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

I think that this is a much better tactic for them and much more difficult for us to respond to. Previously they were over-hyping things and it caused them problems. Now they're getting sympathetic coverage on the basis of real problems. I don't see how this can be to our advantage, especially when you have someone like Quasar taking pride in getting media coverage for sending abusive messages.

You're right that rude tweets is quite a climb-down from being akin to a terrorist network, but when this is presented as an attack on divine science it seems that this doesn't matter much.

 

It does sound like a bear with a sore head a bit, although I agree with most of the sentiment.

David, Willy (I think Charles and Espemor) and I talked to Monaghan about the risk of looking like 'political interference'. She is well aware of how things will look and my impression is that she has a canny understanding of what is productive and what not. She and her colleagues are absolutely entitled to ask Sharpe to account for himself. They know full well that they are not entitled to write NICE guidelines, but they can express an opinion.

My view of the abusive tweets is more laid back. In comparison to the comments lists on the Guardian they are pretty benign - just a reflection of the vitriol that human beings love throwing at each other. I cannot see them doing any real harm simply because any reasonably competent psychiatrist should be able to cope with this sort of thing every five minutes, not just every day.

I agree that the situation is evolving. I am acutely aware that what is needed is for UK medical academics to engage seriously in the debate. There have been some sensible voices from the US and now from Bastian but they are all a bit 'noises off', partly because of geography and partly because these are mostly people who interested by not actively engaged (like Levin or Goodwin).

In terms of UK medical academics actively engaged in trying to make sense of the research scene, but not tied down by having to apply for grants or inextricable connections with MRC, the buck seems to keep stopping with me. Up until now I have followed a policy of responding to requests for my opinion. In May that will change when I present a Grand Round on the problem of Unblinded Trials of Therapist -Delivered Treatments to the UCH Department of Medicine. I will pose the question as to who is prepared to stand up and be counted - for whatever position they might want to hold. I am very much looking at the wider context and MUS.

Oblique responses will do for the popular press but in the end the popular press does not matter in this. What matters is decision making within academic medicine. I agree with you that at times things look about as promising as the banks of the Somme 100 years ago but so far nobody has really tried to restore some sanity. We need a new phase - not of propaganda but rational argument. Cochrane has shifted but it has its own problems. The debate needs to be aired within medical academia as a whole. What I think people here may forget is that the debate is still largely invisible to the medical academic community outside liaison psychiatry.

 

On occasions I have sent private messages to people, politely asking them to delete inappropriate messages, and explaining how they can be counterproductive. (If they don’t follow me, I ask them follow me so I can send them a pm.) On the few occasions I’ve done this I’ve found it to be effective.

The other thing registered Twitter users can do is report abusive Tweets – if you click on the Tweet and then click on the down arrow there is an option to “report tweet”. In the past I’ve only done this for messages which are aimed at pwME, but there may be occasions when it is appropriate to report tweets from pwME or people who claim to be speaking for us.

 

I think that history will decide that these are what McEvedy and Beard and PK Thomas would have known as simulated symptoms. It is hard to believe that adult professionals would suffer anything more than annoyance and a certain frustration at these tweets.

There was a time before the internet when the senders of such missives had to go out and buy some green ink biros. Life is so much easier now.

It appears that those who believe in CFS have always defined themselves by their opposition to the patients whom they are supposed to serve. This is an early indication of their views from the 1993 CIBA Symposium

We are also sympathetic to the frustrating experience of clinicians and researchers who feel encumbered by misinterpretations in the popular media and threatened by the presence of particular interest groups who wish to see a certain kind of scientific conclusion take shape. We recognise that scientific rationality is a form of technical knowledge, which, even in the pluralistic framework of this volume, is not suited to addressing the existential troubles and search for ultimate meaning that passionately engage patient, family and those responsible for the moral requirements of giving care for such a serious chronic condition.

Also sprach Zarathustra- in the form of Kleinman, of Harvard, and Strauss. The tradition was established early. It would be comical were it not tragic. No matter that thirty years of work by dedicated clinicians and researchers was being consigned to the waste, it was only the opposition of patient groups that was noted. My copy of the book is inscribed with the name of an eminent psychiatrist, Kendell, who thought it worth marking part of this section in red. The knight errant and the eminence blanche were in attendance along with Sharpe; perhaps this is where they learnt the approach.

 

This is great news! I knew you were thinking about it but I didn’t know it was fixed. This is exactly the right approach.

Can Grand Rounds be live streamed or recorded?

 

Not as far as I know. I am not sure that it would be a good idea to livestream. I have no idea what the response will be, or whether any ME/CFS clinicians will attend. I am primarily interested in introducing the problem to a group of similarly disinterested academics to see what the climate of opinion is. If recording is allowed I might be able to get someone to do it.

 

Wow . Great to hear.

 

Quite good in fact, because this is providing a platform for allowing the innocently uninformed to be better educated about what is going on. We have seen in this thread ourselves how easy it is to be convinced by supposed truths when an article such as this reports supposed truths so selectively as to become untruths. So people in the twitter feed cannot be blamed for jumping to the wrong conclusions ... that is precisely what the article is intended to do. So the counter is what we and others are doing: calmly and clearly helping point those people to where they can discover the truths themselves. You cannot ram insight into people, you have to guide them to where they can find it for themselves. This just could be yet another own goal for MS and Co.

 

Just to add, the article is in the print version of the Times today, Saturday, p.19. I noticed that the headline says ME while the article refers to the illness as CFS.

 

I agree with both.

The problem on Twitter is that when abusive tweets are posted as endorsements of your own tweet they are displayed on your personal Twitter account.

So I won't endorse any tweet from a person who does not distance herself from tweets being displayed on her account that contain extremely abusive language or false accusations of murder made against whatever person.

Apologies for being focused on this today. However, I see this as an ethical concern of relevance with regard to advocacy for pwME.

Edit: Deleted the term "death threats", because in legal terms the tweet I meant most probably is not a death threat, but--don't know how to word it--vile, violent rhetoric/ a rhetorical death threat.

 

Just a further thought @Andy and the S4ME team: Would it be legitimate for S4ME to publish links to the Lancet paper in the twitter feed, along with links to the follow up papers? Gives everyone the chance to see the whole picture; shows very clearly that we are not afraid for people to see the whole picture, in fact it is asking for them to do exactly that; undermines MS's incessant bleating about people reading the paper; shows how helpful we are .

 

Good to hear a lot of that @Jonathan Edwards

I get the impression a lot of academics are appalled by the idea that their colleagues might be treated on twitter in the way that politicians are. That might partly reflect the fact that many seem appalled by the idea of being challenged by plebs, but I get the impression that any level of vitriol related to PACE does held against everyone raising concern about work in this area.

I get a deep sense of dread when I think about Cochrane. To me it seems like they're under a lot of pressure to help cover problems in this area up and the recent coverage involving Larun does not fill me with any confidence at all. To me it sounded like Cochrane were closing ranks and trying to tidy up the review to make it less embarrassing, while still avoiding recognising what a mess the research around CFS is.

 

https://twitter.com/user/status/1107046299457806336

 

This is an excellent counterpoint to the Reuters article. As well as being very educational, it implicitly debunks the Reuters one, and helps people compare a strongly science-based article with a strongly emotive, non-science (nonsense?) based one.

 

Wessely's response is interesting in the above twitter convo:


I've been struggling to understand what this is all about really. If Sharpe is really "sick and tired" of all the "complaints to the GMC", is lashing out about "online trolls on Twitter" in the national and international press a proportionate response? To me it seems to be a huge abuse of power. He knows the power of the mainstream media and social media, and how that plays into readers' own stigmas and ideologies.

And if the clinic is so satisfying to Wessely, why doesn't he use that in a way that people actually want him to?

The only reason it has become about the "cap badge of the interventions and the researchers" is because they have refused to listen to what people have been telling them over the past 30 years. If their approach worked, the badge wouldn't matter. That's what's so sad.

And ultimately, it is all about the science, because they have been blind to what the science has been telling them all these years.
And that really is sad for everyone.

 

I agree but it takes all of 12 seconds to find 10 more vitriolic comments on Twitter. That this is what they are falling back on only works because of the heavy spin the articles put on. It was bad enough, to twist blood out of a rock, that it will deserve serious scrutiny and look horribly corrupt in hindsight. Quasar is not helping in continuing but little of what they say is factually wrong, it's just angry. It's tactically good for them to pile on this but strategically horrible.

Right now it doesn't feel like it's justified because people buy the poor deary old professors trying to help "chronically fatigued" people but it will take little to reveal the true meaning: people begging for help and pleading for reason to people who are harming them after years and years of trying and failing. That's legitimate. It's easy to twist but it's legitimate.

We're 60+ years into this, it's easy to forget that from our perspective. When we despair at how long it takes for reason to prevail, it's easy to forget how many years have passed before most of us were even born. Sharpe was a toddler when the first research on ME began. He may pretend he's a pioneer, but in truth he's a late saboteur and will be recognized as such.

 

Wessely:

So not retired from ME then as he claims to have on numerous occasions. And its so enjoyable he isn't looking to go to Afghanistan where he would be safer as he has claimed in the past?

How any of his colleges cannot see through his duplicitous statements is beyond me. There are numerous such examples, deliberate manipulations of truths and the usually display a completely warped understanding of the scientific method etc.

 

Meanwhile, in the real world: there is more research than ever and the field is growing.

One of the things that really pissed me off the most from the Reuters piece was this mention that Sharpe was "one of a few" researching this (where this is indistinct, because in reality he's studying something else entirely). Completely erasing decades of research that published thousands of papers.

Some good, some bad. But Sharpe and his acolytes are hardly part of "a few" and are much closer to the bottom than the top in all concerns other than funding, which really says a lot about how far they were carried despite having nothing to show for.

 

This is a massive own goal on Sharpe's behalf. He's basically admitted that it wasn't the just trolling that caused him to leave (it was the attempts to invalidate his research which he can't publicly portray as harassment because of the ICO ruling) . This renders the Times and Daily Mail headlines factually incorrect (and in need of correction) and raises a more pertinent question of why he would allow a national news outlet to run a news story about him that he knew to be false.