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New MEGA study website (30 November 2016)

Messages
2,158
[My question is: people here are worried that Prof Esther Crawley will bring in BPS views of ME/CFS into the MEGA project (a valid concern). However, it seems that her responsibility is going to be setting up a biobank, which seems to be about as for as you can get from psychology; you would use a biobank to do biomedical research. Does anyone have any views on this?[/QUOTE]

On the surface I see the sense in what you are saying, however Holgate makes it clear that he thinks, presumably on Crawley's advice that we have to use the broadest possible definition of ME.

Since Crawley has form on this, publishing 'epidemiological' studies on children basing her definition of CFS on nothing more than what a child and their parent fill in in a questionnaire about fatigue, I do not trust her as the guide on which patients to include.

Also I don't trust her to define PEM, as she does not seem to understand either what it is, or its central importance in defining ME, so even if the PAG manage to insist on PEM, it may be left to Crawley and her minions to oversea the training of those on the ground selecting patients to take part. If it gets watered down to post exertional fatigue or post exertional stress it could include anyone...

My other major concern about her is that the initial stage is not just collecting biological samples into a biobank, it is also collecting questionnaire data on all the patients. While some of this is necessary in order to record symptom patterns and level of disability so these can be correlated later with biomedical findings to help with subgrouping, I am concerned that a vast database of patient questionnaire data, including comorbid psychological factors, family history etc will be misused by Crawley and her pals as a playground for their psychological ,'research'. She has already done a lot of damage with this approach.

By insisting on starting the project with questionnaire and sample collection as the sole purpose of the grant application, with no guarantee of further funding even being applied for until all that collecting has been completed, we may not see any actual biomedical research at all. At best we will have to wait some years while MEGA gets its act together and collects 12000 patients' data and samples.
 

Solstice

Senior Member
Messages
641
On the surface I see the sense in what you are saying, however Holgate makes it clear that he thinks, presumably on Crawley's advice that we have to use the broadest possible definition of ME.

Since Crawley has form on this, publishing 'epidemiological' studies on children basing her definition of CFS on nothing more than what a child and their parent fill in in a questionnaire about fatigue, I do not trust her as the guide on which patients to include.

Also I don't trust her to define PEM, as she does not seem to understand either what it is, or its central importance in defining ME, so even if the PAG manage to insist on PEM, it may be left to Crawley and her minions to oversea the training of those on the ground selecting patients to take part. If it gets watered down to post exertional fatigue or post exertional stress it could include anyone...

My other major concern about her is that the initial stage is not just collecting biological samples into a biobank, it is also collecting questionnaire data on all the patients. While some of this is necessary in order to record symptom patterns and level of disability so these can be correlated later with biomedical findings to help with subgrouping, I am concerned that a vast database of patient questionnaire data, including comorbid psychological factors, family history etc will be misused by Crawley and her pals as a playground for their psychological ,'research'. She has already done a lot of damage with this approach.

By insisting on starting the project with questionnaire and sample collection as the sole purpose of the grant application, with no guarantee of further funding even being applied for until all that collecting has been completed, we may not see any actual biomedical research at all. At best we will have to wait some years while MEGA gets its act together and collects 12000 patients' data and samples.

Put this way, I think the best we can wish for at the moment is to delay, delay, delay. I honestly don't see them stopping from going ahead with this anyway, even if we had a million subscribers to the Omega petition. I just hope things can be stalled long enough for some actual scientists to have made their breakthroughs. Making this whole exercise in mismanagement absolete.
 
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Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
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3,061
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UK

Cinders66

Senior Member
Messages
494
The Oxford criteria and the NICE criteria are not the same. The NICE criteria are in fact very similar to the CDC criteria.





"Abuse" may not be the right term, though "interrogation" might be.




My question is: people here are worried that Prof Esther Crawley will bring in BPS views of ME/CFS into the MEGA project (a valid concern). However, it seems that her responsibility is going to be setting up a biobank, which seems to be about as for as you can get from psychology; you would use a biobank to do biomedical research. Does anyone have any views on this?


I disagree. Crawley calls NICE fatigue plus 1. A NICE diagnosis can at minimum be given for fatigue, post exertion fatigue (And any disorder/illness or. Deconditioning where people don't exercise will likely cause that) & one other symptom e.g. Poor sleep. Contrast that to CDC Fukuda which require fatigue & 4 other symptoms which do encompass core subgroups e.g. Pain & immune symptoms and PEM is there, albeit optional.


The problem with Crawley in charge of patients selection is maybe the sloppy way she diagnoses even using supposedly NICE e.g. her CFS via a being tired questionnaire.

How many with more recognised ME have a new NICE criteria based bio bank as a top research priority ? From a detached academic point of view, starting from scratch and opening as broad as possible to encompass all with fatigue syndromes burdening the NHS might seem like an ok way to now start doing biomedical research (20 odd years into my life ruining illness) but I don't think Holgatre gets, nor do I think the charities who attend Foward for ME represent, the need in the community in what Holgate would class "the more severe forms". I think the UK is taking a very unilateral approach in the way it's doing things and not responding to the level of need in the Classic CFS and ME groups , a population in size equal to or greater than MS But lost in this U.K. "CFS umbrella " he insists we must have as our starting point. Whatever good that comes out for this Won't be for years.
 
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Jo Best

Senior Member
Messages
1,032
Stephen Holgate said, "The work of MEGA was more akin to astro-physics. Think about discovering black holes in space. He said this was probably why some people had difficulty with the concept."
:rofl: Oh, that clarifies things greatly thanks. So the MEGA project is like a finding a black hole in space. A black hole, sucking in UK ME/CFS research funding and effort and shedding no light perhaps?
Perhaps he got the inspiration for that analogy from some of the online content he mentioned?
MEGA study - #ProjectSinkhole ? http://www.investinme.org/IIME-Newslet-1609-02a.shtml
Blackhole 1-1230634165FAXt.jpg
 
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Messages
13,774
Crawley isn't a psychologist. She's a pediatrician.

I'm worried about any project that will help her entrench her position as the next generation's Wessely. She's shown she is a quack, we need to get rid of her. It's a big mistake for any patient group to support any prject that means more funding going to her imo.

We need to make it clear that patients deserve better than her. At a time when so much of a fuss is being made about patient involvement in research patient views are starting to matter more and more for these things. If we could get @Action for M.E. to stop undermining patient attempts to raise standards, and help provide a united front against researchers like Crawley, there's a good change that would let us force change.
 
Messages
2,158
Problem is, she seems to be the only so called ME expert involved, and even if she were confined to the children part of the study, she already has her apparently tame PAG set up for that who seem to have approved her other studies, so presumably they are not aware of the problem and will not challenge her.
 

lilpink

Senior Member
Messages
988
Location
UK
Now imagine if they make up their own definition of a phenomenon such as PEM, one that fits into a narrative of excessive worries about health, rather than a measurable reduction in function. We would not be able to tell who actually has something resembling PEM and who doesn't. We would not be able to link any biological parameters to the symptoms of PEM. This is how easy it is for them to sabotage this project.

Late to the table on this..I expect someone is there before me..but don't give them ideas! ;( :eek::confused::bang-head:
 

Hip

Senior Member
Messages
17,820
Why are they getting a psychologist to set up the biobank if it's about as far away as you can get from her day job?

You answered my question by asking the same question! That's the issue is what I wanted to get people's views on.

Could it be that Prof Esther Crawley's ballroom days are over, when it come to psychological research on ME/CFS, and she knows this? The PACE trial reevaluation indicates to psychologists that they can no longer go around manipulating the data and playing word games over the definition of "recovery" in order to dishonestly make it look like their psychological therapies work for ME/CFS, when in fact they don't. That racket is over for them.

So maybe she was in need of a new job. That was one thought that crossed my mind.

But I agree, I have never seen anything from the biopsychosocial cult that indicates they are trustworthy.
 
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Messages
15,786
Could it be that Prof Esther Crawley's ballroom days are over, when it come to psychological research on ME/CFS, and she knows this? The PACE trial reevaluation indicates to psychologists that they can no longer go around manipulating the data and playing word games over the definition of "recovery" in order to dishonestly make it look like their psychological therapies work for ME/CFS, when in fact they don't. That racket is over for them.
Crawley is certainly not reformed. She has very recently been publishing papers where she plays games with the definition of ME/CFS, reducing it to self-reported fatigue which isn't even chronic. Similarly, she has very recently been falsely claiming that patients fulfilled NICE criteria despite that she omits PEM.

She's still firmly committed to dishonesty.
 

Jonathan Edwards

"Gibberish"
Messages
5,256
I continue to be concerned about the recruitment for this study. From what Dr Holgate says it rather seems that patients will be collected more or less on the basis that anyone who roughly fitsCFS/ME will be included in the cohort. NICE guidelines are mentioned but not as any formal inclusion criteria as far as I can see.

The only point I can see in collecting the sort of numbers quoted (10,000) is to get the statistical power needed for genomic studies. But genomic studies are pretty much a waste of time if there is a risk of systematic bias in sampling. From what I hear, systematic bias is highly likely to occur. There will be all sorts of social, ethnic, medical comorbidity and other factors likely to creep in. It would be very unsurprising if, for instance, a genomic study pulled out genes associated with diabetes or lack of Polish ancestry or goodness knows what. I have never heard of a genetic study being run on a cohort for which inclusion criteria have not been clearly defined in advance.

It may well be true that we can only expect to find useful diagnostic criteria once the detailed demographics are known, but unless you start with clearly defined criteria of some sort you have no idea whether or not your cluster analysis is representative of something worth studying.

I continue to be under the impression that this study has not yet been thought out sufficiently to justify a bid for funding, particularly if there is a risk of that bid compromising bids from projects that are already well established with better defined methodology.
 
Messages
30
You answered my question by asking the same question! That's the issue is what I wanted to get people's views on.

Could it be that Prof Esther Crawley's ballroom days are over, when it come to psychological research on ME/CFS, and she knows this? The PACE trial reevaluation indicates to psychologists that they can no longer go around manipulating the data and playing word games over the definition of "recovery" in order to dishonestly make it look like their psychological therapies work for ME/CFS, when in fact they don't. That racket is over for them.

So maybe she was in need of a new job. That was one thought that crossed my mind.

But I agree, I have never seen anything from the biopsychosocial cult that indicates they are trustworthy.

I personally don't believe Crawley wants to "lose" ME/CFS and her status as an expert in the field, so she is willing to make whatever ideological compromises are necessary to ensure that doesn't happen. If that means she needs to paint a thin veneer of biomedical science over her existing work in order for it to survive the sinking of the good ship BPS, that is what she will do. If she decides she wants to find a cohort that her previous work CAN be applied to, that is something she can do with MEGA and how it is currently proposed to function.

She will say, "so in this subtype my previous work can be considered applicable, and now because of my current/new work, we have identified subtypes where new biomedical research (co-ordinated by me and my team) will be appropriate. This is why I need more funding."

But maybe I am too cynical.
 
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TreePerson

Senior Member
Messages
292
Location
U.K.
I personally don't believe Crawley wants to "lose" ME/CFS and her status as an expert in the field, so she is willing to make whatever ideological compromises are necessary to ensure that happens. If that means she needs to paint a thin veneer of biomedical science over her existing work in order for it to survive the sinking of the good ship BPS, that is what she will do. If she decides she wants to find a cohort that her previous work CAN be applied to, that is something she can do with MEGA and how it is currently proposed to function.

She will say, "so in this subtype my previous work can be considered applicable, and now because of my current/new work, we have identified subtypes where new biomedical research (co-ordinated by me and my team) will be appropriate. This is why I need more funding."

But maybe I am too cynical.

No I think you are exactly right. And that is why the cohort will include large numbers of people who don't have ME at all and probably very few of the severely ill or long term sick. So she will be able to say most people are helped by my methods.
 
Messages
30
No I think you are exactly right. And that is why the cohort will include large numbers of people who don't have ME at all and probably very few of the severely ill or long term sick. So she will be able to say most people are helped by my methods.

Yes, exactly. I see MEGA as more of an exercise in power consolidation for Crawley than anything else. She already has the BPS credentials, and in light of other global research she is going need some biomedical credentials in the area as well or she may be made 'redundant' so to speak by non-ME/CFS biomedical-type researchers in the UK. She is positioning herself to be the supreme authority on ME/CFS in the UK whether that is the ME/CFS of the BPS model or not.
 

Cinders66

Senior Member
Messages
494
No I think you are exactly right. And that is why the cohort will include large numbers of people who don't have ME at all and probably very few of the severely ill or long term sick. So she will be able to say most people are helped by my methods.

I agree Esther's preoccupation is the fatigued and how to use behavioural approaches to fix that. Using NICE, as when the BPS lot used oxford, allows her to find people she can fix and never mind the rest of us really. Her papers often seem most interested in the role of anxiety an depression as a causal or perpetuating factor & her recent radio with dr Hammond revealed a disinterest, in my interpretation at least, in finding medical treatment, she even claims patients don't want that. At the recent CMRC conference she kept quoting a theoretical case study of a boy playing football a few days in a row then crashing, which if it's classed as ME at all is very upper end and that's all she's interested in.

Whilst Holgate might claim wider net the better for genetics study, this has also been his long term stance - an interesting feature of th ME expert group /CMRC was failure to unite around more specific case definitions or recognition of anything like classic ME. It's also been the historic U.K. Stance so whilst the world moved towards CCC and then IOM , NICE went and did its own thing and has kept the umbrella large. Does anyone think that severe MS would have been served well by being seen as just part of a fatigue spectrum? This month sees with MEA Funding a small Spanish study, the first biomedical research specifically on severe ME in U.K. Ever, who can remotely call the CFS/CBT model a success with results like that?
 

Solstice

Senior Member
Messages
641
No I think you are exactly right. And that is why the cohort will include large numbers of people who don't have ME at all and probably very few of the severely ill or long term sick. So she will be able to say most people are helped by my methods.

Partly agree. If PACE made anything clear it's that CBT does nothing for anyone with any kind of fatigue. She will spin like there's no tomorrow though.
 

Snowdrop

Rebel without a biscuit
Messages
2,933
For me Esther Crawley is not really the problem-- even people who still want to support the trial are willing to do so only with the caveat of her not being involved (a point I consider naive since there is no study here without her).

Stephen Holgate on the other hand, supposedly is not part of bPS psychiatric model and wants good bio research for people with ME (despite his unwillingness to engage with said people and his patronising attitude when answering non-questions).

The fundamental flaw in most research in the UK up to now has been what's been called the 'big tent' inclusive approach. Always said with a sense of superior knowledge we poor sufferers of disease cannot appreciate as if it's an issue that equates to bigotry not to include everyone.

I think what we need from MEGA (which we may or may not have--I'm not sure) is a very crystal clear statement of what they hope to achieve with the data from a biomedical standpoint. Maybe then we could ask around (as stakeholders for whom the research matters) in the larger scientific community ; how would they go about designing a study to achieve the biological information sought. What design would yield the best clearest conclusions (whatever they might be).

Since I'm not science literate perhaps this is a little simplistic. I've read Jonathan Edwards say that he didn't think a 'fishing expedition' type approach would be useful--that there should be some sort of hypothesis.

My point is; given what we know so far about ME maybe the question should be asked: what type of study (in detail) is likely to yield something of use. What would the study look like. How would it be designed.

I think that taking the time to answer this and defend it would be a good pro-active step toward (in my opinion) knocking down this 'big tent' which I find to be utter nonsense.