Should those who pushed BPS theories be held to account, once the biological basis of ME/CFS is understood?

[V.R.T.]

This discussion has been split from
SequenceME - genetic study from Oxford Nanopore Technologies, the University of Edinburgh and Action for ME

At some point the penny has to drop with the medical world that this is a real disease of a particular sort. When that happens I see the lives of people with ME/CFS being transformed even if specific treatments are still to be found.

I hope you are right about this. My concern is that the medical world has been so thoroughly captured by the BPS argument that it will refuse to see the truth until there is an effective treatment. The amount of harm medical professionals would have to own up to is completely mind warping - it would flip people's ideas of themselves and of medicine as a positive force for good on it's head. They might need something they can do to help us improve before they can be persuaded that we really are sick, as illogical as that is. Otherwise their worldview is at stake, and people fight reality tooth and nail to defend their worldviews.

And from a bitter, selfish point of view, while I would very much welcome the sort of change you describe, and the safety and recognition it would bring us, my life has already been completely razed to the ground by their ignorance, and I am far from alone in that. Nothing short of a treatment that lifts me out of severe MECFS can give me a tolerable quality of life.

For these reasons I really hope that SequenceME points us rapidly to treatments in something like the fashion you describe in your last paragraph, and that we have talked about before.

I've been thinking a bit about the Baricitinib trial in the last couple of days. Eli Lily didn't need anything more than a bit of evidence that it might work for LC in order to dive straight into a phase 3 study. The kind of evidence SequenceME might provide could well give many pharma companies much more reason than what EL went off with Bari to think there is a rationale for certain drugs in MECFS and LC, even if they don't immediately stake it all on phase 3. And there would be a much higher chance that those drugs would work than there is for the Bari trial.

 

[Jonathan Edwards]

Otherwise their worldview is at stake, and people fight reality tooth and nail to defend their worldviews.

There is no doubt that we have seen this. However, I sense that there may be a change in the belief system in medicine rather as there looks like being one for life in general. We now live in a world where people are asking if anybody has a clue as to what we are trying to do to ourselves all the time. We also live in a world where getting anything done depends more on some list on a computer screen than any rational thought. People are getting used to the idea that things change in ways nobody would have credited.

We no longer use money, cheques or landlines. Lot of people no longer use gas or even petrol.

The sort of teaching sessions we used to have in medicine where seniors guided juniors into certain ways of thinking don't occur any more. It is mind-blowing. There are no clinical Division of Medicine Seminars now at UCLH. The venue where I presented the crimes of the PACE trial not so long ago has vanished. Juniors are just online all the time, both in clinic and when learning for exams.

Things do seem to most often change around treatment protocols, but I sense that despite all our pessimism things hae actually changed a lot. In 2014 if you wanted to be a member of the UK CMRC research collaborative you had to agree not to criticise psychiatrists - who were able to stand up and abuse patients in public. I have not seen a psychiatrist at an ME/CFS meeting or committee for about five years now. The rehab people who may have taken over don't actually have any theories to put in textbooks to teach young medics. However limited the NHS e-learning module may be, it is roughly on message.

 

[Utsikt]

I hope you are right about this. My concern is that the medical world has been so thoroughly captured by the BPS argument that it will refuse to see the truth until there is an effective treatment. The amount of harm medical professionals would have to own up to is completely mind warping - it would flip people's ideas of themselves and of medicine as a positive force for good on it's head. They might need something they can do to help us improve before they can be persuaded that we really are sick, as illogical as that is. Otherwise their worldview is at stake, and people fight reality tooth and nail to defend their worldviews.

While I agree with your analysis, I also think another factor will be at play: wanting to be perceived as being right in the present.

I think we’ll get a long way towards the goal by letting all of the ignorant people have a way to save face. Just let them turn based on the new direction of the wind.

Then we can go hard for the zealots and have them cast out of their temples.

 

[V.R.T.]

I think we’ll get a long way towards the goal by letting all of the ignorant people have a way to save face. Just let them turn based on the new direction of the wind.

I think this is sensible. Emotionally, however, it might be difficult for some of us. My GP who first falsely convinced me of a psychobehavioural element to my symptoms was probably more ignorant than a zealot, but it would be hard for me let him off the hook for the damage he caused. Even though rationally I know that he got his false information from the BPS framework, and that the BPS crew are ultimately at fault, it wasn't Simon Wessely who sat me down and talked to me about the mind body connection, it was Dr X, my GP who I trusted. And if I saw Dr X trying to pivot to a position of 'MECFS is real and devastating' on Bluesky or X (if, hypothetically he was on socials), I might not be able to let him pivot without saying something.

And a lot of ignorant doctors will have at least one patient like me, sadly.

 

[Kitty]

My GP who first falsely convinced me of a psychobehavioural element to my symptoms was probably more ignorant than a zealot, but it would be hard for me let him off the hook for the damage he caused.

I agree, but it's a different thing the community allowing them an off-ramp than individuals who've been harmed. The process always leaves residual anger, but at least it may stop some of the current harm and make it less of a risk in the future.

 

[V.R.T.]

I agree, but it's a different thing the community allowing them an off-ramp than individuals who've been harmed. The process always leaves residual anger, but at least it may stop some of the current harm and make it less of a risk in the future.

Oh no I get it and I agree, I'm just saying we have a community full of individuals who have been harmed by individual doctors, and some of them will be compelled to publicly say 'X doctor did Y to me' once they are likely to be met with support as opposed to ridicule and disdain. Which might complicate things.

Stopping the current harm is absolutely more important than any individual grudge though, I agree. That should absolutely be the community position. But the nastiness borne of ignorance people have gone through can be quite extreme, and the harm can be extreme too. And very hard to move on from if you don't have a life left.

 

[PeterW]

I agree, but it's a different thing the community allowing them an off-ramp than individuals who've been harmed. The process always leaves residual anger, but at least it may stop some of the current harm and make it less of a risk in the future.

Sadly I doubt there will ever be suitable redress or justice for the harm which false classifications of ME have done to people.
That appears to be the same for victims of the contaminated blood scandal, for victims of the Post Office scandal, and many other similar issues.

My conclusion is to move as fast as possible to close-off the cause of the abuse to minimise ongoing impact, but the past will never be fully compensated, I fear.

On a side note, I am thrilled that the ME Association is doing do much to publicise the Sequence ME news, but I wish the would acknowledge Action for ME's role in achieving it. We should all have the same objectives in this space, and failing to recognise someone else's achievement for the common good doesn't look great.

(Mod note: Copied post, we have greyed text not relevant top this new thread)

 

[V.R.T.]

Sadly I doubt there will ever be suitable redress or justice for the harm which false classifications of ME have done to people.
That appears to be the same for victims of the contaminated blood scandal, for victims of the Post Office scandal, and many other similar issues.

My conclusion is to move as fast as possible to close-off the cause of the abuse to minimise ongoing impact, but the past will never be fully compensated, I fear.

You may well be right, but you are wrong to classify it as the past. It is the present for me, as someone who went from mild to severe as a result of gaslighting and medical negligence. Every moment of my life is defined and constrained by it, and will be until there is an effective treatment (or I die). This is true for every one of the countless people who permenantly deteriorated because of the harm caused by doctors and psych professionals. It is also true for the families of those who died of or with the results of that harm. They will live with the results of it and the absence of that loved one for the rest of their lives.

I understand the wish to classify it as 'the past' and make peace and move on. I understand that people who cause systemic harm rarely face justice. But none of that changes the fact that I barely have the capacity to type this, or the fact that my loved ones have to make my meals and do my laundry. The harm is not consigned to the past: it is ongoing and it is all encompassing.

 

[neophyte32]

You may well be right, but you are wrong to classify it as the past. It is the present for me, as someone who went from mild to severe as a result of gaslighting and medical negligence. Every moment of my life is defined and constrained by it, and will be until there is an effective treatment (or I die). This is true for every one of the countless people who permenantly deteriorated because of the harm caused by doctors and psych professionals. It is also true for the families of those who died of or with the results of that harm. They will live with the results of it and the absence of that loved one for the rest of their lives.

I understand the wish to classify it as 'the past' and make peace and move on. I understand that people who cause systemic harm rarely face justice. But none of that changes the fact that I barely have the capacity to type this, or the fact that my loved ones have to make my meals and do my laundry. The harm is not consigned to the past: it is ongoing and it is all encompassing.

You can't find peace when you've been in a severe psychiatric ward after major medical abuse. Mine lasted two years. My body endured antidepressants (which gave me POTS), sports, physical therapy, CBT, and therapy... for nothing. I was mild, with panic attacks during exertion and tetany if I pushed myself too hard during a race. How could a doctor believe it was psychological?

Anyway... no peace with them. Every second is torture for me, my wife, my mother, and my two children.

 

[rvallee]

I agree, but it's a different thing the community allowing them an off-ramp than individuals who've been harmed. The process always leaves residual anger, but at least it may stop some of the current harm and make it less of a risk in the future.

Future harm is the main reason why no one can be left off the hook. The starting position should actually be maximalist, demanding major accountability, including severe punishment for those who failed at their job and giant amounts of compensation for millions of us who were wronged, had our so-called "human rights" systematically violated.

Because otherwise it will just continue to happen. For others with other illnesses, but also for most of us. Those systems won't turn on a dime and do the right thing, they will have to be made to, by (administrative/legal) force. Humans never learn from mistakes, we only learn when there are consequences. And those weren't mistakes, but conscious, intentional failure in the pursuit of an insane ideology. The penalties must be epic, something to remember for all of history. Not that it will succeed, but anything less will only encourage more future harm.

Now, this derails the discussion so I'll leave it at that, but the idea of moving forward is simply not realistic. Systems that have failed miserably for this long need to pay a major price for their crimes. And they are major crimes. If we could trust them to do the right thing, sure, we could more forward, but that will never happen, so a maximalist position should be the firm starting point, anything less would be irresponsibly lenient in the face of Great Evil.

 

[Sean]

At some point, and we are not there yet, there must be some robust exposure of and accountability for what has happened.

Otherwise it will happen again.

 

[Liie]

Maybe we can draw parallels to the replication crisis in behavioral psychology. Some of the worst pushers of bad science got named and shamed, some things got retracted, and some people even lost their academic positions.

We can hope that at least a little bit of something similar will happen to the BPS researchers eventually.

In general I think it might be a good strategy to get the attention of places like Retraction Watch, which could help to alert the broader scientific community to the lack of quality in the BPS research. They wrote a little bit about PACE a log time ago, and a little bit about Cochrane.

A while back I mailed them about the infamous Knoop study where they hid their null actigraphy results, but they didn't want to write about it. I can't blame them: they have oceans of bad science to write about.

 

[BrightCandle]

The consequences of the gaslighting and abuse of patients is the loss of millions of quality adjusted years of life and thousands of unnecessary deaths. Many have been done since the guidance changed which your average GP and doctor will refuse to even read let alone follow. The size and scale of this scandal is so enormous and its been going on for so long that the amount of compensation owed for crimes against humanity is beyond the states ability and world wide its a staggering loss of human capacity.

There is no justice in this world and I know that. When the wind has changed I will out every Doctor who abused and gaslighted me with transcripts and recorded audio, that is happening because what has been done to me is a crime, a systemically enforced crime. If I die you will see it 2 weeks later on an automated kill switch. Nothing has changed for me, I am treated worse now than I was a decade ago I see no winds of change in medicine at all. The lack of doctors reading the guidance and doing the training proves they will not change without being forced. Justice for the harmed is the best way to force this.

 

[Trish]

I'm not sure why finding a biological basis is necessary or would make any difference.

Their own research, if they interpret it honestly, shows the BPS favoured treatments, CBT and GET don't work and make significant numbers sicker. And these days most of them probably accept there is a biological basis but still think we can recover by changing our behaviour, see for example BACME in the UK.

If we try to hold to account the PACE triallists and their supporters and imitators, they will just say they weren't researching currently defined ME/CFS, or whatever. They will wriggle out of it.

 

[V.R.T.]

I'm not sure why finding a biological basis is necessary or would make any difference.

Their own research, if they interpret it honestly, shows the BPS favoured treatments, CBT and GET don't work and make significant numbers sicker. And these days most of them probably accept there is a biological basis but still think we can recover by changing our behaviour, see for example BACME in the UK.

If we try to hold to account the PACE triallists and their supporters and imitators, they will just say they weren't researching currently defined ME/CFS, or whatever. They will wriggle out of it.

I think this is pessimistic. They can attempt to wriggle out of it but at present the idea that they might be right is very prominent and once they are proven definitely wrong it will be hard for them to wriggle out of it. It will be obvious to the public what they have done.

 

[Turtle]

I'm not sure why finding a biological basis is necessary or would make any difference.

Their own research, if they interpret it honestly, shows the BPS favoured treatments, CBT and GET don't work and make significant numbers sicker. And these days most of them probably accept there is a biological basis but still think we can recover by changing our behaviour, see for example BACME in the UK.

If we try to hold to account the PACE triallists and their supporters and imitators, they will just say they weren't researching currently defined ME/CFS, or whatever. They will wriggle out of it.

They have to wriggle fast though, saving face by scooping off the layers of egg won't work anymore.
Many of them knew for years.

Who of the earlier BPS crowd said: "a third would get better anyway, a third might get better and another third would not get better"?

I'm still doing the quotes the Dutch way, sorry I can't find the right way, you'll get it.

 

[bobbler]

You may well be right, but you are wrong to classify it as the past. It is the present for me, as someone who went from mild to severe as a result of gaslighting and medical negligence. Every moment of my life is defined and constrained by it, and will be until there is an effective treatment (or I die). This is true for every one of the countless people who permenantly deteriorated because of the harm caused by doctors and psych professionals. It is also true for the families of those who died of or with the results of that harm. They will live with the results of it and the absence of that loved one for the rest of their lives.

I understand the wish to classify it as 'the past' and make peace and move on. I understand that people who cause systemic harm rarely face justice. But none of that changes the fact that I barely have the capacity to type this, or the fact that my loved ones have to make my meals and do my laundry. The harm is not consigned to the past: it is ongoing and it is all encompassing.

I notice hugely the difference in having a little gap of potential to be able to survive to the future when the terms from MOnaghan being used were 'scandal' vs when it slowly started being able to be twisted back into 'stigma' regarding people's situation. That's a point I'd like to discuss

The following has been posted on fb


This piece if someone else can read through too - I've had to pause half-way through for now, because it isn't just a scan for overall meaning one, but I feel like most paragraph almost there is a point I want to highlight about how 'on that message' they nailed the tone and angle and so it would be good to dissect this and analyse to perhaps show people how writing x in that way vs another way has implications, particularly when these slowly pile up to a bigger picture.

It will help I think to do this to try and start making us look as a community on the same page.

and I think has very important wording on this from an accuracy point of view in being frank about 'what happened' without the slow changing of the 'who did what' in order to make people feel better intentions but not then understanding but by doing that it wasn't about the former trying to place blame but how important it is that the patients who are now somehow yet again ending up the ones being left most vulnerable, having been often the ones where they are due to being at the brunt of the prrevious regime, are then the ones not really covered safety-wise in the going forward bit.

I'm all for making sure 'future generations' don't suffer what we have. But actually our group includes future generations - because a lot of those in the most brutal positions were young and therefore most vulnerable power-wise to the full coercion and implementation of these 'great ideas' from the very start and the full lenght of things.

They didn't have any career and chance to build a family before it happened or build finances and importantly the reputation that those who get it later than become ill migth have that keeps them slightly more safe from being told that what is crushing symptoms particularly when combined with how the society around them are incited to be is 'our personality'.

 

[bobbler]

I'm replying now because I couldn't agree more from a professional/marketing point of view, not just an 'as a patient' one that this fallacy of rewriting history is a naive error that has been repeated over lots of years, but in particular feels like part of what might have been going on (given it still hasn't moved yet where those less ill or employed to advocate changed things to ensure severe/very severe were directly let into the process and it was designed around making sure their voice and energy to contribute that wasn't then unappreciated and just dismissed because we'd never have the energy for those just arguing back and taking it into another round) in that change I've felt in the gap between the new guidelines and then where we are now in implementation in the last few years.

I think it sort of necessarily does need a kind of 'stream of consciousness' approach and then expand and interrogate those thoughts and build on them. Not just because of illness but because these insights only come that way, as there are a lot of points in messaging where something nails it vs what we've seen before and then you have to work out the detail with time. So yes I'm just throwing out things that have been 'hanging around' or crop up in the hope at least they won't get forgotten.

I'm writing this when pretty ill and from a tone point of view it is concern that this discussion has been begging, it has come up again and for once I don;t think we should let it pass (as one of the 'too hard' things because it involves pushing through what looks like disagreement into the nuance of where I'd assume most who get it probably agree) and I'm hoping a few of us can take it seriously and slowly move it forward - it might be we want to brainstorm some concepts on a members only thread to then have a more public thread once we have used such back and forth to perfect up terms or words to get it across well without the 'taking offence' from misunderstanding thing. And probably slowly and bit by bit as we think on things and collect the stuff that seems to get it right.

 

[bobbler]

I have been there in thinking yes we need to be careful not to just be all blamey or whatever but on the otherhand putting truth to one side completely well it isn't about 'strategy' I'm afraid it is about how hard it is to draw that line and get nuance combined with squeamishness or some other term that we need to discuss here to put our finger on and ask those in that position to truly ask themselves deeply what it actually really is stopping them so they can understand it in themselves.

There is also a fear issue because I can't be the only one conscious of the contentiousness at best of sharing too many things that look overly political or critical. And how that might impact further what little help or problems we might get thrown at us. And it's not like that isn't because it doesn't exist.

It is very hard to articulate without a lot of work on thinking that those of us most ill are trying to do from our observations because those not stuck with the effects of it will see the issue less probably because as you say they aren't getting it all the time as a live issue. In a way I can't be the only one who needs to use words to work out what it is I can't put my finger on as a form of thinking out loud/talking it out.

Noone, or not many certainly of those in this more severe group are talking about confrontation, being angry or compensation as the main aim of this so that is not a correct interpretation of what most are pointing out or asking for compared to the absolute need that the issues of what have gone on aren't sanitised and turned into a ban of 'don't talk about the war' that means those injured by it instead of being able to be understood how much of a problem carrying on not realising our threshold is what we say it is (and therefore deteriorating us more) isn't about 'us being responsible for the state we are in' or 'the illness doesn't get this bad so it must be something else' and so on.

But it's valid and not to be ruled out, and by taking that which is actually part of the fair then people start asking 'why not' and the next level of message - safety going forward for those harmed just whne they access services etc - becomes also left and they don't have a path forward, what they've been left with becomes 'their responsibility as if it is their mis-management' even if they wanted to avoid asking for things and be left with doing the best of the struggle themselves it leaves them still open to people standing over them thinking they are pathetic just for 'being in that situation/letting yourself get there/not having planned for' because people don't realise how the past regime took away often the things that they also did that laypersons do that would/should have given them a back-up should bad things happen (like pensions or insurance - but then you have to have not been so ill before you could do that). So that's a tricky topic to discuss.

There is at least a level where not even getting back what might have been a should have is one thing but people not knowing that is why you 'don't have' even if you don't get it back or fight for it is very different to not mentioning it and everyone thinking you either have it like others might or if you don't then it was because you didn't plan vs the pattern of situations that the ideology blocked paths of access to what people assume someone might have.

 

[bobbler]

But I agree there is a line out in the real world about not everything being high drama/emotionally hard for laypersons to read as they turn off. Which makes it difficult to live with being more severe because your daily 'what you are in' becomes too much for others too hear. So I think we are all only too aware of the issue of compassion-fatigue because we edit our existence daily and that's probably why I have caution about using certain things carefully and gently so we don't end up with people just pressing ignore/hide or whatever

It has to be used very consciously to make sure people don't think every post in relation to the illness is going to be emotionally exhausting. I can think of other areas where I couldn't that day for example watch a story of an animal in a bad situation that would make me sad or be a lot even if there was a happy ending (example chosen so I didn't have to compare to other human things), we all do it.

There is also the thing of most of us wanting to be seen as more, rightly than either tragic stories or despite adversity when we've all insight to offer that is beyond that slot we can end up getting heuristically bunged into if not careful and it's hard to work out a way to get beyond that too.

So I guess that is another discussion point for 'in an ideal world if we were in control as a whole community of overall messaging people received' type thing.