Esther12
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Live by the anecdote, die by the anecdote.
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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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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".
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.
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.
@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.
The MEA in Britain always comes across as defensive rather than setting the agenda
Say what?5 stars: 'A pioneering introduction'
@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?
Say what?
I haven't read the book but I was under the impression that it was very much 'same old, same old'.
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.If it's in your local library, it's worth a read.
Your reaction may well be, "what was all the fuss about?"
Strangely enough, that's why I haven't bothered with it.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.
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?
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.
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?