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

[Wonko]

If it hadn't been for PWME I doubt any of these would have occurred. Some I know to have been as a result of the actions of PWME, even if the pathway complex.

I'm not disputing that, it's obvious, but the 'events' you mention were the decisions of others, the free decisions, presumably based on the evidence they were made aware of and the actions of certain people in the BPS coterie seeming out of order, to the people who made the decisions.

PwME didn't silence, or cause to have silenced, anyone. Or even attempt to.

 

[Jonathan Edwards]

the decisions of others, the free decisions, presumably based on the evidence they were made aware of and the actions of certain people in the BPS coterie seeming out of order, to the people who made the decisions.

PwME didn't silence, or cause to have silenced, anyone. Or even attempt to.

That is certainly how it looks to us, but it might not look like that to someone on the receiving end!

 

[Snow Leopard]

One thing that no journalist ever asks of these researchers who are, allegedly, in deadly danger from mad patients is...

Look, while the danger is mostly just people writing nasty emails and tweets, we shouldn't keep demanding evidence of how bad the danger is. We should be telling people that such things aren't really helping anyone (as Esther12 is saying) and pointing out it is a small minority of people participating in such behaviour.

 

[chrisb]

Perhaps PWME can be seen as a "Causa sine qua non", rather than a "causa causans".

 

[Esther12]

I wouldn’t choose to use the specific swear word Quasar used in that tweet. But I’ve seen much worse stuff on Twitter and as someone able to get to football matches in person I am absolutely au fait with bad language. I think it’s use is pretty common place. I use it (bad language) myself. Let’s face it Quasar is a person with ME who like all of us has challenges to face including pain. If the worst thing they’ve ever done is drop the C bomb it’s hardly a major crime. They’re not a Cabinet Minister or a Bishop or Professor who may be expected to meet a certain standard in their pronouncements.

They chose to respond to an article that used concerns about on-line abuse of researchers to distract from and dismiss criticism of the PACE trial with direct personal abuse to those researchers. Quasar wasn't just swearing to himself in his own home. Personally, I've got no problem with swearing, but for Quasar to choose to respond in the way he did is appalling and will be used to harm others. That's just not acceptable.

 

[Alvin]

Look, while the danger is mostly just people writing nasty emails and tweets, we shouldn't keep demanding evidence of how bad the danger is. We should be telling people that such things aren't really helping anyone (as Esther12 is saying) and pointing out it is a small minority of people participating in such behaviour.

Its a divide and conquer tactic on their part, they want to dominate the conversation by painting us as evil violent people to not be listened to. By keeping the conversation about how under threat they are they prevent more productive conversation and they prime their audience to listen to them and not us or actual researchers.

 

[JaimeS]

many ME sufferers are dealing with great hardship and pain and that it's inevitable that from time to time their frustrations are going to slip out.

Yeah.

Hey, guys, I think I need to step away from this for now, for my own well-being. Contributed to "the fight" nonstop for a few days. It's absolutely draining.

Someone online wanted to educate me that there is more than one organism in the fungal Kingdom last night. I taught science at multiple levels for a decade, and worked at the SGTC where one of the main things that they focus on is yeast-derived natural products... I'm aware.

I think it's the ladyface that does it. Maybe I should follow y'all's lead and replace it with a crane or something.

 

[Andy]

Which reminded me of https://www.nature.com/articles/d41586-017-08965-0

 

[rvallee]

Of course, people can choose who they block on twitter, which controls who can reply to your tweets. Sharpe didn't block @quasar9uk, but I saw he did block Lucibee and others. I guess that could help explain things.

That's exactly why. He either blocks people who criticize him or they stop trying after he responds with trolling.

It's pretty clear Sharpe has never been interested in listening to anything. Many of us have tried. I got angry at the end but like many others I sent dozens of polite tweets with clear arguments, facts, links, etc. He doesn't care, all he wants is to cherry-pick bits here and there to play his victim card so all that's left is a few trolls who interact with him that he doesn't block for that purpose, sock-puppets and the guy who keeps telling everyone who replies to him to never contact him ever again.

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.

Actually that would make a great article all by itself, to contrast the reality with the cherry-picked fiction they invented to support the narrative. Anyone up for doing a bit of gathering on this on its own thread? I'll pitch in if we can have enough hands to make it work collaboratively.

The vast majority of tweets paint this picture:

 

[rvallee]

Look, while the danger is mostly just people writing nasty emails and tweets, we shouldn't keep demanding evidence of how bad the danger is. We should be telling people that such things aren't really helping anyone (as Esther12 is saying) and pointing out it is a small minority of people participating in such behaviour.

The nastiest tweets they can come up with are quasar's and I rarely ever see anyone interacting with that account. No likes, no retweets, no replies. There's another I can think of and it's largely the same, rarely any interactions. We're "telling" people with bad arguments by not paying attention to them because we are not some organised group of anything. People do what they choose to do and we're not the Stonecutters, we don't control the British pound or keep the metric system down. We're sick and stigmatized, that's it.

They literally did the equivalent of pointing at someone screaming on a street corner and claiming it's representative of a quiet sit-in protest happening close by. That person may or not be related to but that is irrelevant because guilt by association is an unacceptable argument. Bad faith arguments like that will look especially bad with hindsight, it will make them look like ghouls, whatever tiny gain they may feel today.

 

[dave30th]

Hey I haven't participated much in this discussion about the piece. I'm mulling the appropriate response. It's really gross journalistic malpractice. Smart journalists--at least in US--should be able to see that, as Amy Maxmen's tweet cited above shows. She called the story "twisted." This story was reported and edited out of the UK. In the US, editors would be shocked at reporters engaging in public relations activities for organizations serving as sources for their stories. So we'll see how this plays out going forward.

 

[duncan]

In the US, editors would be shocked at reporters engaging in public relations activities for organizations serving as sources for their stories.

Well, in general, yes. But some US reporters have been all too willing to act as pr arms by proxy for organizations like the CDC and the NIH - and editors allow these pieces even when they are aware the topic may be considered controversial in some circles.

 

[Lucibee]

Smart journalists--at least in US--should be able to see that

The New York Times carried it uncritically...

 

[duncan]

The New York Times carried it uncritically...

I am a huge NY Times fan and I cannot begin to scratch the surface of the boilerplate crap they've run about Lyme. I seem to recall a lot of CFS sludge in the past, too.

 

[DigitalDrifter]

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.

I find this description to be very disingenuous, given that for all intents and purposes he treats it as a mental illness.

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.

Here the author tries to discredit patients by comparing them to climate change deniers and anti-vaxers.

Chronic fatigue syndrome, also known as myalgic encephalomyelitis, or CFS/ME, is described by specialists as a “complex, multisystem, and often devastating disorder.” Symptoms include overwhelming fatigue, joint pain, headaches, sleep problems and isolation.

Still conflating ME with fatigue, where's the mention of harm from exercise?

 

[Alvin]

If anyone is going to do any more twitter replies perhaps mentioning some of the own goals is an idea, from Godwin to some of the others.

 

[duncan]

Is isolation a symptom?

 

[Dolphin]

It's disappointed to see that Medscape have now published it:
https://www.medscape.com/viewarticle/910310

 

[JaimeS]

#MEAction is running their letter out to all those who publish it. Just keeping Adriane apprised of which outlets has been a challenge.

[Edit: I should say that, through my exhaustion, it's really amazing to have people picking up the baton so all I have to do right now is 'carry messages'. Means a lot, thank you.]

 

[lunarswirls]

I think that it may be relevant to think of the silencing, as perceived by PACE authors and colleagues, going on within medicine itself. Viz:

Shedding of Peter White and Esther Crawley by the CMRC.
Absence of any place on NICE committee for psychiatrists.
Asking Larun and Price (Sharpe's departmental colleague) to withdraw their Cochrane exercise piece.
Abandonment of the planned Cochrane update that included these and several PACE authors.
Removal of ME/CFS from Cochrane Mental Health Section.
Rejection of Brurberg's submission to J Health Psychol.
Changes in policy in Holland and the USA.
Parliamentary vote to withdraw recommendation for CBT and GET.

That is exactly what they mean by "silencing".



Reminds me of all the quacks alt med practitioners who cry censorship because they can't get their garbage "studies" published in reputable journals without huge backlash from the "militant skeptics".