BBC journalist has reached out asking for more info on ME patient abuse claims

RaviHVJ said:
Simon Wessely - perhaps the most prominent advocate of the notion that ME/CFS is largely a psychological condition - played a role in Ean Proctor's awful case.
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I recommend not saying that. As Prof W disputes it and says he was not involved.
Robert 1973 said:
From memory there is some comment from Wessely on the Ean Proctor on his website in response to criticism. Suggest anyone writing about that should check that first. It extra important to get all the facts 100% accurate when writing anything about SW. He is expert at using inaccuracies against us.
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yes IIRC it says he was not involved.

I'm not saying he was or wasnt, only that he says he wasnt & unless anyone has proof that he was, then.....
 
dave30th said:
I'd never seen this. Does anyone have any contact for Ean Proctor or have any idea where he is?
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He still lives on the Isle of Man and works in IT, and photography. I don’t recall where I saw this, sorry. He fully recovered and I think he gets a fair amount of requests which he doesn’t take up.
He’s easy to find on LinkedIn etc
https://me-pedia.org/wiki/Ean_Proctor
 
Aaron said:
https://www.margaretwilliams.me/200...raight-about-ean-proctor-from-isle-of-man.pdf

This is pretty damning evidence against Wessely and his involvement, no?
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Sorry Aaron i just not well enough to read/take in all that at the moment so i dont know.
But unless it contains actual letters and reports showing his involvement, rather than quotes from them, then i'd have thought that legally, no its not evidence, it's Margaret's account of evidence.

Thats only my opinion of course & I'm not saying i dont believe her, but i'm not the person who needs to be convinced.
Nor, it must be said, am i in any way any authority on any of this.

I dont want us to poison the well by over-egging the pudding, to mix metaphors. ITs bad enough that it happened, regardless of who did it, and plenty more recent examples, its just interesting to see that things havent moved on hardly at all in decades.
 
In Ean’s MEpedia page there’s a good, sourced overview of S Wessely. Including M Williams.

I agree the researcher doesn’t need to be “told” of his involvement, they can read more about it if that’s what they’re interested in doing.
 
JemPD said:
But unless it contains actual letters and reports showing his involvement, rather than quotes from them, then i'd have thought that legally, no its not evidence, it's Margaret's account of evidence.
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Strongly agree. Remember too that Margaret Williams is a pseudonym. So unless it’s supported by reliable primary sources it is an anonymous account of evidence. Please tread with extreme caution.

Edit: There will be people reading this who know Margaret Williams’s real identity. They may be able put the journalist in contact with him/her if you ask them to PM you.
 
Robert 1973 said:
Strongly agree. Remember too that Margaret Williams is a pseudonym. So unless it’s supported by reliable primary sources it is an anonymous account of evidence. Please tread with extreme caution.

Edit: There will be people reading this who know Margaret Williams’s real identity. They may be able put the journalist in contact with him/her if you ask them to PM you.
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I have been skimming this document the last couple of days. The quotations are from official reports so I would download the reports (if possible) and any other sources used, check the quotations and if they stand up, send the Williams document and all the other sources.

To be honest, I find much of it a bit thin.

I also don't think this is a good case to use. It's now very old and a lot of the details are a bit murky (with lots of disputed nuances). To me, it actually weakens our case: This? Again? Is that the best you can do? Something from over 30 years ago? And why this obsession with that nice Sir Simon?

I think the more recent cases, especially if we can show some sort of pattern of behaviour across different clinics, are much more powerful.

I also think it's worth talking about a more general abuse of patients, one which is within their (now accepted as without convincing evidence to support it) model and in the epistemic injustice built on it.

ETA: Yes, I agree with Rob.
 
Exactly what John says. I think bringing this up again, at this time, would probably be counterproductive. But if the same journalist wanted to do a wider investigation about how we got to where we are, with patients (including Proctor) being institutionally mistreated based on an unevidenced, unscientific model which has subsequently been shown to be both wrong and harmful, that could be useful. SW is probably more responsible for that than anyone else, but there are many other culprits.
 
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RaviHVJ said:
Simon Wessely - perhaps the most prominent advocate of the notion that ME/CFS is largely a psychological condition - played a role in Ean Proctor's awful case.
Click to expand...
Robert 1973 said:
From memory there is some comment from Wessely on the Ean Proctor on his website in response to criticism. Suggest anyone writing about that should check that first. It extra important to get all the facts 100% accurate when writing anything about SW. He is expert at using inaccuracies against us.
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As best I can recall without checking, Wessely did not sign the actual sectioning papers for Ean, but he did submit an expert witness statement to the court supporting it.

So he has some responsibility for the outcome.
 
Very best of luck speaking with the journalist, I’m bedbound 95% and I appreciate what you’re doing so much. Here’s a video from a whole back where Ean Procter is interviewed:



Also here’s a website with lots of solid sources which I hope will be helpful:

https://meandmeresources.wordpress.com/

David Tuller’s virology blog is surely the most comprehensive account of the PACE trial - that’d be the best place (or with Tuller himself if poss) for the journalist to fact check Wessely’s precise involvement:

https://virology.ws/david-tuller-posts/
https://virology.ws/david-tuller-posts/
And lastly this by Byron Hyde (reported via Reddit):


THANK YOU!!
ps. Will you let us know what might happen next? I live in hope there will be a Panorama documentary about the PACE scandal one day, and that shows just how utterly horrific this illness can be.
 
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Oh also…

Info about the ME papers that were originally sealed for 75yrs (usually it’s 30 and 75 is apparently highly unusual):

https://www.dailymail.co.uk/debate/...ics-wrong-deny-existence-chronic-fatigue.html

https://meassociation.org.uk/2011/0...eld-in-the-national-archives-21-january-2011/

https://retractionwatch.com/2016/08...controversial-chronic-fatigue-syndrome-study/

Nigel Speight describes some more cases of ME patient neglect:
https://meassociation.org.uk/2024/0...ents-with-very-severe-me-by-dr-nigel-speight/

Link to another s4me thread the journalist may be interested in:
https://www.s4me.info/threads/maeve-oneill.23420/page-3
 
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Aaron said:
I’ve been Tweeting alot about Wessely and his involvement in the Ean Proctor case and last night a BBC journalist and documentary presenter sent me a DM -

‘I stumbled across a post from you about MECFS and abuse of patients. Could you possibly share more?’

I know it’s just a DM on Twitter but I still wanted to run the opportunity past others and see if anyone wanted to volunteer to write a response for me? I don’t want to blow it by saying the wrong thing or missing anything out etc.
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The problem with the BBC is that DG Tim Davie refuses to answer FoI questions about its tie in with the Science Media Centre, of which Simon Wessely was a founding trustee, it put out a discraceful package by science correspondent Tom Feilden about 'activists' threatening adherents of the Wessely school, and it left Panorama's Matthew Hill out to dry over his documentary 'Sick and Tired.' Who is this BBC journalist? Someone very courageous, I assume. Maybe he/she should look at these, which you mentioned on March 17 2022. https://www.scottishlegal.com/articles/orthodoxy-on-trial-the-pathogenesis-of-a-diagnosis.
 
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