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Book published this week in UK referring to ME as psychosomatic

Sasha

Fine, thank you
Messages
17,863
Location
UK

I was unable to 'like' the review in that view but when I just went to the book page, it was the top review in 'most helpful reviews' and was able to give it the thumbs up.

It's extremely damning of the entire position and is excellent ammunition for wherever this book turns up (I've broken it into paras for readability):

M. Condon on Amazon said:
Galling book from an incompetent neurologist
By M. Condon on 1 Aug. 2015
Format: Hardcover
My personal memory was jarred by the glowing review this book received in the Times: six years ago, my father was referred to Dr. O'Sullivan for a neurological work up for unexplained fatigue and blurred vision.

She found nothing wrong after an MRI of the head. Within a year he was diagnosed by his internist with non-Hodgkins Lymphoma, which his oncologist later said was the probable cause of his earlier symptoms. Fortunately, he is in remission and has a good prognosis, no thanks to Dr. O'Sullivan.

The fact that she now writes a book arguing that many symptoms are "all in the head" is quite galling. She essentially said the same to my dear father. What about illness that she cannot explain because she did not look hard enough? Or that cannot be explained because of her professional incompetence?

In our case "medically unexplained symptoms" were actually "incompetent doctor syndrome".

Over time, reviews will get 'not helpful' clicks and will drop down the pile so the more people who mark this as 'helpful', the harder it will be to knock it off its perch.
 

user9876

Senior Member
Messages
4,556
Yes, they have become cagey with their language over time.
They now frame what they believe in words the way a teenager might answer the question 'where are you going Friday night' to their parents. For those that don't out right lie (and get caught out) it does require linguistic gymnastics. Away of saying what sounds unimpeachable while being open to a variety of interpretations.
Perhaps that doesn't sound like a big deal but the parents of the teenager might beg to differ.
How we say things can sometimes matter very much.

But science needs to be about clear and accurate hypothesis and descriptions. That is why maths becomes the language behind much of science.

To me other scientists should be dismissing them due to the ambiguities in what they say and not allowing them to get away with publishing vague thoughts and beliefs.
 

user9876

Senior Member
Messages
4,556
I am not questioning the validity of threats, I am questioning SW parading himself across media for an entire month, knowing that all pwME would be smeared by these (alleged) acts of a tiny minority. What kind of doctor does that to his patients? We had no right of reply, most letters that we/our charities submitted to press were ignored. And his close ties with Science Media Centre means that any actual debate about ME has been pretty much suffocated. And his friends give him knighthoods and medals.

We know it was an organised campaign from the science media centre because they pointed it out as an achievement in one of their annual reports.

If you were to substitute pwME for an ethnic group the way they ran their campaign would have been seen as totally unacceptable. But because it is a group of ME patients they get away with a campaign of bullying and prejudice in order to prevent questions about their theories and cover up the way they have spun results about their trials.
 

Seanko

Senior Member
Messages
119
Location
Swindon, UK
@Seanko Yes, I agree, we need high profile biomed researchers speaking up for us in media but the problem is that Wessely and his gang have been embedded in the media for two decades at least, and health editors - completely lacking in any scientific curiosity - have only been interested in his side the story.

@nasim marie jafry Yes, Wessely is on the databases of most national papers as the go to man for stories on ME/CFS and the journalists writing the stories are winging a knowledge of the subject. Simon Wessley is usually available for a quote, as he is semi-retired and cultivates hacks by inviting them for tea at the Royal College of Psychiatrists. They relax and are impressed how such a helpful man writes their story for them. Recently his stock quote has been "there is a strong case for larger trial". I think a Jonathan Edwards or Julia Newton could improve upon that :).

There are good scientists who can give a quote but their universities need to be on the ball more. Nobody from UCL, where the UK Rituximab trial is taking place, was mentioned in conjunction with the update of the Norwegian Ritxumab trial recently. It is in the interest of the institutes concerned to promote the work of their researchers better.

New Scientist article on Norwegian Rituximab tial 01/07/2015

The MEA in Britain always comes across as defensive rather than setting the agenda. Like everybody else journalists do not like being told they are wrong, even if they are. Cultivating journalists in the manner of Simon Wessley never does any harm, it takes time but pays off.
 
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Seanko

Senior Member
Messages
119
Location
Swindon, UK
@nasim marie jafry The Suzanne O'Sullivan book will quickly be forgotten by everybody outside the ME/CFS world.

What the relevant academics & ME/CFS charities could do is prepare for the next story to break. They will get advance warning of publication of important scientific papers via the ME/CFS research grape vine.

It would not take long for the media teams of Newcastle University or UCL to do an appropriate press release.
 
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nasim marie jafry

Senior Member
Messages
129
The MEA in Britain always comes across as defensive rather than setting the agenda

@Seanko With respect, I disagree, I think the MEA does a damned good job of supporting us - I think it is hard to understand exactly what Simon and his pals have pulled off in terms of burying ME and replacing it with a 'fatigue' narrative unless you have actually lived through it. Yes, the O'Sullivan book will be forgotten, but it is IMO unacceptable that she can blithely publish the chapter on ME that she did. She seems unaware of the potential harm she could do. That is inexcusable.
 

ukxmrv

Senior Member
Messages
4,413
Location
London
@nasim marie jafry The Suzanne O'Sullivan book will quickly be forgotten by everybody outside the ME/CFS world.

What the relevant academics & ME/CFS charities could do is prepare for the next story to break. They will get advance warning of publication of important scientific papers via the ME/CFS research grape vine.

It would not take long for the media teams of Newcastle University or UCL to do an appropriate press release.

They don't do that though do they?
 

Seanko

Senior Member
Messages
119
Location
Swindon, UK
They don't do that though do they?

Not really. UCL where the UK Rituximab trial is taking place have been strangely silent on the matter.

They did not rate a mention in reports of the latest Norwegian trial at the beginning of July 2015.

Instead the ubiquitous media friendly Simon Wessely was available for comment again.

UCL is supposed to be a top international university. Stanford & Columbia in the US would not make make the same error.
 

Aurator

Senior Member
Messages
625
If it's in your local library, it's worth a read.

Your reaction may well be, "what was all the fuss about?"
I've read the whole book. If by "fuss" you mean the adverse reaction from the ME community, then given the influence that books like this can have on the thinking of large numbers of "lay" people and medical professionals alike, I'd say the "fuss" has been amply justified.

The book may soon be forgotten by most people, as you say. The only problem is that by then its skewed version of reality will have done its work on the minds of the uncritical or the unsuspecting, and helped to feed still further the already well-nourished prejudice in many people's minds that ME is a psychiatric disorder.
 

Scarecrow

Revolting Peasant
Messages
1,904
Location
Scotland
Your reaction may well be, "what was all the fuss about?"
Strangely enough, that's why I haven't bothered with it.

Thanks to my GP, who I trusted, I used to believe I had a psychosomatic illness but I wasn't perturbed by it. Then 'stuff happened' that left me in no doubt that it wasn't psychosomatic.

I have no time for phrases such as 'medically unexplained symptoms' and 'functional' when they involve doublespeak.

Until someone can conclusively demonstrate the pathophysiology of a so called psychosomatic illness, especially the precise relationship between the 'psycho' and the 'somatic' then I'll continue to consider them the figment of the imagination of people who really should know better.

Does the book contain any evidence*** or is it just a series of vignettes and opinion?

*** edited to add: because that's what would be 'pioneering'
 
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ukxmrv

Senior Member
Messages
4,413
Location
London
I've read the whole book. If by "fuss" you mean the adverse reaction from the ME community, then given the influence that books like this can have on the thinking of large numbers of "lay" people and medical professionals alike, I'd say the "fuss" has been amply justified.

The book may soon be forgotten by most people, as you say. The only problem is that by then its skewed version of reality will have done its work on the minds of the uncritical or the unsuspecting, and helped to feed still further the already well-nourished prejudice in many people's minds that ME is a psychiatric disorder.

It's not a "fuss" when the central ideas of the book have been used against patients and still continue to be used against patients.

If one has been harmed by the ideas in the book and the Neurologists who support these methods then it is important us.

As an example the National Hospital in London is still a dangerous place for PWME to be seen at. One patient with ME killed themselves after being seen there in the last year and being labelled as Psycho-somatic to their family.
 

Seanko

Senior Member
Messages
119
Location
Swindon, UK
Is the correct response

a) to rant & rave giving the misleading impression that some ME/CFS patients are mentally ill.

Or

B) Take a more positive approach by promoting the work of Drs Fluge, Mella, Hornig, Montoya & Newton?
 

ukxmrv

Senior Member
Messages
4,413
Location
London
Is the correct response

a) to rant & rave giving the misleading impression that some ME/CFS patients are mentally ill.

Or

B) Take a more positive approach by promoting the work of Drs Fluge, Mella, Hornig, Montoya & Newton?

Can you give any examples of patients doing option 1

I've not seen any of these

In my experience PWME do not "rant and rave"

In my experience PWME do not give the impression of "being mentally ill"

If you are accusing members of this forum of "ranting and raving" or "appearing mentally ill" then please give specific examples.

You may need to refer to the forum rules on behavior before doing do. That is, your behaviour.
 
Messages
85
I feel ill just reading that.



So any treatment a doctor gives to try and help an ME sufferer with their symptoms is an "excess treatment cost"?

That horrible phrase implies that any treatment that isn't CBT is a waste of money, and that doctors should stop wasting their time and money on ME patients and just send them to the shrink. And that's an official NHS treatment guide?

I am not a car that needs tuning. I am a car that needs to drive over Sharpe, Stone, Wessely, Fink, Creed and Aylward, then put myself into reverse and do it again.

your posts should come with a warning. you keep making me genuinely laugh out loud (even when hubby sleeping - oops). even in the middle of reading about all this distressing - excuse me - crap.
 

A.B.

Senior Member
Messages
3,780
Is the correct response

a) to rant & rave giving the misleading impression that some ME/CFS patients are mentally ill.

Or

B) Take a more positive approach by promoting the work of Drs Fluge, Mella, Hornig, Montoya & Newton?

There is nothing wrong with loudly disagreeing with neglect, pseudoscience, and misanthropic views.

To label patients as mentally ill if they do so is the response of someone that is out of arguments.