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

Trish said:
I've had a go at responding. Here's what I said:


After all that effort I think I'll have to spend the afternoon lying in a darkened room to recover. Who know whether it's worth it and anyone reads the comments.

Edit - looks like it's been deleted. My first comment sat there awaiting approval for a while and was then approved, this one had vanished. Oh well.
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As far as I can tell any comments made in the last couple of hours seem to be stuck in the 'approval pending' queue. Fingers crossed your reply will reappear later today...
 
Binkie4 said:
Have upvoted the sensible replies.

George Monbiot has asked

“Why would people who are sick attack medical researchers investigating their sickness?“ and this is all he says.

I think a specific reply to that question would help us get out our msg. There seem to be a few commentators recognising that ME is a real disease but misunderstanding why pwme would not welcome Sharpe’s research.

Am too fuzzy headed to attempt a reply but perhaps someone else can?
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George Monbiot is very well aware of the dark side of the SMC but it's hard to explain our situation to strangers without sounding like a conspiracy theorist.
 
Mine has not been posted either.
I went back to capture it to post here. There still seems to be some activity under George Monbiot’s comment. Perhaps it will appear later.

Could 2 similar posts not be posted?

ETA: ok. May be awaiting approval.
 
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SallyC said:
George Monbiot is very well aware of the dark side of the SMC but it's hard to explain our situation to strangers without sounding like a conspiracy theorist.
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That applies with a ton of what we have to try to get across to people in some kind of coherent fashion, and we're rarely successful, because they have to pay attention, they have to want to absorb what it is we're telling/showing them, and they have to find a way to not automatically classify it as conspiracy theory. Ironically Osler's Web most certainly did document a conspiracy, and anyone who doubts that need look no further at the late 90's CDC scandal when they were caught misappropriating a lot of money allocated for CFS and lying to Congress about it. But...the SMC issue is one I'm actually surprised has no traction.

The head of the SMC has a history that no one disputes yet no one seems to care about. The head of something called the Revolutionary Communist Party? If this was an American person in any standing when it comes to science--say someone like Neil deGrasse Tyson--this would be a career-killer. I will admit that presenting the bare fact sounds like something that couldn't possibly be true, but it's been well-documented. Of course the RCP morphed into Living Marxism that became Spiked!, where Michael Fitzpatrick wrote all those derogatory articles about ME, but that's another story...

https://en.wikipedia.org/wiki/Fiona_Fox
 
Thanks @Trish and @Stewart

Posted below is my answer to George Monbiot. Posted in Mr B’s name which attached itself automatically because he is the account holder. I had to adjust the comment slightly to accommodate this.


“This is a very good question. The answer is that they don’t. In fact they and their families support and often finance research through the Open Medicine Foundation, the ME biobank etc. What they don’t support is poor research which the Pace trial ( carried out by Michael Sharpe and others) exemplifies. Over 100 scientists and 10 MPs have asked the Lancet to retract that paper. This is not trolling but a debate between scientists. Patients as well have criticised the Pace trial research because of its poor quality which led to treatments that have harmed patients, and this is what Michael Sharpe and others object to. They object to their poor science being called out. Trolling is never acceptable. Nor is misrepresenting the truth of an argument. My wife is a patient with ME and each time these misrepresentations are widely circulated, influencing opinion so that money is diverted away from strong research, she feels sick to the stomach. Roll on research, good research based in strong science. “J B for Binkie.
 
rvallee said:
The vast majorities of tweets sent to Sharpe were polite and had clear, rational arguments. It doesn't take long to see it for anyone who bothers researching.
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It is notable that when people ask intelligent questions, particularly relating to ambiguities in his reasoning or evidence, he simply does not reply. But he does occasionally reply to the accusatory comments...

Esther12 said:
I'd avoid saying that now that we've seen what that twitter user has been sending (Quasar9uk). They were sending clear examples of abuse.
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Exactly, and it's quite reasonable to expect that similar things have been sent over email too. But instead we need to emphasise that such behaviour isn't characteristic of the community and legitimate criticisms shouldn't be ignored simply because of a few abusive patients.
 
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Esther12 said:
I'd avoid saying that now that we've seen what that twitter user has been sending (Quasar9uk). They were sending clear examples of abuse.

It only takes a couple of people acting terribly for it to be legitimate to say that there are problems with the abuse of PACE trial researchers.
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I really can’t agree with this @Esther12.
It is not reasonable to generalise to a whole population on the basis of one tweet.
I think we should keep arguing our case always emphasising that trolling is never acceptable. Otherwise we just allow ourselves to be misrepresented.
 
Trish said:
I've had a go at responding. Here's what I said:


After all that effort I think I'll have to spend the afternoon lying in a darkened room to recover. Who know whether it's worth it and anyone reads the comments.

Edit - looks like it's been deleted. My first comment sat there awaiting approval for a while and was then approved, this one had vanished. Oh well.
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Excellent and to the point!
One such scientist comments,
PACE trial for chronic fatigue syndrome (still) being put through its paces: a reply

I'm bringing the paper published by Michael Sharpe and colleagues [1] to your attention today in the interest of balance and peer-reviewed 'right to reply'.https://questioning-answers.blogspo...inmxO0U538e-QPOkBtR2XmOLgWglJPR1JNGfEiJvgMI04

Author has impeccable credentials and good friends! http://www.espa-research.org.uk/aboutus.html ..
 
large donner said:
Well it was a post full of hypotheticals.

Actually I would ride of on my mobility scooter so Trish would have to play along a bit and come to the door slowly, which she would probably have to do anyway, so maybe I could "run" off as Trish shuffled to the door.
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With apologies for diverting the thread, here's a hypothetical Trish shuffling to the door.
109665686-old-hunchbacked-witch-with-walking-stick-and-black-cat-on-her-shoulder-isolated-on-white-background-.jpg
 
Binkie4 said:
I really can’t agree with this @Esther12.
It is not reasonable to generalise to a whole population on the basis of one tweet.
I think we should keep arguing our case always emphasising that trolling is never acceptable. Otherwise we just allow ourselves to be misrepresented.
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I think that we must be interpreting things differently.

I saw this comment "Why would people who are sick attack medical researchers investigating their sickness?"

as meaning that some people who are sick are attacking medical researchers investigating their sickness, not as a generalisation about sick people in general.
 
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.

That's quite an amusing quote. Pathetic ego driven games would not sound too implausible.
 
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