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

AndyPR

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Guiding the lifeboats to safer waters.
Reasonable ideas but I suspect we get one chance to vote and I want to vote when the reasonable queries we have are answered, as I suspect that we won't get the chance to remove our vote from the total. In terms of the number of votes, like any ME petition, I expect it will surge upwards and then plateau very quickly - we've seen that kind of behaviour before.

For the moment, I think we'll have to keep plugging away on social media (those of us who are there of course) in the short term, then perhaps start using MEActions infrastructure to start highlighting the considerable concerns that we have with this - anyone can sign up and post an opinion piece or news article on the MEAction site, I'll have a think about that, I'm not sure I'd be up for that much creative writing.
 

Yogi

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We can always do a counter petition with the changes we would like made
Exactly we don't have to put up with such crap anymore. We are not beggars that they can throw some crumbs to.

We need to get the word out strongly on social media to not sign or support this. Emphasise that quack Crawley and fraudster white is involved.

This needs to be stopped and Crawley and White thrown out.

He should be nowhere near anything to do with ME or patients. In fact he should be behind bars.

InvestinME are not supporting this and have stayed away from this CMRC and for good reason and ME patients should do too.

AFME make my blood boil they do not represent me patients and are f#cking us over again as they did with PACE trial in 2003.
 
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Snowdrop

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So my question to myself now is, "Am I going to let the presence of these two 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".
They are counting on the British public who have this disease to fold their tent go home and not raise a peep.
The work looks sound on the face of it. But there is much more than the 'face of it' to consider and the stakes are pretty high.
How will it be viewed by those who have supported PwME when they see us fold on having these people in the study 'because it's a good study'
It can only be a better study without them. Withholding support brings leverage to the patient group. They can do the study without them. I see it as giving them the power to look clean as snow with a whole new look instead of the fraudsters they are. Be angry and use that to demand more than a few crumbs. Why should we not expect that this work can be done regardless of their presence.


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.
I expect his self esteem is doing just fine. I doubt he much cares what others think.

Julia Newton is in there too. She has a great deal of both clinical and research experience of ME.
Yeah, and I've heard her spout nonsense with regards to ME.

He has expertise in fraud and conflicts of interest.
Indeed. Something to consider with regards to his place in the study. Anything can look good on paper. Who's really in charge here? I mean behind the researchers. Let's dig deeper.


Maybe it's time to ask for some outside perspective rather than relying solely on our community to sort this. Other people have been through this sort of game that's being played. What say they?
 
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Snowdrop

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I think we are more than qualified to smell a rat.
Oh I agree entirely. But there is division about what to do about that. Can the rat stay because they are tamed by the presence of 'good looking research and researchers' or do they have to go because at the end of the day they are a rat?

On a different note. I really think we need to get a petition out stating just what we think of rats. (not me because the wording would not be quite correct). I hate saying this because I have at times suffered from 'petition fatigue'
 
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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.
I have no hope of anything good coming out of the UK anyway. The CMRC had always had a highly political spin to it, as largely evidenced by the 'uncontroversial' (or: doesn't upset Sir Simon too much) nature of the biomedical research on offer and floating menace of these figures in the background, as so amply demonstrated by this particular shambles.

You can be damned sure that if they ever discovered anything of note, the funds would be pulled faster than you can say "hijacking the agenda and distorting the debate".
 

Yogi

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The psychobabblers are in the back foot now and we are in the position of strength. We need to strike while the iron is hot.

Demand:
1.We need to see the full details of study before we sign.
2. The dodgy researchers who have proven they cannot do a proper ME study and have still not disclosed all data should be thrown off study immediately.
3. All researchers sign that they will use CCC/ICC otherwise we will get tired people who do not have ME in study again.

Optional:
4. All sign that neither researchers should mount smear campaigns against patients and vice versa.

I feel if I or anyone was to sign to support this all of our achievements this year especially all of David Tullers and the positive tribunal work to release data would have been all in vain.

Who decided to put Wessely in charge of setting up CMRC and White on the study.

It feels they are playing a game with our lives.

The ME community have really pulled together this last year with #MEAction... It truly has been amazing and shows the power if we unite.

It appears some patients feel we should support others not given the way this has been set up.

Anyone heard of...
Divide and conquer??
 
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Sidereal

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IMO anyone looking for money to study this disease should have to publicly disavow CBT/GET. I've had enough of appeasement of quackery. No more broad umbrellas, big tents, inclusive criteria or anything like that. It's time to put a stop to the abuse of patients.
 

Binkie4

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On AfME's Facebook page, there are expressions of concern about White and Crawley which have attracted a fair degree of support. How about ensuring that the concerns expressed here are replicated there, so that anyone who hasn't been folllowing the politics of the last year, has to confront more of it? Some people may just read the headline especially if they're foggy and desperate and sign.
I would not support anything that involved White and Crawley. In the meantime we need to think of how to move forward. They cannot be allowed to say this has patient support. Once bitten, twice shy.
 

BurnA

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Can someone let them know we are not convinced about petitions.
Maybe they could enquire into the status of our 12000 name petition delivered to The Lancet about PACE.

Tell them well sign their petition when we get a response from The Lancet.
 

Snowdrop

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And why do they feel the need to have a petition for us to 'pledge' our support.
I find the whole thing insulting. A constant stream of taking what we do or say and then turning it around to benefit themselves.
It's disgusting. And shame on AfME (again).
 

BurnA

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And why do they feel the need to have a petition for us to 'pledge' our support.
I find the whole thing insulting. A constant stream of taking what we do or say and then turning it around to benefit themselves.
It's disgusting. And shame on AfME (again).
They ignore patients for years when we raise scientific queries related to their studies, then they ask us to sign a petition supporting them. Seriously WTF.
 

snowathlete

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There's no way I'd support funding the work of White, Crawley and Collin.
Basically, the only way I am going to support any study into ME/CFS is if the people involved meet my minimum standards for research ability and ethics, and these lot don't.

I think it stinks that the charities are supporting it with these people involved. I think it is particularly bad of AfME who screwed up so badly on PACE and really ought to be working on their relationship with patients not destroying it.

It is not enough to say, well it's a good study, so we're being pragmatic - White has ruined patient's lives with PACE and Crawley wants to perform dangerous treatments on children while pretending she doesn't know anything about the harms that people report all over the world.

The charities should be saying that they cannot support this or other trials with these people involved because they'd be failing their members ethically if they did. As for the other researchers, I am pleased they are interested in the disease, but if they want my support they can have it - they just need to kick these other people out who I and other patients simply cannot, and will not support.
 

Woolie

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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.
I think you have a point here, @Yogi. Its crucial that we don't get blinded by the word "biomedical", because some of the new types of measures and theoretical frameworks the BPSers are using do look "biomedical". But at the core of them is the same old "illusory perceptions of illness" crap.

I'm thinking of some of that recent Harrison-Edwards research on the role of the brain in CFS. Which is, by the way, a carefully concealed redescription of a psychosocial account within a neural conceptual framework.

We need to know what exactly will be done before we support anything. But in my view anything that focuses on "the brain" should not receive our highest support right now for two reasons. First, its is often unclear whether such research is really "biomedical" or just modernised terminology for expressing much the same sentiments as before. Second, even if it passes that test, and offers a totally new insight into the mechanisms underlying CFS, it will only lead to treatments involving psychoactive drugs.

No, we need to support basic research into the role of more peripheral systems in CFS - e.g., immune, metabolic - ones where new discoveries might actually lead to new and effective treatments.

Start at the bottom, then work up.
 
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snowathlete

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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....
I agree. I'd want to see a declaration that they would stick to those protocols as well, given that White is involved. What about data sharing? And importantly, what about consent? Will the participants be informed about the conflicts of interest of White and others, or will they be hidden again? What happens if this leads to a discovery and then they want to test a treatment? Are they going to accept White's definition of recovery that he defended today in the Times? The one where the patients are severely disabled?
 

Glycon

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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.
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.
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.
Some things to consider:

(1) Any endorsement from the patient community can (and, in my opinion, will) be spun by White, Crawley, etc. as willingness to forgive and forget the transgressions associated with PACE/MAGENTA/etc.

(2) It will undoubtedly brought up in any government review of said transgressions, potentially making it more difficult to represent the patients' complaints as well-grounded and important.

(3) This is a good opportunity to prod the other researchers into taking a public stance with respect to CBT/GET guidelines and the Lancet-PACE affair.

(4) If the other researchers are not forced to at least take a stance one way or another, their willingness to collaborate with White and Crawley will likely be spun in much the same way as patient support, but with the added gravitas of reaffirming White and Crawley's scientific and ethical respectability.

(5) If this collaboration between White & Crawley and the others gets underway, it will make it much more difficult to get the others to take the right stance. Indeed, they would feel pressure to defend them, if only for the sake of this project.
 
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Glycon

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BTW, @AndyPR , are you aware that ME Research UK website does NOT list White and Crawley as members of the "main MEGA team":
The main MEGA team consists of:
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 ME (representing charities involved in the UK ME/CFS Research Collaborative).
What's THAT all about, hmmm?... o_O

(I have a theory, but I'm a relative newcomer to the full-contact sport of ME/CFS politics, so I'll keep it to myself for the time being.)

EDIT: Another oddity is that the link supposedly to "ME/CFS Epidemiology and Genomics Alliance (MEGA)’s website" takes you to the change.org petition instead. It doesn't look like MEGA even has a website at this time. Real professional, y'all! :bang-head:

EDIT #2: The "MEGA Progress Update" document originally posted on Action for ME's website and tweeted Russell Fleming in May has been taken down and replaced with this version. If anyone can locate the original pdf, it would be great!
 
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