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

[Cinders66]

It’s so heartening to see this independent thinking from outsiders

I think that it's important people don't underestimate how harmful this stuff is for us. Even before the recent press coverage, PACE trial critics being viewed as 'radical and abusive' was an important impediment to making progress with the science. Excellent and skilled advocates being well informed, reasonable and cautious are still held back by this reputation causing problems. This is an important issue that makes it difficult to gain support amongst those whose support we need - and even before that, makes it difficult to get academics and researchers to take the time to even look seriously at the issue. It's drives away potential allies.

I don't see what we can do to improve things though. I think that there's value in constantly reminding one another of the importance of being cautious and reasonable with all on-line comments, but there is always going to be a minority that makes life worse for everyone. Can we do anything better? It breaks my heart that we've got @quasar9uk representing PACE trial critics in the UK media instead of someone like Tom Kindlon.

PS: The @quasar9uk story is the fifth main story on the Daily Mail's website.

I don’t understand how quasar tweet/s in response to a terrible article against patients is being able to be used to support a story of an awful intimidating patient group. I follow politics and MPs get hundreds of awful tweets or messages on any topic they make a stand on or do something in. Prior to this tweet, which was an unfortunate gift to Michael Sharpe sitting like a spider there to catch anything he could use against us and has been doing so for months, the most they could manage were the ones printed earlier.

I don’t think MIchaels issue is anything to do with a nasty social media campaign (where there’s a reason abuse can be immediately reported, people can be simply blocked etc) because there hasn’t been one, Its to do with tuller, cochrane, nice etc now putting his life achievement in question and his professional ego can’t tolerate it. He then attacks an unpopular patient group as an easy way to discredit this legitimate scrutiny. As a community there’s no way we should be feeling guilty for one person loosing it after as someone outside our community said the original awful article painted patients as deluded (and people who stand up for us were trashed) and MS and Simon Wessely as benign do gooders . The person involved might have ME but isn’t part of a community, where the constant message is don’t be abusive or give them anything to use against us.

I want to add on Facebook when I’ve engaged in unrelated bbc news, controversial discussions full of horrible language and abuse, I’ve had threatening DMs and been suggested to go drink poison etc. That’s just life. it’s unusual in medicine, patient vs research area because researchers don’t usually work against the patients, inappropriately psychologise serious illness, work without charity support and frequently use the media in a horrible way. We are in a unique situation. The one person tweet was just a very unhelpful gift but it’s largely irrelevant afaic to the central issues which is the battle on and persistence of pace and the psychological approach to CFS despite the welcomed advances. Things will get nasty as the empire falls but I don’t think most of That nastiness will actually be from patients.

 

[Esther12]

I want to add on Facebook when I’ve engaged in unrelated controversial discussions full of horrible language and abuse, I’ve had threatening DMs and been suggested to go drink poison etc. That’s just life. it’s unusual in medicine, patient vs research area because researchers don’t usually work against the patients, inappropriately psychologise serious illness, work without charity support and frequently use the media in a horrible way. We are in a unique situation. The one person tweet was just a very unhelpful gift but it’s largely irrelevant afaic to the central issues which is the battle on and persistence of pace and the psychological approach to CFS despite the welcomed advances. Things will get nasty as the empire falls but I don’t think most of That nastiness will actually be from patients.

There is abusive language on the internet related to almost all topics, and this is routinely much worse than what we've seen related to ME/CFS. Quasar's tweets should be largely irrelevant to the substantive problems around CFS research. But we've already seen how damaging the abuse narrative has been to us before they had examples like Quasar's tweet to point to. Behaviour like that is going to make things worse for us, and things were already bad.

 

[TiredSam]

I follow politics and MPs get hundreds of awful tweets or messages on any topic they make a stand on or do something in.

Yes, including from Michael Sharpe (e.g. his letter to Carol Monaghan accusing her of conduct unbecoming of an M.P.). Perhaps in the interests of balance the reuters journalist could do an article on the abusive letter-writing campaigns of Michael Sharpe and colleagues. It's not like there's a shortage of material, so she won't have to worry about only having the occasional pathetic tweet to back her story up with this time.

 

[Stewart]

The ICO already classes some requests related to CFS as vexatious seemingly for no reason other than that the request is related to CFS and there is a concern about a campaign of intimidation. Things are already really bad for us, and tweets like this are going to make them even worse. We need to gain influence within the UK Establishment, and that culture is not keen on outsiders challenging authority figures to start with.

I understand that, and I don't disagree with anything you've just written. But as you said upthread...

I think that there's value in constantly reminding one another of the importance of being cautious and reasonable with all on-line comments, but there is always going to be a minority that makes life worse for everyone. Can we do anything better? It breaks my heart that we've got @quasar9uk representing PACE trial critics in the UK media instead of someone like Tom Kindlon.

Sadly Michael Sharpe is never going to promote Tom Kindlon's tweets to the media - unless Tom suddenly develops a bad case of potty mouth (that was a joke Tom - don't even think about it...). He's always going to find someone like quasar9uk - perhaps somebody who's having a really bad day with their ME and desperately needs to let off some steam - and present their comments to the world in the worst possible light to further his narrative.

And as you noted, we can't stop that from happening. We can't 'police' everyone's tweets and we shouldn't try. We shouldn't condone abusive comments - and to be absolutely clear I don't - but we should try and remain understanding that 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. All we can do is encourage people to try and learn from quasar9uk's example so that next time it'll be someone's else tweet/email/message board post they use, and not yours.

Hopefully quasar9uk will see the Daily Mail article and recognise that their tweet has spectacularly backfired. Personally I'm choosing to see the bright side of this episode - quasar9uk's deeply objectionable tweet does not initially seem to have been as helpful to Sharpe's narrative as he must have hoped. That doesn't mean that quasar9uk's comments are excusable or that other people should follow his/her example. I recognise that these comments may well come back to bite us in the backside at some future ICO hearing, although obviously I hope they don't.

TLDR: Broadly speaking I agree with you Esther.

 

[Andy]

Behaviour like that is going to make things worse for us, and things were already bad.

Have you not noticed how things are generally moving in our direction? You seem to be determined to take a doom and gloom approach solely based on the tweets of one person. Will they be temporarily unhelpful? Possibly, but as has been pointed out a number of times, far worse abuse is slung around social media, and most people will look at the examples of "abuse" aimed at Sharpe and conclude that, actually, this barely registers and actually there is probably more to the story than he claims.

All Sharpe, and the small band of BPSers, achieve is to provide opportunities for our voice to be heard, and as long as the overwhelming majority of us make reasonable, and reasoned, comments then their influence will continue to drain away.

 

[Esther12]

TLDR: Broadly speaking I agree with you Esther.

Yeah, I certainly didn't think that you were condoning quasar9uk's tweet. When I looked at his twitter feed quasar9uk was revelling in the Daily Mail article. It's just loathsome behaviour.

Have you not noticed how things are generally moving in our direction? You seem to be determined to take a doom and gloom approach solely based on the tweets of one person. Will they be temporarily unhelpful? Possibly, but as has been pointed out a number of times, far worse abuse is slung around social media, and most people will look at the examples of "abuse" aimed at Sharpe and conclude that, actually, this barely registers and actually there is probably more to the story than he claims.

All Sharpe, and the small band of BPSers, achieve is to provide opportunities for our voice to be heard, and as long as the overwhelming majority of us make reasonable, and reasoned, comments then their influence will continue to drain away.

I do take a UK-centric approach, and that is where things are worse. Given the influence of the UK, NICE, Cochrane, etc, I think that there is reason to see the situation in the UK as of global importance. In the case of the UK situation, I am feeling much more negative about things now than I was last summer, and that's not just because of quasar9uk's tweets.

edit: I do think that his tweets strengthen attempts to undermine us by linking PACE critics to abusive behaviour on-line, and that has already been a really important problem we've faced. Now it's worse and that's annoying.

I could well be wrong about this. I do tend to try to focus on potential problems in order to see if anything can be done to improve things (and I've been sleeping unusually badly recently) but I think we face a number of challenges where we're likely to end up going backwards.

edit 2: Also, I might have different priorities to most people. I want to have it acknowledged by UK institutions that the PACE trial authors have behaved badly, and I think that this is now unlikely to happen.

 

[Gecko]

I am still trying to ‘catch up’ with all this - been a poor week - does anyone please have an archived version of the Mail article, because, in the same way as the original Reuter’s piece, I do not want to give the paper the satisfaction of my “click” on their article.

Thank you!

Archive link for the daily mail piece:
http://archive.fo/7uNjn

 

[Andy]

In the case of the UK situation, I am feeling much more negative about things now than I was last summer, and that's not just because of quasar9uk's tweets

Well, we very obviously differ in opinions. I consider our parliament voting in our favour in the way that it did recently a big step forward. I consider the growing cohesion of advocacy efforts, in the UK as well as worldwide, to be a positive forward step. And there many other examples of why I think our collective 'movement' is gaining momentum all the time.

Also, I might have different priorities to most people. I want to have it acknowledged by UK institutions that the PACE trial authors have behaved badly, and I think that this is now unlikely to happen.

I think this was always unlikely to happen. The most likely outcome is that it will be widely accepted that, as we know, PACE is garbage but NICE and the related institutions will try to drop it as quietly as possible, because that's the way that things tend to be done in the UK.

 

[Esther12]

Well, we very obviously differ in opinions. I consider our parliament voting in our favour in the way that it did recently a big step forward. I consider the growing cohesion of advocacy efforts, in the UK as well as worldwide, to be a positive forward step. And there many other examples of why I think our collective 'movement' is gaining momentum all the time.

I think that the parliamentary vote could end up being unhelpful if we lose other battles and it comes to be presented as misguided political interference in science and medicine.

I don't know much about a lot of the international advocacy efforts but I feel that a lot of the recent progress we've made is very fragile and could easily be undone. Maybe I'm too negative about this - as I've said, I've slept badly. Obviously, if there was a genuine breakthrough in medical research then we'd be in a much better place, and that could happen (though I'm not expecting it soon).

I think this was always unlikely to happen. The most likely outcome is that it will be widely accepted that, as we know, PACE is garbage but NICE and the related institutions will try to drop it as quietly as possible, because that's the way that things tend to be done in the UK.

It was always a challenge, but they had behaved badly and we should be able to get that truth acknowledged... there's just very little room for mistakes. There's always been a drive to cover-up problems and protect reputations, but I think that recently there was a growing awareness of how embarrassing it would be to acknowledge the problems with PACE, and this led to a strengthening of resolve to try to dismiss criticism without engaging with it. I think it's likely we're now going to see Cochrane and NICE endorse CBT/GET (using newly tentative language that makes no real difference to the problems patients face), and there's a reasonable chance that a consensus will emerge that criticism of the PACE trial was largely misguided and driven by people who held unreasonable views about psychological interventions and were abusive [edit: As who has time to check the details for themselves?].

edit: I realise this is a negative post, and hopefully I'm over-tired and misguided. I certainly don't want to sound like I'm not appreciative of all the amazing work other people have been doing to try to move things forwarded. Thanks so much to all of you - it's amazing to watch and sometimes be able to contribute bits towards. I think I am feeling down about the fact that so much impressive work is being ignored, or can seemingly be dismissed due to someone like quaser9uk.

For me, the most important thing has been trying to ensure that patients are spoken to honestly. It now seems that lots of important people have decided that honesty about the problems around ME/CFS is going to be too embarrassing.

 

[Snow Leopard]

"prefering" a method (which no other studies have used and greatly inflates the numbers) because it gives the result you want is such bullshit.

 

[Unable]

Just thought -

IF they now prefer one method over another because it gives results more consistent with previous results -

THEN does that not suggest they ran both methods to get the respective outcomes
BEFORE deciding to change to the alternative method?

Otherwise how could they know which method produced the results most in keeping with previous ones?

Hmmmmm...

(Quick Edit for clarity)

 

[chrisb]

One of the standards and values of Reuters' journalistic code is "Always strive for balance and freedom from bias".

It would be an almost unprecedented coincidence if this story was not coordinated to be synchronous with publication of the new Sharpe et al paper. This seems to provide prima facie evidence of bias. One wonders how Reuters might rebut that presumption.

 

[Kalliope]

This might not be the correct thread, but just read in a Facebook group that Trudie Chalder was recently in Norway, invited by prof. Wyller. There were security guards in the auditorium, apparently. Haven't heard anything about how it went, but was saddened to hear about the security guards, it sends a strong signal about what they think of patients.

 

[chrisb]

Well you cannot take too many precautions to protect the crockery. No expense should be spared.

 

[Lucibee]

It would be an almost unprecedented coincidence if this story was not coordinated to be synchronous with publication of the new Sharpe et al paper.

Sharpe: "I've quit the field because of abuse."

Also Sharpe: "Here's my new paper in the field I just quit."

 

[Alvin]

Sharpe: "I've quit the field because of abuse."

Also Sharpe: "Here's my new paper in the field I just quit."

If they didn't have double standards they would have no standards at all.

 

[Stewart]

This might not be the correct thread, but just read in a Facebook group that Trudie Chalder was recently in Norway, invited by prof. Wyller. There were security guards in the auditorium, apparently. Haven't heard anything about how it went, but was saddened to hear about the security guards, it sends a strong signal about what they think of patients.

Probably just in case @dave30th saw fit to make an unexpected appearance to pose impertinent questions and they needed to ask him to leave.

 

[Kalliope]

Probably just in case @dave30th saw fit to make an unexpected appearance to pose impertinent questions and they needed to ask him to leave.

It was in Oslo she was heckled a few years ago, as was mentioned in the tribunal ruling regarding the PACE data when the researchers were asked about harassment. That incident was unfortunate, but I feel they are escalating the whole thing by hiring security guards.

 

[Arnie Pye]

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

1) How many times have the police arrested one of these patients?

2) How many have been charged with a crime?

3) How many court cases have their been?

4) How many people have been found guilty?

I suspect the answers would be zero, zero, zero, and zero, but I don't know for sure.

 

[Stewart]

It was in Oslo she was heckled a few years ago, as was mentioned in the tribunal ruling regarding the PACE data when the researchers were asked about harassment. That incident was unfortunate, but I feel they are escalating the whole thing by hiring security guards.

I meant it as a joke about Dave's encounter with Esther Crawley in 2017 - I probably should have added a smiley...