Talk:Intimidation and bullying of PACE trial critics

To do:

More specifically mention the article that the SMC handed to the reporter, and a couple of quotes from it.

Mention Coyne losing his Plosone column for criticizing PACE.

The Herald January 13, 1998? https://twitter.com/hewitt_eilidh/status/1098284788321009664

Illustrations of threats issued by Simon Wessely https://forums.phoenixrising.me/threads/illustrations-of-threats-issued-by-simon-wessely.11631/

Category

I don't know which category to use for this page. Anyone?--77.111.245.57 15:25, 20 February 2019 (EST)

I don't edit often, someone else might know better, just ideas:

https://www.me-pedia.org/wiki/Category:Psychological_paradigm

https://www.me-pedia.org/wiki/Category:Notable_studies

https://www.me-pedia.org/wiki/Category:Psychiatrists

https://www.me-pedia.org/index.php?title=Category:British_researchers&action=edit&redlink=1

I think we need a new category, possibly Ethics? It would fit Ethical issues and Stigma pages. They are currently in Category:Sociological terminology notjusttired (talk) 13:15, 21 February 2019 (EST)

Just brainstorm but anti-science, freedom of inquiry, etc.

I was surprised to see Kenneth Friedman missing from this page. I think he has material about the actions against him for legitimate academic actions. Probably including a Youtube. New Jersey Medical School University of Medicine and Dentistry or so.

Ad hominem attacks

Would it be helpful to add evidence of false accusations?

Both the PACE trial "no direct threats" quote from the FOIA tribunal

The Young ME Sufferers Trust No Reported Harassment at Bristol University (Information Obtained Under FOI) No harassment at Bristol notjusttired (talk) 13:15, 21 February 2019 (EST)

Malcolm Macleod - and PLoSOne

Interesting declaration at the end of the Science Media Centre link already cited: "Declared interests Prof. Macleod: “Prof Sharpe used to have an office next to my wife’s; and I sit on the PLoS Data board that considered what to do about one of their other studies.” notjusttired (talk) 17:49, 21 February 2019 (EST)

John Peters to add

Michael Sharpe posted a threatening tweet to ME patient John Peters on Apr 8, 2018 in reply to John Peters accusing Sharpe of lying when he stated he had no Conflicts of Interest relevant to the PACE trial - Peters posted an image of Sharpe's letter declaring no conflicts of interest in the PACE trial https://twitter.com/profmsharpe/status/982887649043206144

Sharpe posted - Dear Mr Peters Please do state your allegation in precise detail so it can be tested for libel Thank you. https://twitter.com/profmsharpe/status/982887649043206144?s=20 Apr 8, 2018

Peters replied with evidence - In your ICMJE disclosure of 15/11/2010 (released by QMUL, their ref: 2017/F194, ICO decision 696884) you reveal financial benefit from work for an insurance co and for law firms.

Several more tweets followed. notjusttired (talk) 18:35, 28 February 2019 (EST)

Some of the comments are not attempts to silence or intimidate

For example the following:

Scientists and clinicians who expressed concern about the safety of interventions used in the PACE-trial were demeaned as "whiners" who "have managed to ensure there is no treatment available for patients with ME."[24] Critics of the PACE trial have been accused of disliking the results[25] and attempting "to find faults with them which would not be raised if they liked the results."[26]

I do think that these are useful for documenting the attitudes towards PACE/CBT/GET critics, but maybe we should move all the current material into a new article that isn't just about silencing and intimidation attempts? (I'm not suggesting to split this article)

I see what you mean. I turned the section in question into a subsection of the 'Background' paragraph, which acts as a sort of introduction. The title no longer speaks of intimidation but is: "Negative portrayal of PACE critics". Does that work? Other suggestions are welcome.

Cheers, - Sisyphus.

Hi User:Sisyphus and all - The page is now renamed to Intimidation and bullying of PACE trial critics and I think the terms like "whiners" and attempting to blame patients for the limited treatment options count as bullying - might also be worth making that point that patients have been advocating for pacing as a treatment/to manage the illness but have been consistently ignored and not had this funded - especially in the UK (given that it's someone British blaming then). This is already reference on the NICE guidelines pages.

Some content here would be useful on the Ethical issues and Stigma pages. Both Margaret Williams and Malcolm Hooper have previously written about the way certain BPS researchers denigrate and marginalise patients - see Denigration by Design and The Mental Health Movement - both from before the PACE trial publication.

notjusttired (talk) 18:29, 28 February 2019 (EST)

PACE trial A controversial study which claimed that CBT and GET were effective in treating "CFS/ME", despite the fact that its own data did not support this conclusion. Its results and methodology were widely disputed by patients, scientists, and the peer-reviewed scientific literature.

cognitive behavioral therapy (CBT) - A type of psychotherapy geared toward modifying alleged unhealthy thinking, behaviors or illness beliefs. One of the treatment arms used in the controversial PACE trial.

graded exercise therapy (GET) - A gradual increase in exercise or activity, according to a pre-defined plan. Focuses on overcoming the patient's alleged unhelpful illness beliefs that exertion can exacerbate symptoms, rather than on reversing physical deconditioning. Considered controversial, and possibly harmful, in the treatment or management of ME. One of the treatment arms of the controversial PACE trial.

biopsychosocial model (BPS) - A school of thought, usually based in psychology, which claims illness and disease to be the result of the intermingling of biological, psychological and social causes. (Learn more: me-pedia.org)