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

ukxmrv

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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.
We can always do a counter petition with the changes we would like made
 

Yogi

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It won't work because PACE has been exposed as fraud. It is the MEGA team that needs to demonstrate that they can be taken seriously. Simple as that. We do need to make sure that patients are aware of criticism.
I agree it won't work as things have moved on alot in the last year. But this grand scheme was cooked up around 3 years ago with the SMC/CMRC launch.
 

TiredSam

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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.
Oh the Wellcome Trust. Who house the SMC. Who award their bookprize to Suzanne O'Sullivan for "It's all in your Head". Just when I thought things couldn't get any smellier.

Our good friends would never try another PACE type stunt would they?
 

AndyPR

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Guiding the lifeboats to safer waters.
AfME on their Facebook post, so far, have only responded to the question "Are White and Chalder involved?" with
Prof White is yes, Trudie Chalder is not. The other scientists are from outside the field of M.E./CFS and bring expertise in from a range of backgrounds.
So at the very least that would seem to confirm that White is seen as the expert in ME...:rofl::rofl:
 

Simon

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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 understand that this is becoming increasingly important in securing funds, and that's why MEGA are taking this approach. It will be a lot of work and they'll get flak for it (as evidenced by this thread) and they wouldn't be doing this if it wasn't likely to help get funds.

Plus, this looks to me like a good reason to petition UK funders to finally put some serious money into mecfs research. I do share some of the concerns set out so far, but overall I think it's a good thing and I have signed.

I'd much rather have this than not - a 12,000-strong omics project into to my much neglected disease gets my vote.
 

Cinders66

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I don't think petitions should influence individual project funding decisions
Me research U.K. Have said they need to demonstrate they can access a lot of willing patients to do the study to get the money...but given the MRC CFS history (exactly where are they in this PACE scrutiny? ) patients are going to be reluctant to throw their name behind whatever's asked.

I think there's been discussion on here before on breadth vs depth. Can anybody say if studying 12,000, if a lot of them have fatigue according to Crawley, will benefit pwICC ME much?

I won't sign anything without info such as criteria planned, role of those named,more type of testing planned and whether the severe are to be included etc. I will read the opinions of those who can judge the merits. Then I will decide if I will endorse it, loathe as I will to with white involved.

They would do this AFAIC to get patient backing for something that turns out not so sweet deal in the end for patients?
 

JohnCB

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Like many, I am afraid of history repeating. I recall the pressure that was mounting for ME research in the UK. Then the MRC said that they would make sure that some money went to good quality proposals. Then what happened? Pace was announced and there was no more money forthcoming. This is where we are now, more than a decade later. I don't know about you, but I want to scream.
 

eafw

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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.
This is very, very disappointing stuff. Crawley and White should be being shunned by any serious researcher or research group, not invited to join in. Why not add in a few homeopaths, crystal healers and flat-earthers for good measure too ?
 

Snowdrop

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This is the worst possible scenario. Giving those who would harm patients the chance to be whitewashed into shiny new researchers riding coat-tails of integrity of others. How does this happen?

I do not (even a little bit) understand the thinking in doing this. It completely invalidates all of the hard work of advocacy being done.
There may be the excuse that 'that's just how things are done' but that doesn't come anywhere near good enough. They're only done that way til they're not. Momentum of bad practice is no excuse.

Alternatively they can sign a document stating that ME is a chronic illness that is physiological in nature is not amenable to GET/CBT and is not about false illness beliefs. How about all bonafide ME researchers be required to sign up. We can circulate the doc through advocacy channels and ask all to sign.

I am beyond tired of being forced to witness this sort of game playing with people who really ought to be in jail or at the least barred from practice and research on ME (not unreasonable they did this to Speight an actual gift to the ME community)

I don't understand the easy attitude like we need to first let them loose to do what they will before pointing out the obvious.

There are times to stand down and consider collaborating --this doesn't come close.
 
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Sasha

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Hope you don't mind, Ben, but I've brought your comment on MEGA to the MEGA thread. :)

Edit: Originally I didn't include Ben's full comment - sorry, Ben!

White and Crawley I can't sign anything my name to.
This is a high-tech omics study and they don't have the skills to contribute to its design or interpretation - that's not their area. They may be on the list, but they're in no position to have much, if any, influence.

So my question to myself now is, "Am I going to let the presence of BPS people prevent me from supporting the biggest ME/CFS biomed trial in the world? Am I really going to give them that much power?" And I suspect that my answer is going to be "no".

Ben Howell said:
Same goes for criteria used.
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.

So after a day of feeling pretty angry about being asked to show my support for a study including someone whose work has just been exposed as... I don't have the words... I'm now thinking that I don't want to continue to give them the power to continue to wreck my future. And, paradoxically, that probably means I need to say "yes" to a study on which they're listed as involved.

Just my thoughts at the moment as I digest all this.

Ben Howell said:
On the flip side im almost stunned they are talking about metabolomics, in this context, in the UK. And biomed research for ME/CFS (dependant on the criteria proposed) is unbelievably exciting for the UK.

Confused.
I think a lot of people will be.
 
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Ben H

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@Sasha

Ive added my full comment:

I'm not sure what to think at all about this.

White and Crawley I can't sign anything my name to. Same goes for criteria used. Dont want to throw the baby out with the bath water but...

On the flip side im almost stunned they are talking about metabolomics, in this context, in the UK. And biomed research for ME/CFS (dependant on the criteria proposed) is unbelievably exciting for the UK.

Confused.


B
 

Cheesus

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@Sasha

Ive added my full comment:

I'm not sure what to think at all about this.

White and Crawley I can't sign anything my name to. Same goes for criteria used. Dont want to throw the baby out with the bath water but...

On the flip side im almost stunned they are talking about metabolomics, in this context, in the UK. And biomed research for ME/CFS (dependant on the criteria proposed) is unbelievably exciting for the UK.

Confused.


B
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.
 

Sasha

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In the world of research, George Davey Smith is a giant and Peter White... isn't. I'm sure that when that group sits around the table in planning meetings, everyone is extremely well aware of that. And as the PACE scandal grows and grows, it's likely to become hard for him to even show up and look the proper scientists at that table in the eye.
 

Esther12

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We can always do a counter petition with the changes we would like made
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. White, Crawley, Collin... these people have promoted indefensible quackery, and that's not something that should be ignored.

With PACE seemingly crumbling, SMILE hidden away somewhere, and MAGENTA attracting controversy, this could be a good time to hammer home that many of those seen as top 'experts' for CFS should not be respected. They've turned ME/CFS into a bigoted quack-fest in the UK and we shouldn't be expected to pretend otherwise. If they want to try to use funding for this research to push patients into signing up to support these researchers, I think we should call them on it.

What would be a good way to let people make it clear that they do not support calls for further funding to be provided to researchers who have misrepresented the evidence in the harmful ways that White, Crawley and Collins have?

We could try to draft something here? What's a good way of doing petitions?