MEGA research for M.E./CFS: White & Crawley listed as involved

AndyPR

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We are the M.E./CFS Epidemiology and Genomics Alliance (MEGA) and we want to carry out a potentially game-changing biomedical research study.

We are trying to understand more about the biology of the chronic neurological condition, Myalgic Encephalomyelitis (M.E., often diagnosed within the NHS as chronic fatigue syndrome or M.E./CFS). If we do this, we think we may be able to develop new treatments. We also think we may be able to target treatments more effectively for those that will benefit.

We are doing this by developing a research application and securing funding for a biomedical “big data” study of 12,000 men, women and children with M.E./CFS in the UK, plus healthy controls.

A “big data” study investigates, in terms of DNA, RNA and other molecules, the distinctive genetics, epigenetics, proteomics and metabolomics within a certain group, using a very large number of samples. Such studies are the latest trend in population-based scientific research and are the way to generate the most useful data and the most productive research.
A study of this scale will require considerable funding but we are not asking for your money. Instead, we are asking for your voice.

MEGA is working on putting together an application to mainstream funders to take this project forward. The first application will be submitted in January 2017 as an outline application. For this to have a high chance of success, we need evidence that patients support MEGA.

By pledging your name to back this biomedical research, you are showing mainstream research funders that MEGA has your support, and helping to persuade them that they should support it too.

Please back this potentially game-changing biomedical research for people with M.E./CFS by signing this petition to #makeitMEGA
Sounds good right? Check out who is involved
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.
Personally, I'm going to be thinking long and hard about voting for this if Crawley and White are involved.
https://www.change.org/p/support-th...-its-application-to-major-uk-research-funders
 

A.B.

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White is a fraud, Crawley is promoting quack treatments and engages in highly unethical behaviour. That they are included in the project suggests the organisers do not understand relevant key issues and are at risk of being misled with potential harm to the larger patient community.

A vote of no confidence from me. We have better projects to support.

Mind you, I am happy that there is finally recognition of the need for biologically oriented research in the UK, but with so many big data ME/CFS studies lately all trying to get our support we can afford to be picky.
 
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Cheesus

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I disagree with you guys. I don't think the inclusion of these two researchers necessarily means that the entire project is a waste. There are too many people on the project for them to easily push a psychological explanation. I think this is a positive project and we could get a lot out of it.
 

Chrisb

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Prof Paul Little's expressed interests are said to be health promotion and the management of common self limiting illnesses. These topics link evidence about effectiveness with the effect of management of people's beliefs and behaviour, better understanding the importance of the patient centred approach to the consultation.

So he shouldn't feel out of place.
 

AndyPR

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I disagree with you guys. I don't think the inclusion of these two researchers necessarily means that the entire project is a waste. There are too many people on the project for them to easily push a psychological explanation. I think this is a positive project and we could get a lot out of it.
I'm not saying that it is without value but why are they there at all? What role do they play in this study? And even if they aren't involved in any of the science, again, why are they there? And after all the harm they have caused I want to at least protest their inclusion rather than say nothing at all.
 

A.B.

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I disagree with you guys. I don't think the inclusion of these two researchers necessarily means that the entire project is a waste. There are too many people on the project for them to easily push a psychological explanation. I think this is a positive project and we could get a lot out of it.
We have seen how easy it is for them to push a psychological explanation for the last 20 years. In the UK, prestige and connections are valued so highly that researchers can spout nonsense for years without ever being called out on it. The other researchers will probably view them as accomplished CFS experts - the go to source for CFS specific information such as the best CFS definition to use, what the important symptoms are, what instruments to use to measure sickness, what PEM really means, and so on. In short: it's a recipe for disaster.
 
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Cheesus

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@A.B. and @AndyPR

These are valid points. However I have faith in Julia Newton, who also features as one of the researchers. The collection of this quantity of raw data will be absolutely invaluable and it will be difficult to spin it if all of the people working on the project have equal access to the data.
 
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I think the project must be welcome but I am surprised by this sort of canvassing for support. So far no details are available of who would do what. Surely patients are entitled to judge a project on the basis of a written application, just as scientists do. I find it hard to see why a petition of this sort should make a difference to whether a research council or the Wellcome Trust gives support.
 

AndyPR

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I think the project must be welcome but I am surprised by this sort of canvassing for support. So far no details are available of who would do what. Surely patients are entitled to judge a project on the basis of a written application, just as scientists do.
Oh, come now, we know that patients aren't capable of rational thought, all our complaints about PACE proved that! ;)
 

Cheesus

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I think the project must be welcome but I am surprised by this sort of canvassing for support. So far no details are available of who would do what. Surely patients are entitled to judge a project on the basis of a written application, just as scientists do. I find it hard to see why a petition of this sort should make a difference to whether a research council or the Wellcome Trust gives support.
I wonder if they are aiming to demonstrate a growing demand for biomedical investigation. In an ideal world medical politics and public perception should not influence decisions on where to invest money for disease investigation, but if public perception and medical politics did not influence decision-making then we wouldn't be in the mess we are currently in.

Admittedly I can't see that this would actually manage to sway the decision, but Change sometimes promotes petitions to millions of people and I would be happy for any kind of biomedical investigation to be brought to the attention of a large audience in order to establish a new understanding of ME research in public awareness.
 

A.B.

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What patients should require before consenting to participate in research…

A simple step: in deciding whether to participate in research, patients can insist that any consent form they sign contains documentation of patient involvement at all phases of the research. If there is no detailing of how patients were involved in the design of this study and how they will be involved in the interpretation, patients should consider not consenting.

Similarly, patients should consider refusing to sign consent forms that do not expressly indicate that the data will be readily available for further analyses, preferably by placing the data in a publicly accessible depository.

http://blogs.plos.org/mindthebrain/...before-consenting-to-participate-in-research/

No details on patient involvement have been given, and data sharing is not mentioned.

We are only told that
This research will be the first of its kind and MEGA is committed to meaningful engagement with people with M.E. and those that support them. This will include establishing two patient advisory groups, one for adults and one for children and young people with M.E./CFS.

Patient advisory groups are vital as they support the research team, advise on research methodology (for example, providing advice on effective methods to contact, recruit and maintain study participants), and help researchers interpret results.
Let me guess: Action for ME, traditionally on good terms with PACE, will form the adult advisory group, while AYME, aligned with Crawley, will form the young people advisory group.
 
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Cheesus

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Similarly, patients should consider refusing to sign consent forms that do not expressly indicate that the data will be readily available for further analyses, preferably by placing the data in a publicly accessible depository.
This seems to be the crucial nugget that needs to be made clear in order for us to avoid PACE-style observation bias. However I would not expect that information to be available before the research application has been submitted. I think it is worth seeing if any of our influential members such as @Jonathan Edwards or @charles shepherd were willing to write to the principle investigator and ask that the research is planned in such a way as to make it as transparent as possible, including the full publication of raw data.

Would that degree of transparency reassure the people here who have reservations about the study?
 

AndyPR

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Would that degree of transparency reassure the people here who have reservations about the study?
Sadly, not with White and Crawley still involved, but that's just my opinion, everyone needs to make their own judgement call.

A comment I just posted on the ME Associations link to the petition
But that's my point Tony, what are they [White and Crawley] doing involved in the study? If they aren't involved in the science then why are they there? And if they are involved in the science then I'm not sure I want my name associated with people who have ruined patients lives and then tried to play the victim once we started to point out the massive 'errors' that they made, and I also then start questioning the judgement of these other scientists that seem happy to be involved with them as well.
 

Sasha

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Apologies for cross-posting, but I posted this on another thread and wanted to post it here:

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.
 

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 for us 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.