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

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bobbler

Senior Member (Voting Rights)
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
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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)
 
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
 
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?
 
bobbler said:
Severe and Very Severe ME
Jaime Seltzer, Scientific Director, MEAction Network, USA #MEAction
Click to expand...
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.

bobbler said:
Current and emerging research
Dr David Putrino, Director of Rehabilitation Innovation, Mount Sinai, New York City
Click to expand...
adn this could have been covered by, perhaps, someone from ME Research UK and/or a UK based LC equivalent?
 
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
 
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
 
MEMarge said:
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
Click to expand...
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
 
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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