Michael Sharpe skewered by @JohntheJack on Twitter

I don't think so, they understood his tweets perfectly. I'm sure with 32,000 tweets to his name Godwin is well aware that he occasionally rubs people up the wrong way by coming over as preachy, it can't be the first time. For all we know it might be the part of the exchange he relishes most, he is the originator of "Godwin's Law" after all.

Anyway, apart from that he appears to have done a splendid job of getting his head around the PACE trial in one day, so maybe he'll do a splendid job of getting his head around the rest of it on day two.

 

I'm sure I saw tweets from people complaining Godwin had said things he had not. Don't make me look back through that huge thread to find them now!

 

Godwin has expressed his opinion about the study. He's been honest and straightforward. That's fantastic! For myself, I don't have an interest in pressing him to assess the intentions or motivations of those who conducted the trial.

 

Yes, all we can say is the intentions and motivations of patients and activists when criticizing the trial.

To @Mike Godwin, I'd like to clarify the two issues, that are often misportrayed:

1. This prominent group of UK psychiatrists who are being criticized, have long been involved in the field, but have never bothered to really listen to the concerns of patients and ultimately never built any trust with the community. These researchers are not being criticized because merely because they are psychiatrists or psychologists conducting research in this field.

In contrast, in the USA there are researchers that have also done CBT trials, namely Fred Friedberg and @Leonard Jason who are generally well respected in the community. The difference is that they listen to patients and make an effort to build trust.

2. Patients are not criticizing the trial "because it suggests a psychological etiology", we're criticizing it because the therapies are mostly ineffective in treating patients, but yet they are promoted as the next best thing to a panacea - "the only evidence based therapy for CFS". Patients do not care about the philosophy of mind-body dualism, patients are not saying that psychology cannot effect the body and vice versa. When patients say "CFS or ME is not psychological", we are saying that psychological factors are not the central perpetuating factors and that psychological therapies have so far failed to help a large majority of patients for their underlying condition. That is not to say CBT cannot be helpful for dealing with other problems, such as some forms of depression or anxiety but that is not the argument that most people are making.

Yes CBT and GET have been shown to effectively modify cognitions of CFS patients and alter questionnaire responses, albeit temporarily. But these therapies have so far failed to demonstrate meaningful objective improvement in objective outcomes that matter most to patients. Namely patients being more active, reducing the defects in neuropsychological performance (due to brain-fog/poor concentration due to faitgue), or gaining employment, all of which have not been shown to improve in trials. If psychological treatments truly had the efficacy claimed by these researchers (or as widely quoted in the media) it would be fantastic!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!


Most patients agree that the design of the trial is flawed when it comes to the outcome measures.

Firstly, the questionnaires used in the field are of low quality. The biggest issue is that the questionnaires seem to be designed for researcher convenience and have patients have never been asked whether these questionnaires are actually clear/meaningful/accurate representations of patient experiences.
See the review here: https://www.ncbi.nlm.nih.gov/pubmed/21590511

Secondly, the PACE trial was unblinded and only showed changes on subjective questionnaires in the short term. When there are such improvements, but there is no change on objective measures of functioning (regardless of whether objective measures were measured or overlooked in the trial design) and the difference between the randomised groups disappears at long term follow up, should we even conclude that the therapy was efficacious?

The fact is that meta-analyses of subjective outcomes in unblinded clinical trials have shown a high degree of bias. Incidentally, that bias is of a similar magnitude to the effect on questionnaires in the PACE trial.

 

Yes, I think that’s what happened. And Godwin seems to have realised that too.

I agree. It would be unfortunate if Godwin was deterred from further engagement/involvement. He is clearly interested and appears to have taken in a great deal of information (which he requested) in a very short space of time. His responses to me were understandably (and appropriately) cautious but he has expressed significant concerns about PACE and the treatment of patients, which is encouraging – and perhaps a further indication of the way the wind is starting to blow.

I offen wonder if I am wasting my time on Twitter but I feel my conversations with Godwin have been worthwhile. And it was nice to see Wessely’s beloved trial being criticised by an old school friend – especially after he had brought him into the conversation.

 

Well he is sticking to his line ...at least that shows consistency ..he also admits that there are strong feelings ...I guess that is his excuse for closing down discussion and supposedly walking away from the field despite all his ongoing connections ?

Seems like pretty weak arguments to me.

 

Re the last tweet. Is the clinical trials book the one that clearly identifies difficulties re bias and blinding that simply seems to have been disregarded when designing the trial?

Simply alluding to this would seem to infer that there were no methodological flaws. ..

 

'I continue to believe they did a good job with the trial and that it was carried out to a high standard the data is sound even if the results are relatively modest Such is the nature of large pragmatic trials. Our book on clinical trials written pre PACE talks about this'

It is interesting to see Wessely continue this line in public even now. Does he really have no clue about the basic rules of reliable evidence? Does he really not understand that CBT and GET as delivered in PACE are uniquely susceptible to the problem of bias because they deliberately induce bias? Does he really think his textbook is an authority on anything when it gets so many things half-right. I genuinely think he may have the sort of brain that is unable to discriminate sound argument from fluff. Such brains are pretty common in academia.

 

Wessely has just tweeted it himself. Unbelievable innit? He actually still believes that that is the last word on PACE and explains everything, and is still referring people to it. It's almost as if, once he has written something, it can never be wrong. How can someone who has slimed his way to the top have so little awareness of when he is making a complete fool of himself?

 

Has anyone read Simon's book? Does it say that people can be "recovered" and "disabled" on measures simultaneously and it doesn't matter? Thanks for posting his tweets here, since he blocked me a couple of years ago.

 

'Last comment then that’s it. I didn’t mean to trigger all this but have followed your career with interest since those happy days at Lamar which will always be precious to me . If you are ever in london it would be good to catch up for our own version of “40 Years On”.'

Maybe Wessely is still under the illusion that he can talk everyone round with a nice chat over a beer (what he offered me).

 

Hoist......petard

 

That's more than Countess of Mar got! ( invited her for lunch but all she got was a bottle of water)
https://www.s4me.info/posts/79852/

 

I didn't say anything about him paying for the beer!

 

Divide and conquer with a piece of personalized marketing...
Science by persuasion instead of fact checking...

I wouldn't mind seeing a full list of everyone he has done this to, not that he would ever provide it

 

Well, he is a Yorkshireman.

EDit in response to JE's post

 

That seems rife in BPS psychopsychiatry.