Book published this week in UK referring to ME as psychosomatic

[nasim marie jafry]

This reviewer being rude about Countess of Mar on Amazon/O'Sullivan thread. Also accused me of plugging my novel, which is *so* damn unfair, it is natural I mention my novel, eventually, it is inextricably tied to my experience of ME, and I only mentioned it when no one on Amazon reviews was listening to us. Also accuses pwME of being vitriolic. Same old same old. Great if anyone feels countering him - he suggests Countess of Mar doesn't understand science papers. I need to get away from it all now and sleep.

http://www.amazon.co.uk/review/R2GJSS2GFEZXOT/ref=cm_cr_rdp_perm?ie=UTF8&ASIN=B00T5H3Y2K

 

[eafw]

This reviewer

The controvsy is in the one chapter on ME, which, as might be expected, has provoked an avalanche of hostile, some even vitriolic, reviews, with very many comments from a single individual, herself a sufferer for 30 years, (who also takes the misguided opportunity on several occasions to plug her novel about someone with ME).

There is some classic ignorance and double standards on display here. Add in exaggeration (an avalanche ?), the "look at the out-of-control nutters" language (hostile, vitriolic) - none of which is backed up with any quotes or references. He can assert whatever he wants and that's supposed to be that.

The bit about Nasim plugging her book is particularly risible in the context of, shall we say, the "avalanche" of publicity that O'Sullivan has had - book festival, radio, articles, and reviews in all the mainstream papers and a few journals besides.

... The negative reviewers do not help their case by sweeping statements

Remarkable set of blinkers he has - the sweeping statements are not being made by people who have suffered and experienced this illness, and hence actually know what they are talking about !

... I have observed a psychosomatic illness

and this just made me laugh. He has observed a psychosomatic illness (so is now the world's second best expert after O'Sullivan then).

Nasim, I'm sorry they are getting you down, they do not want to listen to reason but hopefully some others may be reading but not commenting, they might take some of it on board and learn something useful from the exchange.

 

[nasim marie jafry]

Thanks, eawf - It did get to me, I guess for many reasons, just so unfair, like I am only there to plug my book, when it is clear I am on there fighting for truth. Also, I was often very ill writing the book and it took me eight years... And I will damn well mention it as an alternative educational narrative to O'Sullivan's harmful narrative. I am fighting her words with my words. I think that is allowed. This reviewer's main thing though he is just not listening to what any of us are saying, it disgusts me, the cruel nonchalance, and the arrogance that he knows better.

 

[Ysabelle-S]

Thanks, eawf - It did get to me, I guess for many reasons, just so unfair, like I am only there to plug my book, when it is clear I am on there fighting for truth. Also, I was often very ill writing the book and it took me eight years... And I will damn well mention it as an alternative educational narrative to O'Sullivan's harmful narrative. I am fighting her words with my words. I think that is allowed. This reviewer's main thing though he is just not listening to what any of us are saying, it disgusts me, the cruel nonchalance, and the arrogance that he knows better.

Hello Nasim, I saw that review today. His remarks about the Countess of Mar not being able to understand the research she was referring to, and probably not likely to have read it, was a low blow. Does he think she's an idiot? Actually, he dismisses her as an ME sufferer, so I suspect he just googled her name and thought he'd found a reason to ignore her letter.

I think overall he assumes that anyone associated with ME, including the ME Association, have prejudiced views which can be downgraded. One of the problems with the psychosomatic label is it allows people to dismiss those labelled in this way and effectively privileges their own opinions (regardless of whether they have any knowledge) over those being talked about. His comments about you were downright rude and I think also meant to dissuade you from contradicting him, or attempting to neutralise the relevance of your opinion if you did comment. Yet nowhere did he offer evidence to back himself up. I notice that he took one of the reviewers who had some expert background in ME, and took a line out of their review, which devoid of its proper context was made to look like some vague sweeping claim by sufferers.

I had to laugh at the end when he said he'd observed a psychosomatic illness. I doubt he knows the issues even with the CFS versus ME labels.

Anyway, your posts were perfectly reasonable to me.

I've been reading this forum for years, but never bothered posting in the past.

 

[nasim marie jafry]

Ysabelle, Thanks for this, you are eloquent! I feel now am just going round in circles saying same old stuff...but I cannot allow myself to be spoken to the way he spoke to me, how dare he. They just don't get that their insults just rain down and rain down and we are already bruised from years of ignorance... in fact I might just add in your comment about privilege to my Amazon if that is okay, I like that...

 

[Sasha]

Ysabelle, Thanks for this, you are eloquent! I feel now am just going round in circles saying same old stuff...but I cannot allow myself to be spoken to the way he spoke to me, how dare he. They just don't get that their insults just rain down and rain down and we are already bruised from years of ignorance... in fact I might just add in your comment about privilege to my Amazon if that is okay, I like that...

I wouldn't wear yourself out on this, Nasim!

 

[Wildcat]

Thank you for all your reviews on that, Nasim. The concrete wall of denialism when faced with evidence is weird but familiar.

 

[Wildcat]

The fascination with the idea that other people's diseases are psychosomatic is creepy. The word 'enthralling' was used to describe the book. More like 'Tittilating' from the responces to it on amazon and elsewhere.

 

[Wildcat]

Hmmm, when faced with objective evidence, and a list of respected researchers and doctors and professors of medicine who state that ME is an organic disease,...... one reviewer claims that they are too open minded to read the evidence and are tired with it. Sheesh.

 

[Effi]

but I cannot allow myself to be spoken to the way he spoke to me, how dare he. They just don't get that their insults just rain down and rain down and we are already bruised from years of ignorance

@nasim marie jafry We know the truth and the truth will come out eventually. That thought helps me sometimes to just let these nonsense comments go. These people are not worth our precious energy.

 

[nasim marie jafry]

Dearie, dearie me, said reviewer has now responded to further very reasonable commentary by others with this:

'I can see that this review is just going to generate a host of hostile comments from people with fixed and unalterable views about ME. I have an open mind on the subject, but I don't have time to enter into a long and fruitless debate, so later today I will delete my review and leave it to others. Good luck!'

So, basically we have all wasted energy composing a response if he now deletes his review. These people are like cattle branders, they want to herd us all into a pen and brand us PSYCHOSOMATIC - and when we resist, they just say, Look how hostile those crazy somatisers are.

Beggars belief.

 

[Effi]

"I have an open mind on the subject, but I don't have time to enter into a long and fruitless debate, so later today I will delete my review and leave it to others."

thank you! goodbye now! you will not be missed

 

[user9876]

Dearie, dearie me, said reviewer has now responded to further very reasonable commentary by others with this:

'I can see that this review is just going to generate a host of hostile comments from people with fixed and unalterable views about ME. I have an open mind on the subject, but I don't have time to enter into a long and fruitless debate, so later today I will delete my review and leave it to others. Good luck!'

So, basically we have all wasted energy composing a response if he now deletes his review. These people are like cattle branders, they want to herd us all into a pen and brand us PSYCHOSOMATIC - and when we resist, they just say, Look how hostile those crazy somatisers are.

Beggars belief.

Its a device used to dismiss people and an excuse for the reviewer not to open up his or her mind to think more carefully.

I think it reflects a problem that we have with the UK medical community and who have lead with a line of 'ME patients are irrational and are challenging our views because they don't want a mental illness label'. Journalists seem to also have bought into this view and it is giving them the excuse to no give a balanced view and it leads to them giving those such as O'Sullivan a very easy time. I think is has been a worked out tactic coming form certain groups so that they don't have to answer questions there was an SMC report which suggests this. Also it is a tactic that White uses when continuing to suppress and spin PACE data and unfortunately for us the ICO has also bought the line.

I think it does backfire on them since it means they are feeling invulnerable and not even asking themselves basic sanity questions around their work. Hence the recovery criteria for PACE. I think in other countries other doctors are realizing. I think the IoM report was quite significant there. But it will take a while and probably several significant breakthrough to drag the UK medical community out of its default position. Even then I suspect some will never change and dismiss patients who challenge them as irrational.

 

[rosamary]

I laughed when I read the word 'hostile' in Brian's comment. (He's been reading too much simon Wessely gets picked on stuff from 2011 during the concerted effort via the science media centre to carry out a coup d'état on patients and carers of people with ME who DARED to politely or more forcefully disagree with the big wes gang).



Now, were there ever any books published which stated that MS was psychosomatic ? Or have they all quietly been destroyed?

 

[chipmunk1]

... I have observed a psychosomatic illness

and this just made me laugh. He has observed a psychosomatic illness (so is now the world's second best expert after O'Sullivan then).

How can you observe something that doesn't exist and that can not be observed directly?

You would have to hallucinate to do that?

Perhaps see a psychiatrist?

 

[nasim marie jafry]

One has to wonder why Brian is deleting his review, where is courage of his convictions?

 

[Ysabelle-S]

Ysabelle, Thanks for this, you are eloquent! I feel now am just going round in circles saying same old stuff...but I cannot allow myself to be spoken to the way he spoke to me, how dare he. They just don't get that their insults just rain down and rain down and we are already bruised from years of ignorance... in fact I might just add in your comment about privilege to my Amazon if that is okay, I like that...

Well, he is throwing in the towel easily. His last post is classic projection. If he had more self awareness he would realise that the fixed and unalterable views are entirely his own since he has taken nothing on board from the other posters. But his review boded ill anyway given the way he attempted to undermine ME sufferers and their experience and knowledge right there.

 

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

One has to wonder why Brian is deleting his review, where is courage of his convictions?

Maybe you should copy and paste all of your responses to Brian just in case he deletes, then re-submits... That way he doesn't get to 'shake off' all of your responses with a fresh review.

 

[Snow Leopard]

It is pretty clear, with this strong media campaign, along with the deliberately stigmatising title of the book that this was all intended to stir up false controversy. 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.

 

[jimells]

One has to wonder why Brian is deleting his review, where is courage of his convictions?

There are now boatloads of people on the internet who get paid to write bad reviews, ugly comments, and otherwise cause trouble. It's the internet equivalent of the time-tested practice of cops infiltrating protest groups just to sow discord. "Brian" could be one of these paid trolls. Or maybe just a bored loudmouth.