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

Going off at a tangent, psychological and personality factors have been implicated by doctors and researchers in people catching tuberculosis for 200 years? or more? How did such beliefs help anyone get better? How many people were cured?

Research into the personality of patients with tuberculosis is still being written about now. If the researchers involved were researching how to get homeless or alcoholic or poorly educated sufferers to take their antibiotics then I could possibly see the point. But generally, going back into history, a lot of it looks like waffle.

How would modern patients with tuberculosis feel about these research papers from 1948 and 1961? They achieve nothing in terms of making the patient any better and are simply a waste of research resources (although I admit I couldn't get hold of the full papers to be absolutely sure).

A study of personality in pulmonary tuberculosis.

Psychosocial study of the patient with pulmonary tuberculosis: A cooperative research approach.

I think that it could be argued (if I was any good at arguing) that people with ME are in the same position that tuberculosis sufferers were in in the early part of the 20th century or the latter half of the 19th century.
 
Jonathan Edwards said:
And this makes Wessely look a complete twerp:

Simon Wessely, a professor of psychological medicine at King’s College London and former president of Britain’s Royal College of Psychiatrists, said he decided to stop conducting research into treatment approaches for CFS/ME several years ago because he felt the online abuse was detracting from his work with patients.

If you believe your research is helping people you do to stop because of abuse. That is just plain cowardice.
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Yes, hardly worth an award for bravery and standing up for science if what you actually do is fold your tent and run away leaving your patients without your help.
 
Returning to a CFS/ME project would make her feel physically sick with anxiety
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Shes not fit to write a Cochrane review then if she cant handle the scientific critique.

She admits to not being able to handle the critique. She has been given over two years to address the issues raised against her by Cochrane via Bobs dissection of her review and has failed miserably.

Meanwhile Wessely and Sharp claim to have run away into other fields, actually due to critiques from patients AND their own peers in academia which they fail to be able to address adequately .

White retired and ran way from his University when he failed to address the critiques scientifically and cost the University £250,000 trying to block data release for his dubious claims and Crawley had to make up bogus libel claims as a distraction from critiques raised against her from academics from all over the world.


So what are any of these people doing in the research fields in the first place?
 
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Unable said:
Thinking of the last Kate Kelland piece on the anticipated Cochrane review withdrawal. I thought in that piece she included enough detail for an astute reader to pick up some concern on the real issues.

And this article too (as I said up thread somewhere) gives strong hints towards an underlying problem. I’m not sure the BPS folk will be as pleased with the article as all that. Sure the headline is all their side, but deeper reading does give readers hints about where to find more about patient concerns.

Mentioning the CDC change is good too. Thinking folk will wonder about that detail.
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chrisb said:
Does anyone else suspect that strong editorial control may have prevented publication of the report that some might have wished for?
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You guys might be onto something there.

Rick Sanchez said:
So we were right all along.

Sharpe was intentionally trolling patients on Twitter to try and make a case for himself as a victim of online ''abuse''
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It was so obvious, wasn't it.
 
Kate's article is a bunch of nonsense, as everyone can see. I see no reason to avoid sharing it or linking to it. I actually suspect the lack of any scientific discussion will indicate to intelligent readers that they have no arguments other than complaining about "abusive" critics.
 
Got to disagree with you there @dave30th. Unfortunately I don't believe we live in a world of intelligent readers who can read between the lines. We live in a world where there is great reverence for authority, and this article uses that in spades: Poor Oxford professor just trying to help people.
By sharing it, we continue the debate, as if there is even a debate left to be had. I would much rather people took this opportunity to share your work instead.

Furthermore, by linking and sharing it, we prove to Reuters that this sort of article can get the traffic they desire, increasing the likelihood they run another piece like it in the future. In this instance, I see our silence as more powerful.

Eta: if we had intelligent readers PACE would never have happened!
 
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LONDON — The emails, tweets and blog posts in the “abuse” folder that Michael Sharpe keeps on his computer continue to pile up. Eight years after he published results of a clinical trial that found some patients with chronic fatigue syndrome can get a little better with the right talking and exercise therapies, the Oxford University professor is subjected to almost daily, often anonymous, intimidation.

A Twitter user who identifies himself as a patient called Paul Watton (@thegodofpleasur) wrote: “I really am looking forward to his professional demise and his much-deserved public humiliation.” Another, Anton Mayer (@MECFSNews), likened Sharpe’s behavior to “that of an abuser.”

Watton and Mayer have never been treated by Sharpe for their chronic fatigue syndrome, a little-understood condition that can bring crushing tiredness and pain. Nor have they met him, they told Reuters. They object to his work, they said, because they think it suggests their illness is psychological. Sharpe, a professor of psychological medicine, says that isn’t the case. He believes that chronic fatigue syndrome is a biological condition that can be perpetuated by social and psychological factors.

Sharpe is one of around a dozen researchers in this field worldwide who are on the receiving end of a campaign to discredit their work. For many scientists, it’s a new normal: From climate change to vaccines, activism and science are fighting it out online. Social media platforms are supercharging the battle.
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The New York Post picked up the story.

It goes on and on...
keep reading here:
https://nypost.com/2019/03/13/chronic-fatigue-activists-are-trying-to-silence-us-researchers/
 
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Gecko said:
Also #MEAction are proposing radio silence on this across this on social media, no sharing, no responding, no nothing. It's often us as a community who do more to boost this sort of piece in our outrage than anyone else. Hence trying a new strategy: silence.
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I came here to remind ppl of this but you guys have obv been aware much longer than me on the west coast! Glad to see very, very few statements/comments on the article despite it being out for ages. And while everyone is welcome to do as they think best as individuals, I do personally think it's the best course in this case.

chrisb said:
Does anyone else suspect that strong editorial control may have prevented publication of the report that some might have wished for?
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There's some decent evidence for that.

Rick Sanchez said:
So we were right all along.

Sharpe was intentionally trolling patients on Twitter to try and make a case for himself as a victim of online ''abuse''
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I think it's nearly heartbreaking how many of us caught that we were being baited. I know a lot of people who did some behind-the-scenes chatter to advise us not to take that bait. As a community of people painted mad, we have to be ten times as good and twelve times as patient.
 
Esther12 said:
The 'biological/psychological' thing is largely just a distraction that descends into word games imo. Whether they class ME/CFS as 'biological' or 'psychological' doesn't affect the quality of research like PACE.
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Exactly. I think the vast majority (all?) of us would agree that ME is not due to psychiatric issues. But if the science had been any good, I'd have had to have carefully re-examined my stance.

DokaGirl said:
Putting aside the debate about whether ME is biolgical or psychological only the psychological has been focused on by governments. Wilfully neglecting the enormous biomedical apsects of this illness is a human rights issue.
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Well said.
 
Will someone not speak out for the poor cancer patients

"Sharpe no longer conducts research into CFS/ME treatments, focusing instead on helping severely ill cancer patients."

After a few years of treatment for breast cancer I am of course flattered that I could be considered "severely ill" rather than just a difficult and vocal ME patient.

It's been refreshing to work with cancer doctors who use evidence based methods, don't mind me bringing in research articles to discuss, answer my questions, order the right tests and in one letter to my GP remark that I am a woman quite capable of making her own decisions over medical care.

What's Sharpe going to do for these cancer patients exactly?
 
Gecko said:
Furthermore, by linking and sharing it, we prove to Reuters that this sort of article can get the traffic they desire, increasing the likelihood they run another piece like it in the future. In this instance, I see our silence as more powerful.
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There is no discernment between clicks to disagree and clicks to agree. It shows up as a "popular article" and Reuters will continue to publish things like this because they drive traffic. All any news outlet cares about.
 
ukxmrv said:
It's been refreshing to work with cancer doctors who use evidence based methods, don't mind me bringing in research articles to discuss, answer my questions, order the right tests and in one letter to my GP remark that I am a woman quite capable of making her own decisions over medical care.

What's Sharpe going to do for these cancer patients exactly?
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Perhaps undo these options?
Its amazing to me that these psychosomatic pushers think of their constructs like a growth oriented business who thinks expansion at any cost will supercharge their profits. Except instead of money they seek to expand the purview of their influence and convince themselves they are actually doing patients a favour.
 
ukxmrv said:
What's Sharpe going to do for these cancer patients exactly?
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"
My research aims to understand the psychiatric aspects of medical illnesses and their treatments, to develop novel interventions for these that are integrated with medical care and to evaluate these in rigorous clinical trials.

My current interests are in developing integrated medical-psychiatric treatments and services especially for people with depression that is comorbid with medical conditions such as cancer and for elderly medical inpatients."

https://www.psych.ox.ac.uk/team/michael-sharpe

"novel interventions" ??
 
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