Book published this week in UK referring to ME as psychosomatic

[eafw]

All of those people who think they are cleverer than normal by questioning such things and wanting to learn more, but not quite clever enough to actually read and understand scientific research.

It is like most of the so-called sceptics out there who will go after easy targets, to make themselves feel superior, but rarely tackle the powerful or vested establishment interests. Goldacre and Aaronovitch come to mind. None of them take on PACE for instance, where's the questioning of that ?

"Brian" could be one of these paid trolls. Or maybe just a bored loudmouth.

Probably just not used to his opinion being challenged in any way, so any disagreement or dissent is labeled as "abuse" or an "attack". Particularly when his opinion is so uninformed, he's just defending his ego rather than any tenable position.

 

[Anabel]

@nasim marie jafry - I checked up on him because the whole thing seemed so bizarre. "Brian R. Martin is emeritus professor of physics at University College London, where he was Head of the Physics Department until 2004." Why someone like that would even get involved seemed rather strange. However, that's where Suzanne O'Sullivan works - at University College London! The penny drops.

I know that you had to defend yourself, Nasim, and I'm sorry you were forced to do that, but, as far as I'm concerned, the only reason he wrote that review was to stir the pot - and it worked. He says the strangest things - psychosomatic this, somatoform that - and I missed where he went back and edited, so there was probably even stranger stuff that I didn't see. He's still threatening - for the second or third time- to remove his review (first, it was yesterday, now it's today), but he's waiting for DrEMG to come back and - yeah, I don't really know why, other than for Martin to continue to be a pain in the butt troll.

 

[Sasha]

I see there's some more crap on Amazon but there are some good, calm voices on the case and I think at this point it's best to leave it to them!

It's easy to get upset by this stuff but it's the calm and clinical that wins the day in this kind of scenario.

to everyone who's been made to feel so very by this.

 

[nasim marie jafry]

Thanks, beaker, but his professional status actually makes it worse - he is a bully. I have responded again on Amazon but not directly addressing him, I refer to him in third person, I just want others to know who he is. I feel better now and must go outside and get some sun, my vitamin D levels are probably below zero, there is rarely sun in Scotland. Am copying and pasting recent comments, charming Brian may well delete later. I will also need to learn how to quote stuff here, how do I get the pink highlighted background for quotes, when you cut and paste prev. comments? Such a newbie, as you can tell!

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Last edited by you 7 minutes ago

nasim marie jafry says:

Thanks, SN, for your kind response. Yes, I know as pwME we should protect ourselves from the harsh and unkind commentary that so often comes our way, we should simply ignore it, but I just feel this popular science book must be challenged and that is why I have been online so much trying to educate. As many of you know I seldom go on ME forums these days, so am not used to the ill will - and sheer nastiness - that is out there. But I naively thought a book review forum would be an ideal platform to educate and engage with others. The arrogance of this particular man towards me has been wholly unfounded - I wonder what is motives are, why does he feel so threatened that he has to dismiss me and frame me as irrational. It's disgusting. When I was told he was prof emeritus at UCL, the irony did not escape me that Peter Behan is prof emeritus in neurology at Glasgow Uni. I would love to see Behan discuss ME with charmer Brian. He could perhaps explain to Brian where I got 'my passion for believing my illness is physical' - to paraphrase Brian in an earlier comment.


s n copson says:

Nasim, I would personally like to thank you for all your comments and responses about this book. Please don't be hurt or disheartened by reviewers such as Brian. On leaving a shop yesterday, an old man walked towards me, clearly angry and frustrated. He very deliberately kept to his path despite bumping into me and my young step son. When I apologised (for him) he informed me that I should be sorry. I felt sad for this man. Not sure why but this thread has remained me of this encounter.

Thinking of you especially this Father's Day. And thank you again for expending precious energy on our behalf. Your book was a great support to me at my worst stages of this devastating illness.


nasim marie jafry says:

For a 75-year-old professor emeritus, Brian's behaviour is bizarrely immature - the way he nastily and thoughtlessly put myself and Countess of Mar in the firing line in his original review smacks of misogyny. And the repeated risible threats to take his review down, like it actually matters. It only means the rest of us have wasted precious energy commenting.

Still, I suspect that even although he has arrogantly dismissed everything I've said, he has actually learned some things, as there has been a marked change in his general tone about ME being psychosomatic. As I pointed out - which he of course evaded - he has edited a previous comment, after people have responded, and that is simply duplicitous.

And as someone said to me this morning, is it a coincidence that he also works at UCL? Does this explain *his* irrational defence of Dr 0'Sullivan? The physics professor may impress himself, but he has only made himself look charmless and unpleasant on this thread. And in my opinion, he has simply come across as a bully.


F. Paul Watton says:

To quote exercise physiologist Professor Keller, who wrote in January 2015:

"Given what we have learned in the past eight years about this illness, it is intellectually embarrassing to suggest that ME is a psychological illness."

I would stress that the problem with allowing ineffective "stop-gap" therapies (such as CBT & GET) to become the established norm, is that they not only gain unwarranted credibility, but that they also blunt the overall sense of an urgent need for something that actually works - particularly within medical and political circles.

Dr O'Sullivan has failed to report recent compelling scientific evidence as far as M.E/cfs is concerned and in so doing, has done a grave disservice to the patients whom she claims to be trying to help.

 

[Ysabelle-S]

Lol, I can't find the review. Has he pulled it? The one and only four star review is gone. Maybe it was the connection to the physics professor and UCL. Well done Nasim!

It really does make it look more likely that the name wasn't a coincidence. I'm very suspicious of some of the five star reviewers.

EDIT: sadly, he has been replaced by another scornful, sneering five star reviewer attacking ME patients who have commented and the one star reviewers. No scientific evidence given to back up their claims either.

 

[Hell...Hath...No...Fury..]

I reported Brian's comments as abusive on amazon Is the new scornful review, Brian in disguise? Or yet another sad pathetic croney of his.

 

[nasim marie jafry]

Yes, the nasty professor deleted his thread earlier today but I just looked and he is back as commenter on another 5 star review. I just can't and won't go back there, was traumatised enough by his words before, no wish to expose myself to his arrogance again. To be fair, the 5 star review he comments on is not at all nasty, just missing the point. AGAIN. But I bet we haven't seen the last of the nasty professor. Here he is:

http://www.amazon.co.uk/review/RU35...QLKZUPIJZYI&store=digital-text#MxY38182X3IYP1

I don't know how we educate the ineducable. I really don't. We wait for the science, I guess. And hold our heads high.

 

[alex3619]

I don't know how we educate the ineducable. I really don't. We wait for the science, I guess. And hold our heads high.

He is not the one you are educating. The others who read the reviews will not all be incapable of looking at the evidence.

If I had actually read the entire book (I don't own a copy and wont give the author royalty) I would be strongly tempted to post my review of the whole book, in which ME would only get a paragraph. The entire notion of psychogenic disease is very much like a cult, and when you oppose them the cultists come out to abuse us..

Its noteworthy the author cites philosophy rather than science. Philosophical argument gave way to science largely because reason without sound evidence can lead to many false conclusions.

 

[Anabel]

He's, clearly, obsessed with the book and the message it's sending or why would he have come back in to reply to the psychologist/philosopher Richard Gipps' comment - a comment which, yes, missed the point AGAIN.

You can't educate someone who has absolutely no interest in being educated, Nasim, and Brian Martin does not want to be educated. His mind is slammed shut and locked and he has the utter gall to say that we have fixed minds. Look in the mirror, guy. Narcissism (which seems to run rampant among so many of the U.K. psychs - I know he isn't one), arrogance, call it what you will, he is right and that's the way it is - everyone who doesn't agree with him is wrong. There's no getting through to someone like that.

This part of Martin's reply to Gipps sounds very familiar. "Stand by to be deluged with such comments, that will become increasingly strident, and even sometimes abusive. My mistake was to encourage them by replying."

What's the favourite word of these people when we disagree with them? We're "abusive" - and there it is. I can't remember all of the comments but I don't recall any which I would refer to as 'abusive', except for some of his.

 

[Ysabelle-S]

There's a really ugly undertone to the patronising psychosomatic illness believers. There are those who have vested interests in this dubious field. But I think people who are not ill also derive something from this belief. It allows them to talk over others, to silence them. It creates a hierarchy of opinions, where some are considered less valid and even deprived of any voice, yet those at the top are the very people least knowledgeable about the illness. It's a system of belief designed to silence, poke and prod, and disempower the patients, but this can also lead to abusive personal relationships in families and other parts of society. It feeds into the current and disturbing narrative on disability in the UK. I'm not surprised the UK/London media have been all over this book, promoting it. I also wonder how much the media, which has been in bed with the psychiatrists on ME, are just as keen to defend themselves from the scientific research as they are to defend their quack friends.

 

[nasim marie jafry]

Ysabelle, I find it so chilling the way they - not just the psychs, but 'neutral' bystanders like the Amazon reviewers - just don't listen to what we are saying. They refuse to listen, as if they are on a higher plane and our voices are irrelevant. There is an ugly undertone, as you say.

 

[Ysabelle-S]

Ysabelle, I find it so chilling the way they - not just the psychs, but 'neutral' bystanders like the Amazon reviewers - just don't listen to what we are saying. They refuse to listen, as if they are on a higher plane and our voices are irrelevant. There is an ugly undertone, as you say.

I think it shows one of the reasons why so many like the idea of psychosomatic illnesses. It fosters patronising beliefs towards the vulnerable, encourages misogynistic patterns of behaviour (in women too), and allows people to think they can somehow diagnose others and then dismiss them. It is the perfect belief system for the current ugly climate. But I do wonder if some of the five star reviewers are more than just ordinary readers. There's something distinctly odd about their complete lack of interest in scientific research. They might as well stick their fingers in their ears and sing 'La-la-la, we're not listening." I have found most people I come across to be far more sympathetic and inclined to see ME as a real illness, and that includes pretty much all my GPs over the past 30 years. I think some of these reviews are not what they seem. I'm particularly taken by the number of people who insist the author is nice and compassionate. It's a repeated theme, recycled over and over.

 

[Aurator]

But I do wonder if some of the five star reviewers are more than just ordinary readers. There's something distinctly odd about their complete lack of interest in scientific research.

Well, if a reviewer happened to have a professional interest in the psychiatric side of things, it might explain the bias. Richard Gipps, author of the latest favourable review, is, by his own admission (in another review he's written), a clinical psychologist.

 

[Ysabelle-S]

Well, if a reviewer happened to have a professional interest in the psychiatric side of things, it might explain the bias. Richard Gipps, author of the latest favourable review, is, by his own admission (in another review he's written), a clinical psychologist.

That review was awful, and touted some very disturbing theories in the book about people benefiting from illness. He also doesn't know how to write coherently, or use paragraphing which helps to frame ideas and make longer blocks of text more readable. It's like he wrote it in a burst or something. Oddly unprofessional style of writing.

 

[SOC]

I'm particularly taken by the number of people who insist the author is nice and compassionate. It's a repeated theme, recycled over and over.

On what are they basing their knowledge of her compassionate nature? Do they know her personally? Are they her friends? If so, then their positive comments lack objectivity and are unfairly biasing the reviews.

Or are they imagining a compassionate nature based on reading her book, in which case they know nothing about her true nature, only their interpretation of her written ideas. If you agree with her perspective, you can perceive it as caring (hah!), but if you find her condescension and willingness to put her personal philosophy above scientific evidence offensive, then there appears nothing compassionate about it.

So far the positive reviews appear to me to have personal bias unrelated to the actual validity of the ideas espoused in the book. The positive reviewers appear to be either her university colleagues, possibly her friends, and psychotherapists invested in the continuation of the psychosomatic psychobabble.

While it's important to present clear scientific evidence that rejects her belief system for the edification of other readers, there isn't much point in trying to argue with ugly or deliberately ignorant commentators. They are effectively trolls and it's not hard for any thinking person to see their hatefulness.

We don't need to stoop to arguing with them and perpetuating unfair myths of hostile ME patients. Present the science and walk away. Sensible people will see who is calmly looking at the facts and who is nasty and bigoted. People with no sense are not going to be convinced no matter what we say. For them it's a matter of waiting until the sensible people come around to our side. Then the nasties will (for the most part) shut up because they won't want to be (publicly, at least) part of the ignorant minority.

 

[Ysabelle-S]

On what are they basing their knowledge of her compassionate nature? Do they know her personally? Are they her friends? If so, then their positive comments lack objectivity and are unfairly biasing the reviews.

Or are they imagining a compassionate nature based on reading her book, in which case they know nothing about her true nature, only their interpretation of her written ideas. If you agree with her perspective, you can perceive it as caring (hah!), but if you find her condescension and willingness to put her personal philosophy above scientific evidence offensive, then there appears nothing compassionate about it.

So far the positive reviews appear to me to have personal bias unrelated to the actual validity of the ideas espoused in the book. The positive reviewers appear to be either her university colleagues, possibly her friends, and psychotherapists invested in the continuation of the psychosomatic psychobabble.

While it's important to present clear scientific evidence that rejects her belief system for the edification of other readers, there isn't much point in trying to argue with ugly or deliberately ignorant commentators. They are effectively trolls and it's not hard for any thinking person to see their hatefulness.

We don't need to stoop to arguing with them and perpetuating unfair myths of hostile ME patients. Present the science and walk away. Sensible people will see who is calmly looking at the facts and who is nasty and bigoted. People with no sense are not going to be convinced no matter what we say. For them it's a matter of waiting until the sensible people come around to our side. Then the nasties will (for the most part) shut up because they won't want to be (publicly, at least) part of the ignorant minority.

Well said. I do think at least some of them are basing their interpretation of her character on how she portrays herself in the book, which of course is faulty because none of us can give a true objective picture of ourselves. I didn't particularly like the author's tone in the section of the book I read. But I do suspect some reviewers know her personally, or are connected to the selling of the book (some of the glowing but brief blurb like reviews made me wonder about that since they consistently dodged the subject of ME).

There are so many references to research (with links) among the low star reviewers that it's simply not possible for a more objective person to go through them all and reject them as simply irrational or biased or written by people in denial.

I suspect a few people will have quietly read the reviews and left knowing rather more about ME research than they did before.

 

[Aurator]

It seems Richard Gipps has quite an interest in ME/CFS.

Quite how he can have spent so much time researching the topic and philosophizing about it and yet so woefully have failed to grasp what so many of his school have failed to grasp - that PWME do NOT typically ever assert that psychiatric illnesses are not real - is beyond me.

 

[Ysabelle-S]

It seems Richard Gipps has quite an interest in ME/CFS.

Quite how he can have spent so much time researching the topic and philosophizing about it and yet so woefully have failed to grasp what so many of his school have failed to grasp - that PWME do NOT typically ever assert that psychiatric illnesses are not real - is beyond me.

That explains a lot.

I do wonder how many people in psychiatry and psychology would have their career paths hit by ME and other similar illnesses having proof of organic cause. Would there still be enough work to go round? Many of us have no contact with them to start with. Having said that, it can be difficult for people to access psychiatric help at times during acute periods because they're left on a waiting list. Some tragic cases of suicide and other events have occurred as a consequence. Clearing out organic conditions that psychiatry and psychology cannot treat ought to be a good thing, allowing these therapists to focus on more relevant cases, but they seem to find it hard to let go. Hard to accept perhaps that one's life work may be a pile of mince.

 

[Aurator]

but they seem to find it hard to let go.

Yes, especially when the prevailing circumstances make it so easy for them to hang on.

Hard to accept perhaps that one's life work may be a pile of mince.

My thoughts entirely. The salary probably has a consoling influence on their disappointment.

 

[SOC]

It seems Richard Gipps has quite an interest in ME/CFS.

Quite how he can have spent so much time researching the topic and philosophizing about it and yet so woefully have failed to grasp what so many of his school have failed to grasp - that PWME do NOT typically ever assert that psychiatric illnesses are not real - is beyond me.

Yes, funny how he can claim to know what PWME believe and assert when all he knows about us is what he's read in undisclosed sources. Clearly he hasn't read anything here at PR or talked to a significant number of PWME, or he would know that we do not deny psychiatric illnesses are real, we assert that ME/CFS is not a psychiatric illness. Big difference, but one he apparently doesn't have the intellect to understand.

He's using hearsay evidence ("ME/CFS patients say, .....") and claiming those are our opinions. Very, very poor critical thinking. Irresponsible writing. If he had any integrity, he's listen to many PWME, and ask us some intelligent questions before he claimed to know what we think. Ass.

Does anyone know where this lazy-minded, irresponsible, low professional integrity individual lives and works?
ETA: Nevermind. University of Oxford Really, they need to do a better job of vetting their faculty for fundamental thinking skills... or at least require some basic classes in critical thinking for them since it obviously wasn't a part of their academic training. Surely this kind of inferior logic and poor basic research and investigatory skills among their faculty has got to be getting embarrassing.