Name and shame list of institutions and psychiatrists/psychologists/pediatricians coercing exercise therapy on unwilling ME/CFS patients

[Adrian]

No approach has been made to the committee to ask for such a subforum here at S4ME.

As several members have expressed in this discussion, sites set up for the express purpose of naming and shaming individuals do not, in my opinion, sit well with our ethos:

I agree.

I don’t think anyone should be ‘named and shamed’ whatever they have done, it stirs up hate and achieves nothing. I believe it’s fundamentally wrong.

Secondly we already have a problem being seen by some as aggressive and towards doctors and researchers. A website doxxing and listing accusations (without proof in a lot of cases) against psychologists, etc is going to make things ten times worse.

Im appalled this is even being discussed frankly.

I think any website involved in naming and shaming would run a considerable risk concerning libel. I certainly wouldn't want to take the risk here. Also we don't know about the truth of any comments here. I also don't think it is an effective advocacy tool. Personal attacks on doctors are more likely to get a defensive reaction than move our case forward.

As a forum aimed towards looking at the science, we know and analyse the background and research for potential treatments and as individuals we have opinions about the quality of research and effectiveness of any treatments. I think we have made significant progress by analyzing the science, commenting on issues of methodology and validity of theories and publishing views and analysis and taking part in processes (such as NICE stakeholder meetings) where possible. This approach has been effective at changing views and moving on the argument. There are still those in authority defending bad research but they are not doing so from a strong position anymore and have no coherent arguments.


We do have a forum for discussing experiences with doctors, diagnosis and treatments and it is useful before seeing a doctor to know what approach they take. But lets not get personal here if doctors tend to follow an approach lets refer to the science and evidence for that approach (or lack of it). That may not just be isolated those following the BPS approach there are plenty of doctors following other un-evidenced treatments. In the end it is up to individuals to make up their own mind on treatment approaches but I think the more we can help inform patients of the science the better.

 

[JemPD]

This recent surge in aggressive, unreasonable advocacy seems to be embracing the deployment of fake news (infectious M.E. is the true me, CFS isn’t me, mild me sufferers recover with GET, there are treatments available if doctors would prescribe them etc.). This is just poorly thought out pseudoscience and over exaggerated opinions mostly and has no scientific proof or basis a lot of the time ...it just makes us look stupid and I cringe when people quote bad science in the same breath as criticising PACE....I just think loony fringe I’m afraid. I’m pretty sure most people without ME would think the same.

It’s totally counterproductive and so easy for the BPS lot/establishment to pull apart and use this sort of ‘advocacy” to their advantage.

I get people are angry and frustrated and want to affect change quickly (that’s how I feel anyway) but I really hope people keep their heads and don’t screw us over with poorly thought out activities.

I'm afraid i've not the strength to read the whole thread so apologies if i repeat or go off track.

But I couldn't agree more. I think a 'name & shame' website, although possibly useful for some things, would be a massive own goal. The very last thing we need imo is somewhere else for the GBT/GET fan club to point to when they're in "playing the victim mode". It is an infuriating and egregious reality that any person being abused by someone more powerful must appear 'whiter than white' in order to minimise the success of the abuser 'playing the victim' which every abuser does. It stinks but it's a fact.

And regardless of the motivations of each CBT/GET proponent or the nuances of their particular BPS views, everyone is the hero of their own story. Every domestic violence perpetrator thinks they are a hero - eg 'driven to it' by their victim. Every abuser on the planet plays the victim, either because they genuinely believe themselves to be (as in the above DV example) or because it's an intentionally manipulative tactic, often a bit of both.

And unfortunately, no matter how appalling we know their behaviour to be... any Dr/psychologist/whatever that we might name has - at least in the UK - the complete support of the authorities, public opinion, and, well, everything they need to not only get away with it but to be lauded for it.

So while a 'name & shame' website may name the offenders, it most certainly will not have the effect of shaming them, either to themselves or to the people we need to be on our side. Quite the reverse, - the individuals will simply dig in, become more closed minded & be on their way to becoming even more of a 'hero' in the eyes of the 'powers that be' & their colleagues. They will also be aided in their accusations of harassment etc.


p.s. I dont like to comment & run, but I'm in a bad way at moment having building work done on the house, am here doing a fly-by to distract myself from the worry, so apologies if i don't respond to any comments/challenges for a while.

 

[Alvin]

There's some interesting nuance about Gandhi's nonviolent resistance, for example, that gets missed: http://www.markshep.com/peace/Myths.html. He wasn't against being aggressive and getting in people's faces. He didn't want to perpetrate violence against others, but accepted that it would be committed against him and his followers.

I was actually referencing him indirectly in my earlier reply, he was willing to show the harm being done without giving rationalization for further crackdown. Thats how he won, not a bloody uprising but by changing public opinion by showing his side would never back down but was being harmed unjustly.

The PACErs are afraid of us and afraid of reality, thats why they paint us as militant and unscientific and so on. They need to defend their house of cards by manipulating public opinion to keep their house standing. If we fall for their trap and act like they claim we are then we become the bad guy. If instead we show the public the harm they are causing and how untenable it is then support for their lies will crash.

 

[adambeyoncelowe]

I think it's also important to note that the types of effective direct action taken by movements for change in the past, such as Aids campaigners and suffragettes, have been directed at political regimes and/or organisations that determine government health policies, not at individual doctors working within the system those political authorities control.

This is also true. Individuals do get named and shamed, but they're usually figureheads of said regimes and agencies. The Simon Wesselys and Jeremy Hunts* of the world, rather than the people on the ground.

*I know he's not Minister for Health anymore, but he was certainly a good villain!

 

[adambeyoncelowe]

I was actually referencing him indirectly in my earlier reply, he was willing to show the harm being done without giving rationalization for further crackdown. Thats how he won, not a bloody uprising but by changing public opinion by showing his side would never back down but was being harmed unjustly.

The PACErs are afraid of us and afraid of reality, thats why they paint us as militant and unscientific and so on. They need to defend their house of cards by manipulating public opinion to keep their house standing. If we fall for their trap and act like they claim we are then we become the bad guy. If instead we show the public the harm they are causing and how untenable it is then support for their lies will crash.

Exactly.

 

[Hip]

If the guidelines change so that GET and PACE-style CBT are removed as treatments? Yes. I don't think you are appreciating the difference between US and UK style health systems.

So you are saying you think Esther Crawley and the group of clinical psychiatrists/psychologists/pediatricians that she heads will all pack up and go if GET and CBT are dropped from the NICE recommendations? I admire your optimism, but myself I am more doubtful.

I am also a little doubtful that GET will be removed from NICE recommendations, because it may be a useful therapy if applied intelligently and sensitively by competent medical professionals to the right patients.

But even if we hope for the best, and these are both removed, I fear the same old shrinks will keep seeing young pediatric patients, and they will keep telling their parents that ME/CFS is an "all in the mind" condition caused by their child's own thoughts and beliefs, and they will keep staging those ridiculous loud and noisy psychological charades and game playing within the bedrooms of these sick and sound sensitive young patients that we have all read about.

Just because you remove CBT/GET, you will not remove the theoretical somatoform/psychosomatic model that these shrinks use in their dealings with ME/CFS patients. Thus parents will still be given an earful of misinformation about the nature of ME/CFS, and these psychologists will probably still continue to play their silly psychological charades and games in the bedrooms of sick young patients.

So I think it is likely they will still keep using a psychological approach to try to treat ME/CFS, even if CBT/GET are no longer available. These pscyhs may come up with an even worse psychological therapy to ply, to replace CBT/GET. Thus the situation may potentially become even worse with CBT/GET removed.



I guess I don't really understand why people here would want to protect such dubious and Medieval medical practices from being talked about on a website.

I live in the UK, by the way.

I think it's also important to note that the types of effective direct action taken by movements for change in the past, such as Aids campaigners and suffragettes, have been directed at political regimes and/or organisations that determine government health policies, not at individual doctors working within the system those political authorities control.

I agree that the figureheads should be the target ultimately. So for example, if on such a website, a story is recounted about bad treatment from a particular pediatrician, that pediatrician would be named, but it would also be clearly stated that they are working for Esther Crawley, for example. In that way, one can read about the bad treatment, but one would also be made aware who was in charge of coordinating and promoting such a bad treatment.



I consider the very, very mild action I am pondering upon almost infinitely more civilized than the actions of the suffragettes, who destroyed the contents of letterboxes, smashed the windows of thousands of shops and offices, cut telephone wires, burned down the houses of politicians and prominent members of society, set cricket pavilions alight, and carved slogans into golf courses. See this article.

Interestingly, that article also recounts some of the historical discussion about whether these militant acts were effective or counter-productive to the suffragette movement:

Pankhurst, a canny political operator, knew that their cause had to be kept in the news if it were to succeed:

"You have to make yourself more obtrusive than anybody else, fill all the papers more than anybody else if you are really going to get your reform realised."​

The militant acts of the suffragettes filled the papers but many supporters of the suffrage movement thought they were counter-productive.

The prominent politician Lloyd George, generally a supporter of votes for women, thought that the actions of the militants were ruinous to their cause.

Historians are divided about whether militancy helped the cause of women’s suffrage. Some believe the achievement owes more to the non-militant wing of the suffragette movement led by Millicent Fawcett. But the official justification for giving women the vote does not exclude the likelihood that many parliamentarians were moved by the fear that suffragette militancy might resume.

 

[Cheshire]

I guess I don't really understand why people here would want to protect such dubious and Medieval medical practices from being talked about on a website.

Where have you seen that anybody here wanted to defend GET and CBT? That is nearly laughable.

What people object to is your idea of a "name and shame" site. You'd better ask yourself why such an idea is abhorrent to many people instead of implying we're all too naive or are too dumb to really understand the situation.

 

[Trish]

I am also a little doubtful that GET will be removed from NICE recommendations, because it may be a useful therapy if applied intelligently and sensitively by competent medical professionals to the right patients.

I share your concern, especially with the roll out of IAPT for physical as well as so called MUS and psychological conditions. I don't see the changing of the NICE guidelines as the end of the story that will magic all bad treatment away, but as a vital and necessary first step in a process towards better treatment.

Anything that jeopardises that by pushing at the perpetrators to close ranks through such things as the sort of site you suggest would, I think be counterproductive. I think we need to focus on arguing the science.

 

[Hip]

Where have you seen that anybody here wanted to defend GET and CBT? That is nearly laughable.

That is not what I said. I said some people here are saying it is a bad idea to bring to light individual stories about the way ME/CFS patients (especially under 16s) are treated by psychiatrists/psychologists/pediatricians who ply the somatoform/psychosomatic model. We have read quite a few of these individual stories scattered throughout the ME/CFS forums over the years, so there is nothing new in these stories being made public, but I was thinking it might work better if they were put in one place.

What people object to is your idea of a "name and shame" site. You'd better ask yourself why such an idea is abhorrent to many people instead of implying we're all too naive or are too dumb to really understand the situation.

First of all if you read this post you will see that "name and shame" is not exactly what I had in mind, something a little less confrontational than that. I don't think such a website has to be "aggressive"; I think the stories themselves will indicate how ridiculous these somatoform/psychosomatic shrinks are; their practices are akin to exorcism, and there should be no place for exorcism in the NHS. And this issue is not just confined to the UK; the story I linked to in the first post is a happening in the US, and is happening to a 28 year old.

Secondly, I am taking on board the opinions expressed here. For me the most important one is whether or not such a website would be helpful to the ME/CFS cause, or might be counter-productive to it. People have expressed different views on this, but I don't think anyone is in possession of a crystal ball. I don't know the answer myself, but I do think it is important to keep making waves.

 

[ScottTriGuy]

The other consideration for an overall advocacy effort is the inside / outside approach to propagate change.

A website informing the public of physicians promoting harmful ME treatment, and offering appropriate ME information with an objective to change the system / stop the harm, is very obviously an 'outside' strategy to pressure institutional change.

It is best paired (behind the scenes) with an inside strategy, so the policy makers / power holders work collaboratively with the 'reasonable' inside team, while still experiencing ongoing public / outside pressure to work harder, faster for change.

Its the carrot and the stick. We need both for any hope to catalyze a paradigm shift.

 

[Diluted-biscuit]

Where have you seen that anybody here wanted to defend GET and CBT? That is nearly laughable.

What people object to is your idea of a "name and shame" site. You'd better ask yourself why such an idea is abhorrent to many people instead of implying we're all too naive or are too dumb to really understand the situation.

Exactly, I’d rather question the science than the scientist.

 

[Hip]

If I were to offer my own criticism on this idea, the main concern would simply be that it may be a waste of time; that a website may be set up, but few people will actually come across it, and even fewer people will actually post their stories on it.

So rather than being this dangerous and provocative new presence on the web that some people here think it may be, my own criticism is that it's quite likely to be a damp squib that goes largely unnoticed. I think like most things that individual ME/CFS patients may do on the web, each individual effort is just a drop in the ocean, and makes little impact on its own.

 

[TiredSam]

I think I differ from you @Hip in that I don't think it is the militancy and vitriol of patients that has got results so far. I think any progress has been a result of good science, clearly expressed opinion and sharing of personal experience.

I completely agree with this. As someone who suffers from an unfortunate genetic predisposition to occasional lapses into sarcasm and vitriol, I have at least never kidded myself that it has ever got any results or achieved anything apart from allowing me to blow off steam and perhaps give someone else a bit of a laugh. The people who have got results for us are those who have educated themselves in the science and advocated calmly, articulately and persistently. One of the reasons I have banned myself from twitter, facebook etc and only post on S4ME is because I would be mortified if my inability not to lose my temper and start being rude should bugger up the great work of our more mature and effective advocates.

These days, as soon as you can be accused of "shaming", you lose the argument and the whole world frowns at you. "Fat shaming", "slut shaming", etc etc. If "shaming" can be put on the end of anything you've just said, you're in trouble, and you just end up alienated and frowned upon.

As has already been noted, an ME patient's nightmare doctor may be a compasionate caring superhero to another patient who is lucky enough not to have ME. What happens when a GP's devoted and grateful patients decide to defend them against these harrassing militant ME patients and an online shitstorm develops? When the PACE authors' claims of a campaign of harrassment were examined by the FOI tribunal they were found to be unsubstantiated. What if the PACE authors had been able to point to a "name and shame" website?

We are better than this. Well at least some of us are. Let them get on with their sterling work without being undermined by something which could quickly descend into an unregulated bitch-fest which would make a much better news story, could end up drowning out the voices and arguments that we really need to be heard, and could easily end up being a complete liability to us all.

 

[Hip]

Exactly, I’d rather question the science than the scientist.

That is indeed the right principle, and a similar principle would apply to the idea I have in mind: questioning the practice, rather than the practitioner.

These psychiatrists/psychologists/pediatricians are essentially conducting a practice of modern exorcism; they think ME/CFS is due to aberrant thoughts or beliefs held in the patient's mind, and in their model of ME/CFS, expunging these thoughts or beliefs will cure ME/CFS. That absolute nonsense, and yet this practice is condoned and paid for by the NHS.

I think there is a need to expose this practice, because if the public could see it as it really is — a modern form of exorcism — I am sure they would understand that it is not right. In particular, possible permanent damage caused by coercing patients into GET I feel needs to be exposed.

The intention is not to provoke animosity or hatred against the practitioners, but to raise awareness of their dubious practices.

Another analogy is to deplore the sin, not the sinner.

 

[Daisybell]

Perhaps your thread title is misleading then Hip?

 

[TiredSam]

Another analogy is to deplore the sin, not the sinner.

So why name and shame the sinner?

 

[Diluted-biscuit]

That is indeed the right principle, and a similar principle would apply to the idea I have in mind: questioning the practice, rather than the practitioner.

These psychiatrists/psychologists/pediatricians are essentially conducting a practice of modern exorcism; they think ME/CFS is due to aberrant thoughts or beliefs held in the patient's mind, and in their model of ME/CFS, expunging these thoughts or beliefs will cure ME/CFS. That absolute nonsense, and yet this practice is condoned and paid for by the NHS.

I think there is a need to expose this practice, because if the public could see it as it really is — a modern form of exorcism — I am sure they would understand that it is not right. In particular, possible permanent damage caused by coercing patients into GET I feel needs to be exposed.

The intention is not to provoke animosity or hatred against the practitioners, but to raise awareness of their dubious practices.

Another analogy is to deplore the sin, not the sinner.

The practice according to anonymous reports with no way of verifying the truth.

People are already raising awareness of how CBT and GET don’t work for CFS/ME. Some people like David Tuller are doing it exceptionally well (and many other people). The practice is already being exposed. You are talking about provoking animosity towards individual practitioners.

 

[Amw66]

CBT and GET are only part of the problem.The belief system does not seem to allow any mental constructs to be moved, and for medics to know what they are supposed to be treating/ supporting.
It is more basic than CBT and GET.

 

[Hip]

Perhaps your thread title is misleading then Hip?

Perhaps it may be a tad misleading. The idea of "naming" is not misleading, because I think it is important to identify where these dubious practices are taking place, and who perpetrates them. That's why I suggested that the names of the hospitals or institutions should be identified, as well as the names of the practitioners, and ideally the boss that these practitioner works under, so that we can identify the head academics who are behind it, like Esther Crawley.

Note that this idea is as much a fact-finding exercise as it is a raising awareness exercise: we have seen a few stories posted on the ME/CFS forums about pediatric cases where the psychiatrists/psychologists caused problems, but we have very little information further than that. Are these stories posted on the forums the sum total of all the problematic cases, or are they just the tip of the iceberg? We don't know.

So one of the motivations behind this idea was to gather more information. Maybe there are parts of the UK or US where this problem is worse than other (I am sure near Crawley's Bristol base it will be worse). Maybe there are some hospitals or institutions that are worse than other. That's the sort of information that would be good to see.

As for the "shame" part, I am not conceiving this in terms of a bullying strategy, or as a means to stir up animosity against these practitioners; but certainly I would hope that if a practitioner read a webpage where patients are reporting their stories about how his treatment was horrible, insensitive or harmful, he would hopefully feel disconcerted about his own actions and medical treatments, and might then reflect upon this.

In other words, this is not looking to be platform for aggression, animosity or bullying, but I don't want to let these practitioners entirely off the hook either; I would like them to see that their patients are reporting suffering under their hands (if it is indeed the case that they are).

So yes, hopefully it would provoke some shame, but not in the way some people here are suggesting when they envisage a platform for "bullying" or "provoking animosity". That's not my conception of the idea, that's theirs.

People are already raising awareness of how CBT and GET don’t work for CFS/ME. Some people like David Tuller are doing it exceptionally well (and many other people). The practice is already being exposed.

Are you saying there is no room for any more awareness raising, and that we've reached the raising awareness saturation point?

You are talking about provoking animosity towards individual practitioners.

No, you are putting words into my mouth, you are superimposing your own conceptions onto my idea. Where did I say I wanted to provoke animosity towards practitioners?

Just to remind you, let me quote my post from the start of this thread:

Yes, the tone is important, and it should not be perceived as bullying, but rather trying to raise awareness of a medical practice that at best may be highly unpleasant and disconcerting for patients coerced into it against their will, and at worse may be permanently damaging the health of some ME/CFS patients.

 

[Trish]

Note that this idea is as much a fact-finding exercise as it is a raising awareness exercise: we have seen a few stories posted on the ME/CFS forums about pediatric cases where the psychiatrists/psychologists caused problems, but we have very little information further than that. Are these stories posted on the forums the sum total of all the problematic cases, or are they just the tip of the iceberg? We don't know.

We have Jane Colby of Tymes Trust in the UK talking publicly about dealing with at least 200 cases, we have Dr Nigel Speight giving talks about his work helping families whose children have been wrongly treated. This is the sort of evidence that can be used effectively in advocacy because it comes from reputable and reliable sources. This is surely much better than a collection of anonymous and unverifiable stories on a website.