Book published this week in UK referring to ME as psychosomatic

[Sasha]

One thing that does amaze me about people who complain, as they frequently do, of the collective venom, or intolerance, or whatever, shown by PWME in particular, and rarely if ever by people with other putatively psychosomatic conditions, is that they never earnestly ask themselves quite why things are this way.

What's weird about that Amazon situation is that the other reviewers have explained over and over why they're angry and have pointed out the IOM report evidence and so on and yet these 5* people are utterly, utterly deaf to it all. It's as though they can't read, and yet they apparently have read a whole book.

It's just bizarre.

 

[Aurator]

What's weird about that Amazon situation is that the other reviewers have explained over and over why they're angry and have pointed out the IOM report evidence and so on and yet these 5* people are utterly, utterly deaf to it all. It's as though they can't read, and yet they apparently have read a whole book.

As far as they're concerned there's nothing new in what anyone has said in opposition to them, so naturally they won't trouble themselves to read it. They've made up their minds that ME is a psychological disorder and that what anyone may say against this view is inevitably just going to partake of the same psychological unsoundness that characterizes and engenders the disorder in the first place.

The fact that they are prepared to believe in a theory of causation that cannot be verified (though fortunately for us there is always the hope that it may one day be comprehensively falsified) doesn't seem to occur to them as a psychologically or at least scientifically unsound thing to do, but then they're so focused on other people's "delusional" behaviour that it never occurs to them to shine the light on themselves.

 

[Wildcat]

Believing that ME is psychosomatic caused an nhs nurse and doctor to refuse to examine and treat a broken bone in a&e in 2003. Publicity for psychosomatic beliefs about ME , and vicious statements about the patients, does not just sit there being noxious. It translates into real world extremes of abuse of the patients.

If you have to go to a&e with a medical emergency or injury in the uk, dont tell them you have ME.

The refusing to treat a broken bone was the last of very many last straws of unethical cruelty i have been subjected to in the name of psychologising ME. That belief and the culture of contempt can
, and does, make health professionals crazy.

 

[Valentijn]

What's weird about that Amazon situation is that the other reviewers have explained over and over why they're angry and have pointed out the IOM report evidence and so on and yet these 5* people are utterly, utterly deaf to it all. It's as though they can't read, and yet they apparently have read a whole book.

It's just bizarre.

At least one of them seemed to be a colleague of the author, though that person eventually deleted their review. I wouldn't be surprised if most of the other more vacuous reviews are also from her colleagues or students, etc.

 

[Indigophoton]

What's weird about that Amazon situation is that the other reviewers have explained over and over why they're angry and have pointed out the IOM report evidence and so on and yet these 5* people are utterly, utterly deaf to it all. It's as though they can't read, and yet they apparently have read a whole book.

It's just bizarre.

It's the won't look through the telescope problem:

In a letter toKepler of August 1610, Galileo complained that some of the philosophers who opposed his discoveries had refused even to look through a telescope:

"My dear Kepler, I wish that we might laugh at the remarkable stupidity of the common herd. What do you have to say about the principal philosophers of this academy who are filled with the stubbornness of an asp and do not want to look at either the planets, the moon or the telescope, even though I have freely and deliberately offered them the opportunity a thousand times? Truly, just as the asp stops its ears, so do these philosophers shut their eyes to the light of truth".

'Course, the evidence won in the end

 

[Aurator]

Apologies if someone has linked to this already, but here is a Daily Mail article about O'Sullivan's new book:
http://www.dailymail.co.uk/home/you...intriguing-truth-psychosomatic-disorders.html
Prudently, they appear to have left ME/CFS out of the discussion.
Edit: O'Sullivan does refer somewhat equivocally to "chronic fatigue" (note no capitals).

 

[Snow Leopard]

One thing that does amaze me about people who complain, as they frequently do, of the collective venom, or intolerance, or whatever, shown by PWME in particular, and rarely if ever by people with other putatively psychosomatic conditions, is that they never earnestly ask themselves quite why things are this way.

Some people are either incapable of seeing the world from more than one perspective, or they have an attitude that their view is always right and therefore it would be a waste of time to actually listen to what others have to say.

Sadly all too common.

 

[Kathevans]

I'm sure those of us with the energy to engage such notions have numerous imaginary letters we are composing--of the sort American President Harry Truman actually wrote to world leaders who had him feeling as if he was pounding his head against a wall--letters of the sort that began, "Dear Mush for Brains." Once written, he'd file them away. Apparently Lincoln and Churchill wrote such letters as well, but Truman's were collected in, "Strictly Personal and Confidential: the Letters Harry Truman Never Mailed."

As to doctors, my former gastroenterologist is one such, as is my newest rheumatologist who said, "Well, you don't have fibromyalgia, but if Don Goldenberg said you do, then maybe on some days you do. But you do have arthritis." And then wrote out prescriptions for pain-killers and a muscle-relaxer.

My letter to him begins, "I hope you never have a problem that requires anything more than a bandaid."

Sheesh!

 

[Wildcat]

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Suzanne O'Sullivan is plugging her book at the summer Literature Festivals:

https://www.edbookfest.co.uk/the-festival/whats-on/suzanne-o-sullivan

Edinburgh International Book Festival

Suzanne O'Sullivan
How to Feel Better Within

Feeling physically ill when the real problem is emotional is a genuine woe for many people: up to a third of those who visit a GP may have a psychosomatic illness. Consultant neurologist Dr Suzanne O’Sullivan has written many case studies on this topic and in It's All in Your Head she encourages us to look deep inside to ease our own pains. Chaired by Ruth Wishart.

Part of our Staying Well series of events.

This event is currently sold out. Please check for returns nearer the time.
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Another presenter at the Edinburgh Lit festival is the ubiquitous Lord Richard Layard, LSE Economist and the government 'Happiness Czar', who is a driving force in promoting CBT as universal panacea and UK national policy. A decade ago Layard proposed CBT as a cure for UK unemployment.

Richard Layard at the UN, in company of 'the happiest man in the world' Tibetan Buddhist monk Mattheiu Ricard, whose book Layard wrote the introduction for, and the inventor of Positive Psychology (and advisor to the military) Martin Seligman:




United Nations — Creating a New Economic Paradigm Based on Happiness and Well-being — 1
Published on May 12, 2012

April 2, 2012, United Nations, New York City
High Level Meeting at the initiative of Bhutan :
Happiness & Well-being Panel-1

Participants:
• Helen Clark, Former Prime Minister of New Zealand, moderator
• Ven. Matthieu Ricard, Shechen Monastery, Nepal
• Pr. Martin Seligman, Founder of Positive Psychology
• Dasho Karma Ura, President of the Center for Bhutan Studies
• Dasho Karma Tshiteem, Secretary Gross National Happiness Commission, Bhutan
• Pr. John Helliwell, Professor Emeritus of Economics at the University of British Columbia
• Lord Richard Layard, Emeritus Professor of Economics, London School of Economics

http://www.matthieuricard.org/.../united-nations-creating...

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[Wildcat]

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The Hay Book Festival

It’s All in Your Head: True Stories of Imaginary Illness
Event 330 • Saturday 30 May 2015, 10am • Venue: Llwyfan Cymru - Wales Stage

A third of men and women visiting their GP have symptoms that are medically unexplained. In most, an emotional root is suspected and yet, when it comes to a diagnosis, this is the very last thing we want to hear, and the last thing doctors want to say. The consultant neurologist takes us on a journey through the very real world of psychosomatic illness.

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[Wildcat]

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The Telegraph Ways With Words Festival of Words and Ideas at Dartington Hall »
A vibrant and joyful 10-day event, a chance for those who read books to meet those who write them. The setting is glorious, the atmosphere is invigorating. People come together in spectacular surroundings to share the pleasure and power of language and ideas.


It's All in Your Head


Event Description
Few of us are fully aware of how dramatic our body’s reactions to emotions can be. Consultant neurologist Dr Suzanne O’Sullivan looks at the world of psychosomatic illness as she encourages an exploration of the intimate connection between mind and body.

https://www.wayswithwords.co.uk/fes...gton-hall-24/events/its-all-in-your-head-1556
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[nasim marie jafry]

This what we're up against, just saw this on Amazon: title of review: 'Don't believe the ME sufferer hate campaign'

http://www.amazon.co.uk/review/R31Q56MFNOMG9L/ref=cm_cr_rdp_perm?ie=UTF8&ASIN=B00T5H3Y2K

So very insulting.

 

[Wildcat]

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The whole thing stinks.

 

[Kyla]

This what we're up against, just saw this on Amazon: title of review: 'Don't believe the ME sufferer hate campaign'

http://www.amazon.co.uk/review/R31Q56MFNOMG9L/ref=cm_cr_rdp_perm?ie=UTF8&ASIN=B00T5H3Y2K

So very insulting.

Sheesh.
Perhaps some quotes from here would be effective:
http://www.diagnosticrights.org

• Nearly half of all patients with autoimmune disease experience denial of care before accurate diagnosis, an appalling 22 million patients.

• Because doctors continue to believe somatoform disorders affect mostly women, women are 7 times more likely than men to be mistakenly sent home from the ER in the midst of a heart attack, in the under 55 age group. Once sent home they are twice as likely to die.

• Most rare disease patients spend an average of 7 years in search of diagnosis, and during those years most mistakenly match criteria for SD to a tee. There are 30 million rare disease patients in the US coping with this problem. They outnumber cancer patients by 2 to 1.

 

[Snow Leopard]

With respect to those who commented, posted reviews, there is such a thing as too much. When too many people do the same thing it looks like an organised campaign and people are more likely to become more skeptical, than if just a few people write high quality comments/reviews.

 

[Wildcat]

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"When too many people do the same thing it looks like an organised campaign"

I profoundly disagree.

When (for example) the BBC (or other TV channels) receive a large number of complaints about program content, the Beeb (other TV channels etc) notes the number of complaints, and if enough people complain about program content it's reported in the press that X number of people complained about Y program. No one suggests that only a small number of people should complain lest the complaints be dismissed as an organised campaign.

Do we have to self censor in that way? I don't think so. We are silenced left right and centre. Comments sections of newspapers and in this instance Amazon, are the few public outlets we have for getting the facts about ME into the public sphere.

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[nasim marie jafry]

I respectfully & profoundly disagree with @Snow Leopard too! Totally agree with @Wildcat. Dr O'Sullivan's assertions in her ME chapter are unforgiveable, especially given that this is 2015. The UK is a small country, she is doing the literary tour, popping up everywhere with her book this summer - readers are unfortunately going to be gullible. On Amazon, threads are easily buried, so it is okay, as far as I am concerned, to engage with new reviews and put up some decent research. O'Sullivan has failed spectacularly to educate her readers, so it is left to pwME to do so. The good thing is I don't see many medics on social media praising the ME chapter, whereas five or ten years ago she would no doubt have been revered. Nonsense is no longer tenable in ME world, science is finally being funded and catching up - thank goodness.

 

[TiredSam]

I don't think an "organised campaign" is anything to be ashamed of, it's what advocacy groups do, often for very good reasons. With the encouraging recent advances in scientific research surely we can now stand up and offer a contrary opinion based on fact when a psychobabbler starts spreading harmful mis-information about our illness. If we then get labelled as a "venemous smear campaigner" or whatever petty insults are thrown at us, well we're used to that, it just shows up the name-caller as not having much to offer in response to the growing body of scientific evidence we can now present.

I've put a thumbs down against every review I found unhelpful, and a thumbs up against every review that I approved of. Hopefully when an impartial potential customer who doesn't know what to make of it all sees that a typical psychobabbler's review has ten thumbs down for one thumbs up, they might ask themselves why that could be. I don't see why they should automatically accept the "hate smear campaign" explanation, they are at least as likely to be impressed by the well-expressed and more objective science/reality based reviews that have ten thumbs up for every one thumb down.

I'm not bothered about being one of a crowd of people doing that. After all, there are a lot of us. Many have had years of having to be embarrassed to mention their illness for fear of being bullied or worse. No reason why we should put up with that situation indefinitely, especially now that we have ever more scientific evidence to refute the nonsense that gets put about about our illness - nonsense that these days can and must be challenged wherever it arises.

 

[nasim marie jafry]

And here we have a consultant neuropsychiatrist finding the book very helpful:

http://www.amazon.co.uk/review/R2LBEQACJXG1Y1/ref=cm_cr_pr_perm?ie=UTF8&ASIN=0701189266

 

[Snowdrop]

Is there anyone here who has the energy to draft a letter to Hay Publishing telling them of our concerns with regards to this book? Maybe worded in a way that hints at the possibility of future class action litigation against pyschobabblers. And includes Kyla's excellent point (post 254).