UK CFS/M.E. Research Collaborative [CMRC] conference, 10th and 11th March 2020

Andy

Andy

Senior Member (Voting rights)
Early bird tickets are now available for the 2020 UK CFS/M.E. Research Collaborative conference, which takes place in Bristol on Tuesday 10 and Wednesday 11 March.

These tickets are for CMRC members only, if you are not a member but would like to join please see the information below. Early bird booking is open until Monday 18 November at 5pm and registration fees begin at £250.

This is a fantastic opportunity for researchers, people affected by M.E. and clinicians to learn more about the latest published and unpublished research, meet potential collaborators and contribute to future developments.
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https://www.actionforme.org.uk/news/early-bird-registration-now-open-cmrc-2020/

Event ticket page, https://www.eventbee.com/v/uk-cfsme...ience-conference/event?eid=105083142#/tickets
 
CMRC conference: Physios for M.E. & medical education
A representative from Physios for M.E. has joined the Medical Education Working Group as part of the UK CFS/M.E. Research Collaborative (CMRC), which aims to identify the most effective way to engage with doctors, nurses, physios and other health professionals to improve understanding of and education about M.E. The group's Chair, Dr Nina Muirhead, will present at the CMRC's sixth annual science conference in Bristol, Tuesday 10 and Wednesday 11 March; all are welcome.

Physios for M.E. is an informal professional collective, aiming to "educate and start conversation to stimulate new ideas in line with a biomedical approach so we can improve physiotherapy treatment for people with M.E."
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https://www.actionforme.org.uk/news/cmrc-conference-physios-for-me-and-medical-education/

@PhysiosforME
 
Speakers listed on the programme, https://www.actionforme.org.uk/uploads/images/2020/01/CMRC-programme-070120.pdf, at time of posting.

  • Prof Chris Ponting, University of Edinburgh
  • Kristian Spreckley, NIHR National Biosample Centre
  • Prof Alain Moreau, Université de Montréal / CHU Sainte-Justine
  • Dr Sadie Whittaker, Solve ME
  • Adjunct Associate Professor Dr Heidi Nicholl, Emerge Australia
  • Dr Nina Muirhead
  • Dr Dan Peterson, private practice
  • Dr Karla Soares-Weiser, Cochrane Library
  • Dr Karl Morten, University of Oxford
  • Dr Jackie Cliff, London School of Hygiene & Tropical Medicine
  • Dr Jonathan Kerr, Norfolk & Norwich University Hospital
  • Prof Frances Williams, King’s College London
  • Dr Michael VanElzakker, Massachusetts General Hospital/ Harvard Medical School
  • Prof Neil Harrison, Cardiff University
  • Dr Natalie Williams, Versus Arthritis
 
NelliePledge said:
I hope some BACME people will be attending they would benefit from having their eyes opened to the big picture.
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I wouldn't hope for much there... the CMRC have invited the PACE trial's Gabrielle Murphy to share her expertise on 'what works':

Workshop 1What works: evidence from research and from clinical practice: Dr Dan Peterson, Dr Sue Pemberton, Joan Crawford and Dr Gabrielle Murphy
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https://www.actionforme.org.uk/uploads/images/2020/02/CMRC_2020_programme_current.pdf
 
Andy said:
I've just had confirmation that Karla Soares-Weiser will now not be in attendance; Richard Morley, Cochrane Consumer Engagement Officer, and Rachel Marshall, Senior Editorial Officer, Cochrane, will now be presenting "Cochrane reviews, protocols and plans"
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Rachel Marshall is the person who has been dealing (since January) with my request (made in October) to link from the amended 2 October review to Karla's statement about it. After 4 months, there is now a link in a published "note" on the review which necessitated republishing the whole review (not what I asked for). This means that they have now removed the flag that the amendment published on 2 October changed the conclusions of the review. Because the addition of the note and republication did not change the conclusions of 2 October version. Clever Cochrane. :-/
 
Caroline Struthers said:
Rachel Marshall is the person who has been dealing (since January) with my request (made in October) to link from the amended 2 October review to Karla's statement about it. After 4 months, there is now a link in a published "note" on the review which necessitated republishing the whole review (not what I asked for). This means that they have now removed the flag that the amendment published on 2 October changed the conclusions of the review. Because the addition of the note and republication did not change the conclusions of 2 October version. Clever Cochrane. :-/
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There is now a confusing dog's dinner on the information page What's New and History https://www.cochranelibrary.com/cdsr/doi/10.1002/14651858.CD003200.pub8/information which I think vaguely represents reality. Shall I ask them to put a link to the latest statement about the independent review group led by Hilda Bastian?! Not sure I can face it...they have worn me down.

There is a perfect way (see below) to include links to "related content". They have refused to use this vehicle for the statements and have not told me why. It's very annoying. See the link which is on the previous version (2017) version of the review and links to the (now removed) "Cochrane Clinical Answer" which stated that exercise is effective and that PACE is a "well-conducted trial"!
upload_2020-2-14_10-44-54.png
 
MSEsperanza said:
changed now to: Fiona Wright

https://www.actionforme.org.uk/uploads/images/2020/02/CMRC_2020_programme_V8_18.02.20.pdf
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She is an occupational therapist and was involved in AfMEs SEE ME Employment SUpport Project
Occupational Therapist, Fiona Wright, said “We were thrilled to find out that we had been shortlisted in the Best Quality Research or Innovation category of the Exceptional Healthcare Awards. The team here has worked very hard over the years to provide high quality support to people with Chronic Fatigue Syndrome (M.E.) and this was a great acknowledgment of that. The pilot employment project we have been working on with Action for M.E. (SEE M.E.) was the result of close collaboration with our clinic, service users, the charity and external funders. The results have been excellent with 73% of people taking part achieving their employment related goals. By doing this work within the clinic we have maximised the effectiveness of the treatment we can offer.”
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https://www.nbt.nhs.uk/our-services...-syndromeme-service/see-me-employment-support
 
Trish said:
Will it be videod and available at the time or afterwards?
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From https://www.eventbee.com/v/uk-cfsme...ience-conference/event?eid=105083142#/tickets
Filming: With speakers' permission, we aim to film each presentation to broadcast live and/or upload as a recording following the conference. Please note that, due to the presentation of unpublished data, some speakers decline to be filmed. Details of livestreaming and/or filming will be made available nearer the time at https://www.actionforme.org.uk/research/cmrc/
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I don't think they will be livestreamed now, they'll be recorded and released afterwards.
 
In case anybody is remotely interested, I've now decided not to attend, due to the coronavirus situation. My mother-in-law, who is 80 and has several health conditions already, lives with my wife and I, and I don't want to increase the possibility of her being exposed to the virus anymore than I have to.
 
Andy said:
No, us attendees have had an email to confirm it's still going ahead.
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I was about to ask if this is a good or a bad thing.

I thought the virus could provide an opportunity to think about how to improve accessibility to conferences. I realize that the informal part of conferences often is more important and also more fun -- for those who are able to attend in (physical) person.

But couldn't there be mixed forms of those events? There are 'no isolation robots' for kids, why not similar tools for disabled adults?

Even though many severely affected pwME still couldn't take part due to cognitive issues, it still would be a lot more inclusive (and ecofriendly). It would even be possible to be present at the informal parts, break-time talks and dinner conversations.
 
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