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

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

 

Of Forward ME members, MERUK left CMRC and the 25% I don’t think would join, so idk if CoM is representing all of them.

 

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

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

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.

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

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.

No BACME conference collab.

I saw someone else wondering what had happened to that recently.

 

@Esther12 - thanks for posting these comments.

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.

 

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.

 

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.

 

PAG looking for new members.

 

It would be great if someone who was an S4ME member and would liase with patients here were to join PAG.

 

What are the details for applying to the PAG?

 

I would guess that AfME are the people who are meant to be able to supply that kind of information. Alternatively, if you are on Twitter, perhaps ask Chris Ponting directly?

 

BACME gave a platform to Per Fink at their last conference.

All one needs to know, really.