UK ME/CFS Research Collaborative (CMRC) Annual Science Conference 2016

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I am seeing a repeat of Dr Patrick talk at the moment? I didn't get to see most of Dr Zaher Nahle's talk?
I hope I can view the Prof George Davy Smith one.....fingers crossed. Or I guess I'll catch the YouTube stuff later?
 

AndyPR

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I am seeing a repeat of Dr Patrick talk at the moment? I didn't get to see most of Dr Zaher Nahle's talk?
I hope I can view the Prof George Davy Smith one.....fingers crossed. Or I guess I'll catch the YouTube stuff later?
It doesn't appear to be live streaming, it's just 20 odd minutes of Dr Patrick and the very start of Dr Nahle.

ETA: If it's Dr Nahle's they aren't showing then they do seem to be behind schedule (unless I'm reading the schedule wrong).
 

user9876

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Can someone confirm? Stephen Holgate said the MEGA study will use "broad criteria".
As Crawley is involved in this that wouldn't be a surprise, unfortunately...
I think if you are testing large numbers using broad criteria is ok as long as you have other criteria as well then you can look at the data from various perspectives. The real issue to me is comorbid illnesses which may lead to misleading results.
 
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Please note the web link to the livestream has now moved over to a new channel at http://www.ustream.tv/channel/TwL4nrrtvZ2

This is due to technical difficulties, but hopefully there will be no more of these - huge apologies for the problems this has caused with viewing.

Recordings of all the livestreamed presentations will be uploaded to YouTube as soon as possible after the event as well.

Prof George Davey Smith is about to start his presentation now.
 

Yogi

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Exhausted from yesterday and wondering if this will be worth watching.

I cannot ignore the fact that AFME Sonya Chowdhury are organising it along with Esther Crawley (chair of CMRC and did SMILE and doing MAGENTA and responsible for false allegations of death threats), AYME Mary Jane Willows (who's med adviser is Crawley) and support of MAGENTA, Julius Bourke (psychiatrist at QMUL) doing new AFME funded study with discredited PACE's Peter White, and involved a number of people involved with Science Media Centre who have not apologised for false death threat militant allegations and organised by Stephen Holgate who signed letter supporting Simple Wessely Standing up for science award from SAS against the "harassment"by Countess of Mar, Prof Hooper and Dr Weir of exposing PACE.

There are some good people here but really worried about this that no good can come out of it.

Sorry trying to be positive and ignore these facts but just can't!
 

TiredSam

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MEGA is Prof George Davey-Smith, University of Bristol; Prof Chris Ponting, University of Edinburgh; Prof Colin Smith, University of Brighton; Prof Caroline Relton, University of Bristol; Tony Bartlett, Somalogic; Dr Rick Dunn, University of Birmingham; Prof Julia Newton, University of Newcastle; Sonya Chowdhury, Action for M.E., representing the patient charity members of the UK CFS/M.E. Research Collaborative Board; Prof Andrew Morris, University of Edinburgh; Dr Simon Collin, University of Bristol; Prof David Ford, Swansea University; Dr Esther Crawley, University of Bristol; Prof Paul Moss, University of Birmingham; Prof Peter White, Queen Mary University London; Prof Jim Horne, Loughborough University; Prof Maria Fitzgerald, University College London; and Prof Paul Little, University of Southampton.
Peter White's name in that lot. I don't trust this one little bit. The number of biological keywords in that petition text make me feel like I'm being duped into supporting something I'll regret. Too many dodgy characters. No way.
 

Cinders66

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I'm 100% opposed to anything using Oxford criteria, which is where they seem to be going with this. This should be about ME/CFS, not fatigue.

My concern too. Just as it sounds impressive to have so many NHS clinics Until you realise that they're generally non medical , focused mainly on rehab and don't extend their care to the entrenched or severe. Ie ME isn't getting well served after all. Also like the £400,000 CFS money that actually mainly went to study a well defined Sjogrens group to find a bio marker for "fatigue"

I'm afraid I will never agree with the broad brush fatigue spectrum approach to helping those of us with the profoundly life altering ME. We might get a bit of benefit from this but much of the numbers won't be from us but from Esther Crawley type I'm tired a lot , much of the money won't be going on understanding us except from where we might stand in this uk fatigue spectrum, maybe the science underlying will be furthers a bit too.

I'm not saying it's worthless but I do think the significant population with ME need to keep lobbying for multiple research projects funded in U.K. And for recognition of our illness & stricter criteria use as Ron Davis and Profs MELLA etc are perfectly happy doing.
 

Sasha

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I don't know who is advising that group on the patient side but to launch this, listing Peter White and Esther Crawley as co-investigators when the PACE data has just been released, causing the "open data" shit to hit the PACE fan, and when a "stop MAGENTA" petition has just been launched and has already gained over 2,500 signatures, is unbelievable.

It faces patients with an awful choice - and that shouldn't be the case.
 

John Mac

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Exhausted from yesterday and wondering if this will be worth watching.

I cannot ignore the fact that AFME Sonya Chowdhury are organising it along with Esther Crawley (chair of CMRC and did SMILE and doing MAGENTA and responsible for false allegations of death threats), AYME Mary Jane Willows (who's med adviser is Crawley) and support of MAGENTA, Julius Bourke (psychiatrist at QMUL) doing new AFME funded study with discredited PACE's Peter White, and involved a number of people involved with Science Media Centre who have not apologised for false death threat militant allegations and organised by Stephen Holgate who signed letter supporting Simple Wessely Standing up for science award from SAS against the "harassment"by Countess of Mar, Prof Hooper and Dr Weir of exposing PACE.
Don't forget Wessely supervised the appointees to the committee


https://www.dropbox.com/s/92m09l9tq55pihh/Behind the Scenes - Research Collaborative.pdf

Professor Holgate then emailed Professor Simon Wessely with importance marked as ‘High’ and copied only to Dr Esther Crawley of Bristol University and Joe McNamara of the MRC.

It read

•“Dear Simon, If you feel there is anything you can do to help in identifying researchers or in other ways, I would be very grateful. Thank you so much. Kind regards, Stephen.” (quote 2)

•Simon Wessely replied “First of all, it looks very good...... can’t see many ommissions (sic). I would probably sprinkle one or two scientists/researchers not particularly connected with CFS into the mix myself. Experimental psychologist perhaps, joe, do you know one?....” Simon Wessely’s suggested researchers were redacted. (quote 3)

•Stephen Holgate replied “Wow! This is terrific, Simon – thanks so much. I will add your suggested names. Kindest regards, Stephen” (quote 4)
"
 

Esther12

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"If you want research into your condition funded, you need to support quacks who have shown that they cannot be trusted and who have made your lives worse... sign here!"

Maybe they'd have got away with that pre-Tuller. We're now post-Matthees.
 

Yogi

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This does look very dodgy and a bit of a trap set up for the patient community.

Doing it via the change petition website is a clever move. They know how these pesky patients are eager to sign petitions.

If we don't sign up for it they can say hey not much support for biomedical research funding from patients. Good get out clause from them not to do biomedical research in UK.

If we do support it:

I bet the MEGA study will find as a conclusion that we turn some of our faulty genes (epigenetics) on because of our thoughts and lifestyle. Hey biomedical research is what you wanted and here it is and it shows you have biopsychosocial illness as we said all along. This work will be still helpful for the DWP and Peter Whites insurance buddies.

Now if this study goes wrong they can then say hey thousands of you asked for this by signing the petition now shut up and accept it. You been asking for biomedical research for decades and now we have done it stop moaning. We could not protest against it as we have done with PACE because we supported it.

Classic psychiatrists double bind or catch 22 that they are putting us into.
 

TiredSam

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It faces patients with an awful choice - and that shouldn't be the case.
This is not a difficult choice at all.

This does look very dodgy and a bit of a trap set up for the patient community.

Doing it via the change petition website is a clever move. They know how these pesky patients are eager to sign petitions.

If we don't sign up for it they can say hey not much support for biomedical research funding from patients. Good get out clause from them not to do biomedical research in UK.

If we do support it:

I bet the MEGA study will find as a conclusion that we turn some of our faulty genes (epigenetics) on because of our thoughts and lifestyle. Hey biomedical research is what you wanted and here it is and it shows you have biopsychosocial illness as we said all along. This work will be still helpful for the DWP and Peter Whites insurance buddies.

Now if this study goes wrong they can then say hey thousands of you asked for this by signing the petition now shut up and accept it. You been asking for biomedical research for decades and now we have done it stop moaning. We could not protest against it as we have done with PACE because we supported it.
I'm not sure it's that complicated. All they care about is that if the research threatens to go in the biological direction, they get in there first so they can keep cashing in on ME. They don't really care how, as long as they are still seen as the experts.

What skills to people like Crawley, White and Chowdhury bring to the project? An ability to follow the data, to analyse the data, to listen to patients, to respect the scientific method? What are they even doing there? As soon as Wessely had a voice in the appointments the whole thing was doomed.

This is like saying as Christmas is a time of goodwill and letting bygones be bygones, we are inviting the radio 1 DJs to the party, and Jimmy Saville is going to be Santa, after all he's worked with kids for years.

Certainly puts the choice of a wide criteria into perspective. The whole thing should be boycotted, if the good guys are getting mixed up in it then they are making a mistake.