Simon Wessely wins prize for "Standing Up For Science."

[justinreilly]

That's not really true. They tend to enjoy happy and comfortable retirements.

That does happen of course, but as Dan Peterson said, back in the early 90s "in 50 years these people's graves will be desecrated."

Their fall may happen soon or years after they die, but we will achieve it and the more we do to expose them, the sooner we will make that day.

 

[Enid]

Good analyses and discussion going on here. I must add my concern about the psychiatric influence (hold) in medical education. OK so ten years ago, 3 junior docs in A& E sent in a psychiatrist - they diagnosed their NEW idea "all in your mind". So somehow we must expose to stem this rot. To call that and them(selves) science/scientists is outrageous.

 

[Firestormm]

Firestormm - re your interesting post 149 - SW 9/11/2012 @ 17.23 .......working at the NH for Neurology, Queen Square ......describing the reactions of the Neurologists .... Behan in the minority then and still is now.

Well a close member of my own family is a Neurologist (Prof) and he and the two I was sent to a little while ago finding abnormalites in MRI scans (amongst others) would not agree. In fact suggested viral and one actually apologised suggesting I find an ME specialist to whom he would release all his test results. He simply did not understand and admitted it. The close family member developed ME a year after mine and is being treated with a range of drugs (overseas) by his own Docs.

Cheerio Simon and all your claptrap - this isn't 1987 - catch up.

Morning Enid,

Your posts continue to interest me in a good way

You might like to consider contacting the ME Association as they have maintained strong relations with the 'few' neurologists who express an interest in ME. This number - according to them - is shrinking with (from memory and notably) Findley retired and Chaudhuri - I believe - heading in the same direction. So any new names you could furnish them with would I am sure be very welcome indeed!

Professor Behan (also retired of course) incidentally is now the ME Association's Patron.

 

[jace]

Hi folks, did anyone see the comment by clouty on noodlemaz Speaks to the out of context argument...

Regarding the truth or otherwise of the patient communities perception of Prof Wessely, and that of his colleagues Peter White and Trudy Chalder, one has to study a few documents prepared by the above.
First, the lecture notes from Prof. Wessely’s talk, “Microbes, Mental Illness, the Media and ME: The Construction of a Disease” from 1994. These can be viewed online in their entirety, here: http://www.meactionuk.org.uk/wessely_speech_120594.htm

“Let us start with neurasthenia – nervous exhaustion – the precursor of modern ME”

This is an unsound connection. Neurasthenia as a diagnosis was of itself questionable.

“There is also a phenomenon known as myalgic encephalomyelitis (sic) – or ME. This is not open to simple definition – ICD-10 now discourages its use for that reason – instead, I will argue that ME is simply a belief, the belief that one has an illness called ME.”

Prof. Wessely goes on to explain that psychiatric explanations are problematic for insurance reasons, and for reasons of self and societal esteem. He hypothesises that large numbers of people suffer fatigue, and CFS is at the extreme end of that. Prof. Wessely has been instrumental in the conflating of ME and Idiopathic Chronic Fatigue.
He’s obviously never been surprised to find his legs don’t work, or the world spinning round him so that he didn’t know which way was up. He’s never experienced the spikes of neural pain, and he never mentions the brain lesions shown on Tesla 3 and above MRI imaging. Lucky Simon Wessely!
SW ends with a note to himself

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

Prof Wessely gets a credit on the heavily spun, exceedingly expensive, and (if you read the full paper) easily discreditable PACE study, whose lead author was Peter White. I will list below a couple of bullet point problems (among many) with this. See the full paper here: http://dl.dropbox.com/u/44533954/PACEarticle.pdf
* Peter White himself admits that the patients are Oxford CFS patients, not ME patients [1,2] yet the spin has all been of the “Exercise cures ME” ilk
* In order to enter the study, patients needed a SF36 score of 65 or above (the higher the fitter). In order to be counted as ‘improved’, they needed an SF36 score of 60 or above. This improvement level was reduced from the original study protocol from 75 to 60! [3]
The main points of error in PACE are entertainingly illuminated in a series of short videos that can be found here http://www.youtube.com/watch?v=Sa3LyYxu49s&feature=channel&list=UL
Yet, all we are offered, because of the influence of Simon Wessely, UNUMprovident [4], Peter White, Trudy Chalder [5] and others, by the NHS are treatments defined by the assumption of Major Depressive Disorder, the NICE guidelines and the PACE trial.
The reality of what it is like to be struck down with ME, a serious neurological illness that people die from, has been told by the best selling author Laura Hillenbrand, of Seabiscuit and Unbroken fame [6]
Laura went on to tell the ongoing experience of being very ill with this illness in my last link [7]
[1] http://www.meactionuk.org.uk/Hoopers-initial-response-to-PDW-letter.htm
[2] http://www.ncbi.nlm.nih.gov/pubmed/22571806
[3] PD White, MC Sharpe, T Chalder , JC DeCesare and R Walwyn for the PACE trial group; Protocol for the PACE trial: A randomised controlled trial of adaptive pacing, cognitive behaviour therapy, and graded exercise as supplements to standardised specialist medical care versus standardised specialist medical care alone for patients with the chronic fatigue syndrome/myalgic encephalomyelitis or encephalopathy; BMC Neurology 2007, 7:6
[4] http://www.compassonline.org.uk/news/item.asp?n=563 (search for ‘Wessely)
[5] http://www.veoh.com/watch/v19931844B5PjTrh4 andhttp://www.veoh.com/watch/v19931890Xyz2eEn7
[6] http://www.cfids-cab.org/MESA/Hillenbrand.html
[7] http://www.cfids.org/cfidslink/2009/010708.asp


Regarding Ellen G, she's a psychologist with ME who has done some important work including co-authoring the London definition.
I love the FOI request idea. I'm going to pick that one up and run with it. Bob's point about asking UCL for illegal threats is noted. Don't hold your breath!

ETA It's Kings I need to ask.

 

[Enid]

Morning Firestormm, How I wish I could give names. My NHS Consultant (last seen about 6 years ago) effectively closed his books whilst leaving things open for an ME specialist to see all his findings. Sadly the way things go - neither the expertise nor the time himself. My tests were carried out by Kings Neurologists and seemed to remain as open minded, but since our symptoms are more than just neurological probably would not follow up being outside their specifics. My brother (full blown ME) is now retired and under his own docs in his US university. Yes I keep up with the MEAssoc and Charles Shephard. I do feel that generally Neurologists are not as resistant as SW tries to make out, there are a set of symptoms and measured abnormalities - no self respecting Neurologist would disagree. Just not understood yet.

To Firestormm @ 163.

 

[user9876]

It seems to me that they are constantly attempting to make the facts (the research evidence), fit their model of illness, but it doesn't fit, and so they get themselves into a really inconsistent muddle by taking that approach

Isn't that the point that there reasoning is muddled. Rather then looking at lots of different quotes shouldn't we take a recent rendition of their model and demonstrate the ambiguities and muddle. That's where the bad science is.

Its easy for them to respond to different quotes or talk about other issues. If we want to enage them we need to do that on a basis of a detailed critique of their model. Leaving the expectation for them to disambiguate and unmuddle their own arguments. Having said that I don't think they will engage at that level since it is too hard and challenges their beliefs.

The bottom line, for me, is that they say that it is not possible to distinguish CFS from an anxiety or a somatoform disorder, as they say that they all have identical medical presentations.
This suggests that they are not looking for differences, and that they aren't interested in the differences, and that they aren't interested in researching anything other than idiopathic fatiguing illnesses.

Is there really such a thing as a somatoform disorder or is it just their label for people with an illness that is not understood.

 

[justinreilly]

I think this is a very witty idea. We can invent overblown prize names and descriptions, mocking this prize, then circulate these, making sure the offenders see it and know that a lot of people are laughing and disgusted. Making a joke of someone's behavior is a much more powerful strategy than simply being angry in that it conveys a sense of empowerment rather than weak protest. Guido, the best comedians would use just your sort of approach to lampoon such destructive idiocy.

Sing, for fun I once wrote on the talk page of the wikipedia article on Simon Wessely that with all the praising of Wessely and noting of his awards we must not forget to add in that the Royal Academy of Fine Arts awarded him a gold medal for raising medical bullshit to an art form. My insightful comment was deleted within a few minutes, sadly.

 

[Adamskitutu]

Sorry if I'm missing stuff - thread's moving quickly, and I'm distracted by other stuff.
I searched for 'disgust', and the old quote popped up out of context. I think that those sorts of documents are unhelpful, and I'd advise people to stay away from those sorts of things. I find that I almost always need to quote the full paragraph for psychosocial CFS stuff, and even then I'm sure that they could sometimes fairly complain I was misrepresenting them.

A bit OT, but there's a discussion of Tate Mitchell's quotable quotes here: http://forums.phoenixrising.me/inde...bt-in-me-cfs-compiled-by-tate-mitchell.15184/

I posted in it, but can barely remember it now. It looks like Tate has quoted full paragraphs and he's linked to a lot of the primary sources, he's also done some other good CFS work. That looks like a much better way of collating illustrative examples of the psychosocial approach to CFS (I've been trying to learn from some of the things I like about how Tate presents things). With documents on the internet, we really should take advantage of linking to give people an easy way to check context (lack of open access often makes this a pain).

Angela Kennedy writes about this comment, and the context in which it was written, in her book, especially around Wessely's support for CFS being equated to the term neurasthenia- which he even knows historically generated 'disgust' for the patient. She devotes a whole chapter to exactly how medical writing about CFS patients is written as 'dysphoric'. She does this well, without taking anything out of context.

 

[Firestormm]

Angela Kennedy writes about this comment, and the context in which it was written, in her book, especially around Wessely's support for CFS being equated to the term neurasthenia- which he even knows historically generated 'disgust' for the patient. She devotes a whole chapter to exactly how medical writing about CFS patients is written as 'dysphoric'. She does this well, without taking anything out of context.

Did you mean medical writing itself is 'dysphoric' or that patients with the condition are regarded as having 'dysphoric' associated disorders? Thanks.

Dysphoria

An emotional state characterized by anxiety, depression, or unease

[New Latin, from Greek dusphori

, distress, from dusphoros, hard to bear : dus-, dys- + -phoros, -phorous.]

http://www.thefreedictionary.com/dysphoric

 

[Bob]

He hypothesises that large numbers of people suffer fatigue, and CFS is at the extreme end of that.

Yes, that's exactly what his 2005 review paper says, although the wording is a bit slippery, leaving room for a little ambiguity.

Somatoform Disorders.
(WPA Series in Evidence & Experience in Psychiatry)
Volume 9
2005
Editors: Mario Maj, Hagop S. Akiskal, Juan E. Mezzich and Ahmed Okasha
ISBN: 978-0-470-01612-1
http://eu.wiley.com/WileyCDA/WileyTitle/productCd-0470016124.html

A Discrete Disorder?

Although CFS is often regarded as a discrete condition, much as neurasthenia used to be, the severity of the symptoms of fatigue is continuously distributed in the general population [2] and the case definition can also be regarded as simply defining cut-off points on these continua.

It is clear from his paper that he is only interested in the symptom of fatigue, and nothing else.
It's not CFS that he studies, it's chronic fatigue.

 

[Adamskitutu]

Did you mean medical writing itself is 'dysphoric' or that patients with the condition are regarded as having 'dysphoric' associated disorders? Thanks.

That the relevant medical literature describes ME/CFS patients in dysphoric terms (or any patient given a psychogenic diagnosis).

 

[Firestormm]

That the relevant medical literature describes ME/CFS patients in dysphoric terms (or any patient given a psychogenic diagnosis).

ta.

 

[jace]

Yes, that's exactly what his 2005 review paper says, although the wording is a bit slippery, leaving room for a little ambiguity.

said Bob.

Ambiguity is all part of the game-plan, along with revising history and being all things to all people. It works, unfortunately, unlike the illness model and treatment plans he's put in place for us, as witnessed by Wessely's lucrative and influential career.

The noodlemaz discussion marches on.

 

[SilverbladeTE]

only award Wessely deserves, is that of a single, non-return ticket to Buttholistan as the prize for winning Smug Slimey Smeghead of the Year, for the past two decades!

 

[alex3619]

Yes jace, there is systemic ambiguity in much of the literature on the dysfunctional belief model, especially in material covered by the media. Some of this is due to redefinitions of things: sometimes these are explicit but rarely mentioned (so if you don't do your research you miss it); sometimes its implied and not explicit, but the argument cannot follow without the implicit redefinition; and sometimes its just blatant. I think there are instances where in the same discussion the meaning of terms varies repeatedly. I hope to be analyzing some of those next year.

PS Prof. Hooper's reply:
http://www.meactionuk.org.uk/Wessely_John_Maddox_Award.htm

 

[Enid]

@ jace 173 - I particulary agree with your comment "the model of the illness and the treatment plans he has put in place for us". It brought to a halt any other consideration or research since his beginnings all those years ago.

 

[natasa778]

... with all the praising of Wessely and noting of his awards we must not forget to add in that the Royal Academy of Fine Arts awarded him a gold medal for raising medical bullshit to an art form.

This is a good contender for his tombstone quote one day

 

[Merry]

PS Prof. Hooper's reply:
http://www.meactionuk.org.uk/Wessely_John_Maddox_Award.htm

Thank you, Alex. I just read Professor Hooper's reply. Thank you, thank you, Professor Hooper!

 

[maryb]

I just love Prof Hooper, no-one puts it quite like him, he deserves a blinking knighthood for how he has demonstrated the behaviour expected of a caring compassionate medical professional. Bloody brilliant.

 

[Nielk]

Was this Prof. Hooper's reply published anywhere?