April 2018 Minutes of the CMRC meeting and latest news

https://www.actionforme.org.uk/uploads/images/2018/05/Draft_Chair_approved_mins_24.4.18.pdf

I don't know if this has already been published, it's the April CMRC minutes. I looked it up to see what was most recent. It seems Sonya chowdhurys time and salary is largely devoted to her role and work with the CMRC which might be why she's absent elsewhere. There is a few names listed I am not sure of. It says at the end they've decided they no longer require services of the SMC, so no more SMC representative/attendance.


There's also this board paper that the CMRC have been using with MRC etc.
https://www.actionforme.org.uk/uploads/images/2018/06/cmrc-rising-to-the-challenge-240418.pdf

Interestingly the beginning of it is the same as the parliamentary briefing prepared by groups. It did sound to me AFME ish and I'm surprised to be honest that AFME were given the task of defining ME given their long history of not endorsing any criteria and insisting CFS = ME etc.

"What is CFS/M.E.? CFS/M.E. is a long-term (chronic), fluctuating, neurological condition that causes symptoms affecting many body systems, more commonly the nervous and immune systems, which affects all age groups (including children and adolescents) and all ethnic and socioeconomic strata. People with M.E. experience severe, persistent fatigue associated with post- exertional malaise, the body’s inability to recover after expending even small amounts of energy, leading to a flare-up in symptoms. Few make good progress and may recover, while most others remain ill for a number of years and may never recover. People with CFS/M.E. score lower overall on health-related quality of life tests than most other chronic conditions. An estimated 250,000 people are affected by CFS/M.E. in the UK.

NICE Guidelines: NICE acknowledges that the physical symptoms can be disabling. NICE identifies three levels of severity: Mild: Are mobile, can care for themselves and can do light domestic tasks with difficulty; Moderate: Have reduced mobility have usually stopped work, school and are restricted in all activities of daily living and Severe: Unable to do any activity themselves, are often unable to leave the house, depend on a wheelchair for mobility and experience severe cognitive difficulties. "

There's three pages of stuff very worth reading.

I've just quoted down to their section on NICE's three levels, as that completely erases my level , level 4 bedridden. The rest is arguing their case for the future they envision of a dementia platform and a modified version of MEGA forming a CFS centre, tying in with NIH stuff.


There's also this presentation

https://www.actionforme.org.uk/uplo...stems-medicine-board-presentation-240418.pptx

Lots to read.
The most interesting part is a letter from the chief medical officer to Stephen Holgate expressing interest in a research collaborative and wanting to meet, along with Jeremy hunt.

This is I assume what iime were alluding to in a post discussed here:
https://www.s4me.info/threads/13th-...nference-1st-june-2018.532/page-10#post-79813

I regularly check social media and haven't seen this put out there, driving forward a Mega study still seems priority. They also want to work with patients on priorities but that's not a meeting in two weeks, but a process it seems, to build on their 2007 work on prorities , I mean FGS are we living in slow motion or something?

I don't know whether to be pleased at what's happening, skeptical or annoyed at the P-g about over years until this apparent "right time " for action.

 

I think this looks hopeful.

 

Some positive signs, but I'd prefer an open acknowledgement that they'd got things wrong previously.

slide 6: "Despite some changes to the Medical Charities over the 5 years, with some merging, others leaving and new ones joining, the CMRC remains strong."

Hmmm... not that strong? The last 5 years of the CMRC haven't been hugely impressive, have they?

From the minutes, I wondered if this is deliberate comedy understatement?:

"CL/JW
shared that the PAG are concerned that there are no effective
treatments and no universally agreed diagnostic tool."

- From a patient perspective, there are concerns that we've gotten nowhere with improving patients lives over the last forty years, and if anything,. we've just made things worse. It is good that a lot of researchers have secured comfortable careers from CFS, but is there any way we could improve outcomes for patients a bit?

"It was formally noted that given the change in terms of reference of the
CMRC, it will now manage its own communications and retain
independence. Therefore, SH wrote to the Science Media Centre thanking
them for their contribution and acknowledging the end
of role for them on the Board."

Why would SH thank the SMC for promoting bigotry and quackery?

Did we ever have it explained what the SMC were doing with the CMRC? Were they invited? Who by? Were the SMC meant to be handling CMRC communications?!

edit: Good to have the prejudice and stigma around CFS recognised:

"As Prof Sir John Bell has pointed out in a recent conversation on CFS/M.E., prejudice and stigma that wrongly remains associated with this condition and which still affects health and social care, will only be dispelled by discovery of its causal biomolecular mechanisms."

https://www.actionforme.org.uk/uploads/images/2018/06/cmrc-rising-to-the-challenge-240418.pdf

 

Me too. They can't just act as if the past twenty years haven't bern totally wasted and expect the patients who've lived and suffered through that time to just get behind them with no apology or recognition even
If you read the additional supplements a) you'd think the CMRC and right since AFME started working with the MRC back in 2003? had been a success? Not the total failure not only to get funds, develop a research strategy but even to move beyond Oxford criteria use, recognise PEM as central to ME and that UK CFS umbrella they've funded bears not enough relation to the PEM systemic diseas patients are experiencing. .

They're full of self promotion of all the (too many ) CFS ME charities who joined it

No recognition it's been completely without adequate funding input - unlike the dementia uk platform

Still mainly totally focused on MEGA as the way forward as if nothing else can be done - I'm not sure what patient feeling is on the scientific justification of that

The letter from the CMO is astonishing in its failure to recognise the utter waste of time since the CMO report of 2002. Hey that's 16 years ago folks and you've refused to attend every IIME conference but now is suddenly our time? Actually I think the time was before the deaths of Sophia Mirza, Lois Owen, Lynn gilderdale, Emily collingridge, Yvonne Smith, merryn croft. All English women dead from neglect.

And indeed why thank SMC for their highly negative involvement and yes why were they asked to be involved given their terrible reputation regarding CFS, which SURELY the charities could have pointed out.

There was also mentioned that patients views were seen to be a barrier in the field. Ugh.

 

https://twitter.com/user/status/1007506633914834944

 

I think Keith misrepresents the minutes in that tweet, especially in regard to BACME. I don't see the CMRC proposing that the two conferences should be merged at all.

 

As collaboration is the buzz word, I can see why being able to quote another major body as part of your movement is useful. Of the U.K. Research charities, two of four are now involved. It would look good on paper However it would be by patients very unwelcome with their behavioural leaning. I guess it's these isdues that would be weighed up.

 

This looks very encouraging to me.

The most important thing is that it is a pitch for more funds to the Medical Research Council's Population and Systems Medicine board. I will charitably assume that accounts for the rather glossy history of the CMRC.

The document highlights the key symptom of post-exertional malaise, and points out that research funding is exceptionally low compared with other neurological or multisystem disorders. Group points out the problem of scepticism from healthcare providers as well as patients’ problems of hostility fro them and treatment strategies that exacerbate their symptoms. Above all, it states the need to uncover cellular and molecular mechanisms of the disease.

The document goes on to say that "innovative biomedical research is urgently needed to identify risk and therapeutic targets".

It is also highlights endorsement of the need for serious biomedical research from people that will impress the MRC: NIH director Francis Collins and, from the UK, professor Sir John Bell. The latter is Prof of medicine at Oxford, has focused on immunology and genetics research and above all is or has been a serious player in the administration of UK research.

 

https://en.wikipedia.org/wiki/John_Bell_(physician)

OSCHR = Office for Strategic Coordination of Health Research

https://mrc.ukri.org/about/what-we-do/spending-accountability/oschr/

 

It is unforgivable to me that funds weren't pitched for after the Gibson report, or after the 2012 one off ring-fenced allocation. We didn't have to just accept slow mo and no funds, that time can't be bought back. I can't look at the current out of the context of the 25 years I've been Ill waiting for research. If we haves to now pretend to MRC that everything at CMRC has been dandy and glossy and only now Is the Time for action and MRC haven't been neglectful then It's a betrayal.

I also think that this collaborating with the establishment approach typifies the MEA & AFME, who act as long as we got there in the end that's fine. That's up to them, they have chosen to be acquiescent, collaborative with MRC rather than to challenge and will now bthibk the rewards are being reaped. I do think that the new UK #MEAction movement needs to be aware of this and think they were naive in handing over for example the unrest film to those two charities to promote, because whilst I understand the idea of most reach, the idea that MEA & AFME charity heads are going to promote patient unrest or join a movement on the uk streets demanding research funds is just totally absurd. This ^^^^ is what's happening, twenty years behind schedule but when I hear that it was decided direct lobbying of Jeremy hunt was decided inappropriate unlike that in USA of NIH, is it because of ideas lead by MEA through forward ME etc that going the establishment route is best because of ^^^ , where we as patients just sit and wait and get told eventually what's been decided by tho.

 

It's concerning if the PAG is now just made up of the remnants of the initial group, with many having resigned due to the problems with what was happening, and I think that may now be the case (sorry if I've got that wrong).

Did @Russell Fleming say he was a member, but then resigned?

 

IF CMRC really wants to claim patient engagement they should cosider holding phone ins like the nih where un selected patients can ask questions and air views. And they engage with cross section of the population, not just their fans. They could also have something similar to the CFSac in America.
I'm concerned that taking in patients views on priorities ( the views of patients they've vetted who largely sign up to anything AFME endorse) is going to either take more time /be used as another delaying tactic, depending on opinion. The ME expert group has been going since 2008 but only now insists we are a field that needs special funds and wants patient input.

 

It's sad if all the useful patient representatives resigned, leaving only the crappy ones. This is, unfortunately, why sometimes it's not a good idea to simply abandon an organisation we don't agree with. Sometimes it genuinely is better to stay within and fight the good fight (easier said than done, though--especially if the management committee doesn't listen).

That said, the CMRC should recognise that when it haemorrhages patient representatives, it's doing something drastically wrong, and look to stem the bleeding. I feel much better now they've dropped the SMC and have Chris as Deputy Chair, but getting the right patients involved would be a next big step.

Can anyone volunteer to be a patient representative for CMRC? Can we get some good people to apply?

 

we have a member @phil_in_bristol :
"I am a member of the CMRC patient advisory group, and I keep a close eye on what is going on & discuss with other members any matters that concern us."

maybe he could shed some light on these issues?