MEAction: INVITE YOUR DOCTOR TO LEARN ABOUT ME – MEDICAL EDUCATION EVENT IN LONDON, 1st April 2020

Andy

Andy

Senior Member (Voting rights)
As part of #MEAction’s continued efforts to deliver medical education tools and events to healthcare professionals, #MEAction UK has organised a special education event on April 1 (6-9pm), titled “Diagnosis, Management and Care of ME”, hosted by The London School of Hygiene & Tropical Medicine (LSHTM).

This medical education event is free and aimed at consultants, as well as junior doctors, GPs, nurses and other healthcare professionals. CPD credits have been applied for and the session will include the screening of award-winning film Unrest and a discussion and Q&A with Mrs Caroline Kingdon, RN, MSc, David Tuller, DrPH, Dr Nigel Speight and Dr William Weir. Individual case studies will be part of the panel to share their experiences.

We are encouraging you to invite your consultant and/or other healthcare professionals to this medical education event so they learn more about myalgic encephalomyelitis. The event will cover: the range of presentation of ME symptoms, the latest developments in research and management of ME as well as understanding how to provide effective care and management advice. The session will also cover paediatric management and care.
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https://www.meaction.net/2020/03/04...n-about-me-medical-education-event-in-london/
 
At risk of causing dissent, I would like to suggest that UK based events like this would be better served by showing a UK based film or part of film like Voices from the Shadows. I think Unrest can be quite a confusing watch, and to me feels 'very American' despite having some UK and other people featured briefly. It comes across as a very personal story not necessarily representative of people with ME. I'm not sure how much doctors would actually learn from Unrest compared to some other resources.
 
Thanks for your feedback @Andy and @Trish !! Taken into account. With regards to Unrest feeling "very American" I do think that the film helped (and continues to do) a lot back in the UK and remains a great learning resource. That paired with UK experts plus David Tuller in the panel, should be able to add all other views. We have 3 hours so we will do our best with the time available! Duly noted about other films and pieces that could be added! This is our first experience of this sort in the UK so anything you can do to amplify these efforts and get this screening noted by consultants, doctors, etc., great! If in future you want to add more thoughts or feedback to the med-ed#MEAction UK roadmap, feel free to email uk@meaction.net. I am not so great at keeping in touch here, but I do try my best :) I feel this is an important event that if we can all help to amplify, will help with attendance and hence healthcare professionals' understanding of ME.

Cheers!
 
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I think there are several problems here. I would be happy to communicate further by personal conversation but I would just flag up here that;

1. With the coronavirus epidemic I doubt anyone will come or indeed should come. People need to stop attending public events. The school my daughter teaches at lost two members of staff to self-isolation yesterday simply for attending a gathering. Within a week or so people are going to face the reality of our situation in London.

2. I very much doubt that any NHS consultants would attend an event of this sort anyway. Those who are familiar with ME/CFS will already have formed a view, that Unrest will not change. Those who do not deal with ME/CFS are too busy. If anyone attends it is likely to be fringe private practitioners hoping to pick up some tips for their practice.

I wonder if anyone has researched the likely audience? I just don't think people will come.
 
For medical education I would prefer charities put together, on collaboration with scientists and expert clinicians, a CPD accredited online learning module on ME for doctors, that is scientifically balanced and credible. This would be much more accessible and useful to doctors who are very busy, in my opinion, and would have a much greater impact.
 
MerryB said:
For medical education I would prefer charities put together, on collaboration with scientists and expert clinicians, a CPD accredited online learning module on ME for doctors, that is scientifically balanced and credible. This would be much more accessible and useful to doctors who are very busy, in my opinion, and would have a much greater impact.
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Yes something for GPs is what’s needed.
 
EspeMor said:
With regards to Unrest feeling "very American" I do think that the film helped (and continues to do) a lot back in the UK and remains a great learning resource.
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Presumably you are not showing the entire film(?)

I also think that Voices from the Shadows would be a better choice,(not least because Dr Speight features in it).

and also the short videos they have since done which are intended for this very purpose.

see:
https://www.s4me.info/threads/dialogues-for-a-neglected-illness-–-a-new-me-cfs-project-awarded-wellcome-funding-first-2-videos-released-sept-2019.6186/page-2#post-203931

http://voicesfromtheshadowsfilm.co....a-new-mecfs-project-awarded-wellcome-funding/
 
Andy said:
I know that this will be a hot topic but I wonder whether there will be any discussion of Jen's CCI diagnosis and surgery?
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I know... I think Jen's film was great in many ways, the level of public engagement, and presenting the human stories behind the moniker ME. But, taken as a source of reference information, then learning of the subsequent CCI diagnosis and remission with surgery, truly complicates matters. Does it confound the message new minds would take away after watching Unrest? Probably, yes - the danger is that viewers who feel invested in ME after watching the film, then subsequently learn of the twist in the tale could feel betrayed, or at least somewhat bewildered, and liable to disengage. New information presented to people needs to be better at providing a map or some certain reference points they can trust.

If you look back at the TED talk, much of it remains valid and I still think Jen is a brilliant communicator on behalf of marginalised patient communities, but what is the message now so far as ME/CFS goes?
 
Jonathan Edwards said:
I think there are several problems here. I would be happy to communicate further by personal conversation but I would just flag up here that;

1. With the coronavirus epidemic I doubt anyone will come or indeed should come. People need to stop attending public events. The school my daughter teaches at lost two members of staff to self-isolation yesterday simply for attending a gathering. Within a week or so people are going to face the reality of our situation in London.

2. I very much doubt that any NHS consultants would attend an event of this sort anyway. Those who are familiar with ME/CFS will already have formed a view, that Unrest will not change. Those who do not deal with ME/CFS are too busy. If anyone attends it is likely to be fringe private practitioners hoping to pick up some tips for their practice.

I wonder if anyone has researched the likely audience? I just don't think people will come.
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I agree with all of this. I think it would be better at this stage to recongise the problems and cancel.

I really appreciate all the effort going into organising this, but I think much more careful thought needs to go into the best use of doctors' time in terms of medical education. These days this largely probably means online and text, or talks at conferences where lots of doctors will be attending anyway, like the sessions that have been run at the RCGP conferences, rather than one off events.

Edit: And I agree that the materials being produced by the Voices from the Shadows team, Dialogues for a neglected illness, are a far more appropriate resource than Unrest for medical education in the UK.
 
MerryB said:
For medical education I would prefer charities put together, on collaboration with scientists and expert clinicians, a CPD accredited online learning module on ME for doctors, that is scientifically balanced and credible. This would be much more accessible and useful to doctors who are very busy, in my opinion, and would have a much greater impact.
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I couldn't agree with this more.

Also, couldn't attendees interested in unrest just watch it on netflix from the comfort of their own home? So perhaps you could just mention and/or play a clip without having to show the whole thing. Although I second Trish's opinion that Voices from the Shadows would be more relevant in a UK context.
 
A while ago there was an online talk for one hour which counted for CPD points on POTS and ME.

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I shared it with the practice manager at my local GP surgery. He said that:
“the very nature of general practice means my GP's don't have resources or time to become familiar with conditions that should be dealt with secondary care specialists“

I Suggested that they need to be able to recognise things in order to know when and who to refer to! I got no reply.

so while I agree that doctors probably will not attend the three hour event in great numbers, even attempts to make things more accessible, it’s a struggle to get engagement.
 
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