UK: Physios for ME

Chandelier said:
From Twitter / XCancel by Nicola from Physios4ME:


Dr Nicola Clague-Baker​
@Nicolabake0lb0​
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1. I have a friend with severe #ME in hospital ........​
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4. This is the reality for people with severe #ME in the UK and I'm sure around the world. Please change practice. Please educate your staff about #ME. @RCPhysicians@nmcnews @NursingTimes@TheBMA @thecsp@WorldPhysio1951​

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From Twitter / XCancel:


1. I deleted my post about my friend with severe ME as there were many responses disputing their symptoms and trying to work out who they are.​
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The message was being lost.​
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The suffering of people with severe ME in hospital in the UK is v real and unbearable.​
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Their treatment is inhumane, cruel and unbelievable.​
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How can this happen after so many years?​
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Because medics, nurses and hcps do not believe them.​
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We need to find a way to educate all staff asap maybe the solution is to pay all staff to learn about ME.​
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Money talks​

 
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I appreciate Nichola's desire to focus on the inadequate care but I don't think it will help 'educating' staff about 'ME' if what they get taught is the stuff circulating in advocacy groups. The situation is complicated but what I see as the crucial obstacle is the polarisation of views that leads to loss of trust and belief on all sides.
 
Unfortunately if it gets characterised as polarisation then some will just start arguing for a compromise middle ground, which is inevitably going to some perverted version of the biopsychosocial model, when clearly (as you frequently point out) the real answer is that at this stage we simply don't have any good evidence for any specific treatment and should stop advocating for any treatment until they are robustly demonstrated.

But nobody on either side wants to hear that. Difference is some of us can accept that it is the harsh reality, and a whole lot of others can't.
 
I’m with Nicola. It’s either educate or legislate. What’s the alternative? I say educate because the options are either that people don’t understand or they don’t care and I prefer to think better of people than being uncaring. Others disagree.

I agree there are no treatments and that is part of what needs to be taught, but it’s the attitudes, actions and inactions of the healthcare system that is the problem, full stop. How do we change that without educating people on what we know here and they seemingly do not? We suffer harms because of this and I’m tired of people saying anything other than an it needs to stop to an uncaveated way. I've said it countless times but the message doesn’t seem to get through. It doesn’t matter what we do or say as patients, we suffer in a way people with other conditions do not.
 
hotblack said:
How do we change that without educating people on what we know here and they seemingly do not?
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I m totally in favour of educating people on what we know here.

The problem is 'educating' people by telling them a lot of fairy stories about 'complex multisystem disease requiring multidisciplinary care' or mastodysautonomoEDSsyndrome with brain perfusion failure, endothelial dysfunction and so on. For a start we need education in ME/CFS, not "ME".

The reason why 'doctors in charge' do not take any notice of the 'education' at present is that it is all pretty much nonsense and it is not too difficult to see that.
 
hotblack said:
No it’s not. They ignore us whatever we say and whatever information we give them.
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I think that is a misconception. The 'S4ME view' on ME/CFS simply does not surface in the UK medical environment. All that anyone hears about is BPS dogma or ME folklore from the 'ME experts'. A sensible, neutral position on what is known never gets aired.

I have recently interacted with the 'doctor in charge' of someone with ME/CFS and they were quite receptive to what I was saying.

And if they ignore everything anyway, what is the point of trying to educate?
There has to be a shift in perception in the medical science community, and a shift towards real biology rather than the implausible mish-mash of ideas echoing like Chinese whispers from the old ME literature. It is hard to see how that can be achieved at present but I think the opportunity will arise fairly soon.
 
Jonathan Edwards said:
I m totally in favour of educating people on what we know here.

The problem is 'educating' people by telling them a lot of fairy stories about 'complex multisystem disease requiring multidisciplinary care' or mastodysautonomoEDSsyndrome with brain perfusion failure, endothelial dysfunction and so on. For a start we need education in ME/CFS, not "ME".

The reason why 'doctors in charge' do not take any notice of the 'education' at present is that it is all pretty much nonsense and it is not too difficult to see that.
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There is no right way to put it, though, so it doesn't matter much. It's been tried plenty, it makes zero difference. Same as being nice, makes no difference. Everything we say is always wrong anyway, that decision has been made long ago.

And the dominant models are even more nonsense, so sense isn't actually part of the equation. That's just an excuse for misbehavior that lacks a rational basis.

There are plenty of people saying it "the right way", and it has never made any difference whatsoever, because facts are irrelevant when facing an ideology.
 
hotblack said:
No it’s not. They ignore us whatever we say and whatever information we give them.
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Or whatever happens. Long Covid made it clear that facts are completely irrelevant here. The conversion disorder ideology simply matters more than hundreds of millions of lives. Hell, probably more than billions, as barring technological progress, this could go on for centuries and rack up a toll on this order.

It simply doesn't matter. We don't matter. Our lives are completely worthless to those systems, they made it very clear.
 
Jonathan Edwards said:
I think that is a misconception. The 'S4ME view' on ME/CFS simply does not surface in the UK medical environment.
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It’s not a misconception. The S4ME view is presented to doctors by many from within the community. And I and many others presented an entirely trusting and neutral position when first ill. But we still face neglect and mistreatment. Please don’t call that misconception.

My pushback is on the way in which misinformation and folklore among patients is always brought up when patients suffering and neglect is talked about.

Education is needed but in conjunction with something else. Because education alone does not seem to shift things. I thought it would but it hasn’t. Recognition and acceptance of being wrong is needed. Accountability is needed. For the medical profession to show some humility and try to rebuild trust. Someone needs to be responsible for making the changes needed or they won’t happen.

I hope you’re right and there are opportunities. And I hope you know how much I value that you try to find them. People may listen to you. There are plenty of times I’ve thought I’ve found a receptive audience only to find they were being superficially polite and ignoring everything.
 
Jonathan Edwards said:
I think that is a misconception. The 'S4ME view' on ME/CFS simply does not surface in the UK medical environment. All that anyone hears about is BPS dogma or ME folklore from the 'ME experts'. A sensible, neutral position on what is known never gets aired.
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Of course they do surface, plenty. Lots of people have written to journals, pointed out mistakes, corrected fraud like the PACE claims. The entire NICE process was done fairly and squarely, and they just cancelled it out. We were absolutely right about the Cochrane review, they just cancelled it all out. Not a single one of those "right" things have made any differences.

Everything single "right" thing we do gets dismissed just the same as any "wrong" one. It does not matter. We are far from the only sensible people on this, there are plenty saying all the "right" things and this has always been true going back decades. It never mattered. It still doesn't matter today, we have been completely dehumanized to the point where nothing that happens to us has any relevance.
 
rvallee said:
There are plenty of people saying it "the right way", and it has never made any difference whatsoever, because facts are irrelevant when facing an ideology.
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Where? Within the medical community I cannot think of anyone giving a plausible account of ME/CFS. You will not find it in lectures or textbooks or information sheets or videos (except of course for S4ME stuff). Where are people saying it the right way. Certainly not Bateman Horne or governent education sheets.
 
hotblack said:
The S4ME view is presented to doctors by many from within the community.
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But that is people with ME/CFS trying to persuade their GP or whatever. I am talking about education programmes.
hotblack said:
My pushback is on the way in which misinformation and folklore among patients is always brought up when patients suffering and neglect is talked about.
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I understand that jars but my perception is that it is a huge factor in these very severe cases. Almost all these cases in the UK have consulted the same physician. The same pseudo-biology comes up every time we see cries for help. More recently another physician has got involved, with a slightly different spectrum of pseudo-biology being quoted. The 'doctors in charge' see the patient's problems in terms of unhelpful beliefs and not so unreasonably if they have implausible beliefs. I am pretty certain this is the basis of the protection orders for children - the perception that unhelpful beliefs are distorting family behaviour. I suspect they are. It is the physicians who provide these beleifs that are the problem, but that gets forgotten.
 
Jonathan Edwards said:
Almost all these cases in the UK have consulted the same physician.
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Why do these pseudobiology physicians get contacted in the first place? Genuine question.

I keep wondering if patients and carers contact them because of the poor hospital care or is it the case that no one knows what to do and the hospital staff contacts patient's doctors hoping to elucidate the case? Or perhaps something else? Just explaining where my question comes from.

I have heard of ME/CFS patients leaving the hospital in a worse state than when they arrived, and they had no one external advocating for them.

I used to think having one of those prominent doctors involved would be a good idea but you've made me seriously doubt it. I wasn't impressed with an appointment I had with one of them either.
 
Jonathan Edwards said:
I understand that jars but my perception is that it is a huge factor in these very severe cases
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I can definitely see it being a factor in some cases. I just don’t think it’s a core reason for the systemic problems we see, it’s that implication that jars. Maybe we need to find a way of remembering or being clearer on that distinction? I have concerns that things get generalised too easily and are used by people as a reason to not take this problem and those failures seriously.
Felis Catus said:
I have heard of ME/CFS patients leaving the hospital in a worse state than when they arrived, and they had no one external advocating for them.
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i assumed that was the norm.
 
Jonathan Edwards said:
I am pretty certain this is the basis of the protection orders for children - the perception that unhelpful beliefs are distorting family behaviour. I suspect they are. It is the physicians who provide these beleifs that are the problem, but that gets forgotten.
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This still happens to people that just do pacing. Their stated reason for doing pacing might be wrong (like that your mitochondria are broken, that it will cause neuroinflammation, etc.), but their conclusion (we should pace) is still right.

So the children are take away because of the parent’s beliefs, not their behaviour. Which is some next level dystopian stuff.
 
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