S. Wessely - Death threats, abuse, smear campaigns - Standing up for Science: 29 March

[trishrhymes]

If i remember rightly from Jen Brea's Ted talk, a psychiatrist said she clearly had a physical illness, whereas a neurologist told her she had Conversion disorder. There are clearly good and bad in both groups.

 

[arewenearlythereyet]

Neurologists can be quite bad too. There are several psychosomatic ones involved with the current NIH post-infectious ME study, for example. And most of us have had very bad personal experiences with neurologists, if we've been unlucky enough to see one.

I do agree that neurologists tend to have a better reputation that psychiatrists, but I don't think the better reputation is usually warranted.

I couldn't agree more. I've been seeing neurologists since a child.....so far they haven't been up to much and seem to sit in a little world of their own where patient care is secondary to their egos. Having had quite a few EEG's ....Frankenstein springs to mind ......they don't know an awful lot I'm afraid.

 

[JoanDublin]

Neurologists can be quite bad too. There are several psychosomatic ones involved with the current NIH post-infectious ME study, for example. And most of us have had very bad personal experiences with neurologists, if we've been unlucky enough to see one.

I do agree that neurologists tend to have a better reputation that psychiatrists, but I don't think the better reputation is usually warranted.

Seems to be a global phenomenon. I remember many years ago carrying out a population survey for people with MS in a particular region in Ireland and to a person each one interviewed said they had bad experiences of neurologists ranging from downright ignorant and rude to incompetence. What a world, eh?

 

[Barry53]

Looks like I need to swat up a bit more on neurologists.

 

[Cinders66]

Sad thing about this is, i, like most in the community, have been desperate for scientific research into this illness for decades. I'm sure I'm not alone in those who got ill before the internet , scouring the magazines that came every few months in hope that that year they'd been some sign that research was happening and things might start to get explained and treatment found. I've also given the little bits of money I can scrape out of benefits to help get various floundering fledging research projects off the ground. Up until recently, Especially for severe ME, the past decades, in terms of amount of scientific endeavour and also in scientific advancements, have been profoundly disappointing. Yet SW and this conference will I'm sure once again try to present pwME as a) irrationally anti psychiatry ( I just don't see what psychiatry has got to do with ME aside from a secondary supportive role) &b) prejudice against behavioural interventions which could help us C) anti science. And all whilst their own assumption based psychological narrative has misled the medical profession about the nature and needs of this illness, and all whilst their own contribution has been poor in outcome and poor in science.

People have been house and bedridden for decades and yet SW won't mention therm or their legitimate grievance, he will just reinforce what an unpleasant field this is to work in and how hard done by he's been by this community who aren't duly grateful for the effective treatment he's developed for us :-(. And strike off the interest and compassion of a few more Drs in the land.

 

[Invisible Woman]

Seems to be a global phenomenon. I remember many years ago carrying out a population survey for people with MS in a particular region in Ireland and to a person each one interviewed said they had bad experiences of neurologists ranging from downright ignorant and rude to incompetence. What a world, eh?

Yeah it's not always just their ME patients....

I was referred to one neuro - he was quite possibly the most obnoxious creature I have ever met. He was 10 minutes late for a private 30 min appointment -no apology and then tried to shoo me out the door precisely when the time was up. He was patronizing, talked over me and had clearly already decided what his opinion and diagnosis was going to be before setting eyes on me. We ended up nose to nose shouting at each other. Well, he started shouting and trying to bully me and I wasn't taking it from such a toad.

Anyway. A few years go by and my neighbour's husband has the most horrible experience with an NHS neurologist. The man has a debilitating and progressive neuro disorder. She described their appointment during which the neurologist accused this guy, who was in his 50's and had worked hard providing for his family all his life, of just looking for a benefits handout. Even though there was no question that his diagnosis was correct and that he was unfit for work.

I jokingly said "Oh, it wasn't Dr X, was it?" Indeed it was.

 

[SamanthaJ]

People have been house and bedridden for decades and yet SW won't mention therm or their legitimate grievance, he will just reinforce what an unpleasant field this is to work in and how hard done by he's been by this community who aren't duly grateful for the effective treatment he's developed for us :-(. And strike off the interest and compassion of a few more Drs in the land.

I suspect that without the 'militant patient' narrative, SW's research would festering in some dirty, shameful corner of psychiatry (i.e. where it belongs). If he and his cronies didn't keep on about his courage in the face of the most violent patients in the country, at best his research would be regarded as unimportant, if not ridiculous. As it is, people seem to be under the impression that he's in as much danger as if he was working at Broadmoor, and aren't keen to question the work of such a noble, heroic man. But one day (hopefully very soon) his stories of being terrorised by chronically ill people will look pretty silly to everyone.

 

[Barry53]

People have been house and bedridden for decades and yet SW won't mention therm or their legitimate grievance, he will just reinforce what an unpleasant field this is to work in and how hard done by he's been by this community who aren't duly grateful for the effective treatment he's developed for us :-(. And strike off the interest and compassion of a few more Drs in the land.

With a bit of luck someone will ask him about the PACE expose that is now underway.

 

[char47]

This is worth a read.

https://www.madinamerica.com/2016/03/psychiatry-bashing/

Well that was a most amusing read, thanks for the link

However the further through the article i got, the more uncomfortable i got. This campaign SW's running is sinister iyam. It's an extension of the whole 'discredit your critics before they criticize you' tactic. Painting crits of psychiatry/psych research as being akin to racism is grotesque, but if he can make it un-PC to call out poor psych practice/research, then he will become all the more untouchable.
It's easy to laugh at the 'poor little lambs' - which is always my internal response to SW's weeping about 'threats', BUT.... he has successfully painted himself as the victim already, & is now trying to turn all genuine & reasonable challenge to psychiatry/psychology methods & practice into a form bullying. If the powerful successfully paint themselves as the vulnerable, then the truly vulnerable are screwed. It's sinister.
Anyone who's ever been a victim of bullying will know the phenomenon of when you finally snap & turn round & say NO!!!, the bully then runs off to tell teacher & victim is punished & shamed as being the bully, when in reality they were simply defending themselves. This campaign asaics is a stepping up of his "telling teacher" tactics.

I mean really, the truly strong, the truly intellectually brilliant, the valuable & robust theories, the truth itself, can all take criticism. It can take a bit of ribbing, it can even stand up ok to a bit of 'abuse' (although i obviously dont condone abuse). But I mean really, is the whole of the psychiatric profession, are SW & his colleagues, so fragile, so weak that they need to be painted as heroic for simply doing their jobs? Are their theories so shaky that they need protection? How unbelievably tragic. Try living with severe ME for a few months, let alone a few decades, & you'll soon discover what actual heroism looks like.

 

[BruceInOz]

Anyone who's ever been a victim of bullying will know the phenomenon of when you finally snap & turn round & say NO!!!, the bully then runs off to tell teacher & victim is punished & shamed as being the bully, when in reality they were simply defending themselves. This campaign asaics is a stepping up of his "telling teacher" tactics.

I just watched a two part series on bullying in school on ABC tv (Australia) with the swimmer Ian Thorpe. They successfully intervened in two cases not by confronting the bully but by making a sizeable group of the victim's peers aware of just how much the victim was being bullied and the horrific impact that had on their lives. That then created a support group for the victim that were prepared to stand with them when they saw bullying happening.

I think a similar process may help us and has already begun with David Tuller, Alem Matthees and the many others that have contributed to expose PACE for the pile of crap that it is. Now there are journal articles testifying to this, more people in the medical and research fields may begin to see we have been the victims of bullies and hopefully will be prepared to support us. A groundswell of support will eventually make the bullies irrelevant.

 

[moblet]

I'd love to attend this event but unfortunately I'll be practising my illness beliefs that day.

 

[Cheshire]

While Sense about Science Uk glorifies Wessely for standing up against patients, Sense about Science USA tweets about patients standing up against Wessely's "Thing of beauty".

https://twitter.com/i/web/status/846398366590349312

 

[trishrhymes]

Just noticed this on another thread about an article:

'Debunked: the myth that CBT and GET are effective for ME/CFS' by Mark Vink.

Mark Vink, (Family Physician). is the author of the 2016 Review of the PACE trial for which he was nominated for the John Maddox Prize for Standing up for Science.

I really wish he'd won it - just imagine Wessely swallowing that one - a fellow prize winner who has disproved and demolished his own 'work'.

 

[Mary]

I just watched a two part series on bullying in school on ABC tv (Australia) with the swimmer Ian Thorpe. They successfully intervened in two cases not by confronting the bully but by making a sizeable group of the victim's peers aware of just how much the victim was being bullied and the horrific impact that had on their lives. That then created a support group for the victim that were prepared to stand with them when they saw bullying happening.

I'm afraid when I read the first part of this, I thought you were drawing a parallel between anti-bullying tactics shown in the TV series and poor Simon Wesseley's attempts to deal with all the horrible ME/CFS bullies! (soliciting the pity of his peer group, the horrific impact on his life, etc.) (it does fit actually, doesn't it? argghhh!! )

 

[slysaint]

Anyone know if there will be any press coverage of this?
Or anyone connected to the ME community?

 

[Jan]

And why is the UK press seemingly not interested in reporting ME biomedical studies?
There has been such huge research news lately, yet nothing, apart from one BBC local news story.

As far as PACE goes, are they not interested that 100's of doctors agree with us about PACE, that the Countess of Mar is supporting us, or that thousands of patients have been made worse by these treatments?

 

[Countrygirl]

Here is the latest cutting-edge science published by a member of the PACE team ............

 

[char47]

Here is the latest cutting-edge science published by a member of the PACE team

you know when you come across old stories, posters, press articles etc from 60-100yrs ago that are so racist it makes you cringe with embarrassment for the author & horror that it was allowed, but it's also almost funny, & they're kept as museum pieces, curiosity items...
Fast forward to 2117, I'm so sorry i wont be around to see these articles find their proper place in history & society.

 

[Tilney]

"for preventing relapse after recovery" ???????????

 

[alex3619]

Who said it will take till 2117!!! I am already starting to laugh at some doctor's claims.