BIG NEWS! Cochrane to remove GET amidst deluge of complaints

[Countrygirl]

https://in.reuters.com/article/us-h...-6IPxd50aldNH_tjG6S41Ox18m9B6mJcsNo152s3lTGUE

Warning! The article itself is disgraceful..........

Exclusive: Science journal to withdraw chronic fatigue review amid patient activist complaints

Kate Kelland
8 MIN READ

LONDON, Oct 17 (Reuters) - A respected science journal is to withdraw a much-cited review of evidence on an illness known as chronic fatigue syndrome (CFS) amid fierce criticism and pressure from activists and patients.

The decision, described by the scientists involved as “disproportionate and poorly justified”, is being seen as a victory for activists in a research field plagued by uncertainty and dispute over whether CFS, also known as myalgic encephalopathy (ME), has physical and psychological elements.

Emails seen by Reuters show editors at the influential Cochrane Review journal asking researchers who conducted the analysis, which was published in April 2017, to agree to it being temporarily withdrawn.

Blakemore said this was a sign of Cochrane’s editors sidelining evidence under pressure from CFS/ME campaigners who insist their illness is a physical disease and not a psychological disorder.

On the decision to move CFS/ME work out of the Cochrane’s mental disorders section, Tovey confirmed to Reuters that this was made in response to feedback from CFS/ME patients and campaigners.

CFS/ME is a “complex” disorder and categorizing it in the mental health section “clearly causes some offense”, he said.

 

[alex3619]

We need to be careful to put this in perspective. Somehow they ignored, dismissed or were unaware of the growing number of world class scientists who are saying what we are saying. Its not patients, alone, or activists, alone, its a growing number of scientists with impeccable credentials. Reuters needs to cover that as well.

 

[alex3619]

PS It does not help that they are following the standard misrepresentation and bias either. I for one do not care if ME is considered psychiatric or not, I want good science. The substance of the science is important, not the label. We are not getting good science. We are getting atrocious "science" that does not meet the minimal requirements of what I consider even substandard science. Its not really science at all.

This is not being fought on the scientific merits, if it was we would have already won. This is being fought through politics, zombie science, and public relations. To the extent that science is involved its about the scientific establishment, not the science, who are supporting this. The emphasis is on establishment, and most of these do not seem to be scientists but doctors and others who do not adhere to sound scientific practice. That includes some under the Cochrane banner.

We do need to try to keep in mind that we need to address the public relations as well as the science. I almost did not write this post because of this potential conundrum. However I think something needs to be said, and we need to provide our own narrative, one based on evidence, reason, and sound scientific practices.

 

[Mary]

Warning! The article itself is disgraceful..........

The article is horrible! I always thought Reuters was an impartial news service . . . now if they get flak for it, it will be those darn activists acting up again! dang.

 

[Mary]

The article also contained this sentence:

They also ask the review’s authors to agree to a statement saying their analysis requires “further work in response to feedback and complaints”.

Really? If only --

 

[alex3619]

Really? If only --

So far the PACE authors themselves have responded to a lot of criticism, but failed to actually address any of the issues. I wonder if this might be more of the same. I hope not, but we have to wait and see.

 

[Seven7]

But I thgoutb this was good news, if crocane is pulling the article. Or is it bad the coverage of it??? Not sure what I am missing here

 

[taniaaust1]

But I thgoutb this was good news, if crocane is pulling the article. Or is it bad the coverage of it??? Not sure what I am missing here

its both good and bad Inester. Of cause good that such shitty science is being pulled but bad in that way they made it sound they were just doing it due to patient pressure...rather then cause it is poor science.

 

[taniaaust1]

this will create this thing of "those poor scientists unfairly harrassed by this patient group" so they were forced to pull their research. It could also put off other researchers coming into the field. It just adds to the bad repretation in a way that those who have ME/CFS have already been given and plays into that old calling us of us as being millitants and other things. This article can be twisted by those who have made his look badly before.

 

[HowToEscape?]

@alex3619

"This is not being fought on the scientific merits, if it was we would have already won. This is being fought through politics, zombie science, and public relations. "

Much of society seems to be going this way. Screech over science, noise over knowledge, promoted by the institutions with respectable names.

 

[Lisa108]

If it were possible that patients/activists could simply force their worldview on a scientific body like Cochrane:
Why haven't I heard of anti-vaxxers, flat-earthers, or HIV-deniers forcing Cochrane to retract any study?

Seems like our 'complaining' must have had a point...

 

[Countrygirl]

https://www.cochranelibrary.com/cdsr/doi/10.1002/14651858.CD003200.pub7/full

Just so we know the paper being referred to here this is the link.

https://www.cochranelibrary.com/cdsr/doi/10.1002/14651858.CD003200.pub7/full

 

[Countrygirl]

Mrs Wessely aka Dr Claire Garrada has her say on Twitter:

https://twitter.com/i/web/status/1052636273180139520

Clare Gerada #FBPE‏@ClareGerada
FollowFollow @ClareGerada
More
withdrawal decision sets a worrying precedent for scientific evidence being over-ridden by the opinions of activists. (Colin Blakemore). > sad we are entering an era of bullying scientists when lobby groups disagree with the results.

12:03 PM - 17 Oct 2018

 

[taniaaust1]

But in an email seen by Reuters, Cochrane editors Rachel Churchill and David Tovey say the review had received “extensive feedback” which they now considered grounds for it to be temporarily removed.

Tovey confirmed to Reuters that he had made a decision to withdraw the review temporarily, saying this would give the authors time to respond to several points in a complaint which “we felt ... raised issues we needed to address”.

“This not about patient pressure,” he added in a telephone interview. “This was a decision we reached with difficulty because we know the incredibly challenging environment this review sits in.”

that above is good to see in the article. https://uk.reuters.com/article/us-h...mid-patient-activist-complaints-idUKKCN1MR2PI

We almost need a media campaign out there to keep pointing out that Cochrane editors have stated that this is not about patient pressure to counteract all the crap which is going to be directed our way. Its a case of them wanting to make sure the science behind it is good.

those editors should be sent thank yous for helping to make sure science is good!

 

[Wonkmonk]

 

[Wonkmonk]

"Scientists conducting studies on potential therapies say they are often harassed and verbally abused by groups that disagree with their approach."

Happens only if you promote hypothetical poorly conducted doctored bullsh*t studies based on totally unproven psychosomatic theories.

 

[Gijs]

I hope that some ME/CFS experts will react (together) to this article with a letter. Or David T?

 

[Countrygirl]

The fightback begins: the SMC have obviously been up all night sucking their pencils wondering how they can mitigate the damage and blame those pesky patients again. Solution: lie and lie again...............it worked before after all........................so let's try it out on the Chinese first....................

Here is what they have come up with:

https://www.scmp.com/news/world/art...br5JqCfbG_67bEKd0nb5RXYxik5zN92PYsOXyWxWytC18


Scientists appalled as journal withdraws chronic fatigue study that prescribed exercise, after patient-activist complaints

The research was criticised by activists who believed it diminished the nature of their condition, but researchers say the decision to pull the study is an unscientific capitulation.

Blakemore said this was a sign of Cochrane’s editors sidelining evidence under pressure from CFS/ME campaigners who insist their illness is a physical disease and not a psychological disorder.

He also warned of the risk of wider effects on all patients if a respected scientific journal like Cochrane “capitulates” to lobbying from small numbers of vocal patient campaign groups.

Blakemore denies any association with ME research, but he was, I believe, head of the MRC when PACE was funded.

I started to research his link with the PACE authors, but was presented with accounts of his animal experimentation such as sewing together the eyelids of kittens together, and I could go no further. We clearly aren't the only ones to suffer from his presence in the scientific world, sadly, for all the good he may, or may not, do for other groups.

He was presented finally with a knighthood which was always denied him previously because of his horrible experiments on animals. I was always told in childhood, a knighthood usual confirms corruption in the person's life and is not something to be admired in many cases. Life has taught me that there is a lot of truth in that piece of wisdom.

 

[Seven7]

So what is the community plan to action here, how do we get press with the real story? I was going to tag David T but don’t know the user name.

 

[Countrygirl]

A bit more digging reveals that Blakemore works for..............or did.............the Science MEdia Centre along with Sir Prof Simon Wessely.

Prof Hooper wrote an article about him back in 2010 in which he writes:

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”.

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).

He has never been a friend of the ME community it seems.