United Kingdom: ME Research Collaborative (MERC) [was CMRC] news

MEMarge said:
This is a list of PAG members, referred to by the MEA in Mar 2017. https://www.meassociation.org.uk/20...and-the-patient-advisory-group-29-march-2017/

http://www.megaresearch.me.uk/mega-team/patient-advisory-group/

It profiles 11 members and mentions one who chose to remain totally anonymous.

@phil_in_bristol @Russell Fleming, are these the current CMRC PAG members?

If so, then presumably there will be 3 vacancies to fill
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Hi - five of those named are still on the PAG, yes, but we're looking for about 5 new people - so do apply!

I personally am off to London tomorrow to attend the CMRC quarterly meeting there. Need to prep for this - I'm not in the same league as some of these (any of these???) scientists...... we'll hopefully talk about recruitment there, I know there have been a number of applications already (which is good news!). The patient voice will be heard!
 
MEMarge said:
I think that we will be getting recordings off full talks starting sometime this week.

They may well be adding up to 7 peopel to the PAG, may hear re this before Christmas, not sure.
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Hi Marge - yes you're right - we are going to make offers now, having gone through a rigorous, unbiased, anonymised process of selection of all the applicants.

PAG members can choose whether or not to remain anonymous, that's their choice. I'm hoping we have several extremely promising applicants who will bring a positive influence to the group. We'll probably have replies received by Xmas, & then in January induction will begin. So if nothing's been announced until the new year, it'll be "because of Christmas" (!).
 
https://mrc.ukri.org/news/blog/encouraging-new-ideas-for-cfsme-research/

This is old news and some might think it’s dredging up the past but I hadn’t seen this at the time although I’d read the official CMRC report. However given that Holgate has been given hero, leader, chief negotiator status by some for our illness I found this write up AGAIN concerning on his understanding.

When defining the illness he ignores PEM, as the conference has with undue emphasis on fatigue across illness. Secondly he is totally still on the fence regarding psychological and biological whilst recognising the biological basis. I think that this is troubling. All chronic illnesses have risk of psychological consequences but MS Or lupus would not be framed as biological and psychological and he seems to be perpetuating, atleast then, the UK medical way of framing the illness eg NICE trying to categorise us under neurology and mental health. I still don’t think he was the man we should have entrusted leadership to, but maybe if we wanted this connection to the MRC that was the only way to have him as the package along with his say on things such as Esther Crawley as deputy chair ?



https://mrc.ukri.org/funding/how-we-fund-research/opportunities/cfs-me-highlight-notice/

Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) is a complex and serious debilitating medical condition with a diverse range of symptoms. Profound physical and/or mental fatigue is the most well-known manifestation, while others include pain, disturbed sleep patterns and gastrointestinal problems. Each patient experiences their own personal combination of symptoms but certain ones dominate.
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I discovered this when I was look at the MRC highlight notice , supposedly there to stimulate research applications although clearly failing. In its descriptions of ME there’s no mention of PEM, again, which surely is a major omission if we want to interest researchers and get them intrigued and thinking of this illness as more than a fatigue based MUS. I do think that at the MRC and CMRC ME and PEM have not been recognised, emphasised enough. If I were trying to educate and entice researchers I would highlight PEM as a curious phenomena, emphasis how it’s not just deconditioning and try to get people thinking about that.
 
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What exactly are the CMRC currently up to? According to Sasha's new thread there is to be no conference this year.

I admit I've never been a fan of Holgate's approach to 'helping' this community. He's always appealed to me as the trojan horse. The gift to the ME community signalling peace with the BPS crowd even as they plot against us.
 
Snowdrop said:
What exactly are the CMRC currently up to? According to Sasha's new thread there is to be no conference this year.

I admit I've never been a fan of Holgate's approach to 'helping' this community. He's always appealed to me as the trojan horse. The gift to the ME community signalling peace with the BPS crowd even as they plot against us.
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I’m not sure, Dr Charles Shepherd said conference Was off for “logistical reasons” then said he wouldn’t go into that any further which seems excessively cagey if it was just building booking etc and the minutes mentioned that they’d be more research to discuss later. MRC essentially show case their research at the CMRC conference but probably have a lack of stuff seeing’s they haven’t funded much. Behind the scenes they’re in dialogue with MRC over funding mega i think

The CMRC has always baffled me, on one hands it’s supposed to be independent of MRC but then we get told Esther Crawley had to feature and it had to be a broad church including psychiatrists, says who? Holgates been the MRC man of choice for CFS since 2004, if you look at the early 2008 minutes of collaborations, from memory i think that it seemed essentially fatigue based. I’m sceptical, probably sounding conspiracy mad, that the MRC had any intention of our field doing anything but slowly evolve (for whatever reason, indifference, prejudice, plot) which is why it suits them to keep funding low, going slow and why old brigade people Wessely, white, Crawley were there until recently.
 
Yes, there is so much murkiness at CMRC. Esther Crawley finally 'moved on' and in came Chris Ponting who was said to be a good egg by reliable sources yet all the same they need to pick a side and start declaring their intentions toward the very sick people who supposedly they are wanting to help.

I hate politics. An endless tug of war leading nowhere.
 
I believe that the conference was postponed for 3-6 months mainly because Sonya Choudhury was taking a period off work to deal with a medical issue. Not the end of the world to have a little delay, I think.
 
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Has anyone bought and read the book referred to above?

I had a look a the website which calls itself MECFS Alliance, and refers to a 'think tank', and apart from referring to Holgate and the book's author, no names are given. I have never heard of it. The press release is here:
Code: 
https://mecfsalliance.org.uk/2021/05/10/press-release-10th-may-2021/

I thought I might take a look at the book, but the only way to buy it is from the website and you have to give your bank details to 'donate' to get a copy. I'm reluctant to do that for what seems like a one person website where I'm not confident about security. It's not on Amazon, so I assume is self-published. I wish the author well, but I think we need more information about the content and who is behind it before donating on an unknown website.
 
Sasha said:
I don't think it's realistic to expect Holgate to go, since he initiated the whole thing and seems to be it major player. I think the key thing will be whether any of the BPS crew survive the cut.

I wouldn't mind Holgate so much if he didn't put BPS people in positions of power and influence. My impression is that he himself considers ME/CFS a biomedical thing but has been blind to the madness going on in the 'big tent'.

But that 'big tent' has some very impressive biomedical people in it now, and if I were them, having had time to learn what's going on with PaCE and so on, I'd want a bit of reorganisation. And perhaps that's what this is.

I'll be very interested to see how this shapes up.
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I have always thought of Holgate as classic fence sitter.... but he did deliver decisively on Ella's case on Air Pollution so credit there. https://www.independent.co.uk/news/...-kissi-debrah-air-pollution-law-b1835395.html
 
NelliePledge said:
A bit odd to have an ME organisation with alliance in the title that nobody on S4ME has said they’ve heard of when so many here have so much knowledge of the world of ME.
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It's not really a formal organisation as such. I know Opal, the author of the book, through the CMRC PAG, which she has been involved with for many years.
 
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