Michael Sharpe skewered by @JohntheJack on Twitter

And yet SW seemed to think it was ...

 

... no one?

Edit: i.e. There always seems to be someone ... somewhere ...

 

I absolutely agree. My original comment was not intended to indicate otherwise.

 

OK, thanks for clarifying.

 

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Mr. «published researcher» wants to have a battle.
I think maybe he deliberately quote strategist because he knows now that strategist is not on Twitter.

 

Mr Sharpe is unhappy with Mr Godwin's comment about the PACE trial. (Will Sharpe tell Mr Godwin that he should 'read the paper', as Sharpe always thinks everyone critical of the PACE trial hasn't done?)

https://twitter.com/user/status/1007835163160727552

 

He is not looking for a battle or he would be here debating with us.

 

To be honest it probably serves as a neat reminder that this forum is public and that your words will be used against you on contentious topics.

 

When i say battle, I mean quarrel/war, not discussion. (English is not my mother language) If he wanted discussion/debate, he would not use the words he is using (either. In addition to not be here debating)

That’s true.

 

'In what twisted universe is this considered helpful to patients, or even sane?'

In this twisted universe we live in, where health professionals who do not understand the basics of scientific methodology are persuading politicians to replace meaningful health care with a scam of monumental proportions. And it seems that a slightly barbed allusion has helped to show that when intelligent independent people are drawn in to the debate they see things for what they are.

 

The evil deeds committed by PACE authors are obviously not on the same level as that of Nazi war criminals (mass murder), but are evil deeds nonetheless. ME/CFS patients are a marginalized group that is seen as unworthy of receiving medical care and support and the same rights and respct afforded to other patients. This is also happening in the context of government policies that result in chronically ill people dying from neglect. While not on the same level of evil, there are clearly parallels to Nazi Germany.

I'm not the only one seeing these parallels by the way:
New disabled MP accuses Conservatives of 'eugenics' policies to make disabled people 'suffer and die'

Ordinary people are not normally capable of doing such harm. The PACE authors have played a significant part in creating and maintaining this disastrous situation, at least in the context of ME/CFS (for example PACE is helping justify witholding disability support). I would like to understand why they are capable of doing things that harm us patients (is it because evil can be banal?)

PS: in my view, the aggressive behaviour of patients is because they feel threatened, cornered, mistreated, and unheard).

 

The notion that the PACE authors do not know that their treatment is ineffective is not credible.

One does not accidentally switch outcomes in a way that inflates recovery figures by a factor of four (If I remember right), then tries everything they can to prevent independent scrutiny that would reveal the original recovery figures.

Wessely has written a textbook on clinical trials. Wessely authored a paper on the effect size of placebo interventions in ME/CFS patients, finding that the effect size for psychological placebo interventions was similar to the effect size of CBT/GET in PACE under the originally planned statistical analysis.

White co-authored a paper where they noted that the SF-36 scores of the population don't follow a normal distribution. In PACE, their revised recovery criteria depend on exactly this assumption.

Excuse me if I don't believe for one moment that there is no awareness of wrongdoing on their part. The main players in this game know exactly what they are doing.

 

Would you have links to those papers?

 

The placebo response in the treatment of chronic fatigue syndrome: a systematic review and meta-analysis.
https://www.ncbi.nlm.nih.gov/pubmed/15784798

Is a full recovery possible after cognitive behavioural therapy for chronic fatigue syndrome?
https://www.ncbi.nlm.nih.gov/pubmed/17426416

Please do verify, it's been a while since I looked at these papers.

 

I'll just draw y'alls attention to this again.

 

To all who joined the discussions on twitter and on S4ME since Simon Wessely got Mike Godwin interested in the PACE trial debate: a big thank you. I was very happy and relieved to see Mike Godwin reacting so open-minded, interested, smart and empathic in this matter.

Furthermore, I hope that with Mike Godwin joining the forum, this could in the future prevent Nazi comparisons in forum discussions. IMO, issues that can be reasonably discussed without referring to Nazis, should be discussed without references to Nazis.

I see no gain in referring to the Nazis' mass murder of the disabled and chronically ill when discussing bad health care policy in today's democratic states. And I personally feel uncomfortable with any organization that uses badges used by Nazis to discriminate and kill their victims.

I also feel uncomfortable with the reference to Hannah Arendt's study of Eichmann when talking about the responsibility of today's scientitsts. The PACE investigators' and defenders' unwillingness to accept their responsibility of the harm they did to so many sufferers is an important topic. We do not need to refer to Eichmann to demonstrate their scientific mistakes and their unethical behaviour [ETA2: or their unwillingness to see their behaviour as unethical].

[ETA1: And the discussions here on S4ME demonstrate so well that you don't need Nazi comparisons to sensibly and convincingly discuss ME science and policy.]

[ETA3: With this comment I do not suggest that anyone in this thread has made explicit Nazi comparisons]

 

I appreciate that point of view, and recognise that I don't have a personal family connection to the Holocaust in the way that many do and might affect my emotional reaction to things, but I think that there can be value in comparing problems in contemporary politics to those found under the Nazis. There do seem to be some reoccurring patterns in the way some people mistreat others, and pointing to how some contemporary problems were also a part of the horrors of the Nazi regime can help prompt people to question similar behaviour today.

I don't agree with all of the Black Triangle Campaign's work, but think that they have done a lot of good stuff, and they were a group run by disabled people that was really ahead of the curve in pointing to the really harmful changes to UK disability policies. I learnt a lot from their articles, and their work encouraged me on to other further reading.

Any reference to the Nazis can back-fire, so I'd tend to avoid them out of caution, but at the same time I think it's still worth trying to push back against the notion some promote that any reference to the Nazis shows that the person speaking is an unreasonable extremist. I remember when Ministers tried to use a reference to Nazi medical examinations in the high profile Spartacus report (a reference only made fleetingly by the academic providing the introduction) to try to dismiss this work and avoid meeting with the authors: https://diaryofabenefitscrounger.blogspot.com/2013/03/why-wont-dwp-really-meet-spartacus.html

Since then the UN's CRPD found that the Government’s welfare cuts have resulted in “grave and systematic violations” of the rights of disabled people: https://www.independent.co.uk/news/...sons-with-disabilities-disabled-a7911556.html

I find it hard to take seriously those who share some responsibility for these violations and abuses of peoples rights, and have failed to speak out about them, but then act affronted by any reference to the Nazis.

PS: When writing this I ended up looking at some general disability groups for references - wow, there are a lot of really intense expressions of hatred (and more) from those whose lives have been destroyed by politician's 'reforms'. I wonder if Sharpe would 'like' attempts to discredit the campaign disability rights by posting excerpts of them? David Jameson trying to discredit patients concerns about PACE by misrepresenting a couple of forum posts is pretty despicable.

 

My feeling uncomfortable with "Black Triangle" naming themselves "Black Triangle" does not include a critque of their general agenda and advocacy. Apologies for not having added this in my comment.

 

No worries - I think I may have been unfair in bouncing my own thoughts off your comment. It was just that your comment prompted me to post some things I'd been thinking about over the last couple of day. I probably should have just posted without quoting your post - sorry.

 

Important to note that Godwin’s Law makes no judgement about the appropriateness of references to Hitler. It was just an observation that “As an online discussion grows longer, the probability of a comparison involving Hitler approaches 1.” If I was feeling a bit better I would write more about this, but it is probably as well that we don’t drift too far off topic – whatever that now is.

Meanwhile, should I be concerned that Simon Wessely has liked the link to my essay on perceptions of ME that I shared with Mike Godwin?
https://twitter.com/user/status/1007624022534901760




Finally, I note that Mike Godwin has yet to reply to Sharpe. I will give him a nudge if he doesn’t reply in a day or so. I had missed it in my notifications and only spotted it on here, so it may be that it has escaped Mike’s attention too.