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.