Cochrane ME/CFS GET review temporarily withdrawn

I share your caution @JemPD, I wish I didn't but I do. Everything you fear could come to pass. However, that is a fairly high risk strategy on behalf of Tovey/Cochrane. If it went wrong it could do then a lot of harm.

By even temporarily withdrawing (or saying they will withdraw) the paper because of unanswered questions put to the authors they are drawing further attention to the paper, the problems with it and the lack of rigorous science behind it. People with no real interest in ME/CFS will look at this because they are interested in what is happening to the Cochrane Group generally. We know this "science" won't stand up to unbiased scrutiny.

Colin Blakemore's comments are a mistake both on the BPSers part and his own, I think. Is it possible, given his past, Colin Blakemore is so fixated on the idea of "activists" that any reasonable criticism will be viewed by him as a threat? That his issues are severe enough he doesn't realize himself that he is grossly over reacting to reasoned argument? Let alone he is accusing severely ill, bedbound and housebound patients. Despite a judge in the ICO tribunal finding that there was no evidence for such claims in that case.

Is it possible Blakemore is being used & that is why he was chosen as a spokesperson here? He attempts to claim no connection with ME/CFS despite his role in the MRC, so he knows the BPS cast, but is guaranteed to run blindly with the activism accusation.

Either way, I think it reflects rather poorly on his judgement and could be damaging to his own reputation.

Unless they have some very good, as yet unheard scientific arguments then anyone standing behind this paper will be facing scrutiny and possibly risking their reputation I think.
 
It still hasn’t been taken down from the Cochrane website,

I know this story wasn’t put out by Cochrane so whatever plan they had has been overtaken by events

But it doesn’t take long to put together a short statement and take a web page down I used to work on a team that regularly did that within a few hours. The normal response would be to get your own message on your site as soon as possible. Its now Friday so it is even more important to get this done before the end of the week.

No doubt they are coming under a lot of pressure to go back on this decision I hope they don’t cave in to BPS activists.
 
I don't get why there isn't more focus on the whole "normal range" thing.



Is it really so hard to understand?

Tom and Bob (and others) had tried to point this out to Cochrane and The Lancet many times, but each time, the authorities have deferred to White's answers - even though they are clearly inconsistent (see protocol explanation vs what actually appeared in PACE 2011 vs graph of distribution - Twitter thread has the quotes).

I won't believe that Cochrane really do plan to withdraw it until it they do, and until *they* explain why.
 
Lucibee said:
Tom and Bob (and others) had tried to point this out to Cochrane and The Lancet many times, but each time, the authorities have deferred to White's answers - even though they are clearly inconsistent (see protocol explanation vs what actually appeared in PACE 2011 vs graph of distribution - Twitter thread has the quotes).
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I guess that the normal range stuff is less directly relevant to Cochrane's review than the recovery claims. Larun was still meant to look at all protocol deviations when assessing the risk of reporting bias, which would have included ll that, but it looks like she just ignored it.

Lucibee said:
I won't believe that Cochrane really do plan to withdraw it until it they do, and until *they* explain why.
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I suspect that they're having some long and difficult conversations about how to phrase any withdrawal notice now. I wonder if they're getting any pushback from people within Cochrane?

My hope/expectation is that Larun's response to the concerns about her work and the decision to withdraw it makes it very difficult to believe that anyone is going to think she is a suitable person to conduct a CFS review again. She has really raised the stakes on her reputation, and I think it's going to leave her looking much worse than she would have done.
 
I doubt Cochrane would have taken this step unless they felt strongly about it and believed they could make it stick. The article clearly was a preemptive strike by Larun and probably SMC enablers, likely before Cochrane was ready to announce anything publicly because discussions were still ongoing--although per Larun those were monologues and not dialogues. I think to take this step, given whatever enormous pushback they were getting and knew would get from Wessely et al, took some guts on David Tovey's part, at least from my perspective. He had no reason other that concern about the issues raised by Kindlon, Courtney and many others to do something like this, especially given everything else they are having to deal with unrelated to this review.
 
Esther12 said:
I guess that the normal range stuff is less directly relevant to Cochrane's review than the recovery claims. Larun was still meant to look at all protocol deviations when assessing the risk of reporting bias, which would have included ll that, but it looks like she just ignored it.
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But "normal range" is *directly* relevant to "recovery", because recovery is defined by "getting back to normal" or getting back into the "normal range".

Again, those different definitions matter, because they are used to justify the basis for recovery and improvement:

From 2006 Protocol: "A score of 70 is about one standard deviation from the mean of the adult UK population." [<<<referring to "improvement"]
From 2011 Lancet paper: "a score of 60" is "equal to the mean minus 1SD... of the UK working age population...for physical function." [<<<referring to "recovery"]
 
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Particularly damning is that White knew about the problem with the assumption of normal distribution for the SF-36 population reference data no later than 2007:

In fact, the PACE authors themselves knew that they were using a calculation that produced distorted findings. How can we be sure? Because the lead PACE investigator, Peter White, was the senior author of a 2007 paper that included this key information. The paper was called “Is a full recovery possible after cognitive behavioural therapy for chronic fatigue syndrome?” (Not surprisingly, the authors answered that question in the affirmative.)

In that paper, Professor White and his colleagues provided a caveat. They acknowledged that this standard method of determining ranges “assumed a normal distribution of scores” and noted that the formula would yield different results given “a violation of the assumptions of normality.” The paper further acknowledged that the population-based responses on the SF-36 physical function questionnaire were not normally distributed.

http://www.virology.ws/2018/04/24/trial-by-error-andrew-lloyds-past-endorsement-of-pace/
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The senior Principal Investigator for PACE, Prof PD White, knew the PACE SF-36 calculation was dodgy as hell, and used it anyway.

That is straight scientific fraud.
 
Lucibee said:
But "normal range" is *directly* relevant to "recovery", because recovery is defined by "getting back to normal" or getting back into the "normal range".

Again, those different definitions matter, because they are used to justify the basis for recovery and improvement:

From 2006 Protocol: "A score of 70 is about one standard deviation from the mean of the adult UK population."
From 2011 Lancet paper: "a score of 60" is "equal to the mean minus 1SD... of the UK working age population...for physical function."
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Right, but the recovery results aren't used in the Cochrane review, so while the spin there is still another reason for concern about selective reporting bias (although there are already plenty of reasons to be concerned about that with PACE), it is less directly relevant than some of the other problems.

edit: Actually, I hadn't really thought about your 'and improvement' point. Was the normal range problems a part of PACE's 'improvement' results?
 
I think the whole 'normal range' thing is disingenuous anyway, because even without all the other issues, & even if the specified normal range were/is accurate, 85 isnt fit & well, it indicates some issues. So i dont want to be 'within normal parameters' i want to be WELL. Anything other than 95 to 100 on sf36 isnt a fully healthy adult it seems to me (looking at the questions).
 
dave30th said:
I doubt Cochrane would have taken this step unless they felt strongly about it and believed they could make it stick. The article clearly was a preemptive strike by Larun and probably SMC enablers, likely before Cochrane was ready to announce anything publicly because discussions were still ongoing--although per Larun those were monologues and not dialogues. I think to take this step, given whatever enormous pushback they were getting and knew would get from Wessely et al, took some guts on David Tovey's part, at least from my perspective. He had no reason other that concern about the issues raised by Kindlon, Courtney and many others to do something like this, especially given everything else they are having to deal with unrelated to this review.
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Well you clearly know more about the players & the specifics here @dave30th, so i'm reassured by your comment :)
But i feel i need to protect myself emotionally so i'm not going to get excited until i see how it pans out.
 
Skycloud said:
I'm not counting my chickens either, but Cochrane can't afford egg on it's face. I'm cautiously optimistic.
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The immediate hostile reactions from most medical professionals indicate their reputation would end up better if they caved in to the researchers because it's all a matter of belief and the narrative of "powerful activist groups" is definitely being taken at face value, even with Tovey's quote stating it has nothing to do with it (though bang-up job on that article, SMC, they definitely have their ducks lined up).

What it depends is on long-term thinking. If they do cave to political pressure (you can bet Wessely and Gerada will abuse their authority here), hindsight will be absolutely devastating to them once we have that damned breakthrough and can finally end the discrimination phase.

So what does Cochrane value more here: short-term face-saving or serious long-term reputation? They'd have to be pretty damn confident that a bunch of lousy unblinded subjective trials will stand the test of time.
 


Cochrane and Blakemore

Rosie Cox·Thursday, October 18, 2018
EDIT: I did make this post public and then FB did its wonderful trick of turning all my posts into public posts so I had to revert it to F&F but do feel free to cut and paste with abandon
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:)

Wrt Cochrane 'temporarily' removing their ME Review and Blakemore's comments which have been attached to the Reuters piece ( https://in.mobile.reuters.com/article/amp/idINKCN1MR2PI) it's a good idea to understand why Blakemore is so critical and why, as pwme, we find him so abhorrent:
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Extract from “Magical Medicine – How to make a disease disappear” (February 2010)
Professor Colin Blakemore

Formerly Professorial Fellow at Magdalen College and Waynflete Professor of Physiology at the University of Oxford, between 2003 – 2007 Professor Blakemore served as Chief Executive of the MRC. He is a Fellow of the Royal Society and the Academy of Medical Sciences, amongst many other prestigious institutions, and has received numerous awards. Together with Simon Wessely, Blakemore works with and for the Science Media Centre and with its sibling organisation Sense about Science.

In 2003, a House of Commons Select Committee criticised Blakemore for his “heavy handed” lobbying of other members of the National Institute for Medical Research taskforce.

An interview with him on BBC Radio 5 Live broadcast on 22nd February 2005 encapsulated the essence of the iatrogenic problem that for over two decades has compounded the suffering of those affected by ME/CFS in the UK. If Professor Blakemore’s pronouncements had been about any other officially classified neurological disorder but the one in question, he would surely have been pilloried by the media and the public.

In the interview, Blakemore was asked “why, after several years of promises, the Medical Research Council has so far failed to fund any biological research into the physiological issues surrounding ME/Chronic Fatigue Syndrome that is recognised by the World Health Organisation as being a disease of neurological origin? Thus far the MRC has been seen to do not a lot more than perpetuate the status quo of funding psychological interventions (that) do not address neurological, cardiological, immunological and other abnormalities highlighted in international research that so far has been ignored in the United Kingdom”.

In response, Blakemore said: “I think to concentrate on this question of whether ME is thought to be a neurological or a psychological condition actually isn’t going to get us far --- I mean, compare the situation with depression: depression is a brain condition but depression can be treated both by psychological approaches and by drugs, so I don’t think we should look down our noses at psychological treatments. We accept that this is a real disease (but) we don’t understand its basis. We need high quality proposals – I think everyone would agree that they wouldn’t want taxpayers’ money wasted on bad science however important the cause” (Co-Cure ACT: Transcript of Radio 5 Live 23rd February 2005).

In his justification of the MRC’s position, Blakemore used the analogy of depression, but if he had used Parkinson’s Disease or multiple sclerosis, the analogy does not work. Perhaps without realising it, Blakemore articulated that the MRC does not recognise ME as a “proper” neurological disorder.

Blakemore’s assertion that there is no need to worry about whether or not the disorder is either psychological or neurological would seem not to be in accordance with the rigorous approach that is necessary for progress to be made in medical science. Did he really see no need to search vigorously for the cause of ME? If so, why does such an approach relate only to ME and not to all illnesses whose cause is as yet unknown, including cancer, multiple sclerosis and lupus?

What is the purpose of the MRC if not to conduct research into illness that will provide understanding of (and result in treatment for) a disease?

In its magazine “ME Essential” (February 2005), the ME Association’s Medical Advisor wrote: “Now some bad news. The MRC made it clear that priority should be given to funding further behavioural interventions. The ME Association believes that the MRC research strategy is seriously flawed and has called for money to be spent on looking at the underlying physical causes of ME/CFS”.

Blakemore, however, was unmoved. By letter dated 11th May 2005, he wrote to an independent ME researcher about the PACE and FINE Trials: “I reiterate that the trials were peer reviewed and awarded funding on the basis of the excellence of the science”.
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Esther12 said:
Was the normal range problems a part of PACE's 'improvement' results?
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Yes - because the first quote (from the 2006 protocol) is actually about improvement.

It's because they didn't understand what they were doing, that they ended up making the recovery criteria *less strict* (>60) than the criteria they had already set for improvement (>70), which is why they then had to change the improvement criteria too (increase of 8 pts - which I've just noticed they say is 0.5 SD - oh what a mess!).

[ETA: and that's 0.5SD of the SF36 at baseline - which is already a highly selected population :banghead:]
 
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JemPD said:
But that doesn't stop this temp. withdrawal being part of the game, & that Cochrane are doing this in order to silence criticism & bolster their flawed review (which they actually refuse to believe is such)... In the way i describe above.
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It isn't, but I am not in a position to say more.
Larun has actually failed to respond over a period of 18 months now. She has failed to respond to internal queries for many months. There are no possible responses to the peer review critique, other than saying that there is no evidence of any value for GET.

I don't think Tovey would have made this move if he was going to whitewash later. There was no need.
 
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