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

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.

 

Hey Trish, thanks for replying so quickly!

Oh that’s great. Yeah I wasn’t sure whether to attempt to just write some sort of summary and respond with that or just send over some links, I guess I was worried they’d maybe not read through anything that was already reported on. I was also wondering if it would be a good opportunity to talk specifically about Wessely as I assume it was those Tweets that got their attention and he’s never been properly called out before has he?

 

George Monbiot article is the only mainstream article I know of that property called out Wesseley.

 

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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

2019 'Carol Monaghan MP - Children with ME - House of Commons ME debate'

https://www.youtube.com/watch?v=5HzZ4U6yU6o

Some important Reports by the ME charity for children/young people, The Tymes Trust:

'False Allegations of Child Abuse in Cases of Childhood Myalgic Encephalomyelitis (ME)'

First published in the peer reviewed journal Argument and Critique
https://www.tymestrust.org/pdfs/falseallegations.pdf



'The Forgotten Children - A Dossier of Shame' 2003

'Tymes Trust presented this document to the Prime Minister on the 12th of May 2003. It details shocking statistics the Trust has collated from information supplied by families of children with ME.'

'Tymes Trust has evidence that the very systems set up by the government to help sick children and young people are being interpreted in ways that either ignore children with ME, or threaten, bully and intimidate them'

https://www.tymestrust.org/pdfs/theforgottenchildren.pdf



Further publications and Reports by the Tymes Trust.
https://www.tymestrust.org/tymespublications.htm

https://www.tymestrust.org/



2024: accusations of child abuse against parents of children with Long Covid (also mentions similar against families of children with ME):

https://www.s4me.info/threads/artic...-fii-accusations-in-me-cfs.38203/#post-528131

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No problem! I’ll send over the Monblot article and some of the other links and videos that have been contributed. Thanks!

 

We need to be very careful that this isnt actually someone seeking to present the abuse as 'false abuse claims against drs/scientists' ..... ie presenting perpetrators (either knowingly or well intentioned) of abuse, as the victims of false claims.

So yes getting facts straight is essential.

ETA: just in case - if they want to know about ME/CFS itself the dialogues videos are good & a reputable source, funded by the Wellcome Trust
Dialogues for a neglected illness - Dialogues (dialogues-mecfs.co.uk)

 

you spoke about Ean Proctor.... not sure if you seen this video with Ean and his parents (it's later on in the clip)

ME is still not taken seriously - YouTube

 

Also direct them to Sean O'Neill from The Times.

featured here on channel 4 news, he'd have a major story to tell i reckon

M.E.: Lives devastated - and sufferers told it's made up (youtube.com)

Edited: for clarity

 

‘You don’t want to get better’: the outdated treatment of ME/CFS patients is a national scandal

'From harmful ‘therapies’ to social services referrals, the notion that this illness is psychosomatic is having devastating effects'

George Monbiot

https://www.theguardian.com/comment...atigue-syndrome-me-treatments-social-services

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I'm very severe and can't type much but here's something I wrote back in 2018 about my experience:

I was sectioned on 20th August 2014 and kept there for a month.

The staff in the psychiatric ward told me I wasn't in any pain and on one occasion refused to help me up after I'd fallen over due to a reaction from the medication they made me to take. They forced me to walk around despite being bedbound, if I didn't walk to the cafeteria I wasn't fed properly. They would lock me out of my room to make me to exercise more.

After I was discharged I made a complaint because they made my illness permanently worse, in their response they classed my incarceration as a success story because they saw me walking around and talking to other inmates/patients. They said because all the tests were negative it was only logical to assume it must be psychological. My complaints were over-ruled and they got away with it.

Now I have to live in fear that one day they will section me again, making my condition even worse and making life unbearable. In August 2016 I had a psychiatrist come round telling me (without any evidence) that I was somatizing and need to go to a specialist somatization clinic to get CBT/GET.

PM me for more information.

 

This is one idea about how to structure it:

Hi Divya! Thanks for reaching out to me. There's a lot to say about this - ME/CFS patients have been seriously mistreated for decades. This mistreatment is the result of ME/CFS being viewed until recently as a largely psychological illness. George Monbiot wrote a column on this scandal earlier this year - https://www.theguardian.com/comment...atigue-syndrome-me-treatments-social-services

This past year, two separate patients with severe ME (patients who are bedbound, sometimes barely able to speak) have faced pretty horrific mistreatment by UK hospitals who have, in part, understood these young patients as having psychological issues rather than a highly disabling physical illness. The community has been particularly worried about these two patients because in 2021, Maeve Boothby O'Neill, the daughter of a Times journalist, died after facing severe medical neglect by a UK hospital which refused to take her ME/CFS seriously.

In the tweets you saw, I frequently mention Ean Proctor, who after developing ME at 11 was removed from his parents and hospitalised - ultimately being subjected to inhumane treatments that significantly worsened his condition. 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.


I wouldn't send what I'd written - it's more kind of the bare bones. You'd need to add links on Maeve, Ean, and the others.

 

In a small crash so I'm afraid I can't help out a lot more today - but I think I'd focus on providing as many authoritative sources as possible, so includes Times articles about Maeve, Monbiot's article etc.

 

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.

 

I would firstly reply to the researcher and ask her what is she looking for specifically? As there are several angles
-abuse of children and young people (there are current active cases) and the risk of parents being accused of Facetious Disorder, the risk of children being removed from their care like Ean was.
-abuse of adults (there will be recent, and current cases)
-the general gaslighting and harm caused by the BSP, GET and CBT (Monbiot’s article is a good introduction)
-Patients who have died because the NHS does not and will not treat them (Maeve Boothby O’Neill, inquest due next month)

Just my idea as she can bit hit with a load of info but what really piqued her interest? She probably wont find stories of children being thrown in a swimming pool if that’s what she’s looking for.

 

I'd never seen this. Does anyone have any contact for Ean Proctor or have any idea where he is?

 

Who is the journalist? I'm happy to touch base with them as a fellow journalist if I have contact info.