Thread for all minutes of the UK CFS/ME Research Collaborative [CMRC] Executive Board Meetings

Is @Action for M.E. any more than a conduit for fifth columnists?
A4me are currently targeting new and naive patients/parents/practitioners in Scotland.
Their much vaunted, well funded "Education for GPs" is #invisible

 

@Emsho @Amw66 do either of you know what AfME are doing in Scotland/mentoring scheme etc?

 

Will PM

 

Thank you

 

Minutes from meeting on 26th June 2019

Agenda

* Minutes and Matters Arising
* MRC Strategy Board
* CMRC Working Groups
* Conference
* Budget
* AOB

https://www.actionforme.org.uk/uploads/images/2019/07/CMRC_July.pdf

 

It is very concerning to see that Anna Gregorowski was at the meeting. She heads up the UCLH team and the feedback re her approach from parents and youngsters is not good. This is the team that includes Dr Terry Segal.
Dr Terry Segal
Tel: 020 3447 5876
Fax: N/A
Email: terry.segal@nhs.net

Location:
University College Hospital

Specialities:
Chronic fatigue syndrome, Children and young people's services, Children and young people's general services

Professional background
Terry Segal is a consultant in general paediatrics and adolescent medicine, with an interest in paediatric and adolescent endocrinology. She is the clinical lead for adolescent medicine. She trained in Bristol University, and after returning to London, she undertook postgraduate paediatric, adolescent and endocrinology training at Whittington, Guy's, Great Ormond Street , Barnet, and UCH/Middlesex hospitals. She is particularly interested in working with overweight and underweight children and young people, adolescent problems such as chronic fatigue syndrome/ME, and those with chronic pain and emotional difficulties.


Deb Roberts is "Clinical Nurse Specialist" at Royal Liverpool and Broadgreen Hsp Trust. She wrote the research summary for a recent BACME conference..

@Simon M, can you reassure us re any of this? Or @Adrian as a PAG member.

 

I'd be interested to know why support a GWAS over any other type of project.

Not that I'm against a GWAS, but as I understand it, the CMRC have gone to the MRC, encouraged them to support a GWAS, things are looking positive for a GWAS, but there isn't an established team ready to put an application for funding for a GWAS.

Why not collaborate with researchers already working in different areas on ME, encouraging support from the MRC for that work, then the transition period between gaining an indication of approval and an application going in to the MRC would be that much quicker?

Has the CMRC made value judgements on the work that other researchers are doing, such that a GWAS is felt to be a better bet than anything else already underway at the moment?

 

And while I'm pondering on the CMRC @Adrian , do you get any sense from them whether they feel that they communicate with the wider patient community sufficiently? My, n=1, opinion is that they don't.

 

Read the minutes and all I can think of is:



Just fire the whole lot and let representatives from the patient community take over along with selected experts. This is performative BS.

 

I totally agree that their patient communication& engagement and involvement is poor. And doesn’t require committee’s and rocket science to work out how to do it better.
The minutes seem designed to be as opaque as possible. I have asked previously for full names to be used in the patient minutes rather CP said this or that, (but check which CP it is and who the heck is CPS anyway) and because the names keep changing why can’t they list the background/specialism of the individuals, few of whom when I’ve looked them up in the past are actual researchers.

I think that the CMRC is a much needed fig leaf for the MRC to do that magic combination of something and nothing which seems their preferred position on CFS. Write to the MRC about what are they doing and the CMRC is the main thing, along with that other token , the highlight notice.

AFME were quoting a CP MRC talk yesterday as encouragement on “the eve” they said of a GWAS, so perhaps they know something. They were also imo justifying small steps and set backs,which I find inappropriate. CP was not talking about CFS but they quoted a bit about “applications aren’t always funded or funded immediately and science takes time etc”, I asked why it was then thought appropriate to have all the eggs in this basket when it’s known to take time to take off. I was pretty surprised to see what Andy said above that there’s actually now no team ready to put in a gwas study even if it’s going to be welcomed by the MRC , is that really the situation? I also don’t understand, seeings that the MRC are closely involved it seems in the CMRC, why they didn’t get the previous gwas application into a more favourable position before it was submitted and then rejecting it.


Although there is valid criticism that NIH are woefully underfunding the area in America, especially galling when Harvard researchers are saying they could easily double researchers involved with enough money, the small steps nih did take, a well designed complex study, several top up funds to encourage researchers to add in CFS to their existing studies, funding 3 centres of excellence plus significant extra funding grants to Ron Davis , younger etc was at least recognising the diversity of research needed and did seem to be a reasonable but low powered attempt to shed some light. I don’t see uk on the same level.

 

Was EC binned off or did she just decide it was better for her to slip off like Peter white did from it and wessely did from the field. CMRC was built on principle of being a group across the spectrum of opinion on CFS

 

Was it? Wow. Talk about a fail.

 

I think Crawley was the most obvious high profile elephant in the room; but the CMRC has so many skeletons in the cupboard. If I remember correctly, Steven Holgate consulted Simon Wessely(?)

But it must say something when Invest in ME Research won't join, and MERUK left.....then there are also the questionable roles of people like Carmine Pariante?

I know there are some good people there now (like Chris Ponting) but you still can't help but wonder...

Personally, the 'Big Project' I would like to see funded (in collaboration with the ME Biobank) is the serum test (where they put ME patients serum with healthy peoples blood cells and vice versa) to show reproducability.

This I think would be the biomedical version of PACE; ie the definitive trial (on a large scale) that the problem is an organic one, and would hopefully put an end to all the psychosocial rubbish about ME.