much else is new or can't be accessed elsewhere.

    Not sure if I will sign up.

    Do you know who did the patient perspective slot @PhysiosforME

    Hope Nikki's family is OK
     
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  19. PhysiosforME

    PhysiosforME Senior Member (Voting Rights)

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    Hi there The patient perspective was a lady called Karima from ME Action Scotland I think (I was a bit anxious at that point as we were next on!)
    She was excellent - really thought provoking
    She also shared a video with lots of other people with ME which was also a hard but good watch
    Danny Altmann's talk was prerecorded as an FYI
     
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  20. Sean

    Sean Moderator Staff Member

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    Key points: PEM is NOT "fatigue after exertion"
    Pacing is NOT typical quota-contingent (goal driven) approach


    How is it that these relative latecomers to the game can get it so easily and quickly, and express it so succinctly and clearly, yet so many of the supposedly world leading CFS experts for decades seem completely incapable of it?

    Could the secret ingredient be that the latecomers simply listened to what patients were telling them?

    A little humility goes a long way in this world, especially in the face of the unknown.
     

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