Who is Simon Wessely?

Wikipedia pages for Simon Wessely & Michael Sharpe could be updated to include a summary of the George Monbiot Guardian article & link in reference section. Is it something any of the S4ME members are able to do?

 

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This has just reminded me of something. Many, many years ago I posted a bunch of "bad ME quotes", derived solely from my own reading, to a now-defunct Google (or was it Yahoo? or maybe even Usenet?) group. I think there may be some limited overlap with Williams' quotes, but plenty of "new" ones too.

Posting it in the forlorn hope that it might help to inform some future exploration of the profound epistemic injustice we face.

 

Please could the folk here send me some links to articles written about Simon Wessely? I mean ones that call him out (not the ones that claim that the sun shines out of his arse.)

I have a friend in the media who'd like to do some private research on him. Thanks.

 

I would advise extreme caution. There are so many bear traps, including unreliable and unsubstantiated claims. If in doubt about anything, better to leave it out. The potential damage to us of publishing anything which isn’t 100% accurate exceeds any potential gain.

Be sure to read ensure that your friend reads SW’s own website to understand how he has used past criticisms to his advantage. In my view, his website is full of inaccuracies and misrepresentations – which itself could be the subject of investigation – but it’s important to be able to differentiate between what is valid and what is not.

There may well be accusations that have been made that are true but can’t be proven. In those cases I think it is usually better to avoid them as there are ample criticisms that can be made of his work without resorting to hearsay evidence.

I’m not sure if it’s in this thread but your friend might be interested to read my letter to the FT which references a paper by SW: https://www.ft.com/content/a2bd17a9-41fb-48fa-8fae-445ff22d6bae

Finally, I would recommend that your friend consults people on here – publicly or privately before publishing anything.

 

On 12 May 1994 Wessely delivered the 9th Eliot Slater lecture at the building in Queen Square. London, the former site of the National Hospital for Nervous Diseases, where Slater worked in a senior position for many years.

The last words of his speech were this:

"For as long a psychiatry exists in the public imagination as it does now, then each generation will find it necessary to discover its own ME."

My response almost 30 years later is - Long Covid?

The year before, in 1993, this paper was published:

David A, Wessely S: Chronic fatigue, M.E. and ICD 10. The Lancet 13 Nov 1993;1247-8.

“The inclusion in the tenth revision of the International Classification of Diseases (ICD 10) of benign myalgic encephalomyelitis as a synonym for postviral fatigue syndrome under Diseases of the Nervous System seems to represent an important moral victory for self-help groups in the UK. ... it is unlikely to lead to advances in our understanding of the condition."

"The nineteenth century term neurasthenia remains in the Mental and Behavioural Disorders chapter under Other Neurotic Disorders. ... Neurasthenia would readily suffice for ME.”

“Applying more stringent criteria for CFS in the hope of revealing a more neurological subgroup succeeds only in strengthening the association with psychiatric disorders.”

“We believe that this latest attempt to classify fatigue syndromes will prevent many people from seeing the world as it actually is.”

From the book Shell Shock to PTSD | Military Psychiatry from 1900 to the Gulf War | (taylorfrancis.com) 2006

The Abstract for Chapter 9 states:

"While the diagnostic labels shell shock, disordered action of the heart (DAH), effort syndrome, effects of Agent Orange and Gulf War Syndrome have become familiar, considerable controversy has waged over their nature (Binneveld, 1997; Shephard, 2000). We, among many others, have argued that they should be classified as medically unexplained syndromes (Barsky and Borus, 1999; Bass, Peveler and House, 2001). These are characterised by a range of functional somatic symptoms, common examples being: Fatigue, weakness, sleep difficulties, headache, muscle aches and joint pain, problems with memory, attention and concentration, nausea and other gastrointestinal symptoms, anxiety, depression, irritability, palpitations, shortness of breath, dizziness, sore throat and dry mouth (Barsky, 1988). Despite popular claims to the contrary, no simple biomedical cause has been discovered to account for these disorders, hence the term ‘medically unexplained’ (Wessely, 1999b). Furthermore, they are not easily interpreted using accepted psychiatric classifications (see below). Without demonstrable organic cause, war syndromes have attracted diverse causal explanations, ranging from pressure on the arteries of the chest, constitutional inferiority, toxic exposure, bacterial infection and microscopic cerebral haemorrhage."

Attributed to Simon Wessely on the Goodreads website:

“It is very important for scientists to engage with the media – to ensure the public has access to accurate, evidence-based scientific information, to keep us ever-present in the minds of policy makers and funders, and to inform public debate.”

Shell Shock to PTSD | Military Psychiatry from 1900 to the Gulf War | (taylorfrancis.com)


I wonder what this 12 May awareness day will bring forth.

 

New article about Wessely

An ME inquiry? Not likely when a pillar of the psychologising establishment has access to the halls of power

https://www.thecanary.co/opinion/20...tablishment-has-access-to-the-halls-of-power/

 

Excellent article.

The additional issue we face is that sharing articles such as this or the excellent Long Covid Advocacy 3 part series: https://longcovidadvocacy.substack.com/p/professor-catastrophe-simon-wessely

Make us sound like the militant conspiracy theorists that he has painted us as, so we are in a double bind.

Additionally he has a reputation for charming those who might help us and convincing them not to listen to us patients.

How do we fight that? How do we ever get our Post Office moment?

 

Only once he's retired. That's what power is all about. It will only make the fall harder, but progress in medicine happens at the pace of funerals.

Although one important thing here: the man did not promote himself to those positions, other people did, and his ideas have widespread support in the medical profession. It's because those beliefs are popular that he rose with them, not the other way around. He is definitely guilty of inflicting great ills on millions of people, but he did all of this in the open with enthusiastic support and admiration from his peers.

 

.
https://me-pedia.org/wiki/Ean_Proctor



Dr. Ann McIntire's Frontline Program about ME/CFS (Vintage VHS), early 1990s? This documentary includes an interview with Ean Proctor

https://www.youtube.com/watch?v=lINkStCj3rs

“Report of the Select Committee of Tynwald on the Petition for Redress of Grievance of Robin and Barbara Proctor” 19th April 1991, Isle of Man

and 'The McManus report' (McManus Commission of Inquiry into Child Care, Isle of Man) dated May 1994.

https://www.margaretwilliams.me/200...raight-about-ean-proctor-from-isle-of-man.pdf

 

Does anyone know if this in motion at all?
https://valerieeliotsmith.com/2022/03/16/a-manifesto-for-change-from-strategy-to-inquiry/

I saw this post so wasn’t sure:
https://valerieeliotsmith.com/2022/09/06/ten-years-on-somewhere-towards-the-end/

I would love to support the cause but am severe so couldn’t do a lot.
Thanks!

 

Hi @RainbowCloud - thank you for your question. It's slightly off-topic here but I will reply anyway (although the moderators may move or delete it).

No, my proposal as described in the post is not in motion. This is because, at the moment, the ME community in the UK is not sufficiently organised or coordinated to be able to start implementing a plan of this scale.

This project is far too big for any one individual or group of individuals to be able to take it on. For it to have a chance of success, it would require a coalition of the major ME institutions to commit to a long-term strategic plan, starting with a rationalisation and redistribution of resources. I don't see this happening in the foreseeable future.

The second blog post you mentioned explains more about this.

I hope that helps. Thank you for your interest.

 

Hi Valerie,


Thanks very much for your reply and for the immense amount of work you’ve done for our community! It makes me feel hopeful to see such strong, sensible and thorough planning but also sad that it feels so far from being actioned. I worry that it’ll take the rest of my life to see meaningful change, though I sincerely hope that’s not the case!


I have tried to read as much as possible of what you wrote but I’m severe and can’t manage that much, so forgive me if what I ask next is something you’ve already covered. I just wanted to know if there’s anything you think we can do at the moment on an individual level (or even group level, eg. via s4me) to try and encourage the various ME charities to consider actioning your plan? I’ve also found it hugely frustrating that they’re all separated out when it seems so obvious we need strength in numbers and a louder, unified voice. I wondered about emailing them with links to your thesis and asking whether they have read it and for their view on it, but I imagine that’s been tried already. I hate feeling helpless and want to do something even if it’s small, but perhaps it’s simply not the right time to put my energy into this avenue.


I know you said you are stepping back for your health so I understand if you can’t answer, and thank you so much again either way. We, at least, hear you!


Ps. To the lovely moderators… sorry if my original message was cross-posted! I figured that Simon Wessely often represents the BPS for us and with that being part of the problems raised in Valerie’s thesis I thought it was relevant here, but I totally understand if it’s veering off too much!

 

Thank you for your response, @RainbowCloud. It's very much appreciated.

I have had direct contact with various ME charities and other organisations over the years and they are aware of my work. However, these communications have not moved anything forward and, because part of my work involved criticising the status quo within the ME community, my contributions have not generally been welcomed.

The ME orgs have their own entrenched way of operating and, despite 50 years of repeating the same patterns with minimal progress to show for it, nevertheless they remain unreceptive to the possibility of doing things differently.

Other long-time advocates have had similar experiences with the ME orgs and, anecdotally, have reported discourteous, even abusive, responses (as has also happened to me).

As I said in my final blog post:

"A toxic culture has evolved around the illness which has poisoned public perception of the community and blocked urgently needed advances in recognition, research and the provision of health/social care.
However painful it is, we need to examine in detail ALL of the many different reasons why this has happened and what needs to be done to address the underlying causes. Inevitably, this involves the difficult task of challenging some long-held ideas, beliefs and practices."

This "difficult task of challenging some long-held ideas, beliefs and practices" needs to be undertaken within the ME community itself, as well as by the wider groups (such as the media and the psych lobby) that have traditionally caused so much suffering to the ME patient community.

Unsurprisingly, however, this is not a popular concept inside the ME community so, with that in mind, I do not think my work will gain any further traction.

 

Hi Valerie, sorry for taking a while to reply – had a crash unfortunately but hopefully working my way back to baseline now.


That’s really sad and frustrating to hear that despite trying to get the ME charities to hear you, you weren’t listened to. I’m very glad that the charities exist, but the scale of the issues that people with ME and related illnesses face is so enormous that we desperately need them to be taking every opportunity to progress, and and I really don’t feel like there’s adequate support relative to that.


I’m sure funding plays a part but it’s clearly not just that. Recently we’ve seen Carers UK organising a petition to hand to the new Labour government, the Lib Dems putting care at the centre of their campaign (and Emily Davey having MS), a public enquiry about the government failings during the Covid pandemic, a recent article about Maeve Boothby O’Neill and Sajid Javid, and I think; ‘come on ME charities, where are you? This is such an opening for you to capitalise on!’ Then… nothing (or nothing publicised anyway).

I know I’m preaching to the converted but at least you know others validate your views and feel so much more needs to be done too. I wish I had the know-how or energy to change things and thank you again for trying!