Sir Simon defends the newsletter. On Twitter

[CFS_for_19_years]

It must have hurt when he heard the NIH director saying they didn't have the right skill set the other day

I doubt if Simon actually heard this, as I believe it was only posted here on PR, but the NIH director did say it, as reported below by viggster.

I didn´t see that Francis Collins had said that, that´s hilarious, the scientific equivalent of ´you don´t know what the hell you are talking about.´

One of the best quotes of the day:
http://forums.phoenixrising.me/inde...nd-fences-my-call-with-him.40869/#post-657558

As an aside: I mentioned the problems in the UK, saying that psychiatrists had hijacked ME/CFS. Collins said, "They don't have the right skillset." That's a political way of saying: Uh, yeah, it's time for real scientists to study this thing.

 

[TiredSam]

Nah, in my opinion he is giving Wessely credibility by engaging him in rational debate. The Wess understands one thing, and one thing only: PR campaigns.

His PR campaigns work in the mass media. They won't work with the scientists and journalists he's up against now, he's way out of his league. He may be on twitter fishing for anything he can call abuse.

 

[SOC]

It should be said that he went on to tweet that opposition to the trial would have had more of an effect than the newsletter.

So the fact that there was public opposition to the trial justifies violating research ethics in the process of the trial? This guy makes no sense... in a scientific context anyway. Politically, everything he's saying makes a type of sense -- we wanted to win, so we changed the rules midstream, and did everything possible to influence the voters. It's not about science or ethics, it's about winning.

 

[Bob]

@msf, I meant that SW is a powerful and influential figure and his Twitter activity is merely a distraction from his every day work. If he just used Twitter and didn't do anything else then he wouldn't be much of a problem. In many ways I think it's better that he engages with us in the open rather than plots against us behind closed doors. But I don't think he takes any notice of us underlings, so our interactions with him on Twitter are probably irrelevant. I don't think we can influence him directly in any way. I think the influence can only come from his peers.

 

[msf]

Well, I disagree about whether we can influence him or not, but I agree that we are not his peers - Wessely would be completely out of his depth in the debates on here.

 

[SOC]

Sir (sigh) Simon's scientifically ignorant tweets circulated in scientific circles can only help us. While we've known for a long time what nonsense he spews, he's been able to bluff the media and some fellow scientists with his glib tongue and affable manner. When forced to communicate in 140 characters or less to scientific audiences, his lack of understanding of basic science and research principles becomes all too clear. There's just not enough room in a Tweet for the Baffle 'Em with Bullshit technique.

I'd say he needs encouragement to keep Tweeting.

 

[user9876]

So the fact that there was public opposition to the trial justifies violating research ethics in the process of the trial? This guy makes no sense... in a scientific context anyway. Politically, everything he's saying makes a type of sense -- we wanted to win, so we changed the rules midstream, and did everything possible to influence the voters. It's not about science or ethics, it's about winning.

He hadn't thought out his argument but he was basically saying public opposition to the trial would have suppressed the scores of GET and CBT without understanding that its about lack of reliability in the result not what the result was. Incidentally the opposition could have had the opposite effect to what he suggests by making those who perceive benefit want to vote for it more strongly.

But whatever it makes results unreliable because they have no way of understanding any priming effects and measures were subjective.

 

[Apple]

I doubt if Simon actually heard this, as I believe it was only posted here on PR, but the NIH director did say it, as reported below by viggster.

One of the best quotes of the day:
http://forums.phoenixrising.me/inde...nd-fences-my-call-with-him.40869/#post-657558

As an aside: I mentioned the problems in the UK, saying that psychiatrists had hijacked ME/CFS. Collins said, "They don't have the right skillset." That's a political way of saying: Uh, yeah, it's time for real scientists to study this thing.

How do you confuse a Psychiatrist? Hand them a stethoscope.

 

[skipskip30]

Well, maybe not now, but once the science is all in our favour, we should make sure he apologises.

I highly doubt he will ever say sorry, there will aways be an excuse. The best we can hope for is that the scientific community stop taking him seriously.

 

[CFS_for_19_years]

How do you confuse a Psychiatrist? Hand them a stethoscope.

Hello, can you hear me now....tap tap...hello, are you there?

 

[BurnA]

Can anyone with a Twitter account when he is going to give up the game and apologise to us for all the harm he has done? And then ask him again the next day, and the next day, and so on, ad infiniteum?

Why dont we all do this ?
I don't think we should sit back and watch when that is the exact type of behavior we adhor of others.
This is our chance - I believe we should make noise, not harass or abuse but raise valid points and make him squirm.
The more noise we make the longer this stays topical, then sooner or later something will happen. if we miss this opportunity who knows when a better chance will come along, we have waited long enough.

 

[Large Donner]

How do you confuse a Psychiatrist?

The confusion is already predetermined so there's no need.

 

[TiredSam]

Why dont we all do this ?
I don't think we should sit back and watch when that is the exact type of behavior we adhor of others.
This is our chance - I believe we should make noise, not harass or abuse but raise valid points and make him squirm.
The more noise we make the longer this stays topical, then sooner or later something will happen. if we miss this opportunity who knows when a better chance will come along, we have waited long enough.

Like I said in an earlier post, I think he could be fishing for exactly that kind of response, which he can then label as abuse and distract from the real discussion. There are some very well-educated and articulate people not letting him wriggle out of it at the moment, and I'd hate to do anything that might detract from the splendid job they are doing much better than I could.

So I'll continue to rant on PR, and leave skewering Sir Simon to the professionals. He's never going to admit the harm he's done or apologize, and I can live with that as long as the whole world knows what a **** he is and he isn't allowed near anything important any more.

We are making noise with the petition, with level-headed responses to media articles, and even with a few more balanced mass-media articles now. Engaging with him directly takes a skill set that I don't have, so I'd rather leave it to those who do.

 

[CFS_for_19_years]

^^^^ I was going to say much the same thing as TiredSam, that even a logical polite discussion on twitter with well-directed criticism would cause Simon to call it "abuse." He could be baiting anyone who is just itching to get into a discussion with him, and I think it's best to just let him be ignored on twitter, no matter what logical argument you wish to present to him.

 

[snowathlete]

It should be said that he went on to tweet that opposition to the trial would have had more of an effect than the newsletter. In doing so he brings into question the whole notion of subjective measures. It seems obvious to me that the biggest effect on subjective measures is the treatments that say 'change how you think about your symptoms and you will get better'. Followed by the question 'how do you feel about your symptoms'!

It's classic deflection. Faced with someone highlighting an issue, rather than address it you attempt to change the focus. He is good at this, but this is not rocket science, it is basic stuff when you think about it, and you can learn to do this by following less than a dozen rules about what to do when faced with certain scenarios. He is very predictable. Just important to see it for what it is and not let people using these slippery tactics to dictate the narrative.

The really great thing, in my view, is that seeing these tactics being employed tells us a lot about the person's mindset and what makes them uncomfortable. Simon and his group are not comfortable with the focus being on the flaws in their research. Nice of them to indicate where we should focus our efforts.

As seen here, attempting to deflect attention away from such areas also leads to mistakes, and we may be able to highlight those too.

Whatever people do, if they wish to engage with people like Sir Simon on Twitter, or even remark about them on here, it is important not to get emotional and keep to the facts in a polite way.

I don't think there is anything wrong with engaging with him and others on social media in principle. Personally, I rarely engage with Sir Simon on Twitter because I dont think there is much to be gained from it and unless there is a purpose to it, what's the point? If we do engage with people like this then we must always be polite - professional even, despite the fact people like this may have let patients down badly over the years.

 

[Kati]

It is best to let David Tuller and James Coyne argue with him in my opinion. They are both in powerful position to argue and defend what they wrote and defend us patients.

Every argument coming from a patient will be discounted and/or interpreted as abuse.

Also do not for a minute think that the psych lobby does not come here on the forum to read about what the patients have to say about them. I am very sure they come on a regular basis. When I was running my blog and discussing press coverage of the release ofthe pace trial, i tracked my blog visits and sure enough, visits from well known UK universities.

 

[Bob]

If everyone piles in then it will just be a wall of noise, and he'll simply stop interacting. Nothing will be gained. Just my opinion of course.

 

[user9876]

It is best to let David Tuller and James Coyne argue with him in my opinion. They are both in powerful position to argue and defend what they wrote and defend us patients.

Every argument coming from a patient will be discounted and/or interpreted as abuse.

Also do not for a minute think that the psych lobby does not come here on the forum to read about what the patients have to say. I am very sure they come on a regular basis. When I was running my blog and discussing press coverage of the release ofthe pace trial, i tracked my blog visits amd sure enough, visits from well known UK universities.

@wdb do you keep IP addresses of accesses? Any interest in having them analyzed?

 

[user9876]

If everyone piles in then it will just be a wall of noise, and he'll simply stop interacting. Nothing will be gained. Just my opinion of course.

I think an occasional response if something he says triggers a thought is worth doing. But I wouldn't bother with much or repeating points. I only ever see stuff from him that others retweet anyway.

 

[CFS_for_19_years]

David Tuller is doing a great job responding and tweeting to Simon, with some mention of the newsletter. LOTS of great tweets.

David Tuller has been busy tweeting quite a bit (including with Simon Wessely) in the last few days.
His tweets can be read here:
https://twitter.com/davidtuller1/with_replies
(you don't need to have a Twitter account)
You can click on tweets to see conversations if interested.