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

[Hip]

A few years ago I had the idea of starting up a website in which hospitals, institutions or individual psychiatrists and psychologists who coerce exercise therapy upon unwilling ME/CFS patients could be named and shamed.

I was just recently reminded of the idea after reading this thread of an adult with severe ME/CFS who was coerced into exercise therapy in a US hospital against his will (and he may be forced back into hospital for a second course in the near future). Apparently the medical professionals in this hospital unethically refused to feed him unless he got up and went to the cafeteria himself, in order to force him to do exercise.

In this instance, I don't think this patient wants to rock the boat, and I don't think he will want to name and shame the hospital and/or the medical professionals involved.

But in general, it might be a good idea to have a website, or perhaps a sub-forum on one of the ME/CFS forums, where anyone who has been unethically coerced or forced to do graded exercise therapy (GET) against their will or against their better judgement can anonymously post the details, for naming and shaming purposes.

In particular, patients who have experienced a permanent worsening of their ME/CFS after coerced exercise might like to post the name of the psychiatrist/psychologist/pediatrician or institution on this name and shame list.

In a large survey (see page 9) of 4217 patients by the UK ME Association, only 3.4% of patients given GET found it led to great improvement. But 33.1% said GET made them much worse. So these statistics suggest GET may well be harmful for many patients.

Ideally each psychiatrist/psychologist/pediatrician or institution that was named and shamed would have their own webpage or forum thread, so that it is easy picked up in Google searches, when people search for that institution or psych.



Obviously this would not apply where patients have undergone graded exercise therapy of their own free will, or where exercise therapy was intelligently and sensitively administered.

Dr John Chia, who is certainly in the biomedical camp, does prescribe graded exercise therapy to many of his ME/CFS patients where appropriate (ref: here). But I suspect he reserves this for patients with milder ME/CFS.

So this name and shame list would only be for institutions or medical professionals who administer GET forcibly or by coercion, against the will or the better judgement of the patient, especially when the patient tells them that the exercise is making them more ill, but they don't listen.

What do people think about this idea? Is it a good idea? Can you envisage any problems with it?

I think the main issue is that it will rely on ME/CFS patients (or in the case of children under 16, perhaps their parents) who were coerced into GET to anonymously post their account, and name the hospital or medical professional invovled. But possibly once this list is started, it may gather momentum and prompt others to post about their coerced treatment.

 

[Trish]

I'm not keen on websites set up for anonymous naming and shaming. I agree that the patients involved can't be expected to reveal their identities, but that leaves the site open to any disgruntled patient or indeed anyone wanting to discredit ME patients, turning it into something deeply unpleasant and giving pwME a bad name. I think it could backfire badly.

If anything is going to be done about these tragic situations, I think it's better done by reporting the doctor or hospital concerned to ME patient organisations who may be able to help the individual, and protest to the medical authorities. In the case of children in the UK, for example, I think it's better to support Tymes Trust in their efforts to help parents and try to bring about change.

 

[Dolphin]

Peter Denton White

https://forums.moneysavingexpert.com/showthread.php?t=2356683

Critical Illness - A Dreadful Experience with Scottish Provident


I have read with interest the threads concerning critical illness.

If you are considering taking out CI cover you may wish to bear in mind my experience. My policy is 'own occupation'.

I first became ill in 1999 when I did not fully recover from a bout of flu. I was initially given a 'working diagnosis' of depression, undertook graded exercise therapy (GET), cognitive behavioural therapy (CBT) and was prescribed 6 different anti-depressants. As early as 2001 my GP notes indicate that ME/CFS was suspected. Also I reduced my hours at work to 20 hours a week, but my symptoms of physical and cognitive fatigue worsened. By April 2004 I was too unwell to work at all. In June 2004 I saw a NHS Clinical Champion with over 20 years experience who diagnosed severe ME/CFS and stated that it was very unlikely that I would be able to work again. In June 2005 I was awarded Ill Health Retirement as a result of the disabling effects of ME/CFS.

In the Autumn of 2004 I made a claim under my critical illness policy with Scottish Provident. This was the start of a nightmare lasting over 5 years. SP sent a psychiatrist to 'assess' me who diagnosed depression, even though he said in his report I was not depressed when he 'assessed' me. This psychiatrist has claimed training in the field of ME/CFS but when repeatedly asked where this training was undertaken has refused to respond. This psychiatrist recommended concurrent CBT/GET and further antidepressant therapy.

By coincidence NICE recommend CBT/GET for people with ME/CFS, but not for those severely affected by the illness. My claim was refused on the grounds I had not had 'optimal treatment of CBT/GET', delivered by an appropriately trained therapist. It should be borne in mind:
1) That there are no such ME/CFS therapists in my region East Anglia, privately or on the NHS
2) Even if there were I am not well enough to travel to access and participate in the therapy
2) My ME/CFS NHS medical team did not recommend further CBT/GET in my case.

Scottish Provident repeatedly refused to tell me what in their opinion my diagnosis is and what medical evidence they would accept in support of my claim. I asked them that in order to satisfy the policy would I have to undertake further CBT/GET by a therapist specialising in depression and also CBT/GET by a therapist specialising in ME/CFS. Scottish Provident refused to clarify.

I made a DPA application to Scottish Provident who stated in their notes that I was refusing to engage in therapy and so get better. What I had actually said was that I would engage in therapies and treatment recommended by my NHS medical team.

Getting nowhere I took my case to the Financial Ombudsman Service (FOS). The FOS told me I had to provide 'compelling medical evidence of total permanent disability', but refused to disclose what they meant by this. Insurers, by dealing with the FOS over a number of years, know exactly what is required.

In an email to Scottish Provident (obtained under the DPA) I discovered that the FOS commented to Scottish Provident that it was clear I am very ill indeed, that the insurer would probably have to pay out, so why not pay out now?

After deliberating for over 2 years the FOS ruled in favour of my insurer saying that although my consultant had stated 'I can state the certainty that this patient will never work again' my insurer was entitled to explore further treatments for depression. The FOS also said that my ability to understand the issues and my persistence is evidence of my ability to work. A real no-win situation, if I had not persisted my claim would not be paid.

The FOS added that a way forward could be for me to obtain a further report from a psychiatrist commenting on my mental health.

So I obtained a report from a psychiatrist specialising in the field of ME/CFS. He confirmed the diagnosis of ME/CFS, agreed with my first consultants opinion regarding prognosis and stated I am not depressed.

I sent this report to Scottish Provident in November 2008 who continued to refuse my claim on the grounds that the psychiatrist had not included 'clinical objective evidence'. I asked Scottish Provident what they meant by this but they refused to clarify.

By this time I had become very ill indeed. I decided I could no longer cope and chose to employ a specialist solicitor. He recommended obtaining further medical evidence from yet another ME/CFS Consultant. This I did last summer.

At the beginning of this year Scottish Provident finally admitted my TPD claim dropping their insistence on further 'therapies'. It would appear that the involvement of a specialist solicitor and the weight of medical evidence finally persuaded Scottish Provident that their position was untenable.

Over the years I have spoken to a number of people claiming PHI and TPD as a result of ME/CFS. Their experience has been uniformly poor. One lady was told by Norwich Union not to bother obtaining medical evidence as they would only take into consideration evidence provided by their 'experts'. I have documentary evidence (obtained under the DPA) that Scottish Provident lied to me and misled me. My NHS medical team has told Scottish Provident that their tactics have made my illness more severe.

I see from some of the previous posts that a high percentage of CI claims are paid out. I suspect that this is the percentage of claims that are pursued. There is a proportion of legitimate claimants who simply give up because they are too poorly to cope with the tactics of their insurer and/or do not have the savings to pay for private medical reports and solicitors.

It is interesting that the 'school' of psychiatrists who espouse CBT/GET for ME/CFS have close links with the insurance industry. The Chief Medical Officer for Scottish Provident who reviewed my claim for Scottish Provident was Prof Peter White who also heads the ME/CFS clinic at Barts. This clinic only 'treats' mild/moderate cases with - you've guessed it - CBT/GET. Even NICE doesn't recommend CBT/GET for the severely affected, yet that didn't stop PW advising my insurer that my claim should be refused until I undertook CBT/GET again.

Also it is very easy to blame the patient if CBT/GET is not effective, rather than looking more closely at the efficacy of the therapy. As my consultant commented there is no longitudinal research evidence that CBT/GET is remotely curative, or in the case of the severely affected can bring about enough of an improvement for the patient to return to work. The main problem with the research into the efficacy of CBT/GET is the selection of patients. A very wide definition of 'chronic fatigue' has been used, rather than for instance the Canadian Criteria for ME/CFS. There is a huge difference between 'chronic fatigue' and ME/CFS.

I am very pleased to hear your wife has improved, especially as she was severely affected. This illness can be very disabling and I wouldn't wish it on anyone.

 

[Hip]

I'm not keen on websites set up for anonymous naming and shaming. I agree that the patients involved can't be expected to reveal their identities, but that leaves the site open to any disgruntled patient or indeed anyone wanting to discredit ME patients, turning it into something deeply unpleasant and giving pwME a bad name.

Any disgruntled patient who wants, for no good reason, to cast aspersions on a hospital or medical professional is quite free to do so anyway. He can post his disgruntled account anywhere on the Internet, or can set up his own blog if he wants to.

I can't see how a name and shame website or sub-forum, which focuses only on this very specific issue of the coerced use of GET, would provide any more opportunities to the disgruntled than the Internet provides them already.

 

[Hip]

I think it's better done by reporting the doctor or hospital concerned to ME patient organisations who may be able to help the individual, and protest to the medical authorities.

I agree this is also worth doing, but posting on a forum/website is easier and less formal than writing to an organization, and also, may be more effective: the ME/CFS patient organizations I should imagine are well aware of this coerced GET, but it's not clear if they have done anything about it (I've never seen anything written by these organizations to suggest they are tackling this issue); whereas something posted online may have a more direct effect if the hospital becomes aware of it, as the hospital has their reputation to consider.

 

[ScottTriGuy]

Is the objective of the website to be a resource for ME patients, or as an advocacy tool to raise awareness about institutionalized harm?

 

[Hip]

Is the objective of the website to be a resource for ME patients, or as an advocacy tool to raise awareness about institutionalized harm?

The idea is to raise general awareness about this specific form of institutionalized harm, but also to put a bit of pressure on the hospitals/institutions involved, such that their management may look into this issue of psychiatrists/psychologists/pediatricians in their hospital coercing very sick ME/CFS patients into this GET treatment, which may well do permanent harm. And then hopefully the management may issue new guidelines to these over-zealous psychiatrists/psychologists, preventing them from unethically forcing GET on unwilling ME/CFS patients.

Hospitals have their reputation at stake, so they may well act and do something about it if accounts of ME/CFS patients being coerced into potentially harmful GET treatments start surfacing online, especially when young vulnerable children are concerned.

 

[Peter T]

Although I agree this is a good idea, I also wonder with others above how it would be possible to distinguish between genuine cases and malicious misreporting. Though the latter is likely to be infrequent it would be difficult to see how it could be prevented.

Would there be legal implications for any site hosting material that was subsequently found to be libellous? Occasionally you see people asking for comments on specific ME services on such as the ME Association Facebook page, with some very robust comments. This does not seem to cause legal problems.

Would a solution be to have a site that allowed people to post anonymously who were actively making complaints, with the consequences those complaints also being reported in due time? Though a problem with this is that so many of us may feel unable to pursue a formal complaint, especially if we are experiencing a relapse or deterioration precipitated inappropriate intervention.

 

[Jonathan Edwards]

Hospitals have their reputation at stake, so they may well act and do something about it if accounts of ME/CFS patients being coerced into potentially harmful GET treatments start surfacing online, especially when young vulnerable children are concerned.

I don't see any prospect of hospitals feeling their reputations are at stake. If they ask for an expert opinion they will be told that what they are doing is fine and the patients are just being difficult. From a human nature perspective I see no prospect of getting a wanted result.

And my concern is that exactly the opposite result may be achieved. The more that health professionals who think they are doing their best, perhaps naively, are subjected to naming and shaming the more they will close ranks when it comes to processes like getting NICE guidelines changed.

 

[MEMarge]

I think it could be very useful to have a reservoir of this information, possibly on a forum or Facebook site to start with.

It is very useful on the parents' Facebook group to have info from other parents about who is useful or not within the paediatric clinics.

Would not suggest starting one here until charity/limited something or other status is sorted.

 

[Hip]

I don't see any prospect of hospitals feeling their reputations are at stake. If they ask for an expert opinion they will be told that what they are doing is fine and the patients are just being difficult. From a human nature perspective I see no prospect of getting a wanted result.

You may well be right, though I think there is still a need to raise awareness of this issue, even if hospitals don't respond. Raising awareness is usually the first step to finding a solution.

Furthermore it's possible that even if hospitals and institutions do not respond, individuals will be more sensitive to online criticism, so if individual psychiatrists/psychologists are named, that might have a stronger effect.

In this respect, there is nothing new here, since ME/CFS forums and patients have for years constantly and severely criticized academic psychiatrists/psychologists who have been involved in PACE, CBT/GET, somatoform/psychosomatic theories and the biopsychosocial model. Indeed, there has been such intense and constant criticism from patients that it has actually affected the careers of these individuals. I am referring to psychiatrists/psychologists such as Wessely, White, Crawley, Chalder, Sharpe and others.

So ME/CFS patients are no withering violets when it comes to penning sharp criticisms of the CBT/GET crowd. I am merely suggesting that this criticism might be extended to practicing clinicians as well.


I should add though that perhaps the phrase "name and shame" is a little too strong; after all, it's not as if making a patient exercise until they feel quite ill is actually the most heinous crime on Earth*; and I expect the general public will not see it as a major crime either. So the wording and criticism need to be in proportion with the nature of this misconduct.

* Unless of course exercise therapy is indeed causing a major and permanent worsening of ME/CFS in some patients, as some researchers suggest it might.

And my concern is that exactly the opposite result may be achieved. The more that health professionals who think they are doing their best, perhaps naively, are subjected to naming and shaming the more they will close ranks when it comes to processes like getting NICE guidelines changed.

That's possible; it's hard to predict the effect of these things in advance.

I thought the same thing might happen with PACE: that stakeholders interested in maintaining CBT/GET would close ranks to support the PACE trial study; which of course has happened to an extent in some quarters, but fortunately the majority of "the system" seems to have rallied more around the PACE critics than the PACE supporters. Which has actually raised my faith in the system, especially seeing how politicians are now getting involved with the PACE CBT/GET issue, and are in full support of the PACE critics.

I like to think this is because moral standards have risen in recent decades, and that nowadays you are less likely to get the old boy's network closing ranks.

 

[Barry]

I'm not keen on websites set up for anonymous naming and shaming. I agree that the patients involved can't be expected to reveal their identities, but that leaves the site open to any disgruntled patient or indeed anyone wanting to discredit ME patients, turning it into something deeply unpleasant and giving pwME a bad name. I think it could backfire badly.

If anything is going to be done about these tragic situations, I think it's better done by reporting the doctor or hospital concerned to ME patient organisations who may be able to help the individual, and protest to the medical authorities. In the case of children in the UK, for example, I think it's better to support Tymes Trust in their efforts to help parents and try to bring about change.

I fully agree with this. I very much appreciate the sincerity and sentiment in @Hip's post, but believe it leaves a barn door wide open for PwME being accused (perhaps genuinely if it went horribly wrong) of being very militant and bullying. We have to rise above that.

 

[ScottTriGuy]

Perhaps instead of 'name and shame', the purpose of the site is to 'educate and inform' these physicians, so its not just a bitch and whine fest, but a constructive process to bring these physicians onto our side.

Something like: patient inputs their experience with physician's name, email address, and the site auto sends the physician an email saying they've been noted for dispersing contraindicated 'treatment' based on fraudulent research, and give them appropriate info, and ask for their thoughts / feedback (so its like a conversation, not a lecture or dressing-down, and they're more open to change).

And then if they don't drop the CBT/GET harm, we move onto the shaming publicly and formally via their medical associations.

 

[Hip]

I fully agree with this. I very much appreciate the sincerity and sentiment in @Hip's post, but believe it leaves a barn door wide open for PwME being accused (perhaps genuinely if it went horribly wrong) of being very militant and bullying. We have to rise above that.

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. We don't have enough data to demonstrate that GET is safe, and it might be fine for mild ME/CFS patients, but may well be permanently harming some ME/CFS patients in the moderate to severe category. And it may be very ill advised to give GET to patients who are already in PEM, due to still being crashed from last week's GET treatment.


As an aside, it does make me smile when ME/CFS patients are referred to as "militant", given than so many are housebound or bedbound, and conduct their "militant" activities using a laptop or tablet while snuggled under the blankets!

When I think the word militant, I conjure up maybe the suffragettes burning down buildings for the purpose of advancing their noble cause; or perhaps the French students hurling rocks and setting fires in the streets of Paris in the 1960s. But somehow, lying frailly in bed and hitting the laptop carriage return to post an indignant comment online does not quite fit my general conception of militancy!

Perhaps instead of 'name and shame', the purpose of the site is to 'educate and inform' these physicians, so its not just a bitch and whine fest, but a constructive process to bring these physicians onto our side.

Yes, something approximately along those lines may be better, although unfortunately I don't think we will be able to educate and inform these psychiatrists/psychologists/pediatricians, as I think they are too steeped and invested in their somatoform/psychosomatic theories to change their views. Psychological ideas often seem more like religions than science, and psychologists will blindly adhere to their beloved theories like religious zealots. Evidence or facts will not change their views.

Thus I think that they are unreformable, and so the only solutions I can see is to either raise awareness of their activities, so that new regulations are put in place to prevent them doing what they are doing, 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.

Of course, what would be much better is if NICE came along and set up strict new regulations about coercion into exercise, such that young and vulnerable children are not forced against their wills into exercise.

 

[ScottTriGuy]

although unfortunately I don't think we will be able to educate and inform these psychiatrists/psychologists, as I think they are too steeped and invested in their somatoform/psychosomatic theories to change their views.

I concur, but, playing the long game, by attempting to engage them, even knowing most will refuse / ignore, frames us as reasonable and solution-oriented to prevent further harm, allowing our shaming to be justified / legitimate and less likely viewed as bullying / overly militant, and more likely to get other folks / diseases to pile on.

 

[Hip]

I concur, but, playing the long game, by attempting to engage them, even knowing most will refuse / ignore, frames us as reasonable and solution-oriented to prevent further harm, allowing our shaming to be justified / legitimate and less likely viewed as bullying / overly militant, and more likely to get other folks / diseases to pile on.

One can certainly try to engage, but in asking these psychiatrists/psychologists/pediatricians to see things differently, you are asking them to utterly change their worldview.

In their world, disease is caused by having the wrong thoughts in your head. This idea is really no different to Medieval notions of illness, where evil spirits or demons were considered a cause of disease. This belief led Medieval physicians to perform exorcisms or sometimes trepanation (drilling a hole in the skull to release the evil spirits from the brain) in the case of mental illnesses.

It's remarkable that in the 21st century, we actually have psychiatrists and psychologists still believing in such primitive notions of illness, remarkable that our modern mental health professionals are still steeped in this worldview where thoughts or spirits cause disease. Yet there is no denying this is the case, as Simon Wessely has written that in ME/CFS:

Beliefs are consequently probable illness-maintaining factors and targets for therapeutic intervention.
Source: here.

He also said:

I will argue that ME is simply a belief, the belief that one has an illness called ME.

If you want to engage, I think it's necessary to try to understand the mindset of the psychiatrists/psychologists who subscribe to these Medieval somatoform/psychosomatic notions of disease; once you do understand, you appreciate that there is a huge chasm between their worldview and the modern scientific one. In trying to engage, you thus have this great chasm to cross.

 

[Webdog]

Rehmeyer and Tuller name a few institutions in their NY Times opinion piece. It's from last year, so may not be up to date.

https://www.nytimes.com/2017/03/18/opinion/sunday/getting-it-wrong-on-chronic-fatigue-syndrome.html

The Mayo Clinic, Kaiser Permanente, WebMD, the American Academy of Family Physicians and others recommend psychotherapy and a steady increase in exercise.

Edit: Not necessarily "coercing", but definitely called out.

 

[Hip]

Rehmeyer and Tuller name a few institutions in their NY Times opinion piece. It's from last year, so may not be up to date.

It's not the recommendation of GET per se that is the issue I am raising; as mentioned earlier, even ME/CFS specialists like Dr Chia, who take the biomedical view of ME/CFS, prescribe GET on a cautious basis to certain patients.

The issue I am trying to highlight is where GET is used forcibly against a patient's will; or where medical professionals coerce the patient into doing GET using dubious or unethical means of persuasion; or when the patient is clearly being made more ill by the GET treatment and protests against it, yet the psychiatrists/psychologists/pediatricians administering GET do not listen to the patient, because they are so blinded by their own primitive Medieval views on ME/CFS that they cannot see that GET may be potentially very harmful.

 

[arewenearlythereyet]

Dr John Chia, who is certainly in the biomedical camp, does prescribe graded exercise therapy to many of his ME/CFS patients where appropriate (ref: here). But I suspect he reserves this for patients with milder ME/CFS.

I suspect this quote illustrates why naming and shaming isn’t the right thing to do.

No one will follow any rules or guidance set and will “shame” based on their own set of values and prejudices, making the whole thing just a bitch fest as previously mentioned.

@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?

This is clearly a biased view, since GET can only be performed on mild cases anyway (I.e the people who were made worse)but because Dr chia is “liked” for his other work this doesn’t require shaming?

This sort of bias could mean that the shaming process would quickly unravel and just become something that proponents of the militant unreasonable emotive ME community would use to their advantage.

I’ve used this as an example, but you could apply this to any sort of bias towards institutions or practioners when it comes to calling out some drs that prescribe GET. AFME for instance springs to mind as a proponent of GET and they're a charity?

Plus there is no evidence (only opinion) that GET actually does harm so as an advocacy tool I think this could be pretty damaging to us on the whole.

 

[Dr Carrot]

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.