Brian Hughes - If you spend 20 years gaslighting your patients, perhaps you should think twice before accusing *them* of trolling *you*

[chrisb]

Malingering was never far beneath the surface. PK Thomas with whom Wessely co-authored a chapter in a book referred to simulated symptoms in a letter in 1987. That was apparently a reference to the result of electromyograms which McEvedy and Beard said could be simulated.

I think there has been a thread about that conference. It was packed with researchers from Cardiff and Sheffield universities. Presumably not medical researchers.

 

[dangermouse]

Thanks @Brian Hughes

 

[fivetowns]

But that would fall outside an effective doublespeak. The doublespeak of biopsychosocial is intended to sound impressive and knowledgeable to patients while only meaning something else to doctors. To tell patients that they are malingering wouldn't work so well. And who knows what they actually think, since they change their story to fit every situation.

I understand pwME ("cfs") have been called the undeserving sick by the PS'ers. I can't specifically recall the use of the term
"malingering"; it may have been used - to find out might take a bit of searching. Maybe someone else knows?

The title of the photograph in the article was "Malingering and Illness Deception Meeting". It wasn't Brian's choice to use the word "Malingering", it was the choice of word of the people who set up the conference.

I'm just trying to be cautious. If they've never stated explicitly that CFS is a form of malingering then technically that bit of the article is inaccurate. If this week has shown us anything it is that the BPS lot fight dirty. I could see Sharpe tweeting that one section as evidence that 'my critics have misrepresented my work' or worse he could call it libel. I don't want what is otherwise a really good retort to this week's bps media attack to lose some of its impact for what essentially is a tiny error.

 

[Jonathan Edwards]

I could see Sharpe tweeting that one section as evidence that 'my critics have misrepresented my work' or worse he could call it libel.

I think Brian Hughes is on rather safe ground here. I strongly suspect that the various people we know to have been in that photo prefer to pretend it does not exist. (I have seen it several times before in political pieces that have nothing specifically to do with ME.) Any response to Brian involves admitting they were there and trying to give a reasons why. And why certain financial interests were involved and so on.

After all, these three people by 2001 were already heavily involved in ME/CFS. Why would someone involved in ME/CFS want to go to a meeting on malingering? As somone interested in rheumatoid arthritis it never occurred to me to check out meetings on malingering. One could hardly blame Brian for getting a bit confused by this!

 

[Esther12]

Personally, I think I share some of @fivetowns concerns, and don't agree with the heavy emphasis on the psychological vs physical emphasis of the blog, which I think can end up distracting from problems with the way the PACE researchers behave.

Their theory dismisses sufferers as psychiatric patients whose condition is all in the mind, rather than persons debilitated by authentic physical illness or disease.

There are a range of approaches within the biopsychosocial model of ME/CFS, but few of them really dismiss suffers as people whose condition is "all in the mind". I also worry that some of this language can be interpreted as implying a dismissive attitude towards mental health problems - I suspect that a psychology professor will not be called up on this, but if other patients repeat similar rhetoric it could well cause problems.

Many of these patients are bed-ridden for decades, emaciated and debilitated, unable to study or work or hold down a normal family life. And yet they are told: “We do not believe you are really ill. You are malingering. And precisely because you are malingering, you now will be prevented from receiving proper treatment.“

Patients do sometimes get told this, but not by the PACE trial researchers. If anything, saying 'we definitely believe that you are really ill' is part of the slightly patronising spiel they use with patients.

I think it's better to be more cautious with the phrasing of some of these criticisms - though obviously I'm very grateful to any academic willing to speak out about the problems with the way powerful academics are hurting people with ME/CFS.

 

[Eagles]

Regarding the use of the term “malingerer”, a couple of quotes from “Magical Medicine: How To Make A Disease Disappear” by Professor Malcolm Hooper might be of interest –

http://www.margaretwilliams.me/2010/magical-medicine_hooper_feb2010.pdf

Page 84 -

On 20th October 2001 “Pulse” ran a series called “Choices for the new generation of GPs”. The approach provided by Dr Mary Church (a Principal in a practice in Blantyre, Scotland and a member of the British Medical Association medical ethics committee) was particularly contemptuous but is not untypical: “Never let patients know you think ME doesn’t exist and is a disease of malingerers. Never advise an ME patient to make a review appointment”.

Page 418 -

It was the same Dr Lo Cascio who, together with (then) Drs Simon Wessely, Michael Sharpe and Trudie Chalder, spoke at a Symposium on “CFS” entitled “Occupational Health Issues for Employers” held at the London Business School on 17th May 1995, at which attendees were informed that ME/CFS has been called “the malingerer’s excuse”. Lo Cascio spoke on “Insurance Implications”; Wessely spoke on the “The facts and the myths”; Sharpe spoke on treatment options (exercise and CBT) and Miss Chalder spoke on “Selling the treatment to the patient”.

 

[chrisb]

That photo does reveal something else of interest. Sharpe and White do at least have the decency to put themselves on the back row, well away from the centre.. Wessely is placed in prime position between Aylward and LoCascio. Strange that. Complete strangers, of course.

 

[Esther12]

I understand pwME ("cfs") have been called the undeserving sick by the PS'ers. I can't specifically recall the use of the term
"malingering"; it may have been used - to find out might take a bit of searching. Maybe someone else knows?

There was a lecture where Sharpe was saying that it was bad that certain groups of patients can be viewed as the "undeserving sick". Some people seem to have misunderstood his quote, or chosen to misrepresent it, as if he was saying ME patients should be classed as the undeserving sick.

 

[Cinders66]

http://citeseerx.ist.psu.edu/viewdoc/download?doi=10.1.1.729.2487&rep=rep1&type=pdf

Do a search for "CFS" in the above link, which appears to be a PDF of a book published in 2003. Wessely is mentioned in the list of contributors (pages 11 - 12), and so is Sharpe. So is Mansel Aylward. I'm sure there must be other (in)famous names that I'm not familiar with.

Thank you. Had a glance and it seems that the BPS model was born out of their unhelpful beliefs where the biological was seen as even minor. And even not including the PACE controversy, i don’t think that it can be argued that that way of framing our illness wasnt harmful to the ME patients need to be taken seriously with a serious illness to get proper medical treatment found.

 

[Jonathan Edwards]

I think it's better to be more cautious with the phrasing of some of these criticisms - though obviously I'm very grateful to any academic willing to speak out about the problems with the way powerful academics are hurting people with ME/CFS.

I do agree with the concerns you share with @fivetowns in principle. However, I think Brian is allowed to over-egg things a little bit here as a fellow psychologist.

He is sort of, in the bar, saying to Sharpe' You don't really have any idea what you talking about do you? You say this and mean that, or maybe you don't even know what you mean, and it's all a sham to con the patients. And if it isn't malingering could you explain to those of your colleagues who have noticed the emperor is in the altogether what the heck you were doing at a malingering conference.'

The BPS crowd have no comeback to Brian because they know he knows it's all a sham and why it is. The mind body interaction tripe works when you are with other mind body interaction tripologists but it doesn't work for hard boiled colleagues who see through the blather.

 

[rvallee]

Patients do sometimes get told this, but not by the PACE trial researchers.

But it is what they think and have written about. They take both positions and everything in between. I see no reason to ignore that fact for their benefit just because they know to lie about their intent when convenient.

It would take some heavy work to do a literature review of all their published writings to make that case strongly but it is the case they have sold privately while publicly saying muddied things that can be interpreted any which way. However someone wants to define a behavior problem in relation to illness or disease is irrelevant, the PACE ideologues see ME as a behavioral problem that can be fixed by changing attitude, for which there is no evidence.

 

[Esther12]

I do agree with the concerns you share with @fivetowns in principle. However, I think Brian is allowed to over-egg things a little bit here as a fellow psychologist.

When it comes to PACE, I don't think there's any benefit to over-egging things, especially if that could lead to other people using looser language than is useful.

But it is what they think and have written about. They take both positions and everything in between. I see no reason to ignore that fact for their benefit just because they know to lie about their intent when convenient.

It would take some heavy work to do a literature review of all their published writings to make that case strongly but it is the case they have sold privately while publicly saying muddied things that can be interpreted any which way. However someone wants to define a behavior problem in relation to illness or disease is irrelevant, the PACE ideologues see ME as a behavioral problem that can be fixed by changing attitude, for which there is no evidence.

Written about where? I'm fine with quoting and criticising whatever people have written and read, but I think that there's good reason to be cautious about putting words in other peoples' mouths.

 

[Jonathan Edwards]

“Never let patients know you think ME doesn’t exist and is a disease of malingerers. Never advise an ME patient to make a review appointment”.

I think it is also a legitimate point that even if the BPS crowd danced around the m word they would have been well aware that GPs and other colleagues were interpreting what they said that way.

I realise that maybe Gordon Waddell worked about half a mile up the road from the Oxford psychiatry unit at the Warneford.

 

[Jonathan Edwards]

When it comes to PACE, I don't think there's any benefit to over-egging things, especially if that could lead to other people using looser language than is useful.

OK, but I didn't read Brian's piece as about PACE but just about the thread of hypocrisy that runs through the whole BPS story. It seems to me a good piece for young psychologists to read. Youngsters love to hear that the wizard of Oz is just a sad old man. And you can tell that Brian is not doing this to grind some personal axe of his own. Maybe some of the young psychologists getting involved in MUS programmes will do well to look at that conference photo and think, 'well, what do my mentors really mean by these things they teach me'.

 

[Joel]

That was a cathartic read @Brian Hughes you expressed articulately a lot of stuff we patients feel but haven't always been able to say. Thank you for writing it.

 

[JohnTheJack]

But that would fall outside an effective doublespeak. The doublespeak of biopsychosocial is intended to sound impressive and knowledgeable to patients while only meaning something else to doctors. To tell patients that they are malingering wouldn't work so well. And who knows what they actually think, since they change their story to fit every situation.

I think this doublespeak is important to understand.

Language is used in particular ways in psychiatry. No one any longer talks of delusions (which implies an imposition of values). They talk instead of 'beliefs'. So when a psychiatrist hears 'unhelpful beliefs', they understand that means 'delusion'.

There was a shift away from 'hysteria' but Wessely's early work confirms that he has always thought ME to be hysteria.

 

[JohnTheJack]

To be precise, MS said that's how doctors view us. (but IMO, it's a way to say it without saying it. "Some say..." should always be followed by a firm condemnation, if not it remains ambiguous.)

Yes, it's known as dog-whistling. Those who are meant to hear the real message.

 

[obeat]

Surely " false illness beliefs" could be misinterpreted as" malingering" if you are not in the inner circle.

 

[chrisb]

Surely " false illness beliefs" could be misinterpreted as" malingering" if you are not in the inner circle.

I forget, but have we found recorded instances of them using that term?

 

[JohnTheJack]

One other thing on that picture. It's something I have mentioned on Twitter before. 31 (?, CBA to count again) men and 2 women. Malingering. Hysteria. Delusion. Tired women's disease.