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

[adambeyoncelowe]

There could be a real risk of libel here. Whoever set up the website would likely take the fall if any comments were found to be defamatory.

It would be easier to report things privately to a charity for them to pursue. Firstly, people are less likely to sue a charity (it looks tacky) and secondly, a charity can likely mobilise lots of people in its defence (or to present additional evidence that will support any complaints).

I think a 'review' service for clinics would be better. You can ban naming individuals and personal attacks, and instead focus on the quality of treatment, care and advice. Patients could then recommend (or not recommend) the clinics without doing anything that would put them or the website at risk.

 

[MEMarge]

I think that a resource on experience of PwME at different ME/CFS "specialist" clinics could be useful.

It certainly seems that some therapists, even in Clinics which have dreadful reputations, can be helpful for some. Given that children often need medical letters to support educational needs etc this type of info is very helpful.

See above, #21 and #10 re legal concerns.

 

[Jonathan Edwards]

I think you have to be very careful about this sort of thing and probably keep clear of it.

TripAdvisor does this and has a major vetting system and even so has run into major legal problems.

In the medical and academic world there are sites called Rate the Professor or Rate the Doctor and they are almost exclusively used by disaffected students and patients giving people zero out of ten because they are angry for reasons that often have nothing much to do with the service provided. Students give a low rating to anyone who gives them a low mark. The whole thing just feeds mistrust and acrimony.

There are real problems with clinical care but I don't see this approach doing anything but stir up antagonism.

 

[Trish]

In the UK the MEA has a list of NHS ME clinics on its website. The have added a helpful warning at the beginning of the list to read the MEA article about treatments, and to contact the clinic and ask what treatment they use, but of course they can say one thing and do another.

It ends up being down to the individual therapist. Last time I had contact with my local clinic they called what they were doing pacing, but in practice the pacing part just meant keeping a diary, and it very soon moved on to planning increases in activity which was meant to be patient led, but included encouragement to be less cautious. A sort of GET lite.

I am aware this is 'off topic' for this thread, @Hip, but I think the general agreement here is that your idea, though well intentioned, may create more problems than it solves. The cases of forced treatment are shocking and need to be stopped, but I think that is better tackled through the ME organisations advising and helping individuals where they can, and action at a national level to change the guidelines so GET is no longer recommended for anyone.

 

[Peter T]

or just to keep criticizing them, as we have done so successfully with Wessely and Co, so that they eventually decide to leave the field.

People at times say they are leaving the field but in reality are only moving sideways into such as the unevidenced psychiatric non-diagnosis of 'Medically Unexplained Symptoms' syndrome. They are attempting to avoid the increasing clamour associated with ME, but still apply the same bad science and malpractice more broadly with an even thinner evidence base.

 

[Barry]

ME advocacy already has serious problems with how it’s perceived outside the community. I’m not sure drawing up a list of health professionals is the best way to go about improving that perception.

Agreed. I personally would feel obliged to disassociate myself from it.

 

[Barry]

I think you have to be very careful about this sort of thing and probably keep clear of it.

TripAdvisor does this and has a major vetting system and even so has run into major legal problems.

In the medical and academic world there are sites called Rate the Professor or Rate the Doctor and they are almost exclusively used by disaffected students and patients giving people zero out of ten because they are angry for reasons that often have nothing much to do with the service provided. Students give a low rating to anyone who gives them a low mark. The whole thing just feeds mistrust and acrimony.

There are real problems with clinical care but I don't see this approach doing anything but stir up antagonism.

Yes. Would be perceived, justifiably in some cases probably, as a form of online vigilantism.

 

[Hip]

@Hip likes dr chia ...he mentions him in every post he can. That’s fine, but based on his own beliefs he is willing to let Dr chia off a little bit of GET as long as it’s for the mild cases that can handle it?

I think you may have got the wrong end of the stick there. I gave Dr Chia as an example simply because he is not "one of them" (he is not in the somatoform/psychosomatic camp), but is "one of us" (he believes ME/CFS is a physical disease with physical causes). Thus Chia is not biased or blindly influenced by psychosomatic ideas, and so his use of GET is probably based on his empirical observations that it can be helpful, rather than on the blind faith the BPS crowd have that their treatments are the best thing since sliced bread and must be given to all patients irrespective of their state of health.

Also if you read my history of posts on Phoenix Rising, you will see that I've suggested that exercise is probably helpful for the right patients who can tolerate it, such as mild ME/CFS patients who do not suffer from any major PEM after exercise.

ME advocacy already has serious problems with how it’s perceived outside the community. I’m not sure drawing up a list of health professionals is the best way to go about improving that perception.

In my view I think it is good that ME/CFS patients are being name-called "militant", and the only danger I see is that patients start becoming shrinking violets, and fad into obscurity. We are hidden from the world anyway due to many being housebound or bedbound, so it is very easy to be forgotten. Unless we continue making waves, I suspect there will be no increase in ME/CFS research funding, and there will be no research investment from drug companies into ME/CFS drugs.

Are you sure you are not letting these guys get to you? To my knowledge it is only the likes of Wessely, White, Crawley, etc that are calling us names like "militant" (which as mentioned makes me laugh, given the frail housebound/bedbound nature of many ME/CFS patients). That, and any gullible journalists which media-savy Wessely manages to get on his side. I don't see anyone outside this small group of BPS shrinks labelling ME/CFS patients as militant.

People at times say they are leaving the field but in reality are only moving sideways into such as the unevidenced psychiatric non-diagnosis of 'Medically Unexplained Symptoms' syndrome. They are attempting to avoid the increasing clamour associated with ME, but still apply the same bad science and malpractice more broadly with an even thinner evidence base.

That is unfortunately true. The BPS psychs are analogous to the tobacco companies: when the latter's product was proven harmful, they did not stop peddling it, but simply targeted new markets, such as developing countries where there are no strict laws against tobacco advertising and promotion.

In the UK the MEA has a list of NHS ME clinics on its website. The have added a helpful warning at the beginning of the list to read the MEA article about treatments, and to contact the clinic and ask what treatment they use, but of course they can say one thing and do another.

It's very telling that on the MEA webpage you link to, they feel the need to point out that:

Healthcare professionals should be aware that – like all people receiving care in the NHS – people with CFS/ME have the right to refuse or withdraw from any component of their care plan without this affecting other aspects of their care, or future choices about care.

That only serves to underline the problem that I am talking about, which is that these over-zealous shrinks are unethically coercing patients into treatments that they do not want to have, and which we do not know are safe for all patients.

I am aware this is 'off topic' for this thread, @Hip, but I think the general agreement here is that your idea, though well intentioned, may create more problems than it solves.

I take the comments on board, but N=9 in this thread, so I am not sure that can be called a general agreement of all ME/CFS patients. You know, statistical significance and all that.


What I cannot see is any difference between my suggestion, and the long history of acerbic comments that ME/CFS patients have always made against the BPS psychiatrists and psychologists.

If someone would like to explain how you think my idea departs from the existing culture of highly critical, acerbic comments, I'd love to understand why you think this idea is any different.

 

[Dr Carrot]

Are you sure you are not letting these guys get to you? To my knowledge it is only the likes of Wessely, White, Crawley, etc that are calling us names like "militant" (which as mentioned makes me laugh, given the frail housebound/bedbound nature of many ME/CFS patients). That, and any gullible journalists which media-savy Wessely manages to get on his side. I don't see anyone outside this small group of BPS shrinks labelling ME/CFS patients as militant.

If I was an outside observer, and one was to hear that ME patients had been causing trouble and been abusive to researchers, and scrolled through a few online groups and tweets, there would be a lot of good but also a lot supporting that kind of allegation.

One does not have to be healthy in order to be abusive on the internet. But that’s by the by. The point is that some ME patients (and, I’m sure, many other patients with other illnesses) frequently express theories as facts, or exaggerate claims. I’m not sure that we should be adding to that when we have no way of validating how harmful or not a health professional’s approach is when all we have for the most part is anecdotal evidence.

That these kind of villain lists are frequently used by far right groups also makes me uncomfortable by association. Again, not saying they’re the same, but by association. As soon as you codify something like this it can become a stick to beat the entire M.E. community with. Right now we can at least brush things off as a vocal minority of patients.

I have very little confidence that any of this would be received well by those beyond the ME community. Which, frankly, without offending everyone in this forum, is the only community that really matters when it comes to accessing funding, changing perceptions and building bridges with other activists.

 

[Trish]

If someone would like to explain how you think my idea departs from the existing culture of highly critical, acerbic comments, I'd love to understand why you think this idea is any different.

My acerbic comments are about the quality (or rather lack of it), ethics (or lack of them) of their published research and public statements.

Asking people to make anonymous public statements on an website about how a particular doctor or hospital has treated a particular patient, themselves or others, is much more of a minefield involving confidentiality, personal animosity, statements that can't be verified etc.

 

[Peter T]

If someone would like to explain how you think my idea departs from the existing culture of highly critical, acerbic comments, I'd love to understand why you think this idea is any different.

I agree that there are robust comments about named individuals in relation to researchers on many posts and forums. I believe the majority in our context are justified, though anyone unfamiliar with this field might misinterpret it as bullying. Personally I have accused, for example, Prof Crawley of undertaking what is tantamount to 'medically sanctioned child abuse' yet Sharpe used such comments as examples of anti science bullying in the recent De Monitor article. However, I believe I could if necessary defend such a comment in a court of law. I do not believe such are libellous as I believe them to be accurate, despite it being probable that Crawley and Sharpe do regard them as libellous.

In contrast I have at times overstated a position; for example I have stated in the past as a fact that GET is harmful to people with ME without any caveats. This would be much harder to formally defend. Being pedantic it is overstating the case and potentially misleading: the experimental evidence for it being helpful is profoundly flawed, there is research evidence of short term physiological and performance impairments caused by exercise, but that is not the same as proving it harmful in the long term. The weight of survey and anecdotal evidence of harm demonstrate an association between exercise and harm in some people with ME, and though this does not constitute proof of causation, it is such that the balance of probability is that it does cause long term harm in some people. However we can not state from this that it is bad for all people with ME. There is also some survey and anecdotal evidence of some people finding it helpful, and though I am personal sceptical of this, the evidence so far does not allow us to dismiss it out of hand.

To be fair one also sees comments about researchers that might be harder to defend in a court of law.

The difference of such comments to the @Hip suggestion is that the hosting sites have not specifically sought them out. Rather they arise in spontaneous discuss of research or news items.

More in line with the suggestion of a 'naming and shaming' site are the not infrequent posts on Facebook, for example someone may ask for comments on a specific ME service or consultant. Various organisations including the ME Association will publish such posts, deliberately eliciting comments on services or even individuals. These can elicit strongly worded comments; some are descriptive, some are opinions and some are very emotional. I suspect, though some of these comments are very useful, some would be hard to justify in a court of law.

Although I feel people referred to ME services should be able to get information on that service from 'independent' sources, and I would want to proactively discourage people from attending some clinics, I can also see the problems in an unmoderated site in the 'Trip Advisor' format raised by others above. I am not sure if any of us have yet hit upon an uncontentious solution.

 

[NelliePledge]

For the NHS there’s this website you can feed back on about different services. I first saw it on a forum and I believe one or two people have had a go at feedback on CFS/ME services https://www.careopinion.org.uk/

 

[Hip]

If I was an outside observer, and one was to hear that ME patients had been causing trouble and been abusive to researchers, and scrolled through a few online groups and tweets, there would be a lot of good but also a lot supporting that kind of allegation.

I have to admit that when I first started reading ME/CFS forums around 10 years ago, I was really shocked at the outspokenness and highly critical vitriol that my fellow ME/CFS patients were directing at certain researchers, journalists, government organizations like the CDC, and so forth. As someone who by character general does not like to witness or express animosity, harsh criticisms or create social frictions, initially I thought there were a lot of rude ME/CFS patients out there!

But I began to understand that all this furore in the ME/CFS community was for very good reasons, and while I still do not enjoy witnessing these disharmonies and acrimonious discussions, I've learnt how important they are — and now I even partake in them myself.

I think that had patients not created this outspoken furore, we would not been in the improved position that we are now. In other words, if you want to make an omelette you have to crack a few eggs.

It's really great to see that nowadays there are professors and politicians also criticizing the somatoform/psychosomatic camp; 10 years ago there were very few academics or establishment figures on ME/CFS patients' side. So things are improving and momentum is slowly building.

Thus in my view, now is not the time to let up the pressure. The highly critical vitriol of ME/CFS patients has been pretty successful at getting results, and I would like to see this continue, even if those who are the target of such criticism call us names like "militants".

My acerbic comments are about the quality (or rather lack of it), ethics (or lack of them) of their published research and public statements.

Asking people to make anonymous public statements on an website about how a particular doctor or hospital has treated a particular patient, themselves or others, is much more of a minefield involving confidentiality, personal animosity, statements that can't be verified etc.

I understand that you personally may use language carefully, so that your criticisms focus on the research, etc, rather than making more personal statements or personal attacks against the researchers themselves. And that's commendable. But the reality is that many other patients (who perhaps do not have the ability to provide articulate scientific criticism) have expressed themselves in a more emotional manner, by using words of hatred against these researchers. And there have been inaccurate criticisms and exaggerations leveled against these researchers as well. You always get this spectrum of human responses, from the emotionally incensed to the articulately intelligent.

Thus there has always been lots of personal animosity against the BPS crowd, and that's why I don't see much difference between my suggestion and the existing way ME/CFS patients express their views on BPS researchers.

The difference of such comments to the @Hip suggestion is that the hosting sites have not specifically sought them out. Rather they arise in spontaneous discuss of research or news items.

If that's the only cause of concern, then there is no reason to specifically set up a website for this purpose. One could just as per normal start a forum thread.

But my thoughts were that some of the under 16 ME/CFS victims (and their parents) of, for example, Esther Crawley's crew of over-zealous GET pushers may be a little timid when it comes to posting their accounts of abuse online. The ME/CFS forums are typically populated with educated, intelligent and articulate individuals who have the self-confidence to post what they think and feel about ME/CFS issues.

But not everyone feels comfortable posting online, and there may be stories out there of ordinary families whose children have suffered in the hands of the GET pushers, but who perhaps do not feel confident enough to post about it. Thus my thoughts are that a safe environment where such people would feel comfortable to post their accounts might be a good thing.

 

[Snowdrop]

Perhaps we might consider a system of evaluation that is not so open-ended but asks carefully worded questions meant to elicit specific neutral ie factual information. A caveat at the beginning can express the intent of the thread and provide guidance and a warning that any info that strays into personal attack of individuals and or organisations will be removed.

I do think that people who pretend to treat PwME ought to be held accountable and that having a resource to evaluate treatment facilities is very useful.

 

[arewenearlythereyet]

I gave Dr Chia as an example simply because he is not "one of them" (he is not in the somatoform/psychosomatic camp), but is "one of us" (he believes ME/CFS is a physical disease with physical causes). Thus Chia is not biased or blindly influenced by psychosomatic ideas, and so his use of GET is probably based on his empirical observations that it can be helpful, rather than on the blind faith the BPS crowd have that their treatments are the best thing since sliced bread and must be given to all patients irrespective of their state of health.

Also if you read my history of posts on Phoenix Rising, you will see that I've suggested that exercise is probably helpful for the right patients who can tolerate it, such as mild ME/CFS patients who do not suffer from any major PEM after exercise.

As far as I see it if he proposes GET to someone diagnosed with CFS or ME then he is one of them.

I disagree that there is evidence that GET is beneficial for any PWME. Perhaps you could provide a link to identify the research ( published paper) that shows this?

 

[Tia]

I personally would not want to be involved in something like this for the reasons that @Jonathan Edwards and @Trish have expressed above.

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. Imo good advocacy does not involve naming and shaming individuals. I feel very uncomfortable with any kind of 'us' and 'them' talk, however much it might feel like that sometimes, and I think that stirring up personal resentment towards doctors amongst vulnerable, sick people is an unhealthy enterprise. I've been appalled at the kind of provocation of pwme that prof Michael Sharpe has indulged in on twitter this year and I think the last thing we want to do is lower ourselves to his standards. "When they go low, we go high" kinda thing.

(edited because I pressed publish by mistake half way through!!)

 

[Hip]

I disagree that there is evidence that GET is beneficial for any PWME. Perhaps you could provide a link to identify the research ( published paper) that shows this?

You may disagree with that, but in doing so you may be having a conversation with yourself. I never said there was solid evidence for GET's efficacy. Individual patients may sense that exercise does them some good, and individual doctors may observe GET has some benefit for their patients. I don't think we know much more beyond 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. Imo good advocacy does not involve naming and shaming individuals.

If you look at the history of activist movements, successful movements generally express a clear rationale, and that's an essential component; that's the intellectual side. But these movements usually also include lots of people that do all the agitation, marching in the streets, making a lot of noise, denouncing various things by placards, and generally rousing up the emotions. In the case of ME/CFS, marching in the streets is beyond many patients, but as a substitute, online vitriol is accessible to us. It's one of the only ways that ME/CFS patients can make waves.

Your view is that only the intellectual side is effective, and that the agitation side has little effect. But I think that you need both, as they are mutually supportive. If you want an example of this, see Mark Antony's speech in Shakespeare's Julius Caesar: how he simultaneously appealed to both rational interest as well as rousing up the emotions of the crowd, and in that way got the initially hostile crowd on his side towards the end of the speech.

 

[Hip]

Perhaps we might consider a system of evaluation that is not so open-ended but asks carefully worded questions meant to elicit specific neutral ie factual information. A caveat at the beginning can express the intent of the thread and provide guidance and a warning that any info that strays into personal attack of individuals and or organisations will be removed.

I do think that people who pretend to treat PwME ought to be held accountable and that having a resource to evaluate treatment facilities is very useful.

That's not a bad idea at all. The main thing is to make people that might be a bit timid about posting their story comfortable.

 

[Amw66]

If you are not aware of Maddie Bourlet, her father , Roger, is active on Twitter and with ME Action during Millionsmissing. He has also funded biomedical initiatives.
Maddie was " treated" with GET and sleep hygiene with Bath, I believe with the consultant giving the child protection lecture on another thread.
Maddie has articulate parents, who are not afraid to speak out. Others are less fortunate

Maddie remains severely affected . This tweet perhaps sums up the issue - there are issues with @Hips suggestion, but there must be some means of stopping this

 

[Hip]

@Amw66, these are sort of things that get me angry with these psychologists and pediatricians. Their worldview about ME/CFS is so far removed from reality and common sense. They have created their own set of beliefs about ME/CFS which is not based on any science or empirical evidence. They need to do some reality checks and come back down to Earth, but we know that will never happen.

Even the most simple things like understanding that ME/CFS patients can suffer from extreme light sensitivity seems beyond their grasp. These shrinks really are the most exasperating bunch I ever come across.

You would not expect anyone to give a surgeon a job interferon hospital if he did not know what a scalpel was. Yet these ME/CFS pediatricians are given jobs supposedly caring for ME/CFS patients, when they don't seem to understand even the basic symptoms of ME/CFS. Surely that must be illegal.



The adage that you never negotiate with terrorists could be adapted to advise on how we should deal with these shrinks:

the adapted adage is that you must never entertain even a glimmer of hope that these somatoform psychiatrists/psychologists will ever come round to common sense; it is clear they are unreformable and uneducable, and thus sadly the only approach to dealing with them is via a war of attrition, ie, keep severely criticizing until they go.

That's my view at least, others may disagree.