Special Report - Online activists are silencing us, scientists say Reuters March 2019

@dave30th quoted the email that Michael Sharpe sent to the editors of STAT News to get them to retract @julierehmeyer (is she not a member here?)'s 2016 piece detailing the problems with the PACE study.

If I remember correctly, it was Peter White who contacted University of Manchester to complain about Keith Geraghty (I was sure he was a member but the autofill isn't showing up various iterations of his name that I've tried) but don't have the link at hand.
 
@dave30th quoted the email that Michael Sharpe sent to the editors of STAT News to get them to retract @julierehmeyer (is she not a member here?)'s 2016 piece detailing the problems with the PACE study.

If I remember correctly, it was Peter White who contacted University of Manchester to complain about Keith Geraghty (I was sure he was a member but the autofill isn't showing up various iterations of his name that I've tried) but don't have the link at hand.

Yes, that was my memory too. So Sharpe's reply doesn't contradict that information as complaining to editors about an article would generally not be seen as being the same as complaining to a researchers institution.
 
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... says the man who recently requested retractions ...

https://www.s4me.info/threads/trial-by-error-professor-sharpe’s-retraction-requests.8230/

... but I guess it's different when he does it.

Says also, the man who (allegedly) lodged complaints with the employer / host University of an academic, who dared to criticise the PACE trial.
Says also, the man who (allegedly) asserts that it is a conflict of interest to suffer from the same illness that you're researching.

https://me-pedia.org/wiki/Intimidation_and_bullying_of_PACE_trial_critics#Keith_Geraghty
 
One has to wonder what is the duty of disclosure of a supposedly serious news outlet. One sometimes sees reports in which it is stated that the report is produced in conjunction with others and providing reference to further extrinsic material. That seems absolutely legitimate. In this case there seem to be only two possibilities. Either the report was produced to coincide with publication of the Sharpe et al correspondence, in which case readers should have been informed. Or it wasn't, in which case there should be a caveat printed explaining the unfortunate co-incidence.

There must also be some contractual duty to those outlets which have, presumably in good faith, produced syndicated copies of the article. Were they all made fully aware of the circumstances and that they might be made to appear to be part of an orchestrated campaign?
 
I was wondering if it would be worth lodging a complaint with the Independent Press Standards Organisation, this is the new regulatory body that replaced the Press Complaints Commission in 2014. However, apparently they only regulate press organisations that are members, and, inconveniently, I don't see Reuters listed. I'm just noting this in case anyone else had the same thought.

I've no idea what the complaints procedure is for Reuters then, if there is any external regulator we can appeal to or an internal process only.
 
I was wondering if it would be worth lodging a complaint with the Independent Press Standards Organisation, this is the new regulatory body that replaced the Press Complaints Commission in 2014. However, apparently they only regulate press organisations that are members, and, inconveniently, I don't see Reuters listed. I'm just noting this in case anyone else had the same thought.

I've no idea what the complaints procedure is for Reuters then, if there is any external regulator we can appeal to or an internal process only.

I wrote an email complaint about the last awful Reuters article Kate Kelland wrote, (the Cochrane one), citing that it betrayed their own Trust Principles and received no acknowledgement whatsoever.

https://www.thomsonreuters.com/en/about-us/trust-principles.html
 
From The Times article (much shorter than the Reuters one)
Some good, some bad.
They get the definition of CFS wrong:

The syndrome (CFS) is a disorder typified by tiredness, joint pain, headaches and sleep problems which can leave patients unable to leave the house.

The good bit:
Some academics have also criticised its methodology. A letter signed by researchers from eminent institutions argued that the criteria used in the trial meant that people could show no improvement but still be classified as cured, something they called an “unacceptable methodological lapse”.

In 2017 the Journal of Health Psychology claimed that “the results were, at best, unreliable, and at worst manipulated to produce a positive-looking outcome”, although several members of the journal’s board resigned before publication in protest at what they saw as a “one-sided” editorial stance.

Wessely quote:
Sir Simon Wessely, of King’s College London, said that he had also stopped researching CFS treatment after “relentless internet stalking”. One tweet accused him of playing “pathetic ego driven games” with the lives of people.

Actually, I don't think it's too bad - the two tweets mentioned are hardly severe harassment. I think readers will wonder on the basis of this article what all the fuss is about if that's the worst they have experienced.
 
I wrote an email complaint about the last awful Reuters article Kate Kelland wrote, (the Cochrane one), citing that it betrayed their own Trust Principles and received no acknowledgement whatsoever.

https://www.thomsonreuters.com/en/about-us/trust-principles.html

www.customercare.org/thomson-reuters-complaints

This link seems to suggest that they recognise a problem in dealing with initial complaints and have in place a mechanism for dealing with it. Whether it works is another matter.
 
I've posted a response to the Times article. Whether it will pass their moderation I have no idea. Here it is, for the record:
When the data from the PACE trial, run by Sharpe and others, was reanalysed according to the researchers' own protocol it was found that the 'treatments' CBT and graded exercise therapy were no better than placebo effects. To get the results they wanted, the PACE researchers moved their definition of 'recovery' - after the data had been collected - so much that on some criteria a patient could be both classed as disabled enough to take part in the trial, and 'recovered'. Such overlap of entry criteria and recovery criteria is completely unscientific and should never have been published. Hundreds of good scientists are appalled by the unscientific work carried out by Sharpe and others.

The PACE researchers used a definition of 'chronic fatigue syndrome' that only required 'six months disabling fatigue'. ME is a serious illness whose cardinal defining symptom is not just fatigue, but post exertional malaise. That means sufferers are made significantly sicker by trying to do normal activities due to severely reduced exercise capacity. It also includes rapid muscle fatiguability and slow recovery, as well as a host of other unpleasant an disabling symptoms. Sufferers have been made significantly worse by trying to push through and exercise.

Objections to the treatments prescribed by Sharpe and others (which don't even work for fatigue) being applied to ME sufferers are based on the treatments not working and making patients sicker. Sharpe himself repeatedly reiterates on Twitter that his research was about CFS, not ME, yet the treatments are being applied to people with ME and are, according to large patient surveys, making many people with ME sicker.

The patient community do not condone on line harassment of anybody, but nor do they condone psychiatrists using the media in an orchestrated campaign to denigrate people with a severely disabling illness on the basis of a few unpleasant tweets from a few individuals who may or may not have ME.

Patients with ME and/or CFS are desperate for good quality scientific research and support wholeheartedly the scientists carrying out such research, much of which is funded by donations from sufferers and their families. They do not object to science, they object to research that is of such poor quality that it causes harm, and to the perpetrators of that unscientific research using claims of 'harassment' as a smokescreen to try to avoid their bad science being uncovered.
 
The world’s largest trials registry, clinicaltrials.gov, indicates that over the past decade there has been a decline in the number of new CFS/ME treatment trials being launched. From 2010 to 2014, 33 such trials started. From 2015 until the present, the figure dropped to around 20.

Anyone able to replicate this finding?

I have been to the site and done a search. I get over 100 studies returned (many from China), but I don't see how to limit the search terms to trials started in any one year.

https://clinicaltrials.gov/ct2/home
 
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