CMRC 2016: Preliminary details

[Seanko]

The largest conference of British ME/CFS researchers has been provisionally arranged for October 2016 in Southampton.

The CFS/M.E. Research Collaborative (CMRC) consists of the largest UK ME/CFS charities, Wellcome Trust & the main public bodies which fund medical research (the Medical Research Council (MRC) & National Institute for Health Research (NIHR))
Possible sessions include:

Omics/big data • Systems approach • Name/criteria • Phenotyping • Treatment • Functional neuro-imaging • Microbiome • Children and young people • UK Grand Challenge

The following people will be approached to attend: Francis Collins (NIH), Leonard Jason, Mark Van Ness, Alan Light, Jason Ellis, Susan Vernon.

Draft Minutes of latest CMRC Meeting

[bimg=no-lightbox]http://www.meresearch.org.uk/wp-content/uploads/2013/07/collaborative-logo.jpg[/bimg]

 

[Cort]

The largest conference of British ME/CFS researchers has been provisionally arranged for October 2016 in Southampton.

The CFS/M.E. Research Collaborative (CMRC) consists of the largest UK ME/CFS charities, Wellcome Trust & the main public bodies which fund medical research (the Medical Research Council (MRC) & National Institute for Health Research (NIHR))
Possible sessions include:

Omics/big data • Systems approach • Name/criteria • Phenotyping • Treatment • Functional neuro-imaging • Microbiome • Children and young people • UK Grand Challenge

The following people will be approached to attend: Francis Collins (NIH), Leonard Jason, Mark Van Ness, Alan Light, Jason Ellis, Susan Vernon.

Draft Minutes of latest CMRC Meeting

[bimg=no-lightbox]http://www.meresearch.org.uk/wp-content/uploads/2013/07/collaborative-logo.jpg[/bimg]

Cool! The Brits have pulled themselves up by their bootstraps better than anyone. We in the U.S. can really learn from there.

 

[Seanko]

Cool! The Brits have pulled themselves up by their bootstraps better than anyone. We in the U.S. can really learn from there.

Things are slowly coming together, still a lot of politics (& egos) to sort out.

You will see in the minutes mention of the "UK Grand Challenge". It would be a major (gen)omics study. The major players who could possibly fund it, the MRC & Wellcome Trust, are being sounded out.

A meeting is scheduled for 13-14 April in Bristol for interested parties. Will post more details once they are made public.

[article] Grand Challenge
The meeting will take place on 13-14 April in Bristol, There is an exciting
list of experts, many from outside the ME/CFS field, attending the
meeting, to design the grant. Preliminary thoughts are that the study will
recruit > 10,000 participants for detailed phenotyping and genetic
analyses whilst collecting samples for future omic studies. An outline
grant will be submitted in September 2016. Once confirmations have
been received, a list will be shared on the Action for M.E. website. EC will
follow up confirmations.
Meetings with Wellcome Trust MRC to be held to discuss a potential
application. Then meeting with MRC to discuss additional opportunities
for funding
[/article]

 

[weyland]

The Brits have pulled themselves up by their bootstraps better than anyone.

The idea for this type of collaborative approach was first put forward at a 1978 symposium on ME. Only took them 38 years to start tugging at those boots.

We in the U.S. can really learn from there.

I hope not. There are some really unsavory characters involved in this collaborative.

 

[Seanko]

@weyland The work of the CMRC is quietly encouraging. It is dominated by respected biomedical scientists such as Prof Julia Newton, they are good people.

Last year the keynote speaker was Dr Jose Montoya of Stanford University. A very savoury character.
Here is his speech from October 2015

 

[weyland]

It is dominated by respected biomedical scientists such as Prof Julia Newton, they are good people.

And it's vice-chaired by Ester Crawley who very recently showed with her latest "research" that she has no clue what ME or CFS even is. The involvement of King's College psychiatrists, the SMC, and questionable charities such as AfME/AYME are troubling. I really hope the good biomedical members can drown out all the bad.

 

[Seanko]

@weyland Do you live in the UK?

 

[Empty]

And it's vice-chaired by Ester Crawley who very recently showed with her latest "research" that she has no clue what ME or CFS even is. The involvement of King's College psychiatrists, the SMC, and questionable charities such as AfME/AYME are troubling. I really hope the good biomedical members can drown out all the bad.

Thanks for that info.
Outrageous isn't it.

 

[weyland]

@weyland Do you live in the UK?

No, I'm in the US.

 

[weyland]

Outrageous isn't it.

It gets better. Dr. Crawley is now the principal investigator of a new trial for GET on paediatric ME patients. This woman is a monster and has no business being so heavily involved in serious study on ME or this collaborative.

 

[Empty]

It gets better. Dr. Crawley is now the principal investigator of a new trial for GET on paediatric ME patients. This woman is a monster and has no business being so heavily involved in serious study on ME or this collaborative.

Yes, I was just reading about this now. Something fundamentally wrong in the system to allow this to happen. Someone on another board suggested Charities could advertise to warn parents and the Children about this study, so they may make a fully informed choice about whether or not to participate as it is riddled with lies. I think this is sensible advice. Presumably this would be the clean Charities.

 

[Seanko]

@weyland Firstly thanks for your interest in what happens in the UK. Like nearly everybody else here I want to see the money go to the likes of Dr Mark Edwards or Prof Julia Newton rather than another observational study by Esther Crawley which proves nothing.

I would encourage you to read the literature & minutes yourself rather than rely on hearsay which becomes more exaggerated with every re-telling.

 

[Seanko]

@weyland Regarding King's College Psychiatrists, Simon Wessely has never been part of the CMRC, he has given up on ME/CFS research although it hasn't stopped him offering his opinions! Neither is his colleague at KCL Trudie Chalder involved in the CMRC.

Peter White of PACE fame flounced out & resigned when he found himself marginalised last year & outnumbered by biomedical members. He works at Queen Mary University in London.

 

[Seanko]

@weyland Re: the Science Media Centre (SMC), it is simply a news agency like Reuters or The Press Association used by the likes of Peter White to promote his work.

I have told the main ME/CFS charities it is up to them to do better to promote the work of Julia Newton & Mark Edwards in the UK & the impressive work of Lipkin/Hornig/Montoya in the US and Fluge/Mella in Norway. The charity running the UK Rituximab trail (Invest in ME) at University College london (UCL)has not managed to get the story covered in the British media which is very disappointing.

The charities need to cultivate science & health writers in the London media better, there are not that many to be honest.

 

[weyland]

Firstly thanks for your interest in what happens in the UK.

While my heart bleeds for all of the neglected ME patients in the UK, my interest is of course not purely selfless. Research from the UK does have an impact on the portrayal of the disease in my country. Crawley's damaging new "research" has already received media coverage here in Forbes and Newsweek. And I can already see headlines now when her new GET study is published in a few years showing that it magically cures chronically fatigued pediatric patients. If this is a sign of things to come from the CMRC you can understand why people would be concerned. We don't need more research on GET and we don't need more research conflating ME with chronic fatigue.

Regarding King's College Psychiatrists, Simon Wessely has never been part of the CMRC, he has given up on ME/CFS research although it hasn't stopped him offering his opinions! Neither is his colleague at KCL Trudie Chalder involved in the CMRC.

I'm not talking about them, though as I'm sure you know Simon Wessely was consulted by Professor Holgate when setting up the collaborative. It would be naive to think it's beyond his influence.

I was speaking about Carmine Pariante who attended the meeting on the 15th.

Re: the Science Media Centre (SMC), it is simply a news agency like Reuters or The Press Association used by the likes of Peter White to promote his work.

That's fine and all, but why did they have to send their mental health press manager Ed Sykes to the meeting? Surely the SMC has someone who is more geared towards biomedical research, not psychiatry.

The charities need to cultivate science & health writers in the London media better, there are not that many to be honest.

I agree, the charities have remained mostly spineless and toothless. Dr. Shepard of the MEA and Jane Colby of the Tymes Trust are the only two people who have been outspoken in battling the overwhelmingly negative media coverage. It's going to take more than two people (who are both patients themselves) to battle this and improve things.

 

[Seanko]

@weyland There's a lot of stuff you've covered. What I can do is share the stuff I've found & let you make you make up your own mind. Health politics is a murky area with lots of self serving individuals & egos involved.

Found something which you might find interesting. It's a slightly outdated list of ME/CFS studies funded by the Medical Research Council in recent years (post PACE approval).

Recent MRC funded ME/CFS studies

If you have a look you will see the kind of biomedical stuff you would wish to see

You wiil see that Carmine Pariente of KCL had a project entitled "Persistent Fatigue Induced by Interferon-alpha: A New Immunological Model for Chronic Fatigue Syndrome". It measured cytokines & other biomarkers.

Also check out his biography at KCL. You will see he is probably more of a neurologist/neuroscientist than a psychiatrist. He certainly is not a CBT/GET disciple. He has close links to Wellcome Trust, which is never a bad thing.

Biography of Carmine Pariente at KCL

 

[Seanko]

Re: Simon Wessely. I am sure he does phone up and meet people to have his say in private. He is hedging his bets these days. I predict if Hornig/Lipkin/Montoya/Newton et al find definitive biomarkers soon, he will shamelessly say that is what he said all along!

 

[Seanko]

Re: Esther Crawley. She does not seem to get her research cash directly from the MRC ME/CFS pot. Guessing the money may come from a separate paediatric pool of money. I will endeavour to find out.

Having seen her on Youtube, she comes across as young-ish & pleasant, which is maybe she has devastating effect on ageing male health funding committees...

 

[weyland]

If you have a look you will see the kind of biomedical stuff you would wish to see

Julia Newton is one of the only researchers I have seen in the UK that is doing useful biomedical research on ME. Most of the stuff on that list is tangential fatigue research which I don't find terribly interesting or useful. Fatigue is a symptom of all chronic illness. It would be much more interesting to find out what is behind the rapid muscle weakness, metabolic abnormalities, and devastating autonomic dysfunction we suffer from. Newton appears to be one of the only people studying this specifically and it's good to see that she was awarded the most funding of anyone on that list. The McArdle research looks pretty interesting too, hopefully that gets published at some point.

 

[weyland]

Guessing the money may come from a separate paediatric pool of money. I will endeavour to find out.

I forget which project it was but I believe at least one of them was funded by NIHR. I imagine because she is studying children she gets more sympathy points and better access to broad funding.