MRC/NIHR DecodeME Showcase meeting online and in person Nov 6th

Adrian said:
Great.

It’s a shame that the MRC/NIHR didn't know to invite them.
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Yes, and it makes me wonder how many other people with relevant expertise might have been overlooked. I hope someone will raise this at the meeting. It should have been someone’s job to invite relevant people. It beggars belief that Jonathan wasn’t invited.

I wonder how many BPS proponents were invited and how many will be there.
 
Programme for tomorrow:

Agenda:

Registration and Refreshments from 10.00 to 10.45am
  • Chair: Louise Wood, Association of Medical Research Charities (AMRC)
Welcome and Introductions 10.45
  • Mary De Silva, Deputy Chief Scientific Adviser, Department of Health and Social Care
Session 1: 10.50-12.40: The State of Play in Post-Acute Conditions Research

Patient Priorities for the future of research into ME and Long COVID
  • Opal Webster-Philp
  • Sarah Barley-McCullen
Showcase of research findings
  • Prof Danny Altman, Imperial College London: Immune mechanisms in Long Covid and other post-viral sequelae - an update
  • Prof Amitava Banerjee, University College London: STIMULATE-ICP (Symptoms, Trajectory, Inequalities and Management: Understanding Long-COVID to Address and Transform Existing Integrated Care Pathways)
  • Prof Manoj Sivan,University of Leeds: Health Effects From Infection sequelae: Tailoring Services and Advancing Guidance (HERITAGE) study in Long COVID and ME/CFS
  • Prof Chris Ponting, University of Edinburgh: Initial results of the DecodeME project
  • Prof Dmitry Veprintsev, University of Nottingham: Identification of candidate GPCRs involved in ME/CFS by comparing drug side-effects with disease symptoms
Early Career Researcher Showcase
  • Dr. Katharine Seton - Quadram Institute: Light ME Up: Pioneering Remote Clinical Trials in ME/CFS Research
  • Dr. Audrey Ryback - University of Edinburgh: Uncovering risk factors and the lifelong health impacts of myalgic encephalomyelitis / chronic fatigue syndrome from electronic healthcare records
  • Dr Alkisti Mousaki - University of Leicester: Decoding the female bias in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome at the molecular and cellular ultrastructural level
  • Dr Max Taquet - University of Oxford: Cognitive and psychiatric symptom 2-3 years after hospitalisation for COVID-19: predictors, trajectories, and outcomes
Lunch break 12.40-1.25

Session 2: 1.25-2.35: Views from Industry, Charities and Funders:

Industry
  • Krystyna Taylor - Precision Life: From Biology to Breakthroughs: Mechanistic Insights Driving Precision Medicine in ME/CFS and Long COVID
Charities
  • Margaret O’Hara- Long COVID Support: Long Covid: "we’re gonna have to science the s**t out of this”
  • Sonya Chowdhury- Action for ME: Achieving breakthrough; changing lives
Funders
  • Gareth O’Brien, NIHR Research Support Service: How can the NIHR Research Support Service help you?
  • Nathan Beebe, NIHR Academy: NIHR Academy funding and development opportunities
  • Glenn Wells, Deputy Executive Chair – Medical Research Council: Overview from MRC
2.35-2.50 Break and end of virtual session

Session 3: 2.45-3.45: Next Steps in ME/CFS and Long COVID - Workshop

Workshop sessions on tables to discuss key questions

Questions to address:

o What are the important outstanding research questions?

o How can we encourage researchers to join the ME/CFS and long COVID field?

o How can we enable new collaborations across specialties and disciplines to stimulate further vital research?

Feedback from workshop and Close of formal meeting

Session 4: 3.50-4.45: Networking and Refreshments
 
Jonathan Edwards said:
Patient Priorities for the future of research into ME and Long COVID
  • Opal Webster-Philp
  • Sarah Barley-McCullen
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Does anyone know anything about these two patient reps? I have come across Opal some time ago from a pretty bad book she self published on behalf of an organisation calling itself the ME/CFS Alliance which has a website but no list of activities or names of people running it and seems to exist purely to sell Opal's book. I gather she was and probably still is active on the CMRC patient rep group. I hope she is more clued up now about the research concerns of pwME.
 
Jonathan Edwards said:
Prof Manoj Sivan,University of Leeds: Health Effects From Infection sequelae: Tailoring Services and Advancing Guidance (HERITAGE) study in Long COVID and ME/CFS
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Prof Sivan is a professor of Rehabilitation medicine and runs the Leeds Long Covid service, including working with the app company ELAROS that has put his Leeds service material on an app and is attempting to expand it to include ME/CFS and FM as well in theiir apps. We have not been impressed so far. He seems to recognise that PEM prevents using GET, but has little idea how to help pwME or pwLC apart from rehab based outpatient clinics. It will be interesting to hear whether he has anything useful to say about research.

He led the design of an LC questionnaire called C19-YRS, discussed here;The modified COVID-19 Yorkshire Rehabilitation Scale (C19-YRSm) patient-reported outcome measure for Long Covid or Post-COVID-19 syndrome, 2022, Sivan
 
Trish said:
Prof Sivan is a professor of Rehabilitation medicine and runs the Leeds Long Covid service, including working with the app company ELAROS that has put his Leeds service material on an app and is attempting to expand it to include ME/CFS and FM as well in theiir apps. We have not been impressed so far. He seems to recognise that PEM prevents using GET, but has little idea how to help pwME or pwLC apart from rehab based outpatient clinics. It will be interesting to hear whether he has anything useful to say about research.

He led the design of an LC questionnaire called C19-YRS, discussed here;The modified COVID-19 Yorkshire Rehabilitation Scale (C19-YRSm) patient-reported outcome measure for Long Covid or Post-COVID-19 syndrome, 2022, Sivan
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Et in arcadia ego.
 
Is there a link to the Eventbrite site to try an d register for online place? Early discussion said there were only limited numbers available. Is it worth trying now?

edit: Eventbrite link online is still stating that there are only 50 virtual places. Anyone know any more. I hope people here have succeeded in getting places.
 
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@Jonathan Edwards - thank you.
I have been looking through that site and see that registration ended on Nov 2nd so it seems too late to register now. I should have been more on the ball. Don't quite know why I wasn't except that the restricted numbers was a concern.
Does anyone know if they expanded virtual numbers beyond 50? I'm sure there must be more wanting to attend.
Do we know if it will be recorded and shown later? @Troutwish reported that on 28th Oct it was not planned to record it.
 
Kiristar said:
Not good that virtual attendees can't participate in the afternoon workshops. That excludes patients. Also if I were a new researcher to the scene (the sort of people we want to attract in). I'd probably have gone for a virtual ticket to see what's what without having to commit to travel.
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Not just patients also researchers. They are saying it would be too expensive to have some virtual breakout rooms along with those who are attending in person. I think it says something about how they see ME as a priority.
 
Binkie4 said:
Does anyone know if they expanded virtual numbers beyond 50? I'm sure there must be more wanting to attend.
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At one point there were only a couple of places left, but then later there were tickets available—so I think they might have upped the numbers.

If there's no interaction with the online audience it doesn't need much effort on their part to include more people. It's basically a broadcast.
 
Adrian said:
I think recording is different as the speakers need to be happy with that. But this was already the minimum that the MRC thought they could get away with.
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I wonder if they asked the speakers.
There is considerable interest in post acute infections currently not least because of covid, and Decode has recently reported so it would have made sense both to publicise this further and record the day. It's also titled a showcase event which implies that it is intended for a wide audience.
 
Adrian said:
Not just patients also researchers. They are saying it would be too expensive to have some virtual breakout rooms along with those who are attending in person. I think it says something about how they see ME as a priority.
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That’s BS. Virtual breakout rooms became standard during lockdown. They should be able to manage with a single staff member that can pop in and out to help people if there are issues. Planning virtual breakouts doesn’t take much extra effort. I’ve done it myself multiple times.
 
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