CMRC minutes from July. Countess of Mar has joined CMRC representing Forward ME

Cinders66

Senior Member (Voting Rights)
https://www.actionforme.org.uk/uploads/images/2018/07/DRAFT_Minutes_CMRC_10.7.18.pdf

I’ve not seen these or this news anywhere before so posting here. I can’t see much else in significant developments. Another BACME member is involved. Dr Louis nacul was there as an observer. Mainly a discussion on the three areas Holgate has as priorities and limited news of discussions with DoH.

In the name of transparency I thought the charities involved would post these
 
LR who has taken over from GM as Chair of BACME. GM will remain as a Board member but will no longer represent BACME.

Libus Ratcliffe is the new BACME chair. I don't know anything about them.

The Academy of Medical Sciences (AMS) expressed an interest in producing something in the field of p ain and fatigue but were not minded to focus on a specific disease area. Through discussion with Prof W h itty, there was an expressed view that this would be of benefit to the field.

SH shared a couple of ideas for consideration by members: request meeting with CEO of AMS to put forward a case for support for their support. Another option is to consider an approach from fellows to support the request. CS proposed consideration of a symposium. MM suggested writing dir ectly to the PM. It is e ssential t hat we ensure a clear ask to ensure that the output is fit for purpose.

SC raise d questions about what value would be created in pursuing this and would further delay be caused if there is political momentum currently ? . It was decided to review again in due course

I'm with SC on this. That AMS report does not sound like something we want to encourage.

James Lind Alliance Priority Setting Partnership (PSP) SH introduced the PSP which is focused on treatment and interventions and not research. There is a set of processes that are worked thro ugh in all disease areas and applied rigidly to arr ive at a set of agreed priorities between patients and clinicians which are then published. Research funders would then use the priorities to determine the use of research funding. There is a lot of work involved in this process as well as cost. However, arriving at joint priorities to shape future research could be helpful with patient voice at the heart of this.

The Board agreed that this should continue to be a priority. A working group will be established to look at how to progress this. The working gro up will identify an action plan .

This sounds like BS to me. The James Lind priority setting for MS was what led to the recent flowering of MS fatigue quackery from Trudie Chlader and Rona Moss-Morris:

http://www.jla.nihr.ac.uk/priority-...Top-10-unanswered-research-questions-2013.pdf

They decided to prioritise "3. Which treatments are effective for fatigue in people with MS?" It's far from clear that their process included making sure the patients involved understood the difficulty of measuring fatigue, or the dangers of using subjective self-report questionnaires to measure 'fatigue' in trials of an intervention like CBT.

IAFME (International Alliance for ME) Consensus Document

SC referred members to the email and the document that was previously circulated. She highlighted that the purpose of the document is to provide an agreed statement to WHO on ME to seek a global health response from them to the illness. It was developed fo llowing advice from the WHO representative met with in April. The document has been developed with input from researchers/academics in the UK and US, including Lily Chu and is intended to be reflective of published research and not opinion.

SC has receiv ed some feedback which she will incorporate into a final draft. NH offered to send some small suggested amendments.

SH highlighted that there was a need for agreement on principles not details. Members were encouraged to review the final draft when sent and to let SC know if willing to support. If there is agreement across the CMRC Board members then CMRC will endorse. CS stated MEA has already agreed to sign.

Is that document public yet? I always get nervous when people fail to focus on the details.

The PAG would like some assistance with recruiting new members and requested some input from CMRC members. Agreed support and process to be establish

Some people were raising concern that the current PAG will be made up of only those who failed to resign during the problems with MEGA.

All actions have been completed or addressed through the main agenda
with the exception of the action in relation to BACME and the conference.
There will not be a joint conference at this stage.

No BACME conference collab.

It was also noted that there has not been an update from David Nutt’s study at the CMRC conference. SC is pursuing with AAM.

I saw someone else wondering what had happened to that recently.
 
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@Esther12 - thanks for posting these comments.

Do you happen to know what this refers to?
All actions have been completed or addressed through the main agenda with the exception of the action in relation to BACME and the conference. There will not be a joint conference at this stage.

And what's the general opinion of BACME? I saw some educational material from them that I thought missed the boat
 
Do you happen to know what this refers to?


And what's the general opinion of BACME? I saw some educational material from them that I thought missed the boat

Yeah, BACME are terrible. They were promoting PACE as a great thing, and I've not seen any of them speak out about the way the patients pointing out problems with PACE since then have been smeared. They had seemed to want to combine conferences with the CMRC conference, but I don't see them as an organisation with any integrity so am pleased to see it's not going to happen.
 
I found a Dr Libuse Ratcliffe who is a specialist in general medicine in Liverpool and another one who is an infectious diseases specialist in Manchester with publications on meningitis and HIV. I have no idea whether these are the same person, and whether it's the person who chairs BACME.

The BACME website doesn't name their officers. Their list of clinics for Liverpool says they offer a consultant physician clinic at Liverpool hospital, so this may be where Libuse Ratcliffe fits in. Their latest conference was in Liverpool too. No mention of Libuse Ratcliffe on their conference info.
The conference is discussed on this thread. @Joan Crawford, can you enlighten us?
 
It hasn’t progressed as I would like. The DoH seems to think SHs strategic priorities are the way, that’s it. The strategic priorities have seemingly progressed little from when they were suggested last year. Eg Holgate wanting a uk version of IOM report hadn’t got anywhere, with CS proposing a symposium before the report, delay delay. The dementia platform thing had not had “first step” meeting with mrc Yet, due in July, the patients priorities assessment thing looks like another delay, yet to be started with some laborious procedure to understand “what patients want”. If they really want to engage with all patients, hold a teleconference instead of cherry picking PAG that’s just sympathetic yes men. Sonya is pursuing her international advocacy stuff.

Pleased it’s no to the bacme and chasing up David nutt

But what’s changing, progressing in uk CFS research and funding? They have low number of abstracts submitted.
 
If they really want to engage with all patients, hold a teleconference instead of cherry picking PAG that’s just sympathetic yes men.
I agree - modern technology allows for many easy ways of engaging with patients; there's little excuse. I'm becoming increasingly uncomfortable with the voice of patients being selected and filtered, and a few organisation reps speaking for us. Can't articulate it well but it's too opaque and disconnected from the patient community

Glad to see that Chris Ponting would like to improve PAG transparency, but there's no detail about that. Good of the MEA to provide an expenses budget for patients.
 
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