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

[Inara]

I've messaged you with my link, maybe or maybe not the same as @Kalliope's. Maybe you can archive it and post that version? I don't know how to do that sort of thing.

Yes please if possible. or the link. thank you!

 

[Andy]

My opinion about this wave of pro-BPS researcher articles? It shows we are making progress, even maybe that we are winning.

If they felt secure in their position, they wouldn't be putting these things out - they see our efforts as a big enough threat and therefore are trying to counter it. And, to an extent, these efforts actually work against them. I've seen evidence in both the Times comment section and on Twitter, where people, seemingly previously unaware of all of this, are saying, paraphrasing, "wait a minute, this presents only one side, I'm going to read up on the other side, oh, it looks like the patients may actually have a point".

And for those who are more aware and/or who are our allies already, I think this is more likely to reinforce their commitment to us than to make them suddenly turn around and drop their support.

So, while I agree that these articles are infuriating and insulting, I believe that they should be taken as positive confirmation that we have grown as a movement, that we have made progress and that we should continue in our efforts.

 

[Stewart]

I don't twitter but:

I would be interested to know what Dr Wessely DOES think this is about.

If it is not about the science there was never an issue of 'standing up for science' or any need to withdraw from the research (which was not much of a stand).

If it is not about abusive patients because they are all charming, then what IS it about?

We know what Sir Simon *says* it's all about - the stigma surrounding psychiatry and psychiatric diagnoses that he has made his life's mission to overturn.

Does he really believe this though? Who knows - he's been saying it for so long that he's possibly convinced himself by now. But perhaps he's still self-aware enough to recognise in his private moments that it's self-serving nonsense that casts him in the role of psychiatry's messiah.

 

[Sly Saint]

might be good for someone on twitter to link to Brian Hughes (Psychologist, author of Psychology in Crisis) elucidating lecture on the PACE trial
https://notthesciencebit.net/2018/12/14/here-is-a-video-of-my-lecture-on-the-pace-trial-controversy/

 

[Jonathan Edwards]

These figures posted by strategist are for me a milestone in the search for simple clear arguments.

The defence by Sharpe, Goldsmith and Chalder depends entirely on the argument that a prolonged 'placebo' response is unlikely to explain the PACE results. But here we have a prolonged placebo response to rituximab that was proven to be a placebo response by a subsequent trial freed of subjective bias.

Up until now there has been a potential argument about whether or not such placebo responses are plausible in ME. We now know they are the norm (there was a previous case for an anti-viral).

The remaining argument that adaptive pacing was presented in a similar psychological context to CBT and GET yet failed is blown away by Richard Horton's admission that the trial investigators thought they were engaging in a battle of philosophies, with CBT and GET on one side and pacing on the other. The claim that patients rated the treatments equal credible is hollow.

https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0129898

 

[chrisb]

Understanding SW is the work of a lifetime. I have read quite a lot of his work recently. Sometimes I have thought that it is not really half as bad as expected, and that he could be quite likeable. But he then always manages to write something to make one conclude that one was right all along.

From the very beginning he has been all over the place. It was probably not helpful to start a career with a redefinition of mass hysteria, concluding that Royal Free disease was in one of the groups, and to say, only a year later, that mass hysteria was outmoded and being replaced by abnormal illness behaviour, only seemingly never again to cite his reference for that. Who knows what he believes? It would help if he engaged in meaningful discourse.

 

[Jonathan Edwards]

Maybe the lesson is that psychiatry is for grown ups, but the grown ups have not noticed yet.

 

[Sly Saint]

Who knows what he believes?

that he is always right.

 

[Hoopoe]

These figures posted by strategist are for me a milestone in the search for simple clear arguments.

That's nice to hear.

The claim that patients rated the treatments equal credible is hollow.

Can you explain why?

My opinion about this wave of pro-BPS researcher articles? It shows we are making progress, even maybe that we are winning.

Agreed. These articles are unpleasant but it would be worse if no one was talking about the fact that there was a conflict in this area. The article is so onesided it will tell some readers that there is more to the story.

 

[Jonathan Edwards]

Can you explain why?

Imagine the scenario. Patients are asked how credible CBT, GET and APT are. Note that the patients actually included in the trial will by definition have been fairly neutral about this because those who thought pacing was much more credible than GET would not have volunteered. The question will have been posed in the psychological framework of 'look, we are doing a serious research project where everything has to be unbiased and we would like your help in confirming that you have no prior bias about these treatments'. So the response is easy - to be helpful to the nice therapist you say that 'of course if one is unbiased one has to consider all the treatments equally credible and we might even agree that as patients we think APT is a bit more credible because that is what patients are supposed to think.'

But that has nothing whatever to do with whether or not when you are allocated to a treatment you start believing in it because the therapist is coercing you to do so (part of Wessely and Chalder's 'cognitive strategies').

In both cases the result is 'being helpful' to the therapist. First you are helpful in agreeing that you are not biased, or maybe a little bit to APT because you are a patient and second you are helpful in agreeing to believe in your allocated treatment. This 'being helpful' is the norm for people receiving free health care and maybe is particularly part of the British culture.

Most people do not realise that this is the most unhelpful way to behave if you want a reliable scientific answer.

 

[Cheshire]

MS caught lying.
(I do not necessarily agree with Leonid Schneider's tactic, but I think, as a non-patient, he has more leeway than any of us would)

 

[Hoopoe]

I can't quite follow. Sharpe and colleagues say that

Third, and most importantly, the trial design controlled for a non-specific effect of treatment by comparing three therapies (CBT, GET and APT) that were all attention and credibility matched.

My understanding is that the control group SMC was not matched in terms of credibility or contact time. It is this control group that would tell us whether the other therapies have an "active ingredient" that positively affects the illness, or whether they are just placebo treatments.

Whether the nonspecific effects between these three therapies were matched is also debatable.

Sharpe and colleagues then say

Credibility matching was determined by asking participants how logical they found the treatment they were allocated to and how confident they were it would help them before they received it; the credibility rating of APT was higher than CBT, and similar to GET. Despite this control the biggest difference in outcomes was between APT and both CBT and GET. Indeed, one could argue that if the participant rated outcomes had been biased by the non-specific factors, such as perceived credibility, APT should have performed best, when in fact it performedworst.

Credibility at baseline tells us nothing about nonspecific factors introduced during the trial. CBT, GET and ATP are probably not matched in this aspect when CBT and GET attempt to change what patients believe about their symptoms (and other reasons)

 

[Michelle]

My opinion about this wave of pro-BPS researcher articles? It shows we are making progress, even maybe that we are winning.

This has been my thought also. Mostly Sharpe et. al just come across as a bit pathetic. As @Jonathan Edwards pointed out way way way back at the beginning of this thread, Sharpe's crowning career achievement was as an author (but not even the lead author, mind you) in a study about a therapy that might make some people feel a little bit better. Now even this pathetic morsel of achievement is being stolen from him due to rabble rousers like @dave30th and those damn patients who refuse to know their place already. So what does he do? Trot out some tired trope about mean, militant patients who don't like him, which, let's face it, was soooo 2013.

TBH, Sharpe does not strike me as the sharpest crayon in the box (pun sort of intended, I guess). And I can well imagine it must be pretty traumatising to have your life's work called "the height of clinical amateurism" by esteemed statistician. Or to have over 100 academics--many from top universities--say your work is crap (he seemed genuinely surprised when people on Twitter posted comments @Jonathan Edwards made about him/PACE). Or to have an entire issue of the Journal of Health Psychology devoted to telling you your entire career was a waste. Worst yet, not only were you wrong, but you've been harming people, which I can only imagine would be horrible to ever have to acknowledge if you're a health care provider.

Now, if you have a healthy, secure ego (which, if you work at Oxford, means almost by definition you do NOT have), you respond like the guy at Kaiser Permanente, apologise, and change course. Since our friend appears to have an unhealthy, insecure ego, he must retreat into delusion and defensiveness. Which is especially sad to see in someone whose life's work is about helping people achieve healthy, secure egos.

I almost feel pity for him that he thinks his picture in the paper is going to make it all better. Almost.

 

[Jonathan Edwards]

I can't quite follow.
My understanding is that the control group SMC was not matched in terms of credibility or contact time. It is this control group that would tell us whether the other therapies have an "active ingredient" that positively affects the illness, or whether they are just placebo treatments.

No, in fact it is the difference between the active treatments that tells us if any of them actually work.
APT is what we call a 'matched control'. This is the best, and only necessary, form of control. The idea is demonstrate that your test treatment works because of some specific ingredient not present in another equally 'active' treatment that lacks that ingredient. The fact that there is no difference between SMC and APT indicates that it is not just seeing a therapist that makes people score higher on the questionnaires, which is important. But it does not exclude the possibility that the scoring higher is due to role playing that depends on a perception that the therapist herself believes in the treatment. This is the really disastrous thing about trials of therapist-delivered treatments with subjective outcomes, as Keith Geraghty has pointed out. The results are likely to reflect being 'helpful' to a therapist who believes they are doing a good job. The therapists doing APT did not believe in it - in fact they were being 'dummy skilled therapists' of the sort Keith suggests all groups should have.

Whether the nonspecific effects between these three therapies were matched is also debatable.
Credibility at baseline tells us nothing about nonspecific factors introduced during the trial. CBT, GET and ATP are probably not matched in this aspect when CBT and GET attempt to change what patients believe about their symptoms.

Exactly.


Edited: I am getting old. I did not mean positive control, I meant matched control.

 

[Stewart]

"Stop making these allegations or I will sue you."

(9 minutes later)

"I did not threaten to sue you."

Sometimes I wonder if Sharpe understands how words work - or perhaps he suffers from short-term memory loss.

 

[Andy]

Sometimes I wonder if Sharpe understands how words work - or perhaps he suffers from short-term memory loss.

“When I use a word,” Michael Sharpe Humpty Dumpty said, in rather a scornful tone, “it means just what I choose it to mean—neither more nor less.”

 

[chrisb]

I suppose that he would argue that a contingent threat is not a threat. When careers are made on sophistry , who is to say?

 

[large donner]

Twitter needs to add an easy one click button for 'please delete your tweet'.

So that Sharpe can bang that button instead of saying "have you read the paper"?

 

[large donner]

I don't twitter...

We can tell. Its called tweeting and one does it on twitter.

I dont tweet either and its because I hate twitter. I also hate friendsbook.

 

[Lucibee]

APT is what we call a 'matched control'. This is the best, and only necessary, form of control.

It might have been matched in terms of contact time with the therapist, but it certainly wasn't in terms of the amount of "homework" that participants were expected to do. As I've looked at elsewhere, the APT group were given far more work to do between sessions than any other group.

Also, I'm not sure that we are seeing true "placebo" effects here. The improvements can be explained almost entirely by therapist effects, helpful-patient effects, and most importantly, intervention education effects - in that the therapies were specifically designed to change how the outcome questionnaires were completed. Patients weren't simply feeling better because they were receiving therapy. They were being instructed to feel better. There is a big difference.

And from my own experience of therapy, if a therapy is going badly, you don't tell the therapist. You give the impression that things are going well so that you can get out of there as quickly as possible without causing yourself any further harm.