Barry
Senior Member (Voting Rights)
Yes, me too, but I look forward to the day we all work towards where the rule of law may take its proper course.
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Name and shame list of institutions and psychiatrists/psychologists/pediatricians coercing exercise therapy on unwilling ME/CFS patients
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Snowdrop
Senior Member (Voting Rights)
As do I. Although I have moments of doubt as to whether that will ever be achieved.
And meanwhile it would benefit new people to have a resource where they can evaluate (if only a part of their full evaluation of their own specific needs) the various institutions offering treatment.
As mentioned this doesn't have to be pejorative but a factual recounting of what their experience was within parameters set out in advance. It's weakness would be that it's still contingent on individual players within an institution and they may differ or move/leave and be replaced. So all entries would need to be dated and considered in that light. And some people may not have a choice if getting benefits relies on participating somewhere.
I'm not overly concerned if this is found to be something that doesn't get taken up. I personally have doubts that there is anything specially useful from any of the specialist clinics at the present and knowing what I know would simply avoid them altogether.
Also, this would not be an issue that extends to all countries perhaps.
Samuel
Senior Member (Voting Rights)
i have been thinking about this for quite some time from a completely different angle.
instead of a naming and shaming website, i'll paste some stuff about an alternative website.
===
from time to time, pwme opine on our worst habit. to me, it
is none of those things.
it's "aiming too low".
our successes have come (and will come) from aiming high,
rejecting the feeling that "it's too unrealistic", yet doing
the detailed work needed to get there.
===
what do you think about a website that helps its
visitors know what to do about health-related human rights and civil rights
violations?
there are MANY channels at all levels. i believe we must do
all of them.
some of them are as straightforward as sending an email.
===
imo there is a bigger picture.
all major misopathized diseases are victim populations of
ongoing persecution. individuals with normal diseases are
also victims. (think "justina pelletier".)
talking heads prattle about trivial problems in comparison.
why are policy agendas focused on trivial problems?
getting on the agenda should be our goal. imo it is not enough to make specific bad guys back off or whack another mole in whack-a-mole. bad guys dream up evil faster than we can squash it.
===
this is intimately connected to aiming high.
we've come to downplay or be resigned to the MOST
FUNDAMENTAL of insults and injuries -- ones that decent
citizens would be apoplectically horrified by, mortified by
as humans, and sustainably outraged over.
that last one is key. there are no exceptions to human
rights. the values and sensibilities of citizens are being
trampled.
the problem is that they don't know
the scale and scope of the persecution or the degree to
which authorities are hypocrites.
===
and this is key to the second reason for aiming high: we
have power within our grasp.
speaking truth is necessary but not sufficient. at
the present rate, we will get human rights by the year 3000.
we need to be on the agenda. we need power to get on the
agenda. and we CAN'T get power until we prepare for it.
===
what we need is a social movement. this gets to the public,
and from there to the policy agenda.
bill moyer's movement action plan has accurately predicted
the moves of the powerholders, and i recommend it. it is
online. he also wrote a book.
at our best, we are at the "prove that institutions are
broken" stage. it is a major advance, and it signifies that
we can prepare a movement.
without preparation, the public will not move, and the
best we can expect is the year 3000.
===
but WITH preparation, we can take a new justina pelletier, a
new karina hansen, or a SEVERE PWME WHO IS DENIED FOOD to the
public. our rosa parks.
WITH preparation, we can raise holy hell and make hay and
set the hay on fire.
but ONLY with preparation.
===
so what does preparation entail? according to moyer, and i
find it persuasive, part of it is that we exploit all channels.
the ones we win, we win. like brown v. board of education
for the civil rights movement.
the ones we lose, we still win. before mathees won, qmul's
homework had already eaten its dog.
every action we take notifies people who didn't know about
the scale and scope of the persecution.
This post has been copied to a new thread, and further posts relating to this have been moved to https://www.s4me.info/threads/what-stuff-can-we-do.6157/#post-104556
instead of a naming and shaming website, i'll paste some stuff about an alternative website.
===
from time to time, pwme opine on our worst habit. to me, it
is none of those things.
it's "aiming too low".
our successes have come (and will come) from aiming high,
rejecting the feeling that "it's too unrealistic", yet doing
the detailed work needed to get there.
===
what do you think about a website that helps its
visitors know what to do about health-related human rights and civil rights
violations?
there are MANY channels at all levels. i believe we must do
all of them.
some of them are as straightforward as sending an email.
===
imo there is a bigger picture.
all major misopathized diseases are victim populations of
ongoing persecution. individuals with normal diseases are
also victims. (think "justina pelletier".)
talking heads prattle about trivial problems in comparison.
why are policy agendas focused on trivial problems?
getting on the agenda should be our goal. imo it is not enough to make specific bad guys back off or whack another mole in whack-a-mole. bad guys dream up evil faster than we can squash it.
===
this is intimately connected to aiming high.
we've come to downplay or be resigned to the MOST
FUNDAMENTAL of insults and injuries -- ones that decent
citizens would be apoplectically horrified by, mortified by
as humans, and sustainably outraged over.
that last one is key. there are no exceptions to human
rights. the values and sensibilities of citizens are being
trampled.
the problem is that they don't know
the scale and scope of the persecution or the degree to
which authorities are hypocrites.
===
and this is key to the second reason for aiming high: we
have power within our grasp.
speaking truth is necessary but not sufficient. at
the present rate, we will get human rights by the year 3000.
we need to be on the agenda. we need power to get on the
agenda. and we CAN'T get power until we prepare for it.
===
what we need is a social movement. this gets to the public,
and from there to the policy agenda.
bill moyer's movement action plan has accurately predicted
the moves of the powerholders, and i recommend it. it is
online. he also wrote a book.
at our best, we are at the "prove that institutions are
broken" stage. it is a major advance, and it signifies that
we can prepare a movement.
without preparation, the public will not move, and the
best we can expect is the year 3000.
===
but WITH preparation, we can take a new justina pelletier, a
new karina hansen, or a SEVERE PWME WHO IS DENIED FOOD to the
public. our rosa parks.
WITH preparation, we can raise holy hell and make hay and
set the hay on fire.
but ONLY with preparation.
===
so what does preparation entail? according to moyer, and i
find it persuasive, part of it is that we exploit all channels.
the ones we win, we win. like brown v. board of education
for the civil rights movement.
the ones we lose, we still win. before mathees won, qmul's
homework had already eaten its dog.
every action we take notifies people who didn't know about
the scale and scope of the persecution.
This post has been copied to a new thread, and further posts relating to this have been moved to https://www.s4me.info/threads/what-stuff-can-we-do.6157/#post-104556
Last edited by a moderator:
Hip
Senior Member (Voting Rights)
That is an excellent idea.
And I very much agree that in ME/CFS activism and advocacy, the more channels and angles of attack on the problems we engage in, the higher the chances of success.
adambeyoncelowe
Senior Member (Voting Rights)
I think a survey will be more useful. Firstly, it actually builds evidence of harm that backs up any claims (or not) about poor service in clinics. Second, the results aren't just posted online but need to be first interpreted by someone who can filter for bias and abuse.
The charity surveys on GET were very useful in providing Keith G the data needed for his paper. A similar survey conducted with the help of charities to identify flaws in existing clinical practice, the major hurdles faced by patients, and actual recovery/harm rates would be really useful.
The charity surveys on GET were very useful in providing Keith G the data needed for his paper. A similar survey conducted with the help of charities to identify flaws in existing clinical practice, the major hurdles faced by patients, and actual recovery/harm rates would be really useful.
Hoopoe
Senior Member (Voting Rights)
If you want to name and shame someone, let it be the PACE trial authors and the organizations that are pretending that everything is OK with it. Therapists and doctors that promote GET or in some cases coerce patients should be viewed as victims of false information. They have an excuse. The researchers and reviewers don't and need to admit that they messed up badly.
That may have been true in the early days of CBT/GET but I don't think there is any excuse now. Anyone practising a therapy, particularly the senior medics/psychs running the clinics, should keep up to date with developments in that therapy. Every doctor or therapist in charge of an ME/CFS clinic in the world should know by now that CBT/GET have no objective evidence of efficacy and a lot of evidence from patient surveys and individual stories of harms.
Sasha
Senior Member (Voting Rights)
I'm very much against the 'naming and shaming' approach of clinicians who've been misinformed by people who seem to have been very successful in influencing colleagues and the media. The potential for it backfiring and the legal risk would be enormous.
I also see the clinicians as victims in this and I doubt that clinicians have very efficient ways of updating their knowledge. @Jonathan Edwards would know more about this, but I don't know how a clinician would expect to be alerted every time a new, relevant study came out in a vast literature, and not all of them will have background and expertise to fully understand the issues with PACE. It seems as though many clinicians with a behavourial medicine background are not being trained to understand the problems with unblinded trials and are not well-equipped to withstand BPS propaganda, which has been relentless.
I think it would be better to directly contact clinicians and tell them about the key problems. Tone will be crucial. The information would need to come from a source that can't easily be dismissed, as patients can. Patients have been painted as 'the enemy' and will not seem credible.
I think this would work best as a 'one clinician helpfully warning another, in the interests of patients' communication, colleague to colleague. Perhaps an open letter like the Lancet one, but that also gets sent to individual clinicians whom we know treat with CBT/GET, such as all BACME members and all NHS ME/CFS clinics as a minimum. I'd like it to be drawn up with medical heavyweights from the major universities as the main signatories.
I think that the clinicians have been shamefully misled and if I was one such clinician and discovered the truth of that, I'd be horrified and angry - and if I was shown the writing on the wall I'd be seriously worried about continuing to use CBT and GET on patients.
I agree this applies to clinicians in general, including GP's. They cannot be expected to be completely up to date on all conditions any patient could present with.
I was referring specifically to clinicians in charge of ME/CFS clinics who have a duty, I would say, to keep up with developments in the field. And that includes the mounting evidence that PACE was flawed and did not demonstrate that GET/CBT are effective, and nor has any other trial shown objective evidence of benefit.
They should also be aware that GET is not recommended in the current NICE guidelines for severe ME, and that the guidelines emphasise that patients can refuse the treatments. There are no grounds for them thinking either forced treatment, or GET for severe patients are acceptable or evidence based.
Sasha
Senior Member (Voting Rights)
Agreed.
That would seem reasonable but I wonder how this would be expected to work in practice. My concern is that they've all be brainwashed to consider critical patients 'the enemy' and 'unreasonable' and that their training hasn't prepared them to grasp just how poor PACE is. And they're functioning in a closed group with a lot of groupthink going on. I think it takes other clinicians to break through that.
I think there will be all sorts of psychological defense mechanisms in operation and a 'name and shame' operation will only lock those in further. Colleagues trying to help them find their way out of the situation, though, would have a chance of succeeding - especially if they're of high rank. It seems to me that medicine is a very hierarchical field.
I'm aware of the history of activist movements. In your argument you've equated action with vitriol. They are not the same thing. Of course I believe action is important. But action does not need to be vitriolic. (Vitriol is defined as "bitter criticism or malice.") Like people on the streets protesting, we can make ourselves present online in various ways, but we can do so without vitriol. Vitriol does not look good. We need to be relentless in taking action but that action needs to be measured and rational. We make our argument again and again in many varied and creative ways, but we don't resort to naming and shaming/ bitterness and malice.
My view is not that only the intellectual side is effective. I actually think that's it's not as clear cut as there being two sides to activism - emotion and intellect - as you suggest. Good advocacy uses both and they are often interconnected.
One key reason I'm against a sort of 'rate my teacher' style resource for ME doctors is that these kind of ratings systems are unregulated. The last things we need is more unregulated anecdotal stories clouding the issue. It also seems to be the wrong answer to the challenges we are facing. One of the key arguments that people like Michael Sharpe use is that 'ME patients don't like CBT/GET but we know it works'. So we need to respond by showing that it doesn't work - and backing that up with good research. Demonstrating how we don't like it is kind of supporting his argument in a roundabout way. It's not about what we like/what we want - it's about what works or doesn't work.
Barry
Senior Member (Voting Rights)
Agree up to a point, provided it was operated responsibly by an established and trustworthy charity or the like.
Sasha
Senior Member (Voting Rights)
Just tagging @dave30th and @Jonathan Edwards to see if there's any interest in this idea of an open letter to practioners...
Graham
Senior Member (Voting Rights)
The number of ME centres in the UK is limited, and the idea of "name and shame" is potentially very troubling. But how about listing the good ones? Or even listing all the centres, and adding beside them the number of good recommendations received? Then, if any centre doesn't receive any, or receives only negative reviews (which we don't publish), we would be able to contact that centre and express concerns, possibly getting them into some sort of dialogue.
ScottTriGuy
Senior Member (Voting Rights)
I think we all pretty much agree that the global ME situation needs a paradigm shift by the institutions (political, medical, insurance, etc) that are the power-holders of our health.
We're probably all on the same page that those institutions won't change on their own without a significant amount of pressure from the ME community.
If we know patients are being harmed, physically and psychologically (and socially, financially, and many other ways) from the GET/CBT model of 'treatment',
And we know the medical system (by and large) is not protecting ME patients, but rather coercing then into medical harm,
And we know insurance companies are often requiring (forcing) ME patients to partake in harmful treatments in order not to be homeless and starving,
And we know our governments ignore / deny / perpetuate medical harm and some commit them to mental institutions against their wishes,
And we know from the last 30+ years, waiting for these institutions to self-correct has only embedded the bias further,
And we know ME patient orgs have neither the capacity nor funding to meaningfully respond to these powerful institutions,
Are we not ethically compelled to stop the harm as quickly as possible?
Given this reality, what is more efficient than publicly naming the institutions and individuals that are inflicting harm, and providing them with the appropriate information and opportunity to stop harming people with ME?
Paradigm shifts require big gestures at pivotal moments.
As @Samuel (and Bill Moyer) point out, we are at the "prove that institutions are broken" moment.
We're probably all on the same page that those institutions won't change on their own without a significant amount of pressure from the ME community.
If we know patients are being harmed, physically and psychologically (and socially, financially, and many other ways) from the GET/CBT model of 'treatment',
And we know the medical system (by and large) is not protecting ME patients, but rather coercing then into medical harm,
And we know insurance companies are often requiring (forcing) ME patients to partake in harmful treatments in order not to be homeless and starving,
And we know our governments ignore / deny / perpetuate medical harm and some commit them to mental institutions against their wishes,
And we know from the last 30+ years, waiting for these institutions to self-correct has only embedded the bias further,
And we know ME patient orgs have neither the capacity nor funding to meaningfully respond to these powerful institutions,
Are we not ethically compelled to stop the harm as quickly as possible?
Given this reality, what is more efficient than publicly naming the institutions and individuals that are inflicting harm, and providing them with the appropriate information and opportunity to stop harming people with ME?
Paradigm shifts require big gestures at pivotal moments.
As @Samuel (and Bill Moyer) point out, we are at the "prove that institutions are broken" moment.
Alvin
Senior Member (Voting Rights)
I was skimming the thread but stayed out of it till now.
I like the idea of patients knowing what to expect in treatment an knowing about the real risks. But the goal of the PACErs is to beat us into submission, by calling us vexatious, militant, unscientific and so forth they hope to manipulate public opinion against us and towards them. Think of it as divide and conquering public opinion.
If we provide "evidence" to support those false narratives they will be used against us. The public responds to simple and direct information. Lies, perversions, shortcuts and easy answers are used to turn public opinion (a concept known as propaganda).
When civil rights movements want to create positive change choosing to use violence does not typically work. Because its used as evidence of how the powerful causing harm to the minority is a good thing, as irrational as that is. Passive resistance is meant to show the human cost of the status quo and by showing the real cost in lives they made their enemy look bad hence winning support. You don't give your enemy free ammunition to use against you unless you want to fail. Even when your right and they are wrong.
So whats the answer for us, i would suggest science and media, figure out how to get the Wikipedia article fixed (as well as other sources), put out stories and articles showing the real face of the disease, show real scientific research, get research done that proves a disease mechanism that shows CBT/GET harms patients, get health authorities to change treatment guidelines everywhere else, the idea being that we box them in when everyone recognizes GET is harmful. The parliament debates are very good if they turn out well, if we get a disease mechanism or good research proving CBT/GET is harmful i would even use the courts against the PACErs.
As i mentioned the public does not go through the process of understanding a topic well enough to make informed decision, they go by whats in the media they encounter and their personal opinions and inferences and biases. So whats on TV/internet/shallow discourse will shape their opinions. By manipulating this people are turned against their own interests by those with money and power.
So we should even make sure when ME/CFS is googled there are an overwhelming number of results that talk about the real science and the harms of CBT/GET.
Alvin
Senior Member (Voting Rights)
I pretty much agree
Its efficient but it will be used as evidence that we are the problem and they are the heroes.
And they have the power and resources and influence (and mental/psychical capacity) so people will believe them over us
Thats why we need to work carefully to not give them ammunition to use against us.
Perhaps a different tack is what we need, an updated list of doctors and clinics that don't use CBT/GET. A good list might end up high on google searches?
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I suspect UK list of good places for ME would be very short, possibly empty if decided on by folks on this forum. However there will be people prepared to say that CBT or GET they had was ok or even that they are « recovered » because they have taken on board the BPS thinking.
Hip
Senior Member (Voting Rights)
As I tried to convey in this earlier post, when it comes to these psychiatrists/psychologists/pediatricians who treat ME/CFS using somatoform/psychosomatic theories, we are not dealing with a group of people who are merely ill-informed of the latest scientific facts about ME/CFS; we are rather dealing with a group of people that live in their own parallel universe of alternative medical ideas.
They do not hear what normal scientific people say because they are living in a different universe; they speak a totally different language. They are cut off from normal scientific reality.
There is an enormous chasm of mindset, philosophy and beliefs that exists between the scientific method we are espousing, and the worldview of these psychs. The cliche that many psychiatrists/psychologists are themselves a little crazy certainly holds true here, because basically these psychs are a little wacko, and they have a wacko belief system about the nature of illness etiology. So these are the people we are dealing with.
You really need to understand the mindset of these people in order to appreciate the extent of the problem; that is to say, ironically, in order to understand these somatoform/psychosomatic psychologists, you have to be a bit of a psychologist yourself.
When Professor Esther Crawley's crew of somatoform psychologists treated a young pediatric ME/CFS patient with forced/coerced graded exercise therapy (GET), the patient was made permanently much more ill. When the marvelous Dr Nigel Speight, who acted as a voluntary paediatric medical advisor for ME/CFS charities, went to see this patient, he was appalled at the damage done by these wacko psychiatrists/psychologists/pediatricians.
When Dr Speight gave the parents the good advice to refuse further GET treatment for their child, Crawley's crew then complained to the General Medical Council (GMC) that Dr Speight was interfering with their treatment plan for that child, and this resulted in Dr Speight being suspended by the GMC in 2016. There was a long thread about this story on the Phoenix Rising forum, but it was taken down on the request of Dr Speight.
So even when these psychs cause overt damage by the treatments they give, they don't feel at all responsible for the harm they have caused, because basically in their wacko alternative universe, they deeply believe that what they are doing is right, and there is nothing you can tell them which will change their worldview.
And these psychs are quite prepared to get another medical professional suspended if he dares to contradict them.
So to sum up: these psychiatrists/psychologists/pediatricians are a tad wacko and they are living in a different mental universe to normal scientifically minded people. You cannot communicate to them normal scientific ideas and empirical observations (such as the fact that GET may cause harm), because they are not on that scientific wavelength. This is the extent of the problem.
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Graham
Senior Member (Voting Rights)
That is certainly true of a minority. But what worries me is the large number of dedicated medical professionals, who aim to do their best and who genuinely do have the patients' interests at heart, but who follow the CBT and GET lines because they have had it drummed into them time and time again that these therapies are effective, safe and worthwhile. When my son attended the local ME centre sessions, he found the therapy staff very friendly and considerate: not at all the coercing, forceful sort. But a version of CBT/GET is what they had been trained to deliver.
If we can get to them, maybe we can start an insurrection.
If we can get to them, maybe we can start an insurrection.