Why do BPS proponents keep ignoring the evidence against their ideas?

[rvallee]

Copied post, with following posts moved from Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian

I'd say that the recent events with NICE has given me zero confidence the same won't happen again here. Cochrane already did a similar thing, it's basically expected they would do it again, although that's probably entirely tied together with how NICE turns out. NICE is a government institution with a legal charter, Cochrane has no such thing and neither organization have followed their own rules with us. NICE can do just cancel its rules and process, which Cochrane has zero obligation or incentive to respect and have not done once yet.

It's sad but honestly I expect the same here. If NICE can do this and Cochrane already did, the odds that it won't end up the same are basically nil. We are just hated that much, at this point I'm not even sure lepers were hated as much at their worse, it's absurd to see the depth of contempt. You'd think we killed every last one of their puppies, or something.

We need an entirely new model of health care and Cochrane is basically the gold standard of medical status quo, and the status quo is working against us. I'm seeing absolutely no learning happening anywhere related to Long Covid, it's the same junk all over again.

 

[Hutan]

We are just hated that much

The cynicism is warranted, but I don't think people with ME/CFS as a whole are 'hated' by the BPS proponents. I think most of them genuinely believe that we could be fixed, or at least greatly improved, if we just got on and followed their advice and abandoned our faulty perceptions of life. So it's not hate, more a sense of hurt and puzzlement and frustration about why we are so stubbornly attached to remaining ill (edit) and why we aren't grateful to them for their efforts.

Of course, I'm sure there is some hate directed to specific advocates who have made their research and them look silly.

I find it hard to believe that there is widespread hate towards people with ME/CFS in NICE or Cochrane. Indifference is probably the prevailing attitude. I have to hope that what negative attitudes there are, and certainly there are some including condescension, a belief that we are not reliable witnesses of what we experience and that we are irrational, over-sensitive and naturally inclined to militancy, are the result of ignorance and can eventually be corrected.

 

[NelliePledge]

They see us like petulant primary school children who don’t know any better and just need to be brought in to line by adopting a ‘normal’ routine.

They could save even more money ditch CBT and the clinics just make us watch old episodes of the tv nanny programme where she sorts out the toddler behaviour or the dog whisperer guy, teach us to know our place.

 

[Ariel]

I think we are a meal ticket. Or the meal.

 

[Amw66]

I'd say that the recent events with NICE has given me zero confidence the same won't happen again here. Cochrane already did a similar thing, it's basically expected they would do it again, although that's probably entirely tied together with how NICE turns out. NICE is a government institution with a legal charter, Cochrane has no such thing and neither organization have followed their own rules with us. NICE can do just cancel its rules and process, which Cochrane has zero obligation or incentive to respect and have not done once yet.

It's sad but honestly I expect the same here. If NICE can do this and Cochrane already did, the odds that it won't end up the same are basically nil. We are just hated that much, at this point I'm not even sure lepers were hated as much at their worse, it's absurd to see the depth of contempt. You'd think we killed every last one of their puppies, or something.

We need an entirely new model of health care and Cochrane is basically the gold standard of medical status quo, and the status quo is working against us. I'm seeing absolutely no learning happening anywhere related to Long Covid, it's the same junk all over again.

Sadly the proposed tie in between NICE and Cochrane does not fill me with any sense of optimism . ....

 

[Invisible Woman]

I don't really believe that we are hated. It's actually worse than that. It's a complete lack of respect for us as human beings.

It's possible to have strong negative feelings toward someone but still have some respect for them. Even if it's only as an opponent not to be taken lightly.

The lack of respect breeds indifference to the fact we are humans with needs, dreams and ambitions just like they are. The lack of respect allows the "othering" - they are strong people and have careers so they are worthwhile, we are "other" and therefore can be seen as weak, lacking moral fibre, unwilling to do what it takes to be successful in life.

Lack of respect and indifference then meets skewed priorities. Their careers & success become more important than the patients' wellbeing. Like attracts to like and a career spent in an echo chamber is easy. If everyone thinks the same then no one needs to expend any effort thinking independently. Toe the party line and accrue the career credits.

They don't hate us. Individually we are less than nothing to them. As a patient group we are there to be used to further their own ends.

Simples.

 

[rvallee]

The cynicism is warranted, but I don't think people with ME/CFS as a whole are 'hated' by the BPS proponents. I think most of them genuinely believe that we could be fixed, or at least greatly improved, if we just got on and followed their advice and abandoned our faulty perceptions of life. So it's not hate, more a sense of hurt and puzzlement and frustration about why we are so stubbornly attached to remaining ill (edit) and why we aren't grateful to them for their efforts.

Of course, I'm sure there is some hate directed to specific advocates who have made their research and them look silly.

I find it hard to believe that there is widespread hate towards people with ME/CFS in NICE or Cochrane. Indifference is probably the prevailing attitude. I have to hope that what negative attitudes there are, and certainly there are some including condescension, a belief that we are not reliable witnesses of what we experience and that we are irrational, over-sensitive and naturally inclined to militancy, are the result of ignorance and can eventually be corrected.

I see mostly ignorance out of the BPS ideologues, but I do see a lot of genuine hatred from the rest of medicine. We've seen a few discussion in medical forums, it is hatred, or at least contempt. But the outcome is the same, whether it's genuine hate, or simple ignorance, because unless it's directed at a simple person, hatred of others is always a manifestation of ignorance, so a distinction without a difference.

No one does deliberate harm to an entire population unless they hold them in enough contempt to be indifferent to the outcomes. This is the banality of evil, it's never mustache-twirling, it's always the simple indifference to "others" as people worthy of the same respect they think they themselves deserve. There is no question that they disrespect us, the context of medicine and its complete power imbalance does the rest. It's the same mentality behind people forcing others into misery, telling them it's "just business". They don't mean harm, they just don't care about inflicting it.

 

[Lilas]

It's actually worse than that. It's a complete lack of respect for us as human beings.

The profound lack of human respect ... oh yes! They don't want to hear our real experience because it just doesn't match their view, intimately tied to their career plan. They are blinded by biases and prejudices, they do not want to see, they do not seek the facts, the reality, the truth. Because if they were really looking for the truth, it would be a long time since they would have heard, believed and respected us. So they constantly prefer to adapt reality so that it conforms to their vision, which is totally against science. From my humble understanding, science observes, uses objective measurements to understand the phenomenon which occurs before its eyes, and if it methodically modifies the conditions in which this phenomenon occurs in order to study it, it never changes the results obtained or does not seek to weaken the method of research in an attempt to adjust them to its desires. (Not like Pace trial and its offspring, whose value is completely dissolved by the subjectivity and methodological errors of its approach!)
.

Intelligent people whose prominent egos end up making irrational, they exist more than I would like. ( I admit that for some it is by simple conformism to the spirit of the times, although that doesn't make it any less worse in my eyes.)

 

[Ravn]

The cynicism is warranted, but I don't think people with ME/CFS as a whole are 'hated' by the BPS proponents. I think most of them genuinely believe that we could be fixed, or at least greatly improved, if we just got on and followed their advice and abandoned our faulty perceptions of life. So it's not hate, more a sense of hurt and puzzlement and frustration about why we are so stubbornly attached to remaining ill (edit) and why we aren't grateful to them for their efforts.

Of course, I'm sure there is some hate directed to specific advocates who have made their research and them look silly.

Yes. I sense a strong whiff of "White Man's Burden" over the whole thing. To me it looks like they see themselves as enlightened, benevolent and deserving of gratitude for accepting the heavy duty of raising us from the depths of our superstitions to see the light of the godliness of exercise and employment. They see us as childlike 'natives' in need of guidance and a firm hand, definitely not equals. If saving us from ourselves means lying to and about us, the end justifies the means as far as they're concerned. Though I suspect most of them have genuinely convinced themselves of their own story (many people have an astonishing ability to believe the weirdest things even in the face of all the evidence in the world to the contrary). Us not playing our assigned role threatens not only their financial interests and careers, it strikes at the heart of their identity as white knights.

 

[Solstice]

With regards to psychologists, my sister-in-law is a psychologist, is one of the sweetest persons you'll ever meet and always has my best interests in mind. It still doesn't stop her from coming out with completely unhelpful bullshit. It's the way psychologists are trained. One of the things she said was quite funny to me as I had a similar observation, but psychologists have a diagnosis for every aspect of the human character. So she is aware that there's a lot of bullshit in psychology. It's just that at certain times training kicks in and suggestions pour out that aren't very helpful.

 

[Sly Saint]

With regards to psychologists

It still doesn't stop her from coming out with completely unhelpful bullshit.

unfortunately it's not only psychologists but anyone who has 'done psychology' as part of any other training course.

 

[Hutan]

Yes. I sense a strong whiff of "White Man's Burden" over the whole thing. To me it looks like they see themselves as enlightened, benevolent and deserving of gratitude for accepting the heavy duty of raising us from the depths of our superstitions to see the light of the godliness of exercise and employment. They see us as childlike 'natives' in need of guidance and a firm hand, definitely not equals. If saving us from ourselves means lying to and about us, the end justifies the means as far as they're concerned. Though I suspect most of them have genuinely convinced themselves of their own story (many people have an astonishing ability to believe the weirdest things even in the face of all the evidence in the world to the contrary). Us not playing our assigned role threatens not only their financial interests and careers, it strikes at the heart of their identity as white knights.

(Veering off-topic, but yes, I've had exactly the same thought lately. I spent a year at Oxford, and, coming from New Zealand, I was utterly amazed at the colonial and class attitudes that were deeply embedded there. It's no coincidence that a number of the BPS proponents are based at Oxford, and others move easily in that same social class.

I have often come across examples of projects where highly educated foreigners thought they knew best, charged on without listening to people who actually knew the territory, and created extraordinary stuff-ups. Sometimes the people these stuff-ups were imposed on just laughed and did their best to ignore them. Other times, a great deal of suffering was created for generations of people, while the masterminds went back to their air-conditioned offices in Singapore or Geneva or similar.

I do think it's useful to consider the BPS/IAPT phenomenon in the context of a culture where moral and intellectual superiority is assumed, regardless of any evidence suggesting otherwise. I think some of the ways that culture has been shown to be unhelpful in other aspects of life can help us with our advocacy.)

 

[Invisible Woman]

I sense a strong whiff of "White Man's Burden" over the whole thing. To me it looks like they see themselves as enlightened, benevolent and deserving of gratitude for accepting the heavy duty of raising us from the depths of our superstitions to see the light of the godliness of exercise and employment.

I think that's certainly the way they would like to peddle it - them helping those poor delusional folk who don't really deserve but it's not their fault they have no backbone or moral fibre. The arrogance is certainly there.

What I actually see though are pigs at a trough.

 

[JemPD]

Yes. I sense a strong whiff of "White Man's Burden" over the whole thing. To me it looks like they see themselves as enlightened, benevolent and deserving of gratitude for accepting the heavy duty of raising us from the depths of our superstitions to see the light of the godliness of exercise and employment. They see us as childlike 'natives' in need of guidance and a firm hand, definitely not equals. If saving us from ourselves means lying to and about us, the end justifies the means as far as they're concerned. Though I suspect most of them have genuinely convinced themselves of their own story (many people have an astonishing ability to believe the weirdest things even in the face of all the evidence in the world to the contrary). Us not playing our assigned role threatens not only their financial interests and careers, it strikes at the heart of their identity as white knights.

Yes, i hadnt really thought of it like that before but that describes the situation perfectly.

I do think it's useful to consider the BPS/IAPT phenomenon in the context of a culture where moral and intellectual superiority is assumed, regardless of any evidence suggesting otherwise. I think some of the ways that culture has been shown to be unhelpful in other aspects of life can help us with our advocacy.)

Personally i think this most accurately describes the attitude & motive of the BPS gang, that is, for me, what fits best with what i witness.

 

[TiredSam]

With regards to psychologists, my sister-in-law is a psychologist, is one of the sweetest persons you'll ever meet and always has my best interests in mind. It still doesn't stop her from coming out with completely unhelpful bullshit.

I know two trained psychologists like that. Both as sweet as you could ever meet. I shudder at the harm they're doing.

To answer the question posed in the thread title, the BPS crew consider being subjected to the rules of evidence and the scientific method as an affront. They don't believe that it's appropriate for their field. They have to pay lip-service to it and even use it to their advantage when they can by doing a poor imitation of science with lots of politics thrown in, but basically they consider themselves exempt from the rules of evidence. Their subject just doesn't work like that. The scientific method takes no account of their intuitive brilliance and non-falsifiable theories, so it is lacking and should not be applied to their field. We can see this thinking in the fact that they believe their clinical experience (based mainly on deluding themselves and confirming their brilliance to each other) trumps a scientific review of all the evidence in the current NICE guidelines situation.

 

[Art Vandelay]

With regards to psychologists, my sister-in-law is a psychologist, is one of the sweetest persons you'll ever meet and always has my best interests in mind.

The road to hell is paved with good intentions.

 

[Woolie]

To answer the question posed in the thread title, the BPS crew consider being subjected to the rules of evidence and the scientific method as an affront. They don't believe that it's appropriate for their field. They have to pay lip-service to it and even use it to their advantage when they can by doing a poor imitation of science with lots of politics thrown in, but basically they consider themselves exempt from the rules of evidence. Their subject just doesn't work like that. The scientific method takes no account of their intuitive brilliance and non-falsifiable theories, so it is lacking and should not be applied to their field. We can see this thinking in the fact that they believe their clinical experience (based mainly on deluding themselves and confirming their brilliance to each other) trumps a scientific review of all the evidence in the current NICE guidelines situation.

No, I think they believe that anyone can dismantle any reasonable scientific conclusion if they nit-pick enough, and that the people doing that simply lack the skills to weigh the nitpicks against the evidence in favour. They, being experts, are of course adept at this.

But as you say, they do not understand the simple principle of falsifiability. Evey theory they come up with can be wrapped around any outcome, and thus there is no advancement in their ideas, they are still the same as when they first applied for funding for the PACE trial some 15 years ago.

I can't describe to you how much my own field of research and its theories have changed in the last 15 years. It is just a totally different landscape now. Yet the theory underlying PACE has undergone virtually no changes, except for superficial changes in the packaging and of course the patient population its levelled against.

 

[Solstice]

I know two trained psychologists like that. Both as sweet as you could ever meet. I shudder at the harm they're doing.

To answer the question posed in the thread title, the BPS crew consider being subjected to the rules of evidence and the scientific method as an affront. They don't believe that it's appropriate for their field. They have to pay lip-service to it and even use it to their advantage when they can by doing a poor imitation of science with lots of politics thrown in, but basically they consider themselves exempt from the rules of evidence. Their subject just doesn't work like that. The scientific method takes no account of their intuitive brilliance and non-falsifiable theories, so it is lacking and should not be applied to their field. We can see this thinking in the fact that they believe their clinical experience (based mainly on deluding themselves and confirming their brilliance to each other) trumps a scientific review of all the evidence in the current NICE guidelines situation.

I wonder how many diagnoses you could simply scrap if you were gonna look at the evidence behind it. DSMV might just be two pages long. I had to meet up with a psychologist to establish if I was lying about being sick for my benefits hearing in nl. Was a very long talk, asked all things about my youth etc. I told her I was a bit shy and quiet and didn't really stand up for myself aged 13 or something like that. Got instantly diagnosed with something I'd never even heard of. Not only that but she completely looked past my obvious ability to stand up to her when she made some bullshit assumptions.

 

[Solstice]

She did offer to fix me up for a reasonable fee by the way, which I guess is nice of her and not conflicting with the work she does for UWV(DWP in Britain?) at all.

 

[Mithriel]

It wasn't one of our usual suspects but I can't remember his name. He said "doctors will see them for what they are and will be disgusted by them."

One "amusing" Christmas article in a doctor's magazine, I think by the head of the ethics committee but I could be wrong, said the correct answer to give someone who consults you claiming to have ME is "Get out of my surgery you piece of pond life!"

That is how they think of us.

Off topic, but I wonder if all the secrecy around the NICE pause is becasue they do not want to give out any information that could be used by ME "terrorists"

In other processes that are meant to be transparent, like peer reviews, names have been withheld because of the risk to people who disagree with biomedical ME.