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

CFS_for_19_years

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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":


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.)
Looks like a deliberate omission to me, meant to deceive.

ME Research UK has a Facebook page with a post regarding the MEGA study, collecting comments:
https://www.facebook.com/MEResearchUK
 

Glycon

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Looks like a deliberate omission to me, meant to deceive.
Oh, really? Would an accidental omission look differently? Or one NOT meant to deceive?

I think that there are less cynical explanations. That's not to say, however, that questions don't need to be asked...
 

Esther12

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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.
I expect Action for ME to be terrible. I'm more disappointed with the ME Association, promoting this without making clear to everyone that it involves researchers from PACE and SMILE.

BTW, @AndyPR , are you aware that ME Research UK website does NOT list White and Crawley as members of the "main MEGA team":
It's dodgy of them to do that... but also gratifying that they removed Simon Collin too.
 

Glycon

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It's dodgy of them to do that... but also gratifying that they removed Simon Collin too.
I strongly suspect that the explanation is a lot more benign than everyone's inner conspiracy theorist is undoubtedly ready to assume. (In particular, I'm not convinced that it's correct to speak of them "removing" anyone.) However, that is not to say that a clarification shouldn't be sought.
 

Glycon

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I have a question. If a finding of fraud is ever found against researchers, and some papers are retracted, what happens to ongoing studies they are involved in?
Depends on the nature of studies, the nature of involvement, the source of funding (public vs private, etc.), the country where research takes place, the country where researchers are based...

Can get complicated and messy, especially when public funds and research on human subjects are involved.
 

Woolie

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Reading through all these posts, I just get the feeling that we are being used here. We're being asked to sign a blank cheque, which then will be used for some strategic purpose only they know of. Let's see real actual research proposals first, and then we will give you feedback, on our terms.

AfME's involvement sends a very strong message that the group are seeking "patient consultants" that will readily rubber stamp what they do without making any trouble.

I don't really get this whole MEGA thing. Its seems to me like some sort of loose collective of people who are interested in CFS (not necessarily biomedical, by the names) and want to promote CFS research. I'm assuming its function is purely for research facilitation and to raise awareness? Because, surely, each research proposal coming from within this vast collective group will involve only a subgroup of these researchers at any one time, and will be funded on its own merits, independently of this whole MEGA cloud thing.

But I could have this all wrong...
 

Woolie

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petition said:
we think we may be able to develop new treatments. We also think we may be able to target treatments more effectively for those that will benefit.
Alert! Alert! Look at this sentence! There's something odd about it. Like the word "existing" was originally there after "target", and was deliberately scratched. If you haven't developed the treatments yet, why would you say you're going to target them more effectively? More effectively than what? These treatments haven't been tested before, right?

The statement was clearly about targetting existing treatments more effectively and got edited.

Reading it again now, I suspect the BPS adherents in the group are very interested in the epidemiology data, which they plan to use in various creative ways to demonstrate a the role of psychosocial factors. It could be gender, history of depression, anxiety, socioeconomic status, ethnicity, BMI, parental separation, prior treatment for medically unexplained illness, and many more I haven't thought of yet.
 

AndyPR

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Guiding the lifeboats to safer waters.
BTW, @AndyPR , are you aware that ME Research UK website does NOT list White and Crawley as members of the "main MEGA team":
Hadn't spotted that before. Maybe White and Crawley are well away from the science then but I'd still want a statement to that fact as minimum before I'd consider signing.
 

Binkie4

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I have a recollection that SC posted something about MEGA around April/ May, and that Peter White was listed as an "observer" along with 2/3 others. Or it might have been in the minutes of a? Meeting early this year. Anyone else remember this? My brain can't find it but there was something a few months ago.....if I remember more, I'll post. Whatever role he has, it is not good. He is too skilled at inserting his own views.
 

Cheshire

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@Esther12 has shared her concern about Collin being involved alongside with White and Crawley.
He's been associated with these studies (with Crawley and/or White):

http://www.bristol.ac.uk/social-community-medicine/people/simon-m-collin/pub/9830563
http://www.bris.ac.uk/social-community-medicine/people/simon-m-collin/pub/47140736
http://pediatrics.aappublications.org/content/137/2/e20153434?sso=1&sso_redirect_count=1&nfstatus=401&nftoken=00000000-0000-0000-0000-000000000000&nfstatusdescription=ERROR: No local token
http://bmchealthservres.biomedcentral.com/articles/10.1186/1472-6963-11-217
http://emerge.org.au/wp-content/upl...syndrome.-Arch-Dis-Child-2013-986-425-428.pdf

Simon Collin, a researcher at the University of Bristol who examines outcomes data for CFS/ME patients who access NHS services, says the national outcomes data “roughly reflect” the results of the PACE trial.

Collin concurs. In a two-year follow up of the PACE study, published in Psychological Medicine, researchers said recovery was 22% in both the CBT and GET arms, compared with 8% for adaptive pacing therapy and 7% for specialist medical care[8]. But this research, Collin says, provoked “a flurry of angry responses from patient groups“, which dispute the criteria used to judge recovery.
http://www.pharmaceutical-journal.c...for-chronic-fatigue-syndrome/20201439.article

Collin's speach at last year CMRC meeting (haven't watched it yet):
 
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Valentijn

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He addressed the issue of wide criteria and was arguing for wide criteria but on what sounded like an interesting basis.
Or he was influenced by White's spin on why broad criteria are awesome. White and Crawley have had decades of experience in making their nonsense sound reasonable, especially when they're the "CFS experts" in the bunch.

I think we can be confident that they won't settle for being post boy and tea lady. They have powerful friends. They are going to have an influence. Will their influence be beneficial for us?
I think we're already seeing their influence in the push for broad criteria (which always has meant Oxford in the past). In case anyone's forgotten, White was a co-author of the Oxford criteria.

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.
Agreed. One of the things a couple quacks (Walitt and Saligan) from the NIH project were doing with fibromyalgia was getting lots of genetics data and spinning it to claim that SNPs were causing patients to catastrophize about their "normal" symptoms.

Most of their tactics were pretty transparent - but only if reading past the abstract. I expect we will be able to take apart such dishonest research products, but frankly I think we'd all rather not spend the next 5 years convincing people that we're right. Better to put a stop to this before it starts.
 
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Cheesus

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We need good science to identify subgroups, not broad criteria.

The current broad and multiple criteria are only around because of a lack of a biomarker. Subgroups may be explainable by genetics as Dr Davis is looking into.

The studies to be done with Naviaux comparing metabolomics in ME/CFS and depression etc are what we need.

Using weak and broad criteria in a study like this with certain people involved is, to me, a disaster waiting to happen.

Ditch Crawley and White. Reach out to Dr Davis and Dr Naviaux (as foremost experts on metabolomics) for guidance and they have my signature (along with disclosure of study plans as @A.B. mentioned).

Im all for a study like this. But it needs to be done in the right way, with the right people.


B
Those subgroups will become visible in this study. It is actually the point of this research.

Biomedical scientists from a range of disciplines met for a two-day workshop in Bristol on 13 and 14 April to discuss the ME/CFS “Grand Challenge” project, which plans to use a “big data” approach to the biochemistry of the illness and determine whether it is, as suspected, several different diseases.
http://www.meaction.net/2016/05/18/uk-plans-worlds-biggest-biomedical-mecfs-study/

If you take a broad criteria and scoop up everyone who might be thrown into the CFS basket, then collect a lot of data on them, you will see different groups. If you apply strict subjective criteria to the patients in order to allow certain groups in but exclude others, then any objective data you have will be distorted by that initial subjective lens.

if there is a difference between 'real ME' and people with PVFS who barely scrape into the CDC criteria, then we'll see that here. If there is an atypical subgroup that doesn't meet the CCC or ICC criteria and has a distinct metabolic signature, then we'll again be able to tease that apart with this study.

This is a deeply heterogenous disorder and at some point we're going to have to study everyone who falls into the basket rather than only those core patients who have a strictly defined version of the disease. If there are some relatively uncommon subgroups, then those people would forever fall through the gaps if we only study strictly defined patient cohorts.
 

A.B.

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I can see the point of a very large study with inclusive criteria. It could advance knowledge quite a bit, but it needs to be done properly. We have not been given any details.

Concerns about "broad criteria" are justified when in the UK that has traditionally meant Oxford criteria which permits exclusion of patients with neurological signs.

Bias can also arise from how patients are recruited. Will they select a truly random sample? We don't know anything about this either.

@Jonathan Edwards what do you think about this?
 

Cheshire

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I don't know who this guy is (his profile says he is working on disease genomics and molecular mechanism determination for lncRNAs and protein coding genes @ Edinburgh University):


Broad cohort with people experiencing PEM would be more acceptable than broad fatigue cohort.
There would still be problems with the way PEM is defined though.
 
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A.B.

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Broad cohort with people experiencing PEM would be more acceptable than broad fatigue cohort. There would still be problems with the way PEM is defined though.
Broad cohort with mandatory PEM sounds similar to SEID. Which is OK as long as PEM is properly defined. Again there are concerns here because White et. al. do not acknowledge PEM but seem to view it as some sort of hysterical overreaction to ordinary symptoms arising from deconditioning.

And if White will have a say in all this (we don't know yet) then it could lead to presence of PEM being defined as positive answer on a question such as "do you feel tired after exercise". Then we would have a study that claims to be studying a PEM population but actually doesn't.
 
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Cheesus

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I can see the point of a very large study with inclusive criteria. It could advance knowledge quite a bit, but it needs to be done properly. We have not been given any details.

Concerns about "broad criteria" are justified when in the UK that has traditionally meant Oxford criteria which permits exclusion of patients with neurological signs.

Bias can also arise from how patients are recruited. Will they select a truly random sample? We don't know anything about this either.

@Jonathan Edwards what do you think about this?
I had not known that the Oxford criteria can exclude patients with neurological synptoms. What strange criteria! Your concerns all seem very sensible and I hope that they are addressed.

Does anyone know how they can take a random sample when the criteria for inclusion are necessarily subjective?
 
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