New Crawley research? MOrPH-CFS

It says on the FAQ for the project (http://www.megaresearch.me.uk/qanda/) that they plan to include housebound and bedbound patients, that they aren't committing to a particular criteria of ME because it means that they can compare different diagnostic criteria in the data and see how it changes results, and that they haven't settled on a definition of PEM, but they've given an example of defining PEM as an increase in symptoms, and that the patient advisory group will have input on the definition. The site also only says that the purpose of the project is to collect very large amounts of biological data from people who have been diagnosed by clinicians, and analyze it.

Esther Crawley is also overwhelmingly outnumbered by everyone else on the project. It doesn't seem very objectionable to me. It actually seems like a really good thing.

 

At this point, I think that any further funding for Crawley will be bad for patients.

In the past I would have wanted to look at each project individually, but she now has such a history of misrepresenting the evidence in ways that harm patients that I now think she cannot be trusted with further funding to do anything.

 

Totally agree, I'm sure that's what is going on, and will continue to go on until they have nothing lest to cover them with. Their arses are obviously far more important than patient welfare.

 

I very much agree with you in principle, but unfortunately anything involving EC seems to be very unprincipled; EC and good research just don't seem to get along with each other, mutually exclusive - if she's involved then by default everything you wish for above will be out the window. But if the researchers were good, then what you say above would be much more worthy of consideration.

 

Unfortunately I fear it is as much an EC PR exercise as anything else. Whether she intends to sabotage her own work or not, she seems to have this lemming-like quality of doing exactly that - whilst consuming research funding that other much more qualified and rational scientists could be getting on with.

Again, EC's heavy influence cast doubt on all of that, especially support from the supposedly bio scientists for EC's very non-bio/pro-psych work.

 

Interesting. Very moist.

 

The woman doesn't know the difference between Science and pseudoscience, she is a danger to everyone.

It doesn't matter if she is outnumbered, if she has a key role she will orchestrate things her way to her agenda, that's how it works.

 

I agree that MEGA in theory is a good idea, however in practice there are so many reservations. Holgate has defended PACE and Crawley's GET and CBT based research, suggesting that he has a very inadequate understanding of ME/CFS, further another researcher involved is advocating the use of CBT for treatment of IBS using a methodology very reminiscent of PACE. There is also a bias towards health care provision evaluation rather than research aimed at understanding specific medical conditions amongst some of the researchers involved. This repeats the pattern of PACE and Crawley that present models of intervention without any testing of their theoretical models of the condition or any clear confirmation that they are looking solely at what most researchers overseas understand by the diagnosis of ME/CFS.

MEGA has repeatedly declined to officially distance itself from PACE models of ME despite repeated requests that they do so, given Crawley's involvement in the project. They are disingenuous in the assertion that PACE was an unconnected seperate research project so they can not comment.

MEGA has not adequately explained why they need to set up a seperate Biobank that could overlap significantly with the existing Biobank, they could have had public debate with the existing service to ensure prospective participants understand why there needs to be the two.

There are major concerns about the genuineness of their patient consultation exercise, which uses Crawley's Bristol/Bath existing Paediatric group which has very worryingly failed to reign Crawley in, and which asked involvement from Adults at such a late stage that they had no real opportunity to contribute to the initial proposals. Indeed a number of the Adult group felt compelled to resign within a few months.

Given Crawley's failure to develop any testable model of what ME/CFS is and her failure to get to grips with a consensus for diagnostic criteria, it is potentially that her involvement reflects empire building rather than a genuine attempt to understand what ME/CFS. She is obviously very good a gathering support and attracting funding so empire building in itself would have not been a bad thing if it was not combined with willfully bad science and a willful disregard for truth and for anyone patient, parent/guardian or academic who disagrees with her.

 

I doubt it. Esther Crawley has done biomedical researching the past. Ido notice this as a sudden change. The description given seems extremely naive. Works like 'virile' are pretty meaningless, for the sort of reasons you mention @NelliePledge. The viral DNA in a spoonful of saliva has precious little chance of showing anything relevant to causation of an existing chronic illness. And every man and hi dog have looked for viruses already. Moreover, I do not really know what this Bristol Biobank thing is. So often it seems from Bristol that there is a claim for some great resource which it turns out hasn't actually been set up yet - it is just a nice idea they had, which everyone else has had too.

@petrichor : I think we would all agree in theory that MEGA sounded good - do absolutely everything biological on masses of patients. The problem was that on reviewing the proposals details either there were none or they looked pretty shaky in terms of sound methodology for data collection. Moreover, both Wellcome and MRC seem to have thought so too, despite the MEGA project having a direct line to both organisations pre-arranged. A well structured effort at much the same thing is already going on quietly at LSHTM in collaboration with good groups elsewhere. Bristol preferred not to have anything to do with that.

 

I think everyone should at least get the facts right about MEGA. There's no indication they'll be focusing on psych questionnaires, or that they'll use a poor definition of PEM, or that they will purposely exclude severe patients. I'm no expert, so I can't comment on the methodology, maybe it is very bad, but I don't think the fact that Esther Crawley is involved or that they haven't explicitly denounced PACE is a good enough reason to stop large research projects on the biology of ME going ahead, which looks like it'll mostly be done by people who are respected biological researchers. (http://www.meassociation.org.uk/201...irth-says-dr-charles-shepherd-3-october-2016/)

Hopefully things will work out such that if their methodology is good, MRC and Wellcome will recognize it, and it it's bad, they'll recognize it too. This is a biological study, so whether the methodology is good is a bit more clear cut than some of the non-biological research that's gone on in ME, and the fact they both rejected it means they're putting it through the right hoops. I think we need to be very careful about immediately denouncing the MEGA project. If its methodology is indeed good, then it is an extremely good thing. It would bring in a large number of respected researchers to ME research, and give a lot of funding to ME research. Those are both things that we desperately need.

 

It does seem that they have updated their site to cease using "post-exertional stress" and reference the CCC description of PEM without promising to actually use it. Unfortunately, Esther Crawley has been proven to be unreliable in using PEM even to the extent required by NICE criteria - she will claim to recruit using NICE and list the required symptoms involved, but omit PEM.

There would be no initial funding for getting samples from homebound patients. That is said plainly on their site.

There would be no initial funding for analysis of blood or other samples. So what can be analyzed without additional expense? The questionnaires. Their site also says that the data they collect will be about fatigue, disability, and mood disorders. They basically say that they can not afford most biological testing, like for OI, PEM, imaging, etc. They talk about collecting blood for genetic studies and such, but not about actually being able to make such analyses.

Even if all of those problems were resolved, Esther Crawley's involvement would remain completely unacceptable. She lies about her research results, and about patients. She deliberately paints us as unhinged lunatics as an attempt to invalidate the protest of her research methods. And those research methods are very much worthy of protest.

We'd have to be insane to give her the benefit of the doubt after she has repeatedly engaged in such a variety of abusive practices. In no way are we beholden to support research being conducted by an ME-denialist, no matter how many reputable scientists she has managed to mislead about the project and her intentions.

 

Dear @petrichor,
I appreciate that this is an entirely reasonable view if you have not scrutinised the proposal. The resources to do the work properly were not there. Moreover, with the SMILE trial we now see what happens when researchers start out without everything in place and then try to cobble together a substantive study out of a pilot study. I would also warn against being overawed by 'a large number of respected researchers'. High profile researchers in this day and age are mostly people who are good at playing the politics. I had never heard of any of the other people before I heard of MEGA. Some turn out to be very astute, but those that have have admitted that the project has some shaky foundations. Others seem to be big names in certain political groupings but seem to be blind to the flaws of PACE. Anyone blind to the flaws of PACE in my opinion is not to be trusted with any project. If someone does not understand basic control of data reliability then how can one expect them to produce useful work?

And this sort of work is already underway in the USA and now in the UK with the second $2M NIH grant to the Biobank. The Biobank people do not act like prima donnas like the Bristol crowd. They quietly get on with the work. There is no special need for any particular work to be done in any particular country. Science is international. What good scientists do not do is put in applications that compete directly with other people who are already doing that type of work and need ongoing funding. Which is exactly what the MEGA people did. They have no concern for any body else's interests.

It is quite hard for me not to support Dr Crawley because she was a trainee in our department. But her behaviour towards patients and the quality of her research output has been so troubling that I cannot do so.

 

Thank you for saying so . I know you have done so before but this can't be repeated enough.

 

Thank you for this discussion. For me, it was very interesting and helpful.

My mistrust for Mrs Crawley's 'research' was decided when I heard about some background of the school absence study. For me that was the point she disqualified for any future work; although her work in the SMILE and Fitnet trial were unprofessional, too. And although she behaves questionable in the public towards people with ME in my opinion. Hereby I take into account that not to like a person and to view his/her work as unprofessional are two distinct issues. I might dislike a person but respect him/her for the work she's doing. But not in this case.

 

Lets think of this a different way, how many times do we need to treated like pariahs before we stop falling for lies from someone with malicious intent?