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

A.B.

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Anyone considering supporting this should wait for answers to at least these questions:

Will raw data be published?

How will the patient advisors be selected?

How will patient advisors be able influence study design and interpretation of results?

What will be measured, and how will it be measured?

What role do White and Crawley play in this study?

How will participants be selected and recuited?

Are the other authors aware of Peter White's role in the PACE trial, how he engaged in fraud and other forms of unaceptable behaviour detrimental to science and patients? http://www.virology.ws/2016/09/21/no-recovery-in-pace-trial-new-analysis-finds/

Are the other authors aware of patient concerns over Crawley? http://blogs.plos.org/mindthebrain/...tigue-syndrome-study-issues-to-be-considered/

I think that this could be a good opportunity for patients to show that major change is needed in the UK, not just gradual improvement. Past problems need to be acknowledged, and those responsible for them need to be held accountable.
Exactly.
 

user9876

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I just tried to listen to George Davey Smith's presentation but couldn't hear it very well and was lying down so couldn't see his slides. He addressed the issue of wide criteria and was arguing for wide criteria but on what sounded like an interesting basis. He's a world-renowned epidemiologist, not someone with a psychiatric agenda, and I'd like to understand his view. I think we need to get away from our assumption that wide criteria must be bad because they have been used badly in the past. Omics and large numbers brings in possible advantages to wide criteria, I think, in terms of subgrouping - but I'd like to understand more about the issues.
I think sub-grouping may be important, and having wide criteria can be good here. It all depends on having a sufficiently large sample to make inferences about different subgroups. If they have wide criteria they need the pieces necessary to subtype and I think its also important to have sufficient severe patients. So I think they are proposing very large numbers so having wide criteria seems like a good idea as long as they ensure a good sample across possible subgroups.

What would worry me about criteria is if they include 'fatigue' including people with other diseases that cause fatigue. I assume they are not doing this but I didn't hear the talk.
 

user9876

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To be honest, I think this is our opportunity to flush the rats out of this study. With all the harm that White and Crawley have inflicted on patients, why should we tolerate them leeching off of this study? If they are not got rid of they'll just continue preying on patients in the same way that they have already.
I wonder if they include White to help it get through any MRC review process where psychs may give bad reviews otherwise.
 

AndyPR

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Guiding the lifeboats to safer waters.
Also, consider that they are making noises about patient interaction and asking for patient support in order that this goes ahead - where was the patient involvement before they announced the petition? They obviously don't have any appreciation of what the involvement of White and Crawley would mean to a lot of us, all they had to do was either 1. ensure that they weren't involved at all, which would be my obvious preference or 2. explain to us how they wouldn't be involved in the science, although what exactly they would be doing then I have no clue.
 

Kati

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If Peter White cared about the ME community, he would resign from this research group and take his full retirement and beg Lancet to retract PACE trial. He has expertise in fraud and conflicts of interest. He is not a ME expert and has no knowlege of biomedical research and Criterias other than Oxford.

I do not give my support unless he and his collaborators go
Giving support with him included is to accept PACE trial as objective evidence that CBT and GEt are main treatments for ME.
 
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Denise

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"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."

If I were to support a research project I would want to see the protocol/details first before I said I lent my support to it.

Seeing some of the people involved with this project, I would REALLY want to see details before I even thought about supporting it....
 

BurnA

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I'd much rather have this than not - a 12,000-strong omics project into to my much neglected disease gets my vote.
We'd all like a great omics study done but this isn't the one for me.

There is no way I can support a study with those people involved.

There should be a charter signed by all researchers involved in ME which explicitly recognises that the psychological approach including CBT and GET is flawed and has no place in ME research. Proper researchers should have no problem signing it and it should flush out the psychobabblers.
 

Sidereal

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I can't possibly support this study. White and Crawley publish very low quality research and promote extremely pernicious quackery (GET) which continues to endanger patients on a daily basis. I would encourage everyone to shun this petition and to campaign instead for their removal from this project and from any publicly funded ME/CFS research for that matter.
 

Denise

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If I were to support a research project I would want to see the protocol/details first before I said I lent my support to it.

Seeing some of the people involved with this project, I would REALLY want to see details before I even thought about supporting it....
Even seeing the details/protocol ahead of time might not be enough given that "some people" have been known to change protocols, outcome measures, etc along the way.
 

Ben H

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But we need a broad criteria to identify subgroups. I realise the concern with broad criteria is that it could include people who do not really have ME, but the purpose of this study is to enable us to objectively distinguish between differing groups and ultimately do away with the debate over criteria altogether.
We need good science to identify subgroups, not broad criteria.

The current broad and multiple criteria are only around because of a lack of a biomarker. Subgroups may be explainable by genetics as Dr Davis is looking into.

The studies to be done with Naviaux comparing metabolomics in ME/CFS and depression etc are what we need.

Using weak and broad criteria in a study like this with certain people involved is, to me, a disaster waiting to happen.

Ditch Crawley and White. Reach out to Dr Davis and Dr Naviaux (as foremost experts on metabolomics) for guidance and they have my signature (along with disclosure of study plans as @A.B. mentioned).

Im all for a study like this. But it needs to be done in the right way, with the right people.


B
 
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TiredSam

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If they can't do better than this I would rather look to other countries for research hope. If the UK can't flush out the filth then they deserve to become a laughing stock. If the BPS clowns aren't involved in the science (and they can't be because they don't understand it) then their self-appointed role will of course be politics and spin.

Watching us take down the PACE trial and laughing into their sleeves because they've got their fingers well into this pie and can carry on earning and manipulating regardless. I don't think so.
 

TiredSam

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Well how's this for a plan - at the moment there are only 10 comments on the petition. if a few of our more articulate and well-informed opponents of BPS involvement were to sign the petition purely so that they would then have the ability to comment, those few votes here or there would make little difference to the end total, but the ability to comment could be used to warn/inform others thinking of signing or who had already signed.
 

Denise

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Well how's this for a plan - at the moment there are only 10 comments on the petition. if a few of our more articulate and well-informed opponents of BPS involvement were to sign the petition purely so that they would then have the ability to comment, those few votes here or there would make little difference to the end total, but the ability to comment could be used to warn/inform others thinking of signing or who had already signed.

I suspect the comments would likely be deleted.
I wonder if getting the word out on social media would be worthwhile.
Something to the effect of "Have you seen this? Before you sign it, consider the following: .........."
 

Mrs Sowester

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Is this one of the petitions where you get to say why you are signing?
How about signing but stating something along the lines of "My support is on the condition that White and Crawley have no part in this study - they are responsible for terrible harms on our community of adults and children with ME and have no place in this fantastic study"