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

[ME/CFS Skeptic]

There are so many wonderful sentences in this blog. For example:

about every time I write about ME/CFS, I get trolled, sometimes on Twitter, sometimes by email. And I can tell you this. The folks who troll me are far from critics of the PACE Trial.

Thanks to Brian Hughes for writing this. I do however agree with the comments by @fivetowns and @Esther12. Rather than faking their disease, the BPS model assumes patients have a delusion.

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.

How much of that is window dressing is hard to tell, but I'd like to give them the benefit of the doubt. There's already so much wrong with their assumptions, that I don't think we have to speculate about any additional flaws.

 

[NelliePledge]

I do however agree with the comments by @fivetowns and @Esther12. Rather than faking their disease, the BPS model assumes patients have a delusion.
.

Malingerer or deluded are equally derogatory in the eyes of the public but of course assuming we have a delusion has the advantage for psychologists/liaison psychiatrists of the BPS persuasion of creating a demand for their services to ‘rescue’ us from the delusion whereas malingerering does not.

 

[Esther12]

There are so many wonderful sentences in this blog.

Oh yeah - sorry for only picking out the parts I disagree with! I do this with everyone and it's a bit unlikeable. I'll try to blame it on my ill-health?

 

[rvallee]

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.



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.

I have seen many. Some ambiguous, some quite direct. White seems to have fewer filters (and possibly is an even bigger jerk than Sharpe), but any cursory reading of Sharpe and White's published writing would find many direct statements. Early writings are especially more blunt, like Wessely's "I will argue that ME is a belief in having a disease called ME". There are many others as egregious. I keep seeing new ones regularly, often when old links to discussions on PR are used here.

As always, it's things we see in passing and share but just don't have the energy to do properly. It would take a literary review, someone to basically read decades of papers, letters, correspondences and lectures. It's just too much work so instead we only have bits and pieces but I have seen more than enough to take that position.

And then there's FINE's "there is no disease" and some controversy with the 2007 NICE panel where they wanted ME to be redefined as strictly behavioral and someone left in anger at that. I'm pretty sure I've even seen a spreadsheet with a lot of those quotes, properly sourced.

I'm not even sure in what context this could be done. As always it's mostly down to us, too sick to do anything, because who would take the risk of doing such labor-intensive work to show some academics are full of shit and deceitful? What would there even be to gain when it's guaranteed to mean angry dean-to-dean calls and threats against their career? So it's something we'll be able to do after, once enough of us are actually capable of doing the work that could allow us to be capable of doing that in the first place.

That's some catch, that catch-22.

 

[rvallee]

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

I can't really think of any other meaning it could possibly have.

 

[Jonathan Edwards]

Oh yeah - sorry for only picking out the parts I disagree with! I do this with everyone and it's a bit unlikeable. I'll try to blame it on my ill-health?

It's that pink teddy bear with a sore head again - where would be without it!

 

[Jonathan Edwards]

I can't really think of any other meaning it could possibly have.

To be fair malingering is not having false or unhelpful beliefs. It is like lying. It is saying you are ill when you believe that you are perfectly well. Malingering occurs, but it is pretty rare in hospital clinics because it requires either very good acting or collusion on the part of the doctor. It was probably common in the army.

Which is why it is pretty bizarre that these people went to a malingering conference. It suggests they don't know the first thing about why people go to doctors.

 

[ME/CFS Skeptic]

sorry for only picking out the parts I disagree with! I do this with everyone and it's a bit unlikeable.

Your critical comments are very much appreciated - well, at least by me.

I think it's important that we have voices in our community who dare to take on the skeptic's perspective and watch over the rest to not make any overstatements.

 

[andypants]

I would add @Esther12 that most of are familiar with your style and know what to expect, and I for one would much rather have weak points pointed out by friendly pink bears than by bitter psychiatrists!

 

[Peter T]

Oh yeah - sorry for only picking out the parts I disagree with! I do this with everyone and it's a bit unlikeable. I'll try to blame it on my ill-health?

Do not be sorry, I see it as an important part of the discussion in these threads that we work through ideas to collectively come up with the best understanding possible so that what is then shared externally with others in advocacy is as logical and as internally consistent as possible.

In relation to the BPSers understanding of ME it is important we are as objective as possible to be able to clearly state both their sloppy thinking/sloppy use of language and their more deliberate 'double speak'.

One problem is that we are trying to understand what their understanding of ME is, whereas they do not seem to really care about achieving a rational scientific understanding of the condition, rather their motivation seems to be marketing their preferred behavioural and psychological interventions. Perhaps any attempt to establish their beliefs about the nature of the condition is doomed to fail. Certainly that people with seemingly radically and contradictory theories of ME seem to fit easily together in promoting their common intervention strategies.

(Sorry I presenting my views as fact, but have not supystematically done the work to be able to cite the evidence that hopefully would support them.)

 

[rvallee]

It suggests they don't know the first thing about why people go to doctors.

That captures it marvelously. There is some form of fundamental attribution error at play, trying to decipher complex and overcomplicated models of behavior that is fully explained by the simplest explanation. But that's boring and hard work compared to just using imagination.

 

[JemPD]

I have seen many. Some ambiguous, some quite direct. White seems to have fewer filters (and possibly is an even bigger jerk than Sharpe), but any cursory reading of Sharpe and White's published writing would find many direct statements. Early writings are especially more blunt, like Wessely's "I will argue that ME is a belief in having a disease called ME". There are many others as egregious. I keep seeing new ones regularly, often when old links to discussions on PR are used here.

As always, it's things we see in passing and share but just don't have the energy to do properly. It would take a literary review, someone to basically read decades of papers, letters, correspondences and lectures. It's just too much work so instead we only have bits and pieces but I have seen more than enough to take that position.

And then there's FINE's "there is no disease" and some controversy with the 2007 NICE panel where they wanted ME to be redefined as strictly behavioral and someone left in anger at that. I'm pretty sure I've even seen a spreadsheet with a lot of those quotes, properly sourced.

I'm not even sure in what context this could be done. As always it's mostly down to us, too sick to do anything, because who would take the risk of doing such labor-intensive work to show some academics are full of shit and deceitful? What would there even be to gain when it's guaranteed to mean angry dean-to-dean calls and threats against their career? So it's something we'll be able to do after, once enough of us are actually capable of doing the work that could allow us to be capable of doing that in the first place.

That's some catch, that catch-22.

There was abooklet produced some yrs ago called 'quote-able quotes' i think i may have seen it in there. I seem to remember it was produced by Hooper / Williams etc....? but i not sure. If anyone wants me too I will have a hunt for it.

 

[Esther12]

Back to more criticism only!

I have seen many. Some ambiguous, some quite direct. White seems to have fewer filters (and possibly is an even bigger jerk than Sharpe), but any cursory reading of Sharpe and White's published writing would find many direct statements. Early writings are especially more blunt, like Wessely's "I will argue that ME is a belief in having a disease called ME". There are many others as egregious. I keep seeing new
ones regularly, often when old links to discussions on PR are used here.

I agree about the FINE quote you mentioned, but that Wessely one is often misunderstood as saying that the cause of ME patient's symptoms is only their beliefs (which is not what he was saying). It's annoying because it's more flimflam from Wessely saying very little, and really just talking about words, but in a way that makes it sound as if he's a big ideas guy. His lecture notes from that are here: https://web.archive.org/web/20031214151305/http://www.meactionuk.org.uk:80/wessely_speech_120594.htm

Valentijn collected a load of extracts from Wessely's work, and links to the full context, here: https://www.s4me.info/threads/simon-wessely-research-related-quotes.1304/ It's always worth reading the full context before trying to understand a quote.

There's a lot to criticise with Wessely & co, but I find that it tends to be that they tend to express themselves quite carefully and in a way that makes it difficult to summarise the problems with their work without being unfair to them. I think it's really important that we avoid doing anything that gives them legitimate cause for complaint that they have been misrepresented though, even if that does make it difficult to produce short and punchy pieces of writing.

 

[Barry]

when wessely has been on media very cleverly stressing that they don’t think it’s in the mind

But it's a very sly sleight of language. Yes, they believe there is a physical problem, but that is readily curable with their 'treatment'. So they reckon that Chronic Fatigue Syndrome is not really chronic at all, and it's only patients' flawed beliefs making it chronic. So they are saying that pwME's persistence of their illness is all in their heads. I don't care what anyone says, if someone insists you could get better if you only tried, then that is only a gnat's whisker difference from saying the illness is all in your mind. And I'm certain that is far from lost on the BPS people.

 

[Trish]

I haven't been able to read all the posts on this thread, so apologies if I'm repeating or contradicting anyone.

My interpretation of the Wessely et al theories about ME, exemplified by that 2001 meeting labelled 'Malingering and Illness deception' is that this was at least 10 years after Wessely started with this idea and he hasn't moved on.

They've just changed the words they use because it's no longer acceptable to state publicly that we are malingering. They couch it in jargon like functional and somatisation and MUPS etc, as code to deceive patients into thinking they are being taken seriously while covertly communicating to their fellow medics we're a bunch of malingerers or deluded or both. The name chronic fatigue syndrome serves the same purpose for the general public. It's gaslighting.

I don't think the likes of Sharpe, Crawley etc would dare say the things about being harassed by ME sufferers if they believed we had a physical illness. It's part of their perception of us as undeserving and therefore OK to label us as trolls and worse.

I think Brian Hughes is quite right to highlight these things. I think the article is spot on.

 

[Barry]

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'.

The political correctness of psychiatry, which so often seems thoroughly incorrect, be it politically or otherwise.

 

[Peter T]

But it's a very sly sleight of language. Yes, they believe there is a physical problem, but that is readily curable with their 'treatment'. So they reckon that Chronic Fatigue Syndrome is not really chronic at all, and it's only patients' flawed beliefs making it chronic. So they are saying that pwME's persistence of their illness is all in their heads. I don't care what anyone says, if someone insists you could get better if you only tried, then that is only a gnat's whisker difference from saying the illness is all in your mind. And I'm certain that is far from lost on the BPS people.

I don't think it is as simple as this.

PACE itself was developed on the basis that we had recovered from any initial medical condition, but deconditioning and false beliefs cause the persistence of symptoms; Sharpe seems to be distancing himself to some extent from this now and makes confusing claims about distinguishing between ME and CFD but I have no idea what he actually believes; Crawford says, at least in the popular press that there is an unspecified ongoing medical condition that can be somehow treated by behavioural/psychological intervention; the chap in Australia whose name I have forgotten (Lloyd?) argues that there is central sensitisation (presumably a neurological condition) that can be treated by GET/CBT (presumably through desensitisation); the MUS chap at Sheffield (Burton?) on the NICE group seems to believe that ME does not exist but is subsumed in a larger group of psychosomatic or somatising conditions and peoples mistaken belief they have a physical illness is made worse by doctors giving medical assessments; people attending some ME clinics can be told their condition results from unresolved childhood trauma that can be resolved by behavioural/psychological intervention; etc.

I suspect each of these would disagree with my characterisation, but, given their reluctance to formulate models or theories and actually scientifically evaluate them, it is hard to know what they are saying. If we try to elucidate a single unifying theory of BPS understanding of ME we will fail, because there is not one.

The only thing they have in common is an unquestioning devotion to CBT/GET. It may be that at some level they all believe that there is an overarching psychological component because for them behavioural/psychological intervention is king, but that it is not what they say. Crawford even goes to the extent of saying, at least in the popular press, there is an inadequately understood underlying biomedical condition, but that behavioural and psychological intervention somehow acts on the underlying physiology and/or neurology to treat that condition.

That is not to say we should not try to understand what they are saying. Indeed I think making explicit this mishmash or hodgepodge of psychoanalysis, psychology, biochemestry, neurophysiology and pseudoscience will be far more effective in challenging them in conjunction with debunking the research on on CBT/GET.

 

[Barry]

Sharpe seems to be distancing himself to some extent from this now and makes confusing claims about distinguishing between ME and CFD [sic?] but I have no idea what he actually believes

I think he believes he needs to distance himself from what even he likely realises is proven rubbish.

 

[leokitten]

Has psychiatry as a field outlived it’s usefulness? Has it done more overall harm than good?

In many ways it’s a slowly dying field partially because of their own doing. Yes I know the more recent subfield of molecular psychiatry is trying to turn things around by doing real science, but all along scientists from multiple fields have been working to fundamentally understand the biological basis of diseases and disorders of the brain, including mental disorders.

Psychiatry has failed to do this from the beginning of modern psychiatry until more recently. So many diseases haven’t seen any fundamental progress under psychiatry and if I’m not mistaken most treatments aren’t really effective.

 

[dave30th]

To be precise, MS said that's how doctors view us.

And not that I have any interest in defending MS, in the context of the specific quote he appeared to be disagreeing with the perspective that patients should be viewed that way. he seemed to be being sympathetic to the plight of patients being viewed that way. I don't like it when people cite that quote as an example of what Michael Sharpe thinks. whatever he does think, that's not how the quote presents it.