BBC Radio 4: The Life Scientific with Simon Wessely, 14th Feb 2017

Cinders66

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I didn't realise that AFME awarded about a quarter of a million to Prof Peter White as recently as 2014.

How can they possibly claim to represent people with ME?







They didn't, a former CFS charity did and they chose AFME as their natural heirs to continue oversight of the study when they folded when their leader passed away.

AFME are a disgrace to people with ME who've been sick years and been shafted left right and centre. P white good company
 
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Simon was on TV this morning discussing military personnel mental health, slot starts at 01:12:30.

http://www.bbc.co.uk/iplayer/episode/b08f40jm/victoria-derbyshire-17022017
Ughh. What a sleaze. Just his body language gives him away as a master of BS. He reminds me of a number of people I've met professionally, in particular the lack of a genuine compassion in his eyes, his fidgity demeanour when he's just talking off the top of his head about nothing. The way he's draped himself over the couch as if he owns it, and at the end of it a smug self satisfied nod as if to say "that's right .....I'm great aren't I ?" Truly disgusting!
 

Esther12

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I think this is very revealing. He is effectively saying, it was easy to dream up any old treatment since there wasn't one to test it against.

Just make up an un-testable theory, design an easy treatment to administer, preferably one which, when it fails, can be ascribed to the patients not wanting to get better.

Bingo! Become the national expert without any effort at all.
Yes - this is how he tries to justify himself.

"Before I became involved patients were treated with contempt and nothing of any use was ever done for them.... so what I did may look terrible, but it was probably still an improvement!"

Unfortunanately, long-term patients seem to argue that they started being treated much, much worse once Simon's theories came into fashinon.
 

ukxmrv

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Yes - this is how he tries to justify himself.

"Before I became involved patients were treated with contempt and nothing of any use was ever done for them.... so what I did may look terrible, but it was probably still an improvement!"

Unfortunanately, long-term patients seem to argue that they started being treated much, much worse once Simon's theories came into fashinon.
It simply isn't true that SW walked in to a vacuum of ignorance at the National ( as opposed to a willful ignorance)

There are a couple of documents by Margaret Williams which are snippets as she says but are a good starting timeline of what was happening in the late 80's and 90's in the UK.

As an example (and I've split it up for readability)

"1988: At a meeting on ME held at The Royal Free Hospital on 16th May 1988, Professor Tim Peters from Northwick Park Hospital said his team had found abnormalities of Type II muscle fibres (anaerobic) in ME patients, which were atrophied, with hypertrophy of Type I muscle fibres; he had measured total RNA in muscle cells and found it to be significantly reduced in ME patients (if there is a decline in RNA, there is a decline in the ability to make muscle protein – infusion of tag-leucine showed overall metabolism is clearly reduced and the rate at which muscle is being formed is reduced).

1989: Professor Peters (then Professor of Clinical Biochemistry and Consultant Chemical Pathologist at Kings College Hospital, London) wrote on page 24 of the magazine InterAction No: 3 of the charity ME Action, now AfME: “Exciting studies have recently been reported of persistent viral RNA in biopsies from patients with ME….

Based on these observations we have started to investigate muscle protein synthesis; that is, the ability of muscle to repair itself…in patients with ME. Measurements of muscle RNA, the machinery for protein synthesis, showed consistently reduced amounts in their biopsies. Studies of whole body and, specifically, thigh muscle protein synthesis rate in these patients show reduced values and thus a pattern is beginning to emerge of persistent viral infection, and possibly re-infection, interfering with the machinery for making tissue protein and thus impairing protein synthesis”.

Discussing the view of those who claim that changes in mitochondrial function and impaired muscle synthesis are merely secondary events due to lack of use of the muscles, Professor Peters continued: “It is hard to see how (this) can explain the persistence of enteroviral RNA in muscle fibres….immobility leads to a selective loss of Type I fibres, a feature not seen in patients with ME”.

The same issue of InterAction reported on page 22 the neurological abnormalities found by Carolyn Warner and her team from Buffalo, NY (elevated IgG synthesis, elevated CSF cell count, prolonged visual evoked response latency, abnormal EEG and MRI lesions, and neuromuscular abnormalities including over 20% polyphasic motor units on quantitative EMG, inflammatory infiltrates and Type II fibre atrophy, these being reported in Neurology 1989:39:Suppl 1: 420).

Commenting on these abnormalities, Dr Goran Jamal, Consultant in Clinical Neurophysiology at The Institute of Neurological Sciences, Glasgow, affirmed that those results are consistent with disturbed immune function and persistent infection, and that it proves once again that one can find neurological abnormalities if one looks."

http://www.meactionuk.org.uk/Grey-Information-on-ME-CFS.htm

http://www.meactionuk.org.uk/Grey-Information-Part-2.htm
 

trishrhymes

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Have any of those findings since been replicated though? Could it just be that they were BS?
I don't know, but we never got the chance to find out with big well funded studies back in the 1980's, since Wessely and his pals seem to have dismissed and ignored them and soaked up all the research funding.

My point is that Wessely chose to dismiss the biomedical evidence at the time, and has continued to do so for the last 30 years.
 

Esther12

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Yeah, it's just possible Wessely was right to dismiss some of that research. I don't know enough about the details to say. I try to be as cautious as possible with criticising Wessely. There's so much solid stuff that we don't want to distract from!
 
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JA: You’ve said that Chronic Fatigue Syndrome lives in an ambigous territory, somewhere between medicine and psychiatry. What was known, at the time when you started serious research into the condition?
Very strange that the President of the Royal College of Psychiatry, and of the Royal College of Medicine, should suggest that psychiatry is not part of medicine. Where is this mysterious territory between the two?
 

Barry53

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Ughh. What a sleaze. Just his body language gives him away as a master of BS. He reminds me of a number of people I've met professionally, in particular the lack of a genuine compassion in his eyes, his fidgity demeanour when he's just talking off the top of his head about nothing. The way he's draped himself over the couch as if he owns it, and at the end of it a smug self satisfied nod as if to say "that's right .....I'm great aren't I ?" Truly disgusting!
https://psychcentral.com/disorders/narcissistic-personality-disorder-symptoms/

upload_2017-2-17_20-0-6.png
 
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I dont care how Prof Wessely looks or sits - I dont think we on PR should lower ourselves to that level of debate.

What I care about is what this man does, what he says (as he has influence), what he publishes and so on - and his legacy which we are all dealing with now in the NHS and the media concerning ME/CFS and GWS

its not surprising to me that even in this programme on the BBC - Simon speaks like a spokesperson for the Army - no surprise after all, as his work for the Army has given him substantial roles and fame, What's striking yet again is that the actual soldier (and I was involved with the Army myself so I can speak from experience) said there was a lack of services that he could easily access and he wanted some military personnel based in these clinics so he could relate to them. ---- in contrast Sir Simon went off on one saying everything was fine, there were too many charities, almost too much help, and he didnt really understand the soldiers' point that he wanted Army doctors, nurses, staff - not NHS civilians who wouldnt understand his combat stress - or simply he'd feel more at ease with military personnel.

Yet again - Sir Simon can not connect with the patient/ sufferer - and speaks a party line that is out of touch.
 

slysaint

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http://www.bbc.co.uk/news/magazine-35341643
"Greenberg believes mental strain has played an important role. "When we're stressed we have a tendency to turn psychological distress into physical symptoms," he says. "And there's no doubt going to war is very stressful. We've seen medically unexplained physical symptoms in all other conflicts,";
sound familiar (apart from the going to war bit.........)?
"However, not all experts are convinced that the reasons are psychological."
"Health problems persist and anger has built among veterans at what they say is a lack of adequate research, a "cover-up" even."
http://topdocumentaryfilms.com/gulf-war-syndrome/

haven't read this yet but the heading is
"Gulf War Illness victims are just plain cowards"-Simon Wessely

http://www.ohioactionlyme.org/wp-content/uploads/2015/02/150509_GWI_WESSELY.pdf

then there's this:
The true story of Gulf War Syndrome - Professor Simon Wessely

around 40minutes in he makes the comparison with CFS.
But he goes thro history, various wars to make his case that the connection is it's all largely psychological.

But then, there have been biological research studies done on GWI but, as with ME, not a lot:
this one is on mytochondrial dysfunction.
http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0092887

and this one on GWI and CFS:
http://explore.georgetown.edu/researchprojects/index.cfm?Action=View&DocumentID=42587

It's a shame the US military won't stump up the cash to expand the work Naviaux and Ron Davis have been doing to include GWI sufferers........(?) which could be to our mutual benefit (and of course be one in the eye for you know who).;)
 
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Cinders66

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MEA take on Wessely after radio 4 interview
Jim Al-khalili’s subject in his ‘The Life Scientific’ programme on BBC Radio 4 on Monday, February 13, was Professor Sir Simon Wessely, president of the Royal College of Psychiatrists, who has had a professional interest in ME/CFS since early in his career. We thought you might want to read the conversation – a transcript of which has been circulating on the internet for the last 24 hours or so. We’ve not had a chance yet to check the text against the actual BBC iPLayer recording at www.bbc.co.uk/programmes/b08dnr3gbut will do so shortly. Our thanks to Tom Kindlon for circulating the text.
 

Cinders66

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Sometimes I wish the MEA would be less determined to be even handed, and would put up items like this with a health warning...
A health warning is still pretty neutral & not enough. It's been patients on twitter having to try to educate (and They've done great) and write letters whilst patient reps refuse to speak up to the dominant individuals in the Wessely school. We currently have two drs in UK in Prof Edwards & Dr weir willing to directly call a spade a spade and counter the narrative of unruly patients grumbling against noble resesrchers and we wonder why we are not winning our battle. Not speaking up isnt being even handed its not being prepared to challenge the establishment screwing us over and its failing patient
 
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