George Monbiot on ME/CFS, PACE, BPS and Long Covid

[rvallee]

One thing I noticed from this article, and it was obvious for a while but it really sunk in, is that I don't think there is any value in trying to reach out and get the public on our side. It will never happen before a breakthrough. The article has strictly kept within the insulated circle of people affected by ME/CFS, I have not seen it discussed or shared by anyone who isn't a pwME or a rare relative who cares. A lot of people have commented how they decided to share it on Facebook, where their friends and families are, and how almost no one gave a damn. We are completely un-peopled.

I see far more vitriol from casual onlookers, and especially from medical professionals, than any form of meek support. It seems to make people hate us even more, because it's a reminder of how nothing is being done about it, which makes people feel bad since they live in that society, and makes them want to bury it even deeper. They don't want to loop up. They only want to look down. Even more progressive types clearly don't care about disability issues, don't even want to hear about it.

So it's either legal, political, or somehow managing to breach the medical bubble. But of course those are all the same bubble: the political and the legal defer to the medical professionals as expert evidence, and the medical system has no independent oversight or accountability process.

At this point I don't even think that large scale mass suicide or something that shocking would make any difference. We could all drop dead and even most professionals would be glad for it, seeing it as the end of a fad, or whatever, oblivious to the fact that our ranks are continuously renewed because it's a common illness with common triggers and that it wouldn't put an end to the problem.

It's really all down to AI. Nothing else can even put a dent in the plot armor. There is no better nature to appeal to in the people and institutions here, they simply don't see us as real people. Everyone has a concentric circle of people and issues they care about, and we aren't even in the outer edges, we are in the void beyond that.

Edit: Also, related to that, denial, mockery and dismissal of Long Covid on social media is rising, it's the worst I've seen so far, and it's making things even worse for us. It is, in fact, very popular to crush us, more than ever. Also related: mind healing magic is more popular than ever, which clearly encourages the medical profession into embracing it further.

 

[obeat]

One thing I noticed from this article, and it was obvious for a while but it really sunk in, is that I don't think there is any value in trying to reach out and get the public on our side. It will never happen before a breakthrough. The article has strictly kept within the insulated circle of people affected by ME/CFS, I have not seen it discussed or shared by anyone who isn't a pwME or a rare relative who cares. A lot of people have commented how they decided to share it on Facebook, where their friends and families are, and how almost no one gave a damn. We are completely un-peopled.

Agree.

 

[Lou B Lou]

Pandas_to_utopia, who one must assume has at least looked at the e-learning, says this:



I wonder who the 'we knows work' is in the 21st century?

@Maat quoted:

Pandas_to_utopia, who one must assume has at least looked at the e-learning, says this:

This training module is ideological. You have patients who want very badly to think there is still something unknown that is physically wrong with them. There are, in fact, large numbers of patients who recover using CBT (shock horror) or brain retraining (based on Howard Schubiner) every year. This module was written by people who will never accept the mind-body link is relevant to them. It is not worth any doctor's time. The challenge of the 21st century is getting them to have some flexibility of thought and engage with treatments we know work. Monbiot is fuelling them. He has no basis to do so and makes them more entrenched. It's a huge shame. That module belongs in the bin.

The height of Dr arrogance - confidently pronouncing large numbers of recoveries without a scrap of evidence.

I bet that at the beginning of the 21st Century most Drs currently on Reddit were openly scoffing and sneering at their patients who ever mentioned they did meditation or yoga, or engaged with alternative therapies.

Now these Drs have positioned themselves as The Experts in 'mind-body' and position patients who want evidence of the claimed recoveries as ignorant and closed-minded clods.

Despite the fact that a great many ME patients HAVE done brain training recovery courses and NOT recovered or become far more sick. Surely the evidence that ME patients recover with CBT just doesn't exist.

Just another iteration of the Dr is always right and patients who question that are wrong. It never changes.
.

 

[wallfish]

That Pandas_to_utopia account is newly created. This is its only comment. It's probably not genuine.

 

[MrMagoo]

I know a registered Dr who publicly claims BR works. His name is Paul Garner.

 

[DHagen]

One thing I noticed from this article, and it was obvious for a while but it really sunk in, is that I don't think there is any value in trying to reach out and get the public on our side. It will never happen before a breakthrough. The article has strictly kept within the insulated circle of people affected by ME/CFS, I have not seen it discussed or shared by anyone who isn't a pwME or a rare relative who cares. A lot of people have commented how they decided to share it on Facebook, where their friends and families are, and how almost no one gave a damn. We are completely un-peopled.

I see far more vitriol from casual onlookers, and especially from medical professionals, than any form of meek support. It seems to make people hate us even more, because it's a reminder of how nothing is being done about it, which makes people feel bad since they live in that society, and makes them want to bury it even deeper. They don't want to loop up. They only want to look down. Even more progressive types clearly don't care about disability issues, don't even want to hear about it.

So it's either legal, political, or somehow managing to breach the medical bubble. But of course those are all the same bubble: the political and the legal defer to the medical professionals as expert evidence, and the medical system has no independent oversight or accountability process.

At this point I don't even think that large scale mass suicide or something that shocking would make any difference. We could all drop dead and even most professionals would be glad for it, seeing it as the end of a fad, or whatever, oblivious to the fact that our ranks are continuously renewed because it's a common illness with common triggers and that it wouldn't put an end to the problem.

It's really all down to AI. Nothing else can even put a dent in the plot armor. There is no better nature to appeal to in the people and institutions here, they simply don't see us as real people. Everyone has a concentric circle of people and issues they care about, and we aren't even in the outer edges, we are in the void beyond that.

Edit: Also, related to that, denial, mockery and dismissal of Long Covid on social media is rising, it's the worst I've seen so far, and it's making things even worse for us. It is, in fact, very popular to crush us, more than ever. Also related: mind healing magic is more popular than ever, which clearly encourages the medical profession into embracing it further.

Completely agree, with the exception that I don't think AI is going to save us and strongly suspect that the damage it causes will work even more to the detriment of pwME than to the rest of the planet, which is saying something.

 

[TiredSam]

One thing I noticed from this article, and it was obvious for a while but it really sunk in, is that I don't think there is any value in trying to reach out and get the public on our side. It will never happen before a breakthrough. The article has strictly kept within the insulated circle of people affected by ME/CFS, I have not seen it discussed or shared by anyone who isn't a pwME or a rare relative who cares. A lot of people have commented how they decided to share it on Facebook, where their friends and families are, and how almost no one gave a damn. We are completely un-peopled.

I briefly considered sharing it in a family group before deciding "What's the bloody point?"

 

[BrightCandle]

Completely agree, with the exception that I don't think AI is going to save us and strongly suspect that the damage it causes will work even more to the detriment of pwME than to the rest of the planet, which is saying something.

I view it as an unsolvable issue. There is nothing to do that hasn't been tried in the past 40 years. Even a pandemic that seems to have 10x the number of ME/CFS patients didn't improve things, it does appear to have actually made it worse. Nothing the current patients can do can come close to the opportunity the pandemic provided and people didn't care, they never will. The only hope we have is a treatment. We have to fund that treatment on no money with no help from those outside our community because they will not be helping us while they kill us off one by one with neglect, ignorance and abuse. Prejudice can not be legislated or government mandated away and ableism is so popular its repeatedly official government policy and ME/CFS patients are the bottom of the disabled pile.

I come to accept this was our reality a few years ago and it tightens the mind to what is possible and what should be done and where time and effort should not be wasted. Fixing the science is the only route forward, social acceptance will not happen before a eureka event occurs. Not least because we can't fight them until we have vastly improved functional capacity.

 

[neurophusion]

The overall theme of the Reddit thread and their fellow travelers: I do not really know anything about ME/CFS yet somehow I know everything there is worth to know about it so leave me alone.

Do these people have no foresight at all? Or any recollection of the history of medicine? Even if you want to classify ME/CFS as a psychiatric illness, we currently exist in a state where those with psychiatric illnesses were in the first half of the 20th century i.e. no effective treatments, ridiculed and dismissed, risked being locked up, experimented on with bogus fads, regarded as burdensome scum.

IIRC, basically every advancement in medicine, beyond careful clinical observation (which seems lost on the BPS proponents who struggle to comprehend even the basic characteristics of PEM), has been due to biological research and technology, even including psychiatric illness, at least when it lead to medications. Psychiatry would be largely useless without pharmacology.

There is evidence for CBT in some psychiatric illnesses but that evidence is almost as bad as the evidence for ME/CFS. In fact the controversy over CBT/GET for ME/CFS has made me question whether the entire evidence base of CBT for any condition should be viewed with strong suspicion by default.

The gross negligence of research into ME/CFS means there are no targeted treatments. We are not even afforded the minimal compassion displayed towards psychiatric illness in the modern age. The neglect and obstruction to any biological research which might lead to clues for medications is inhumane.

[Edit: Spelling.]

 

[wallfish]

I can understand the aversion to mandatory online training modules. All the ones I've had to follow (mostly anti phishing stuff) were a waste of time and the format felt like an insult to the intelligence of the audience. I can also understand that some doctor might believe a 'reputation' of pwMECFS... But I was surprised to find just one positive comment (from a doc) in that thread, and the negative ones highly upvoted.

I think it's the first time something like this has affected my mood, but it really has tonight. I've got some positive words (something like "Germany shows a change of public perception is possible"), but I still find it difficult to give these reactions a place.

 

[neurophusion]

Reddit has a reputation for being mostly a non-conservative, left-leaning echo chamber. So imagine how well received the George Monbiot article would have been amongst doctors on Twitter?

But let us not forget our pro- brain retraining friends over at r/mecfs, what do they think?

The moderator(s) of that subforum hated it and initially deleted it but the OP was representing.

 

[Sean]

"We know what the problems are and we know what many of the solutions are. We just need action from DHSC, NHSE, ICBs, Royal Colleges etc....
KR
Charles"

So, no hope then, in the UK at least, and more than few other countries too. It is beyond crystal clear now the the BPS cult has completely captured all levels of the profession and broader governance on this.

With some honourable exceptions as always, but they are not even close to having sufficient political weight to turn this around.

Sadly, even if we get a full biological explanation and cure tomorrow, the psychsomatic fanatics will just invent a bunch of reasons to justify them still interfering in our lives. We will have a functioal overlay, as a result of decade of having to survive it and its burdens. Etc.

Just look at how bad things are in the USA as an indicator of how absurd things can get with the cost of healthcare. They spend twice as much as any other country per capita without getting more.

They get worse care, on average. Their overall health stats are appalling for a supposedly world leading economy and technologically savvy, and the amount of money they spend on it all.

Edit: the CFS/ME clinics were set up in the UK in 2004/5 based on BPS model of management intervention while the PACE trial was being recruited!

They have been doing this since no later than the early 1990s. Long before they had even subject their claim to any trials, let alone produced a robust body of evidence for it (and they still have not).

This is way past mere failure. It is deliberate systematic and sustained corruption.

They. Don't. Care.

Their behaviour since NICE 2021 has put that beyond any doubt.

I think many psychobehaviouralists have been aware for a long time if not the whole time that they are selling a bag of magic beans. Nobody acts in the disingenuous way Miller et al did with that Maeve article or the BMJ paper if they think they are telling the truth. No-one puts their finger on the scale of guideline processes as ranty person and those who interfered with Cochrane did because they think their side is self evidently right. Nobody fiddles the outcomes halfway through a trial and tries to cover it up with fake stories of death threats and a refusual to release their data if they are confident in their results.

This.

There is nowhere left for them, nor anybody else, to hide. It is al so transparent and obvious.

The real question now is why is the rest of society so reluctant to stop the extreme harm they are doing? This is off the charts unprecedented levels of persistent wilful ignorance and inaction.

The “Stop doing all the things you do that are wrong” message needs to get out

Stop hurting us.

Something might happen to get it talked about nationally—I hope it does—but it feels as if the odds are against it. The ongoing stream of scandal, failure and malpractice doesn't seem to have the impact it used to, perhaps because people are facing so many disasters that it's hard to take it in.

Sadly, the times do not suit us getting a fair hearing, and prompt remedy to this situation. We are going to be among the first to get sacrificed when it suits those in power. To the extent there is much left of our lives to sacrifice.

 

[Sean]

Yeah recent years have really seen a full DARVO strategy, pushing the hypocrisy beyond its maximum.

It only shows how fully aware they are of everything they do to us, and seem to relish in the power it gives them over us.

Yep. Couldn't be any starker. They know.

Yet they keep getting away with it, and getting rewarded for it.

A lot of people have commented how they decided to share it on Facebook, where their friends and families are, and how almost no one gave a damn. We are completely un-peopled.

This.

Completely agree, with the exception that I don't think AI is going to save us and strongly suspect that the damage it causes will work even more to the detriment of pwME than to the rest of the planet, which is saying something.

Yeah, I don't have the faith in AI some might have.

Does it have potential benefits, particularly for major efficiency gains? Yes.

Is it going to deliver some magical insight and breakthrough? Maybe. But don't plan your life on it.

I view it as an unsolvable issue. There is nothing to do that hasn't been tried in the past 40 years. Even a pandemic that seems to have 10x the number of ME/CFS patients didn't improve things, it does appear to have actually made it worse. Nothing the current patients can do can come close to the opportunity the pandemic provided and people didn't care, they never will. The only hope we have is a treatment. We have to fund that treatment on no money with no help from those outside our community because they will not be helping us while they kill us off one by one with neglect, ignorance and abuse. Prejudice can not be legislated or government mandated away and ableism is so popular its repeatedly official government policy and ME/CFS patients are the bottom of the disabled pile.

I come to accept this was our reality a few years ago and it tightens the mind to what is possible and what should be done and where time and effort should not be wasted. Fixing the science is the only route forward, socially acceptance will not happen before a eureka event occurs. Not least because we can't fight them until we have vastly improved functional capacity.

The ferocious decades long smear job on us has been brutally effective. One of the starkest and cruelest examples of how effective ruthless shameless unrelenting DARVO can be.

In fact the controversy over CBT/GET for ME/CFS has made me question whether the entire evidence base of CBT for any condition should be viewed with strong suspicion by default.

Correct. The methodological failings and weak evidence for CBT's use in ME/CFS, particularly as a 'curative' treatment, are the same for almost all other uses of it.

It is one of biggest reasons for such resistance and hostility towards us and the profession having to face up to it all. If they have to accept and admit this gross failure for CBT's use in ME/CFS, they will have admit it for the rest of their claims about the benefits of CBT, and a whole lot more.

You can see the problem.

 

[Trish]

We are not even afforded the minimal compassion displayed towards psychiatric illness in the modern age.

Apparently we belong in a special kind of hell - not psychiatric, not physical, but psychosomatic = not real.

 

[Turtle]

Apparently we belong in a special kind of hell - not psychiatric, not physical, but psychosomatic = not real.

Adding we're activists, combatant, difficult even unlikable. All of us? We must be a different species.

 

[Utsikt]

In fact the controversy over CBT/GET for ME/CFS has made me question whether the entire evidence base of CBT for any condition should be viewed with strong suspicion by default.

It should be questioned. It suffers from the same flaws, particularly too high bias from combining subjective outcomes with no blinding. You have to pick just one.

 

[Midnattsol]

Do these people have no foresight at all? Or any recollection of the history of medicine? Even if you want to classify ME/CFS as a psychiatric illness, we currently exist in a state where those with psychiatric illnesses were in the first half of the 20th century i.e. no effective treatments, ridiculed and dismissed, risked being locked up, experimented on with bogus fads, regarded as burdensome scum.

Currently in Norway psychiatric patients have a about 9x risk of dying before 50 than the rest of the population, in 2019 it was around 7x. One cause is lack of care for somatic illness such as cardiovascular disease because symptoms are misattributed to psychological cause, and side effects of drugs such as weight gain is not taken seriously (and with increased weight comes the additional stigma in healthcare).

So much for holistic care and seeing the whole patients, that it's not just about the mind... a psych label quickly means even treatable somatic health concerns are left to grow.

 

[neurophusion]

Having to comb through BPS papers does not only frequently reveal fundamental conceptual and methodological problems, but fosters a sense that every single sentence, every single reference, cannot be taken at face value. Or as David Tuller described, the authors are often unreliable narrators.

Nearly every day there is another BPS paper being posted and mauled.

To those who still do it on a regular basis, I salute you.

I just want to be able to read a paper without having to act as a peer-reviewer. Citation errors seem common in academia. Authors often just lift references from other articles without double-checking. Now we have authors lifting references from AI prompts for formal publications without double-checking.

 

[MrMagoo]

It should be questioned. It suffers from the same flaws, particularly too high bias from combining subjective outcomes with no blinding. You have to pick just one.

There are plenty of other “anti-recovery activists” online who consider CBT to be pretty much coercive.

 

[Sean]

I just want to be able to read a paper without having to act as a peer-reviewer.

That would be nice.

Sadly, hard experience clearly demands the contrary – that any and all studies, especially in psychosomatics, should be regarded as a steaming pile of dishonest self-serving bullshit until otherwise proven.

I have been regarded by all who know me as a cynic since at least my mid-teens, even officially says so on my final school report, which I am actually kind of proud of.

Nothing I have experienced about the world since has done anything but reinforce the legitimacy and wisdom of that as the default position to all claims about reality and knowledge.