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

well.... I dont know what to think really, but one thing i feel sure of & that is that EC would not be leaving a position of status & influence if it werent to go to a position of higher status & influence, so i'm actually rather troubled by what she will do next. Worrying for the children of our community & indeed for us all

Also this - "build on the momentum created by the Institute of Medicine in the US by securing a high-level report on the illness and research in the UK" concerns me greatly. Greatly greatly greatly.
The people in charge in the UK are BPSers, their grip is still very firm & when i read the above sentence about such a report from the CMRC i hear "we as BPSers are sick of the IOM report being trotted out by patients & advocates to discredit our work, so we're going to supersede it with our own which will carry more weight here because it'll be British, & we'll have control over what it says, so that'll get rid of the IOM thorn in our sides".

Who's going to do the report? The Royal College of Physicians (with SW at the helm)?....
or the RC of Psychiatry?.... or ???? I cant think of any Body i'd trust, esp since i suspect the NICE report will end up at least as bad as the one we have now.

Indeed. Lets hope the other CP was an error & it is in fact Chris Pointing, otherwise......


And a James Lind partnership is all very wellin theory, as long as they dont use AFME to represent the 'patient' part of the partnership... like they usually do.

We'll see.

I dont want to be negative, but am heartily sick of getting my hopes up only to discover it was nothing more than flowery words & that things will be the same or worse than they were before. Dont trust the CMRC as far as i could throw em, despite having some great individuals involved.

As @Jonathan Edwards says, if the biobank team etc were to become involved then i'd feel encouraged.
But for now I'm afraid I'll just wait & see. I dont like sucker punches, so i'll stay wary.

 

Yes, after all, the only reason they accept any biological mechanism is for a plausible explanation of cluster outbreaks that precede our 'abnormal illness behaviour'.

With tongue firmly in cheek, I suggest there is a place where she would bring the University a competitive advantage...

 

Someone once said all warfare is based on deception. I won't believe in this being a positive change until the changes are made and galvanized. AFAIK the child currently under threat of being taken away is still under threat because of failure to improve and blamed as no medical reason for not improving. I also think reparations are in order for those who have been sectioned (correct word), especially in the recent past.

 

I'm somewhat more optimistic, albeit for cynical reasons. The simple fact is that if a biological treatment was found tomorrow (say, for example, that the Rituximab trial had been a gigantic success) then I think they would simply fade away. That was exactly the case for stomach ulcers - you don't find those who promoted the stress theory fighting a rearguard action to undermine the Pylori theory. My cynicism says that there is precisely 0% damage to the career of somebody who claims an illness is psychogenic in nature if that claim is subsequently found to be false. And with BPS as a theory giving enough wriggle room ('We only said psychology was a factor!") I imagine they would quietly move on to other things whilst retaining plausible deniability. Indeed, I think that is gradually happening - my personal theory* is that the SMILE trial would never have seen the light of day if Bristol Uni hadn't signed up to #AllTrials.

(*Entirely unevidenced, if any libel lawyers are reading this...)

 

I can't find anything on Bristols various sites but have contacted Lorna at the Bristol Cable to see if she knows/can find out anything.

 

The ME Association has done a writeup:
The CFS/ME Research Collaborative (CMRC) Announces Major Change in Policy and New Deputy Chair

 

Some bad news to temper the excitement: Dr Neil Harrison is a researcher on the MRC's new £662,000 'functional' study: 'A Unified Mechanism for Functional Neurological Symptoms'. That doesn't bode well. I hope this isn't a stitch up to replace the old model with a 'functional' one that still results in the same thing: CBT and GET.

http://gtr.rcuk.ac.uk/projects?ref=MR/M02363X/1

 

Additionally, the charity Invest in ME Research published a proposal in 2010 for a UK Centre of Excellence for research and treatment of ME with the hub in East Anglia, where the The Genome Analysis Centre (now called Earlham Institute) is among the facilities at Norwich Research Park, and is progressing this.
http://www.investinme.org/research-centre.shtml

 

I met Chris Ponting briefly at the Scot Parl event. Was v impressed, I'd say he gets our predicament. I am happy to have him involved in ME research. I am trying hard to be hopeful, I see Esther's 'standing down' as the boil being lanced, though the proof will be in the pudding. (By predicament I mean harms done to us, am brain-fogged, can't think of right word.)

 

Yes, agree, I read Dr Harrison's profile, alarm bells...

 

He has about 4,000 words on the Mental Elf where it's clear he's neither - continuing to praise PACE, even when people with a tenth of his academic training are shouting its problems in his face.

 

That's the crux, change has to start somewhere, the harms done to us over decades will not be undone in one fell swoop, I think evolve is a good word, but, like many, I remain cynical - but I also am trying to be quietly hopeful. Agree that the BPS cult will not go quietly, that is evident the way they continue to cling to the smouldering wreckage of PACE, with total lack of self-awareness at the crassness of it all.

 

Isn't Mark Edwards who is already on CMRC PI on that same study too?

 

This was the 2015 ME Association report on the PEM study being undertaken by Prof. Mark J Edwards and Dr Neil Harrison - both CMRC members. It includes the comments the study attracted from Prof. Jonathan Edwards at the time:

http://www.meassociation.org.uk/201...es-new-neuroimaging-research-16-october-2015/

I'm still not sure if this is the same study as you have commented on above. I can't seem to link them together but will try and find out more.

Russ

 

What I find odd about CMRC are how few people part of it are actually doing biomedical research or otherwise involved in the field. So Holgate hasn't done research for a long time, parry just did odd post mortem stuff, Chris pointing , does he actually do CFS research or care? Crawley mainly epidemiology and behaviour. Pariante is mainly a depression researcher. The funders sit in but don't give us money, the SMC attend but perpetuate the CBT model in the press

The main actual CFS biomedical researchers in the uk have been Bansal, the UEA gut Drs, Julia Newton, now left, the new Oxford researchers , the biobank researchers... none there.

Arthritis uk label is on the logo, but I dont really see what ME has to do With arthritis to that extent.

To me you can get together whoever has vague interest but without funds pumping into the field to establish it, it's not getting anywhere. I hope these people now part of it do make applications or get funding given, again putting NIHR, welcome and MRC on the logo is ironic more than anything given the low funding situation. I guess getting new people in is the raison d'etre maybe they can now, would the MRC have been content with this speed progress for dementia or hiv though, I doubt it.

 

I too am very concerned about SW's apparent magical powers to remain untainted by his BPS and PACE Trial support.

I was very un-nerved to see him as an author on a 2005 paper about HLAs and CFS predisposition.

"Association of chronic fatigue syndrome with human leucocyte antigen class II alleles"
J Smith, E L Fritz, J R Kerr, A J Cleare, S Wessely, D L Mattey


J Clin Pathol 2005;58:860–863. doi: 10.1136/jcp.2004.022681


Background: A genetic component to the development of chronic fatigue syndrome (CFS) has been proposed, and a possible association between human leucocyte antigen (HLA) class II antigens and chronic fatigue immune dysfunction has been shown in some, but not all, studies.

Aims: To investigate the role of HLA class II antigens in CFS.

Methods: Forty nine patients with CFS were genotyped for the HLA-DRB1, HLA-DQA1, and HLA-DQB1 alleles and the frequency of these alleles was compared with a control group comprising 102 normal individuals from the UK.
All patients and controls were from the same region of England and, apart fromtwo patients, were white.

Results: Analysis by 262 contingency tables revealed an increased frequency of HLA-DQA1*01 alleles in patients with CFS (51.0% v 35%; odds ratio (OR), 1.93; p = 0.008).
HLA-DQB1*06 was also increased in the patients with CFS (30.2% v 20.0%; OR, 1.73, p = 0.052).

Only the association between HLADQA1*01 and CFS was significant in logistic regression models containing HLA-DQA1*01 and HLADRQB1*
06, and this was independent of HLA-DRB1 alleles.

There was a decreased expression of HLADRB1*11 in CFS, although this association disappeared after correction for multiple comparisons.

Conclusions: CFS may be associated with HLA-DQA1*01, although a role for other genes in linkage disequilibrium cannot be ruled out.

Chronic fatigue syndrome (CFS) is a complex illness that affects approximately 0.2–0.7% of people in the West. It affects more women than men with an onset usually between 30 and 40 years of age. "

So will he use this type of stuff as his wiggle room?