United Kingdom 2024: Online workshops on ME/CFS Research

Link to post with a brief description of the workshops and a link to the recordings

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"Please join us for this online workshop aiming to stimulate clinical trial research in ME/CFS.

The speakers and discussions will look at clinical trial design in people with ME/CFS – how to optimise it, and lessons from other disease areas.

This is the first in a series of online workshops on clinical research in ME/CFS. The workshops are connected with the Research Working Group set up by the UK Clinical Research Collaboration. The workshops aim to raise the profile of ME/CFS clinical research, increase collaboration, attract new researchers and formulate research priorities in this area of huge unmet need."

More details at https://www.eventbrite.com/e/clinical-trial-design-in-people-with-mecfs-tickets-874512268737

 

"Please join us for this online discussion about the Octopus multi-arm, multi-stage treatment trial for multiple sclerosis and lessons for clinical research in ME/CFS particularly for drug repurposing studies.

This is the second in a series of online workshops on clinical research in ME/CFS. The workshops are connected with the Research Working Group set up by the UK Clinical Research Collaboration. The workshops aim to raise the profile of ME/CFS clinical research, increase collaboration, attract new researchers and formulate research priorities in this area of huge unmet need."

More details at https://www.eventbrite.com/e/clinic...ssons-for-mecfs-research-tickets-877436745927

 

"Please join us for this online workshop aiming to stimulate drug repurposing studies in people with ME/CFS.

The speakers and discussions will look at drug repurposing including clinical use and research findings, study design, and potential drugs such as low dose naltrexone (LDN).

This is the third in a series of online workshops on clinical research in ME/CFS. The workshops are connected with the Research Working Group set up by the UK Clinical Research Collaboration. The workshops aim to raise the profile of ME/CFS clinical research, increase collaboration, attract new researchers and formulate research priorities in this area of huge unmet need."

More details at https://www.eventbrite.com/e/drug-r...als-in-people-with-mecfs-tickets-877447327577

 

"Please join us for this online workshop examining ME/CFS research and underserved groups.

There is very little research on ME/CFS and underserved groups. The cumulative lack of validation of ME/CFS as a physical illness has had long-term effects on service provision and research direction and funding. Services for ME/CFS are inadequate or non-existent in some parts of the UK, and may not be updated to reflect the 2021 NICE guidance; Groups who are at particular risk of lack of support from NHS and social care services are children and young people, and those who are severely or very severely affected.

Certain groups of people with ME/CFS are doubly-disadvantaged. From long-COVID research it appears likely that the needs of those who are already minoritized or socially disadvantaged in society are being hugely neglected, including low rates of diagnosis and referral to specialist services, and almost complete absence from participation in research in the UK.

So where to start? We will focus on three areas with speakers and time for discussion in each area, to formulate research priorities and discuss next steps. The areas are;-

a) improving diagnosis and health care provision in people with ME/CFS particularly those who are already minoritized or socially disadvantaged in society.

b) disadvantaged groups within ME/CFS - the severely affected and children and young people.

c) widening recruitment and participation in clinical trials for ME/CFS.

This is the fourth in a series of online workshops on clinical research in ME/CFS. The workshops are connected with the Research Working Group set up by the UK Clinical Research Collaboration. The workshops aim to raise the profile of ME/CFS clinical research, increase collaboration, attract new researchers and formulate research priorities in this area of huge unmet need."

More details at https://www.eventbrite.com/e/mecfs-research-and-underserved-groups-tickets-877458541117

 

I guess a lot depends on the number and quality of speakers, but this series of workshop seems like a big step forward and well thought through. Thanks to everyone if you help bring these about. Sounds like the department of health and social care played a leading role?

 

Looks interesting. Pleased to see Caroline Kingdon involved as she’s great. And involvement from a teaching hospital/medical school near me.

Is there any more info about these workshops or how they came about anywhere?

 

They are part of the government research working party initiative.
Monica Bolton has been organising these - she is interested in naltrexone.

 

The real problem is that nobody has any clear idea what drugs to test, except naltrexone. Applications for funding for naltrexone trials have been turned down.

I am a bit sceptical about broad brush overviews of 'core outcome measures' when each type of trial needs outcome measures tailored to the expected benefit and the study design.

 

I doubt it's a realistic process. Even diseases with such a clearly known pathological mechanism that they can benefit from massively parallel automated testing are barely seeing any results yet, there are too many possible combinations to try and the process of human trials is the slowest possible way of doing this, billions of times too slow to work out. Not a typo, billions of times too slow, hell possibly trillions. Someone would have better chances at striking a massive source of gold by randomly digging around with a trowel once every week.

 

"Chair - Professor Harm van Marwijk, Professor in General Practice at Brighton and Sussex Medical School

Speakers

Sarah Gorst – COMET Initiative Project Co-ordinator (Core Outcome Measures in Effectiveness Trials). A Core Outcome Set was identified as a research priority in the 2021 NICE guideline for ME/CFS, and COMET were recently involved in the development of a Core Outcome Set for long COVID.

Sarah Tyson – Honorary Professor of Rehabilitation at University of Manchester, who is currently developing a clinical assessment tool kit for use in ME/CFS clinics.

Caroline Kingdon – Research Fellow at London School of Hygiene and Tropical Medicine, CureME and ME Biobank co-ordinator, who has wide experience of the needs of people with ME/CFS in clinical research.

Anna Williams – Professor of Regenerative Neurology at Edinburgh University, who chairs the Treatment Selection Committee of the OCTOPUS platform study in multiple sclerosis – a multi-arm multi-stage treatment trial.

Jessica Eccles – Reader in Brain-Body Medicine at Brighton and Sussex Medical School, who recently held a Public Engagement Event at Brighton and Sussex Medical School on the next steps for ME/CFS drug repurposing research with feedback from attendees on what adaptations people with ME/CFS needed in clinical studies."

Caroline Kingdon might be involved, but so are Tyson and Eccles, both of whom have proved to be problematic.

 

It's a mixed bag. Caroline is very good at what she does but I am not sure that she has any particular experience with trials.

The COMET initiative is a Delphi approach, which tends to be the worst way to do things. Eminence based medicine.

The MS study would be relevant if we had six drugs to test and something to see on MRI, but we don't at the moment.

Outcome measures are going to depend on what the drug is supposed to help with in symptomatic terms, and that is far from clear, even for naltrexone.

The only corroborative objective measures we really have are altimetry and employment status.

 

I would certainly agree that it is important to be able to measure how high you are after taking any drugs.

 

Clearly a 'trip' of the spellchecker.

 

From: Helen Baxter

Further to the information below, people can send in questions whether or not they are attending, and the organisers will try to get the speakers to address any questions sent in. It is hoped that the workshops will be recorded. If so, the recordings will be made available online.

Kind regards
Helen Baxter
25% ME Group

 

From: Helen Baxter

Further to the information below, people can send in questions whether or not they are attending, and the organisers will try to get the speakers to address any questions sent in. It is hoped that the workshops will be recorded. If so, the recordings will be made available online.

Kind regards
Helen Baxter
25% ME Group

 

From: Helen Baxter

Further to the information below, people can send in questions whether or not they are attending, and the organisers will try to get the speakers to address any questions sent in. It is hoped that the workshops will be recorded. If so, the recordings will be made available online.

Kind regards
Helen Baxter
25% ME Group

 

From: Helen Baxter

Further to the information below, people can send in questions whether or not they are attending, and the organisers will try to get the speakers to address any questions sent in. It is hoped that the workshops will be recorded. If so, the recordings will be made available online.

Kind regards
Helen Baxter
25% ME Group

 

The UK ME Association have done a post that ties together the information on the various workshops
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Research: Working together to find answers to ME/CFS!
May 8, 2024

A series of online workshops are running this summer for researchers, health professionals and people with ME, with the aim to raise the profile of ME/CFS clinical research, increase collaboration, attract new researchers and formulate research priorities.

https://meassociation.org.uk/2024/05/research-working-together-to-find-answers-to-me-cfs/

 

The UK ME Association have done a post that ties together the information on the various workshops
-----------------

Research: Working together to find answers to ME/CFS!
May 8, 2024

A series of online workshops are running this summer for researchers, health professionals and people with ME, with the aim to raise the profile of ME/CFS clinical research, increase collaboration, attract new researchers and formulate research priorities.

https://meassociation.org.uk/2024/05/research-working-together-to-find-answers-to-me-cfs/

 

Given the discussion on the thread about the MEA-funded clinical assessment tool, the session on clinical trial design might be an opportunity to submit some questions: