Jonathan Edwards
Senior Member (Voting Rights)
I am probably not the person to ask. Maybe a patient or carer member might know.
UK: Physios for ME
- Thread starter PhysiosforME
- Start date
hotblack
Senior Member (Voting Rights)
Thanks. I assumed as you talk about the mechanisms of this relationship breaking down you may have some examples of it working beforehand.
My experience and all I have heard from other patients is that the problem is there regardless of what we do or say. I had hoped to hear otherwise so we may have somewhere to start.
Jonathan Edwards
Senior Member (Voting Rights)
I got the impression that some people found Amolak Bansal helpful and prior to that maybe Finlay but I don't know about severe cases.
Greatly appreciate your long-term engagement here, @PhysiosforME, and preparedness to listen and commit to the long term on all this. You have been leaders in that critical change in approach from the professional side. I don't want to in any way discourage you continuing down this path.
I know it is not always easy to hear the kinds of critique some of us are making. But it is so important these matters get thrashed out properly.
It is unfortunate that we do have to be so concerned at times with the language used, but the persistent and often deliberate misuse of words against us by some for so long is a huge part of how the wrong explanations and treatments have been allowed to become so entrenched and do so much harm.
Rehabilitation is definitely one such word. It needs to be handled with great care. There may even need to be consideration by the professionals about whether it is an appropriate word for ME/CFS, or if there is a need for a key change in clinical terminology to a more neutral and historically unburdened term to better reflect the currently harsh reality of a very limited understanding and lack of robustly demonstrated benefit from any rehabilitative approach, and the substantial and very serious risks from the wrong ones still being used within the health system.
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I know it is not always easy to hear the kinds of critique some of us are making. But it is so important these matters get thrashed out properly.
It is unfortunate that we do have to be so concerned at times with the language used, but the persistent and often deliberate misuse of words against us by some for so long is a huge part of how the wrong explanations and treatments have been allowed to become so entrenched and do so much harm.
Rehabilitation is definitely one such word. It needs to be handled with great care. There may even need to be consideration by the professionals about whether it is an appropriate word for ME/CFS, or if there is a need for a key change in clinical terminology to a more neutral and historically unburdened term to better reflect the currently harsh reality of a very limited understanding and lack of robustly demonstrated benefit from any rehabilitative approach, and the substantial and very serious risks from the wrong ones still being used within the health system.
This.
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Care to comment, Sir Simon, from your lofty secure position of such eminence and seniority on these matters? Or do you quietly approve of it?
Nightsong
Senior Member (Voting Rights)
Someone who has a rare form of true autonomic failure (i.e. pure autonomic failure or Shy-Drager syndrome / multiple system atrophy) probably needs to be somewhere like Queen Square. For POT/S cases I really do think terms like autonomic failure should be avoided. This is one of the problems with the use of the term "dysautonomia", by the way. We have seen the adverse effects of spurious EDS diagnoses; this is rather the same thing.
Paralysis is not included in any reasonable case definition of ME/CFS that I have seen.
I have certainly felt too unwell to move as a result of ME/CFS on many occasions - particularly as I have become increasingly severe - but that's not "paralysis". For me it feels like a cross between severe flu and migraine where you're just impelled to lie down and remain still. I could move; it's very painful & difficult, but I could. If that is what others are experiencing I would not use the term "paralysis" to describe it as it may be conflated with a very different phenomenon.
The phenomenon of pseudoparalysis - where the patient insists that a limb/limbs are completely paralysed but where they respond normally, involuntarily, to stimuli - is almost certainly associated with high-level, "mental", processes. It is typically thought to be associated with significant mental illness although whether there is any epidemiological evidence for that I have no idea (I doubt it). In the case of pseudoparalysis the diagnosis of FND is probably as accurate as you're going to get in an average NHS hospital; despite the changing terminology (hysterical paralysis, conversion disorder, pseudoparalysis, functional paralysis) it is clearly the same underlying phenomenon as in Charcot's day. Despite all the modern guff about predictive processing I doubt anyone really knows anything significant about these phenomena.
Unless you're a foreign national, having a cardiologist in another country would probably be considered a red flag by many in the NHS.
It is an intriguing but disturbing phenomenon that a "psychiatric" diagnosis like AN results in feeding support - as unpleasant as that can be for someone with AN - whereas a "functional" diagnosis results in abandonment.
On "rehabilitation":
Some level of rehabilitation may well be of use following a specific insult or injury: stroke, for example, or sports injuries, or spinal injuries, although I think its utility is probably overestimated. But if there is some ongoing process that is maintaining symptoms it may be worse than useless and the often intensely negative experiences of pwME seem to suggest that is the case.
I appreciate that "rehabilitation" can be defined more broadly but in terms of what the majority mean by the term in relation to ME/CFS it refers to CBT & exercise. And the only reason you'd want to use those for ME/CFS is if you believed that patients were just deconditioned and demotivated & needed to be convinced they're not really ill & jollied along.
In the current NHS clinics, "rehabilitation" for ME/CFS is just psychosomatics in a tracksuit.
Paralysis is not included in any reasonable case definition of ME/CFS that I have seen.
I have certainly felt too unwell to move as a result of ME/CFS on many occasions - particularly as I have become increasingly severe - but that's not "paralysis". For me it feels like a cross between severe flu and migraine where you're just impelled to lie down and remain still. I could move; it's very painful & difficult, but I could. If that is what others are experiencing I would not use the term "paralysis" to describe it as it may be conflated with a very different phenomenon.
The phenomenon of pseudoparalysis - where the patient insists that a limb/limbs are completely paralysed but where they respond normally, involuntarily, to stimuli - is almost certainly associated with high-level, "mental", processes. It is typically thought to be associated with significant mental illness although whether there is any epidemiological evidence for that I have no idea (I doubt it). In the case of pseudoparalysis the diagnosis of FND is probably as accurate as you're going to get in an average NHS hospital; despite the changing terminology (hysterical paralysis, conversion disorder, pseudoparalysis, functional paralysis) it is clearly the same underlying phenomenon as in Charcot's day. Despite all the modern guff about predictive processing I doubt anyone really knows anything significant about these phenomena.
Unless you're a foreign national, having a cardiologist in another country would probably be considered a red flag by many in the NHS.
It is an intriguing but disturbing phenomenon that a "psychiatric" diagnosis like AN results in feeding support - as unpleasant as that can be for someone with AN - whereas a "functional" diagnosis results in abandonment.
On "rehabilitation":
Some level of rehabilitation may well be of use following a specific insult or injury: stroke, for example, or sports injuries, or spinal injuries, although I think its utility is probably overestimated. But if there is some ongoing process that is maintaining symptoms it may be worse than useless and the often intensely negative experiences of pwME seem to suggest that is the case.
I appreciate that "rehabilitation" can be defined more broadly but in terms of what the majority mean by the term in relation to ME/CFS it refers to CBT & exercise. And the only reason you'd want to use those for ME/CFS is if you believed that patients were just deconditioned and demotivated & needed to be convinced they're not really ill & jollied along.
In the current NHS clinics, "rehabilitation" for ME/CFS is just psychosomatics in a tracksuit.
It may be useful to respond to use of the term "rehabilitation" every time with the question: "do you mean adaptation?".
NelliePledge
Senior Member (Voting Rights)
Spot on
obeat
Senior Member (Voting Rights)
Instead of paralysis are we really talking about a form of Bradykinesia or akinesia
Bradykinesia: This means slowness of voluntary movement. It is a core symptom of Parkinson’s. Everyday tasks take longer and lose amplitude.
[1] Akinesia/Hypokinesia: This refers to a lack of movement or a freezing of voluntary action. It makes starting a movement hard.
When I'm most unwell, I lie still for hours. I don't need to force myself to do this, it's a symptom.
Bradykinesia: This means slowness of voluntary movement. It is a core symptom of Parkinson’s. Everyday tasks take longer and lose amplitude.
[1] Akinesia/Hypokinesia: This refers to a lack of movement or a freezing of voluntary action. It makes starting a movement hard.
When I'm most unwell, I lie still for hours. I don't need to force myself to do this, it's a symptom.
Jonathan Edwards
Senior Member (Voting Rights)
I think that may be misleading. The term bradykinesia was almost certainly invented specifically to indicate an aspect of Parkinson's disease. It does not add any explanation to apply it to another disease unless we know the mechanism. Even in PD we know rather little about how it comes about.
In very severe ME/CFS there can be a complete inability to move, as Nightsong mentions. It is probably best just to call it that. I agree that paralysis is not a feature of ME/CFS.
But I think we my have to consider the possibility that people who are so ill they cannot feed themselves do not just have the process we think will be the basis of ME/CFS, but have another process as well. Which means that treating their immobility as 'a feature of ME/CFS' may not be helpful.
This is not so easy to explain but there are other situations where one disease can be associated with an extra form of pathology if there is another causal factor involved. One example is Kaplan's syndrome - lung nodulosis - which occurs only in people with RA who also have pneumosilicosis. For very severe ME/CFS there might be a separate risk gene involved. Where ME/CFS has risk genes CA10, OLFM4 and BTN2A1, maybe if you also have a variant of XYZ456 your ME/CS may be complicated by immobility. There are subsets of Parkinson's that are familial and have different features, I believe.
So rather than either sort of shaman's folklore that at present people argue over we need some serious clinical science.
obeat
Senior Member (Voting Rights)
Yes this makes sense.
Do we know if enough people with very severe ME were able to take part in DecodeME to be able to identify the genes once SequenceME is analysed?
Jonathan Edwards
Senior Member (Voting Rights)
Chris P has been rightly wary of further post hoc analyses. I think this may be an area for SequenceME to tackle. If there are variants that permit very severe ME/CFS to emerge they are quite likely to be rare ones with a big causal impact.
When the WHO is referenced in connection with Rehabilitation it is seldom referenced in full.
2024 statement
www.who.int
And it is rarely referenced alongside Patient Safety.
2023 statement
www.who.int
The latest example.
2024 statement
Rehabilitation
Rehabilitation is a set of interventions needed when a person is experiencing or is likely to experience limitations in everyday functioning due to ageing or a health condition, including chronic diseases or disorders, injuries or traumas.
And it is rarely referenced alongside Patient Safety.
2023 statement
Patient safety
WHO fact sheet on patient safety, including key facts, common sources of patient harm, factors leading to patient harm, system approach to patient safety, and WHO response.
The latest example.
This looks like a really valuable idea for further discussion. Can you start a new thread, perhaps in Possible causes and predisposing factor discussion so the discussion isn't hidden away on this thread.
Felis Catus
Senior Member (Voting Rights)
I'm wondering if the word was used to imply a sovereign state or not. I can imagine that someone living in e.g. Wales has private doctors in England.
MrMagoo
Senior Member (Voting Rights)
People in England wouldn’t refer to a Cardiologist as being in a different country if the cardiologist was in Wales or another UK nation. It would be kind of unusual, but possible, if the Cardio were in Ireland.
The NHS covers the UK and places like Isle of Man, Jersey etc wouldn’t be referred to a different country (because they aren’t).
hotblack
Senior Member (Voting Rights)
It’s maybe a bit off topic but NHS England is called that for a reason. There are four separately funded healthcare systems in the UK. And some people are quite passionate about the nation side of things. So I can see the general point.
Peter T
Senior Member (Voting Rights)
My cousins on the Isle of Man may sometimes see specialists in Birmingham, possibly privately, but they would talk about seeing a consultant in Birmingham, never in another country.
Technically the Health Service there is not part of NHS England.
MrMagoo
Senior Member (Voting Rights)
Yes sorry I wasn’t clear; they're not covered by the NHS but they are not in a different country.
hotblack
Senior Member (Voting Rights)
If anything is unclear and guaranteed to confuse it is the structures of the NHS!