The Cambridge Lectures: Demystifying ME/CFS, March 2020, deferred to January 2021 on Zoom

https://www.meassociation.org.uk/2020/03/the-cambridge-lectures-demystifying-me-cfs-04-march-2020/

 

This looks good!

 

Yes, the Covid-19 situation will have deteriorated quite significantly even by the 19th I suspect. Would not be surprised to see over a thousand cases in the UK by then. The odds are the event would have to be cancelled at short notice anyway I would think.

 

They can't know for show that it will need to be cancelled at this point so surely they've still got to publicise and then if it gets cancelled they've still got a list of people signed up and they can either look into alternative ways of presenting or postpone? I guess it would be good to research alternative options for presenting, obviously there's skype or zoom and I've heard of ivent, a company who organise virtual events, but don't know if they're too expensive for relatively small events.

 

There is also the other side of the coin though - social responsibility. The point will very soon come - may already be here in fact - where large gatherings might well facilitate faster spreading of the virus, at the very time when slowing down its spread is crucial. We are not going to stop it spreading, but the better it can be slowed, and the earlier it can be slowed, the better the chances for UK infrastructure to ramp up to meet this very significant challenge.

 

Code:

https://www.facebook.com/meassociation/posts/2871374952920144

 

Merged thread

Demystifying ME/CFS, featuring Drs Charles Shepherd, Nina Muirhead and Caroline Kingdon RN, Thursday, 14 January 2021 at 18:00

Healthcare professionals, healthcare students and patients are invited to join Cambridge GP Society for a free online event on Thursday 14 January 2021, aiming to demystify myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).

Featuring expert speakers Dr Charles Shepherd, Dr Nina Muirhead and Caroline Kingdon RN, this event will dispel common misconceptions about ME/CFS, highlight current research into its aetiology, and improve understanding of how to care for patients with this widely misunderstood condition. The emerging link between long COVID and ME/CFS will also be discussed.

Sign up here to receive the Zoom link and a pre-event questionnaire: https://forms.gle/Koa4gzV1ZBrvSP1b9. Certificates of attendance will be provided.

Code:

https://www.facebook.com/events/194840869028114/

https://twitter.com/user/status/1346131462031101953


https://twitter.com/user/status/1346131465751425025


Looks like something very similar was held last year, The Cambridge Lectures: Demystifying ME/CFS, Cambridge, 19th March 2020

 

A post from the Cambridge GP Society on the Facebook event page.

 

I watched the programme live- found it interesting but unfortunately couldn't manage the length of the session. I reached my limit about 1hour 10 mins in and had to leave. By 6pm I am tired and needing to pace rigorously. I imagine the event was primarily for GPs so this may not be an issue for them.

I was disappointed that I left before Caroline Kingdon finished speaking nor was I present for the advertised Q and A. Mr B carried on listening and was impressed. I found all the speakers good and used personal stories which made it accessible.

I was interested that so many participants were from outside UK - Norway, France, Germany, Canada and other countries. There seemed to be significant worldwide interest.

Thanks for the link @Andy. May try to finish watching event.

eta: I did complete the pre event questionnaire which seemed to be focussed at those who might have misguided preconceptions about the illness. From comments on the screen, it seemed that audience contained a lot of patients.

 

How do I watch the video?

 

assuming you can see something directly above this line of text, click on it twice to start watching it. Otherwise copy and paste the link below

Code:

https://drive.google.com/file/d/1mMcVAf8skLocTt7SBkgHSiJgpYkCj3Ww/view

 

@1:01:14 It says ME has a prevalence of 0.4% which works out to be about 260,000 sufferers in the UK. That number seems way too high, see: https://www.s4me.info/threads/non-e...-psychological-me-research.18266/#post-311827.

 

Emphasises why we need accurate assessment criteria and follow up.

As it persists for most and people live longer it is important that epidemiology gets this right

 

Brief MEA writeup, https://meassociation.org.uk/2021/0...udents-let-us-unpack-the-mysteries-of-me-cfs/

 

All good advice especially emphasising PEM and core symptoms, explaining objections to GET and GET centered CBT.

Well presented and to the point, heartening and healing, quite long, I had to take several breaks but worth watching.

It strikes me at this time, that the aftermath of COVID-19 may create a need for information of this kind among GPs. I bet they would be grateful for a condensed version pointing them in the right direction for treating ME/CFS patients.

I wonder if a succinct online presentation/booklet using the helpful graphics shown could be put together to give them a quick and easy guide which reiterates clearly the message of PEM etc in relation to ME/CFS, while we work out whether longcovid can be officially considered a form of ME/CFS.

If that was ready, it could then be offered around the place when the new NICE guidelines come into effect for ME/CFS at the very least. If longcovid does qualify as an ME/CFS subtype then it would be ready to help them when helping their longcovid patients.

I dont know if they have already got plans for something like that but I just thought it was worth mentioning.