Trial By Error, Continued: The CMRC Affirms Full Support for Libelous Crawley

[NelliePledge]

IMO, MEGA had its chance to explain what it was doing and why, and make it clear that what they were doing was on the up-and-up. I really thought the study had promise at first. Now I'm looking at a lot of unanswered questions on their part and a whole heaping helping of privilege: people believing it isn't their responsibility to demonstrate the ethical nature of their study design to a vulnerable patient population. And I don't say 'vulnerable' because we're fragile, but because we have been demonstrably maligned by researchers in the past.

But admitting that -- and admitting that transparency is more important with this patient population than others -- would be acknowledging that things have been mis-handled in the past. By people on your team.

It isn't clear how patients will be selected, what they're planning on doing with the data, what they're looking for -- it is, as Edwards pointed out, a fishing expedition. Now, view that through the lens of who's looking. They'll 'find' whatever it is that they want to find, and they'll spin it however best suits them.

Maybe this is the group's attempt to 'go straight' and get involved in biomedical, verifiable research. But if past is prologue, that's a very optimistic view.

Bear with me I'm only 18 months in to this world of ME and only in the last 6 months working on understanding the politics around it. As the initial MEGA bid to WellcomeTrust was turned down is that a common occurrence and a second application likely to be accepted or a major setback and they are going to struggle to get it off the ground.

 

[A.B.]

I think MEGA will be different to past studies and will take patients' concerns into account:

They say.

Yet three patients acting as patient representatives to the MEGA team have resigned because they felt not taken seriously.

I don't doubt that that most of the team are good researchers, but they admit not knowing anything about ME/CFS and will thus rely on Crawley who we can't trust.

 

[Barry53]

and will thus rely on Crawley who we can't trust

And whose behaviour, time and time again, reinforces the gut-feeling that trusting her would be foolish.

 

[JaimeS]

As the initial MEGA bid to WellcomeTrust was turned down is that a common occurrence and a second application likely to be accepted or a major setback and they are going to struggle to get it off the ground.

I'm not sure how often Wellcome Trust turns down a grant... Anyone else able to address this question?

 

[user9876]

Their goal for number of patients straightaway demonstrates serious concerns. Where do they suppose they will FIND that many local patients with ME/CFS? They don't suppose -- they're planning on using the least stringent possible criteria, as they have done in the past.

If they have sufficient numbers and multiple criteria then having the least stringent criteria is not a problem. That is as long as they do proper subgroup analysis and have sufficient in each subgroup.

Problems will come with co-morbid diseases which they could pick up on rather than ME if they don't exclude that.

I would also worry about the stats that they use. If you introduce noise (i.e. non ME patients) into a data set then you have to use more robust statistical measures. If you have subgroups and hence different distributions you cannot just quote the mean. Yet what we have seen from Crawley's past work does not leave an impression that she or the others understand that.

 

[Art Vandelay]

Holgate's letter has interesting wording. He seems to go out of his way to back Crawley but only by saying that her work is peer reviewed he doesn't seem to be able to bring himself to try to understand the criticisms or comment on them. I wonder if he is trying to leave himself room for deniability.

But it does suggest that the CMRC thinks good science is anything that gets past peer review.

Yes, it's standard bureaucratic butt-covering (or 'ass-covering' or 'arse-covering' depending on which part of the world you live in). I had to draft hundreds of letters like this in my former life as a bureaucrat.

By stating that her work is 'peer reviewed', he then doesn't have to to offer his direct opinion on the quality of her research. Thus, if everything goes pear-shaped in the future (say, for example, there's a huge public scandal over BPS research), he can wash his hands of the whole thing by saying that he trusted the peer review process.

 

[slysaint]

New statement from AfME

https://www.actionforme.org.uk/news/board-of-trustees-on-cbt-get-and-pace/

more fudge

 

[alex3619]

If they have sufficient numbers and multiple criteria then having the least stringent criteria is not a problem. That is as long as they do proper subgroup analysis and have sufficient in each subgroup.

I have made this point repeatedly. Yet the caveat is a killer - they need to only use very large patient cohorts, and run exhaustive testing and analysis, which will drive up the cost considerably. For a poorly funded area this is not very likely. Underpowered cohorts with limited testing would be a nonsense. You can do that more reliably if you have strictly defined ME cohort selection - it brings down the needed cohort size and decreases costs.

 

[NelliePledge]

New statement from AfME

https://www.actionforme.org.uk/news/board-of-trustees-on-cbt-get-and-pace/

more fudge

Weasel words
Them Signing the letter now would make a big difference through showing solidarity with the ME community and they know it. By not signing it they are showing they clearly do not support it otherwise they would not have any problem doing so. The only thing they gain by not signing is not annoying the PACE proponents. Why should they be concerned about that at the expense of being in solidarity with people with ME

Like not signing in support of round earth for fear of upsetting flat earthers. Or the Sun over Hillsborough AFME are on the wrong side of history on this.

 

[AndyPR]

New statement from AfME

https://www.actionforme.org.uk/news/board-of-trustees-on-cbt-get-and-pace/

more fudge

With a new thread for the statement itself http://forums.phoenixrising.me/inde...ment-on-cbt-get-and-pace-16th-may-2017.51498/

 

[Large Donner]

OMG Donner don't talk about specific football teams very dangerous ground worse than religion or politics.

You didn't mention his catch phrase "I didn't see that" when his team do dodgy stuff and his theatrical Gallic arm waving at supposed infringements by opponents. Mm I'm beginning to see what you mean about similarIties with BPSites.

Wenger is not a popular man where I come from and less so after his latest visit. Normally we enjoy his arm waving we've even got a special song we sing just for him.

Now you have given the game away you are a Stoke fan!

 

[lilpink]

At this stage MEGA must never be allowed to happen and the goal should be the complete disbandonment of the CMRC.

Those individuals and organisations who remain with the CMRC are doing a disservice to patients. There should be no more sitting on fences or being a cautious member, charities need to nail their colours to the mast and move on. Anyone who supports an organisation with EC as a deputy chair does not have patients interests as their priority. Chris Pontings tweet was a disgrace. Who is he to lecture to us what we desperately need?

This sorry saga might lead to some good if we can build a community united against the CMRC.

Yes! I'm only concerned that you have been able to read my mind in such detail.

 

[Large Donner]

By stating that her work is 'peer reviewed', he then doesn't have to to offer his direct opinion on the quality of her research. Thus, if everything goes pear-shaped in the future (say, for example, there's a huge public scandal over BPS research), he can wash his hands of the whole thing by saying that he trusted the peer review process.

Except Tullers letter to Holgate addressed the ludicrous claims of harassment she made against the patient population and fellow scientists and how she informed other academics how to avoid answering FOIs and sharing data.

Are there papers on such subjects and is she published and peer reviewed on them?

 

[Jonathan Edwards]

I think MEGA will be different to past studies and will take patients' concerns into account:.

I think we now know this is impossible. MEGA belongs to Dr Crawley. It was designed for her by Dr Holgate. There was a lot of covering up of who it belonged to initially but it is now clear it is her project. Given her presentation to BRS it is clear that she not only does not take patients' concerns into account, she considers them malicious. She has advised other doctors how to dodge around responding to patients' concerns via FOI. Her position is transparent and it is no use to PWME.

 

[A.B.]

I think we now know this is impossible. MEGA belongs to Dr Crawley. It was designed for her by Dr Holgate. There was a lot of covering up of who it belonged to initially but it is now clear it is her project.

What makes you think that it's now clear that it was her project all along?

 

[Jonathan Edwards]

What makes you think that it's now clear that it was her project all along?

Because Holgate and White are retired or retiring, so who else was it intended for? There is no substance in the project so we have to assume it is politically motivated - it was designed to build someone's empire. There is only one candidate.

 

[Large Donner]

What makes you think that it's now clear that it was her project all along?

Perhaps because the "design" and the proposal where so badly written that it got rejected, who else could write such an empty unscientific proposal?

 

[Large Donner]

There is no substance in the project so we have to assume it is politically motivated - it was designed to build someone's empire. There is only one candidate.

Oh Lordy are you telling us Peter Madelson is making yet another comeback?

 

[Art Vandelay]

Except Tullers letter to Holgate addressed the ludicrous claims of harassment she made against the patient population and fellow scientists and how she informed other academics how to avoid answering FOIs and sharing data.

Are there papers on such subjects and is she published and peer reviewed on them?

His statement deliberately skated around that issue no doubt because he didn't want to go on the record as defending it (it is pretty indefensible). The rule is: express no opinions that may get you into trouble later and take no responsibility.

It's a standard bureaucratic tactic: put out a vague statement that doesn't address any of the key issues. The PACE authors do it all the time too.

 

[Wolfiness]

At this point, the argument boils down to, "I feel / hope / pray that the BPS school won't have as much effect on the study or how its findings are reported as we all fear".

It's not exactly an argument from strength.

For me the fundamental fact is that mainstream UK ME research has totally lost my trust and they haven't even acknowledged this, let alone begun to win trust back. So the burden of proof that they aren't doing my cause more harm is very heavily on them for the next generation or so.