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

Casablanca 2.jpg
“What a terrible injustice! - - Ilsa, I'm no good at being noble, but it doesn't take
much to see that the problems of some 17-24 million little people don't amount to
a hill of beans in this crazy world when a couple BPS researchers' feelings are
being hurt. Someday you'll understand that."



ETA: I didn't realize it at first, but I must have been inspired by @duncan's post.
duncan said:
"It's still the same old story.
A fight for love and glory,
A case of on-line activists against scientists."

This is a familiar tune.
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rvallee said:
has Kelland just dismissed whatever did not fit her narrative?
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In my opinion, that is precisely what she has done.
I gave her a lot of information to follow up on during the near hour long telephone conversation I had with her in September last year, but she has apparently made no effort to look into the kinds of published research which would contradict / undermine Sharpe's position.
She also seemed to me to be uninterested in the importance of adhering to the scientific method when conducting research, nor bothered by the serious methodological flaws which render PACE worthless.
https://app.box.com/s/udxzmmznsb8d2aamllzbjmba9xnn2w4m
 
It seems one tactic of those in power, in response to valid complaints is to take away all other options/solutions."You people don't want counselling and exercise, then you will get nothing - we've all closed up shop." Or, you don't like what we have on offer, well, there is nothing else. Which as it happens has been what has been said for quite some time - there are no other therapies. But, very little has been done to find any.
 
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DokaGirl said:
Although the article seems to encompass all ME researchers, that is, the uninitiated reader may think this is the case, the article is only talking about some PS researchers. The article sounds like all researchers are concerned, and the majority of them have stopped their research.

Hmmm.....how about all the biomedical researchers who by definition don't support the unfounded BPS model of ME: the Open Medicine Foundation, Jarred Younger's group, Nancy Klimas' group, Ian Lipkin's group, Maureen Hanson's group, Alain Moureau's group, Don Stain's group etc., etc., etc.!

We don't hear that biomedical ME researchers are being "vexated".
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Yes, but I'm not sure raising that point will be helpfull - as the article focus' on 'propaganda' to silence the research patients (allegedly) just don't like, it will underline their point? That's actual a nice little tactic from them, trying to undermine the counter-argument.

If any of these researchers would go public to call out their research on the other hand, that would have an impact, I think. This is what's happening here, not until a few doctors/researchers would go out publicly, the debate started to be a bit more balanced.
 
I think it is disgraceful journalism to give such prominence to the comments by Paul and Anton in ways which seem to suggest that they are much worse than they are. It is all reminiscent of the graphics for the Hanlon article-making words seem to say things which they did not. Do the words attributed to Paul and Anton amount to intimidation, which is what they are held out as doing? I would submit not, unless Sharpe is very easily intimidated.

One presumes that either these were the worst examples which Kelland could find-in which case there really is no story- or she was required to find named individuals and obtain responses from them, and these were the only two identified.

Strange that someone who has made his living from telling people that they have dysfunctional cognitions and maladaptive behaviour is not more robust.
 
Just finished editing the shared doc for #MEAction's response.

Just... add a line. Delete it. Add a line... delete it.

How do you "let people know" that it's unethical to paint an entire disabled population as a group of violent maniacs? How do you explain that to someone who doesn't know it already?
 
Unger, explaining why CBT GET been removed at the CDC.... what a ruddy cop out.
The head of the CDC’s chronic viral diseases branch, Elizabeth Unger, told Reuters this was done to remove jargon and medical terms that are not widely understood by the public. “We received feedback that the terms were confusing and too frequently misinterpreted,” she said in an email response to questions.
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ETA.... However, as @Barry so rightly points out in post #156, we have no idea what Unger actually said to Kelland. And given the way she has treated the words of others to fit her agenda....
So have removed my angry emoji & acknowledge my comment may be unfair.
 
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DokaGirl said:
We don't hear that biomedical ME researchers are being "vexated".
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That's a good point, because whilst she chose to highlight one of my Tweets which was critical of Sharpe, there are dozens I've posted (before and since) in praise of M.E. researchers who go about their work in a proper manner and adhere to the scientific method.
No mention also about the content of this document - which I put together and update about twice a year:
 
DokaGirl said:
@inox

Not sure what you mean. Is it the PS researchers or the biomedical researchers you are noting?
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Not even I am sure what I mean :noteworthy: I think making the argument biomedical researchers don't get harassed will just underline their point, of BPS researchers getting 'harassed' because patient don't like their findings.

But I was still pondering about how to frame this article in the public debate, and I now realise that might not have been your intent. Sorry about that :) I do agree with your observation, how the article tries to twist the narrative.
 
The science is really, really poorly done, but it's like people desperately WANT to believe in it. We've spoken before about how deeply people wish to believe their health is in their own hands, but this goes to a deeper and weirder place, IMO. And the more we push, the more the True Believers seem convinced that they must be right, because you need to believe that to put yourself in a "fighting mood".

So then also they're genuinely hurting people with this. I've just gone through the Forward ME responses to GET and there were a few questions that have probed deeper and... the effects of GET are really, really grim. I mean, I knew they were grim, but GRIM. Actually, somehow, worse than I thought. I'm not trying to toss out a 'teaser', the results aren't released yet, but I'm trying to help you guys conceptualize how I'm feeling as I'm trying to tell these people that:
  • The science is genuinely bad
  • Your actions will lead to bad things for patients
  • You're telling everyone we're violent and not to be trusted
  • You're characterizing a very powerful man and his powerful friends as heroic underdogs
  • You're casting disabled people in particular as The Shadowy & Powerful Enemy
Ok, yeah, seems like about as good an idea as that NPR pain article.

I'll reiterate that even though my blood is on fire that attacking these people (as opposed to their work) is bad news. Most people are convinced by patience and science and reasonableness, if they're to be convinced at all.
 
JaimeS said:
Just finished editing the shared doc for #MEAction's response.

Just... add a line. Delete it. Add a line... delete it.

How do you "let people know" that it's unethical to paint an entire disabled population as a group of violent maniacs? How do you explain that to someone who doesn't know it already?
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Article: "Monsanto fed Reuters reporter Kate Kelland info to discredit IARC researcher"

https://www.gmwatch.org/en/news/lat...rter-kate-kelland-with-info-to-discredit-iarc
 
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