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

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

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

 

To reflect the clear change in direction maybe time to change the name to MCRC or even better MERC?

 

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"

 

I wouldn't hope for much there... the CMRC have invited the PACE trial's Gabrielle Murphy to share her expertise on 'what works':

https://www.actionforme.org.uk/uploads/images/2020/02/CMRC_2020_programme_current.pdf

 

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. :-/

 

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"!

 

changed now to: Dr Dan Peterson, Fiona Wright, Dr Sue Pemberton, Dr Nina Muirhead

https://www.actionforme.org.uk/uploads/images/2020/02/CMRC_2020_programme_V8_18.02.20.pdf

 

She is an occupational therapist and was involved in AfMEs SEE ME Employment SUpport Project

https://www.nbt.nhs.uk/our-services...-syndromeme-service/see-me-employment-support

 

Considering Covid-19, are there any plans to transform the meeting into a video conference?

 

No, us attendees have had an email to confirm it's still going ahead.

 

From https://www.eventbee.com/v/uk-cfsme...ience-conference/event?eid=105083142#/tickets

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.

 

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.

 

"Speaker TBC" on 2nd day seems now to be:

https://twitter.com/user/status/1236044846726615040

Code:

https://twitter.com/BhupeshPrusty/status/1236044846726615040