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

[JemPD]

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.

CP to be leading - from the minutes that's Carmine Pariante? If so we're out of the frying pan into the fire. Or even worse. Initially I was happy that EC was going, but now I'm even more worried than if she'd stayed.

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.

 

[Luther Blissett]

It's undoubtedly far, far better but "biological mechanisms that underpin CFS/M.E." still leaves more wiggle room for the BPSers than I'd like.

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'.

I am wondering if she has taken up a position as head of research and development or clinical trials? Or even Dean?

I'd have thought a sideways promotion might appeal to Bristol Uni - something to get EC out of the limelight and stop embarrassing them, maybe even try and stop her pulling them down the plughole after her.

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

 

[Alvin]

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.

 

[Sean]

After completing a five-year term of office as Deputy Chair, Prof Esther Crawley (Bristol University) will be standing down from this position and, due to a change in her role at the university, from the Board itself. Chair, Prof Stephen Holgate stated “We are immensely grateful to the hard work and commitment that Esther has provided to the CMRC and wish her the very best in her new role at Bristol University.”

Good riddance.

I hope the AfME are suitably ashamed of themselves for their role in enabling Crawley's assault on patients, especially children. Though I doubt it.

And excuse me if I remain skeptical about these changes until proven. Anybody who thinks the BPS cult will quietly go away has not been paying attention. They will have to be dynamited out of their power.

In fairness, these (apparent) changes are what you would expect when things start evolving in the right direction. But we shall see...

 

[Londinium]

Anybody who thinks the BPS cult will quietly go away has not been paying attention. They will have to be dynamited out of their power.

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...)

 

[Sly Saint]

Has Bristol mentioned anything about whatever "new role" she purportedly has?

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.

 

[NelliePledge]

It is concerning about the linking up even more closely with BACME. Presumably the presence of G Murphy on the committee is what’s driving this.

If the “specialist clinic” network wasn’t being superceded by MUS approach sending “CFS/ME” patients to generic pain services I could just about see a point to taking over BACME. Kind of like buying a decrepit bungalow because you want to knock it down and build a new property on the plot. Unfortunately it turns out to be a leasehold and MUS has already acquired the freehold.

I can see why BACME would want to try to be seen as open to biomedical side to keep themselves in jobs. I also recognise that there are a handful of people in one or two of these teams who at least are providing some basic support to patients by writing letters , some useful OT adaptations etc, one or two clinics actually have active involvement of a doctor but this is very much the exception.

Even if willing Is BACME capable of achieving any change from the inside it seems unlikely otherwise this slightly better approach would be in every clinic. And I believe a lot of work has been put in by patients in east anglia to try to get a service upgrade that simply has failed to materialise. I think that bungalow is falling down because the freeholder is undermining the foundations. And has planning permission for a block of flats.

 

[Kalliope]

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

 

[adambeyoncelowe]

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

 

[Awol]

And I believe a lot of work has been put in by patients in east anglia to try to get a service upgrade that simply has failed to materialise.

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

 

[Guest 102]

"Prof Chris Ponting (Section Head, Biomedical Genomics, Chair of Medical Bioinformatics MRC/University of Edinburgh) has been elected by the Board to replace Prof Crawley."

Ooh! Ooh!

He looks very impressive as a scientist and I like the things he says about patients. He was one of the speakers at the showing of Unrest at the Scottish Parliament in January and said this:



And here he is last June, sticking a bit of a boot into GETSET in the SMC press release.

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.)

 

[Sean]

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.

I expect Wessely in particular to be able to come out of this looking okay. He has managed to portray himself as both the victim and hero of the story so far, despite being neither, and being lavishly rewarded for it all.

Just goes to show the power of political patronage, sophistry, and sheer lack of shame.

So we must make sure he doesn't get away with it.

 

[Guest 102]

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

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

 

[Sasha]

I expect Wessely in particular to be able to come out of this looking okay. He has managed to portray himself as both the victim and hero of the story so far, despite being neither.

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.

 

[Guest 102]

Good riddance.

I hope the AfME are suitably ashamed of themselves for their role in enabling Crawley's assault on patients, especially children. Though I doubt it.

And excuse me if I remain skeptical about these changes until proven. Anybody who thinks the BPS cult will quietly go away has not been paying attention. They will have to be dynamited out of their power.

In fairness, these (apparent) changes are what you would expect when things start evolving in the right direction. But we shall see...

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.

 

[MEMarge]

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

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

 

[Russell Fleming]

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

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

 

[Cinders66]

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.

 

[NelliePledge]

Apologies if I’m getting mixed up is G Murphy one of the PACE authors? If so what would be doing now if the CMRC is going biomedical?

 

[janice]

I expect Wessely in particular to be able to come out of this looking okay. He has managed to portray himself as both the victim and hero of the story so far, despite being neither, and being lavishly rewarded for it all.

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?