UK: MRC and NIHR announce ME/CFS workshop, November 2019 & ME/CFS Biomedical Partnership FAQ

Off topic a little bit, but does anyone know what criteria the US Centers of Excellence for ME/CFS use? Many thanks.

Also @Andy, may I ask how similar is this to the proposed 2016 MEGA study that didn’t get funding?

 

If I remember correctly, they use the CCC or the IOM.

 

Sorry, didn't see this before as tags that are edited into a post don't alert the tagged person.

I certainly can't remember all the individual details of the MEGA project but broadly I believe that that the GWAS part is very similar. I don't recall that MEGA included any expansion of the ME/CFS Biobank cohort, so that part is different. And a very important difference, for me and for many others, is the complete absence of any psychosocial researcher - so no Crawley, no psych questionnaires, just biomedical investigations.

Hope that helps.

 

Thank you for your reply.

 

Phew, just gave my little talk about PPI.

 

Well done. Hope the rest of the day goes well.

 

Well done @Andy , hope you can rest soon!

 

ME/CFS Biomedical Partnership

Patient & Public Involvement (PPI) Steering Group Update


Introduction

A workshop, hosted by the Medical Research Council (MRC) and the National Institute for Health Research (NIHR) was held on 25 November 2019 and was attended by 30 people with ME, carers, scientists/researchers, charity representatives and MRC/NIHR representatives.


The purpose of the workshop was to assist the research team management group (Prof Chris Ponting, Dr Luis Nacul, Andy Devereux-Cooke and Sonya Chowdhury) alongside Biomedical Partnership colleague investigators in developing a fully informed and competitive proposal and make recommendations to improve the research proposal. Following this workshop, a research application will be submitted to MRC and NIHR in January for consideration for funding, following peer review. You can read more about the project in Simon McGrath’s blog and on the FAQ produced about the project. An update to the FAQ will be produced soon.


For those PPI Steering Group members present, there was a unified view that the workshop delivered in its purpose and was a positive, inclusive experience with patient and carer involvement at its heart.


What was discussed at the workshop?

The workshop was overseen by an external facilitator from Knowinnovation to help ensure that all participants were able to participate effectively and keep the group to task. After introductions from the MRC/NIHR and the Management Group to set the context, there were two sessions designed to help explore different aspects of the research methodology.


Session 1: Case definitions and PPI

• What is the most appropriate definition of ME/CFS that will be used in this project?
• What are the ideal inclusion/exclusion criteria and how are participants matched to this?
• What is the most appropriate method for recruiting patients into the study?
• What are the risks in recruitment and how should these be mitigated?
• What should PPI look like for the project?

Workshop attendees supported the Management Group’s proposal that people should meet the Canadian Consensus Criteria and/or the Institute of Medicine criteria. You can read more about the different case definitions HERE.

Have your say by voting and letting the PPI Steering Group know your thoughts: LINK HERE

Session 2: Methodology and Governance

• What should an ME/CFS platform look like?
• What should the balance be between GWAS and more in-depth biomarker studies?
• What further research opportunities are there for each of these cohorts?
• How should frozen samples be biobanked (single or multiple site)?
• What should the governance for access to the samples and data look like?

The group discussed the above questions alongside how to prioritise the different aspects of the research and the budget. It was agreed that we need to craft a scientifically robust GWAS application but the more detailed costs now available most likely mean that we cannot also expand the biobank with samples other than saliva. There was consensus that the we need to prioritise the GWAS work. There were lots of other suggestions and recommendations from individual participants which the Biomedical Partnership Management Group will now consider.


At the end of the workshop, the importance of this invited application to not only delivery a high-quality genomics project but to also create a new pathway for future research and research funding in the UK was re-stated.


PPI Steering Group Members:

• Sonya Chowdhury (Co-Investigator; Action for M.E.; UK CFS/ME Research Collaborative (CMRC) founding charity representative
• Andy Devereux-Cooke (Co-Investigator; CURE-ME Biobank Steering Group patient representative)
• Jim Wilson (UK CFS/ME Research Collaborative (CMRC) Patient Advisory Group representative)
• Countess of Mar (Forward ME representative)
• Dr Charles Shepherd (ME Association; CMRC founding charity representative; CURE-ME Biobank Steering Group Chair)

 

Please note the survey to vote on the selection criteria to be used and to provide any feedback/comments that you might have, https://www.surveymonkey.co.uk/r/MEBiomedCriteria - it's in the notice above but it might be easy to skip over it accidentally so I'm reproducing it here.

ETA: Added detail that feedback can be given as well as voting on the criteria.

 

I'm not aware of any geographical restrictions on it, so my expectation is that anybody can take part.

 

5pm, 10th December.

 

The authors of the IOM criteria said they were not intended to be used as research criteria.

 

The survey said it s asking for opinions, here it says vote. May I ask is it a straight vote or seeking opinions? Many thanks.

 

It's both, I'll amend my post to make this clear.

 

There is a vote and also an opportunity to comment

 

I find it very strange that nobody has commented on the apparent removal of the proposed expansion of the M.E. Biobank from this project. This was a key (but not the only) distinction between what was MEGA and this new venture and it offered considerable scope for future research. It seems very odd that the expansion plans are no longer part of the project.

 

I think there's more to it than that. Hopefully the public will learn all about it in due course. We haven't even been informed of the estimated costs at this point - another oddity I think. If I remember MEGA - which aimed to recruit from NHS specialist clinics rather than online - was to cost around £1.2-1.5m. This new proposal may be considerably more than that - and MEGA don't forget didn't get funded by either MRC or Wellcome. Hopefully this new proposal - minus the Biobank which I think would have been a terrific addition - will somehow convince the MRC/NIHR it is worth doing.