United Kingdom: UKCRC (UK Clinical Research Collaboration) Subgroup on ME (part of the UK Government ME/CFS Delivery Plan)

Mod note:
There are three groups in the UK government's ME/CFS Delivery Plan of which the Research Working Group is one. The other two groups, and the Delivery Plan as a whole are discussed on this thread:
UK: UK Government ME/CFS Delivery Plan (includes Attitudes and Education Working Group and Living with ME Group)
Only the Research Working Group is run by UKCRC.

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The main research initiative as part of the UK government's drive to improve the ME research landscape in the UK is the setting up of the UKCRC (https://www.ukcrc.org/) Subgroup on ME. This subgroup will be convened at the request of the Chief Scientific Adviser (CSA), Prof Lucy Chappell.

Im pleased to say that the ME Research Collaborative Patient Advisory Group (MERC PAG) will be co-chairing this group with Prof. Ian Bruce from the National Institute for Health and Care Research’s Biomedical Research Centre at the University of Manchester. Prof. Bruce is an independent clinical co-chair from a biomedical background who had aligned research expertise and interests, and has agreed to take up this position. More information about Prof. Bruce’s background can be found here: https://www.research.manchester.ac.uk/portal/ian.bruce.html

The subgroup (and working groups) will be supported by a secretariat comprised of Dr Natalie Owen at the DHSC, and two members of the UKCRC secretariat at the Medical Schools Council. The current plan is for six meetings over the course of two years.

Dr Owen writes that: "[the] DHSC recognises that ME is a currently under-researched area. We are developing future work on ME which has a strong research component and view the UKCRC subgroup as the driving force to improve capacity and capability for research in this area."

A research rountable will take place next week, and that will inform the work of the subgroup.

We have spoken with Natalie and the two other members of the secretariat, and we're so far impressed. PAG will meet with Prof Bruce next week.

There will be other patient involvement in the subgroup, including at next week's roundtable, building on what has been achieved with both the DecodeME and PSP patient and public involvement (PPI).

 

I'm happy to answer on this thread any questions you might have. And I'll try and make sure this thread is updated into the future with any updates.

 

This is amazing news! Thank you for posting this!

 

It sounds a positive move.

Will there be anyone involved who actually knows how to get things done in research though?
That may seem a silly question but most people in the politics of research don't.
The MRC seemed to follow thee right path to DecodeME but this seems to be more all-comers fro all political groups.

 

Yes, as with many things there can often be a gulf between making the right noises versus making the right moves.

 

Thank you @InitialConditions for posting this promising news.

That's much appreciated.

Not addressing necessarily you or anyone in particular, just chatting:

I had a look at the link to Prof. Bruce's university website and tried to find out what kind of research he does and how.

There are some interesting projects he himself or his division at Manchester is/ was involved.

I didn't manage to get more info about these projects, though. Perhaps some links don't work? Or there isn't more info accessible than what's displayed on the webiste?

Hope it's OK to post the projects I thought were interesting and could be even relevant for research methodology applied in research into ME:

Identifying Digital Endpoints to Assess Fatigue, Sleep and Activities Daily Living in Neurodegenerative Disorders and Immune-mediated Inflammatory Diseases. | Research Explorer | The University of Manchester

Mcbeth, J., Bruce, I. & Parker, B.

https://www.research.manchester.ac....es(9cc00bb5-00eb-4a95-9a6a-b73e2f13fc0d).html



The effects of disease activity, inflammation, depression and cognitive fatigue on resting state fMRI in systemic lupus erythematosus

Michelle Barraclough, Shane Mckie, Benjamin Parker, Rebecca Elliott, Ian Bruce

https://www.research.manchester.ac....us(1d5ce016-3098-4ba4-afe0-136ac5730437).html

Rheumatology_paper_Barraclough_2021 / Accepted author manuscript, 370 KB, PDF document /
Embargo ends: 1/01/31

Abstract:

Edit:
Thought I should add at least one published and accessible paper co-authored by Prof Bruce (research methodology) :

Le Sueur, H., Bruce, I. N., Geifman, N., & MASTERPLANS Consortium (2020). The challenges in data integration - heterogeneity and complexity in clinical trials and patient registries of Systemic Lupus Erythematosus. BMC medical research methodology, 20(1), 164. https://doi.org/10.1186/s12874-020-01057-0

Forum thread here.

 

(Continued from above.)

At the same division but Prof Bruce not mentioned among the contributors:

Harnessing Remote Monitoring Technolog to Identify Treatment Targets for Fatigue in People with Rheumatic Diseases.

Mcbeth, John (PI), Dixon, William (CoI), Druce, Katie (CoI)

https://www.research.manchester.ac....es(7209d278-f6c9-4878-9b15-34e91564a516).html

 

Apologies, I obviously missed some things and also sorry for being dumb -- I'm afraid I don't understand how all the mentioned groups/ organizations on ME research are related.

So please forgive me if I post some rather dumb questions:

Which of those groups have been newly founded and/ or (how) are they connected to the recent round table discussed on the thread on the health secretary's announcement?

Where do the PSP group(s) fit in?

If I understood correctly, the members of the ME Research Collaborative Patient Advisory Group (MERC PAG) were approached through Forward ME?

Do you represent an organization there, @InitialConditions ?

At which stages will it be possible for other / individual S4ME forum members to get involved or give feedback?

Edited, wording/ clarity.

 

All the members of the MERC PAG that I have liaised with during the Research Agenda setting process have a very good grasp of the issues faced by PwME, the debilitating nature of ME and the problems with BPS research and their reluctance to change.

The follow up working groups will also have representation from people affected by ME with similar knowledge and understanding.
The groups are being run through the DHSC (Dept of Health and Social Care). The amount of information that can be shared, will be determined by them. They arranged the Roundtable so information re who was there is for them to share if they see fit.

I believe they are working on a document re what the next stage is, though do not know when that will be available.

All those with lived experience, who are involved, are of course keen not to say anything that could compromise their involvement. My view is that the Secretary of States' pledge to ensure that those with lived experience are listened to and at the heart of the development of a delivery plan is happening.

Personally, I will have less time to spend on the forum as I am involved in a working group, and of course that will be my priority.

 

Thanks @MEMarge both for your reply and your involvement.

And again apologies --I didn't want to sound distrustful. Edited my post a bit.

I'm just confused and initially worried about the lack of transparency and also the future role of S4ME.

But I understand that sometimes confidentiality is necessary.

All the more I look forward to and will appreciate any updates.

 

Your commemments/questions were fine @MSEsperanza.

I was just taking the opportunity to explain the situation as much as I could. Sorry if it came across a bit too strongly.

There were numerous tweets from a selection of people on Twitter, wanting to know more, which is understandable.

I guess I was trying to "manage expectations" on here.

 

I am not on the forum much at the moment as I'm in a crash, but PAG will co-chair the new subgroup on ME. This group is newly formed. Our involvement is nothing to do with Forward-ME. This has probably come from discussions that have been going on for some time between Sonya and co (probably Chris Ponting, Stephen Holgate, David Strain), and the government. I am a member of PAG, although I'm currently taking a break.

We have been told that other patient involvement will be via people involved with the PSP PPI and the DecodeME PPI.

I don't know about other patients getting involved. The plan is to form working groups, so perhaps then.

There are other groups being formed / activities, not directly related to this research subgroup, but I don't know exactly how it will work.

The roundtable was a one-off, but it will inform the subgroup's activities.

 

Sorry you are in a crash. Thank you for all you have been doing with PAG and in other ways.

Take time to rest, there are several well informed people ready to take on roles in the working groups.

I think DHSC are working on a document on whatb is happening re working groups etc over the next 4 months or so.

 

Thanks for this. Anyone know when will the minutes will be published?

 

Does anyone know to what extent BACME are involved in Javid's project? I keep forgetting what to call it.

 

I have permission from my DecodeME PPI Steering Group colleagues to share that Sian Leary will act as a patient representative for this subgroup, with Jim Wilson, previously on the CMRC PAG and a carer for his daughter who has ME, and myself as back-ups.

They have no involvement in the sub-group discussed in this thread, given that it is focused on research. I understand other subgroups will be formed and my guess would be that they will be involved in any subgroup that might deal with clinical care.

 

That is my understanding too.

There are at least two other working groups as part of the ME/CFS Delivery Plan. It might be worth starting a new thread for the whole project, but keeping this thread to discuss the specific research work.

 

The DHSC does not operate like that.

Part of this meeting will cover "What can publicly be disclosed now". Information about meetings/progress
I understand that there was a great deal of "vicious tweeting" possibly trolling - during the NICE process to members of the Guideline Committee, trying to put the real needs of PwME first. It is hoped that the blanket ban that NICE imposes will not happen here.

Information about meetings/progress will be in brief, broad statements I imagine. People involved may well be asked to run any comments they make publicly past the DHSC

I do hope people will be encouraged once the information of members of the other two working groups are made available.