MrMagoo
Senior Member (Voting Rights)
The letter is a real insight into what goes on in some people’s minds Isnt it. Wonder what set him off.
UK: Physios for ME
- Thread starter PhysiosforME
- Start date
re: unhelpful rehab programs
I am concerned with the potential and disproportionate overhead and opportunity costs in ME/CFS patient's time and energy, and separately our already battered emotional resources and goodwill, all of which are limited and unreliable for us.
I am concerned with the potential and disproportionate overhead and opportunity costs in ME/CFS patient's time and energy, and separately our already battered emotional resources and goodwill, all of which are limited and unreliable for us.
Last edited:
Nightsong
Senior Member (Voting Rights)
Re the Sivan letter - something I hadn't noticed before:
The RCP's (unofficial) policy isn't set in stone. Back when they submitted a draft for NICE CG53 it wasn't their policy, and it need not be their policy in the future. I'm not sure how advocates could help to change it, but it needs to change. There's no intrinsic reason for RCP to be wedded to a rehab model.
But what did he mean by:
Here's a question to always fall back on when it comes to these semantic debates about what "rehabilitation" actually means: what are they actually proposing to do with pwME? What interventions, specifically, are they going to use?
The answer seems to be "CBT and exercise", same as it ever was.
The obvious casuistry aside, I would be very happy indeed if RCOT & BP(sychol)S took a back seat. There's not much they can do for us. OTs could be helpful in providing equipment, reports etc but that is about it. He specified RCP twice; if he meant RCPsych the second time I'd be very happy for them to take a back seat too.
The RCP's (unofficial) policy isn't set in stone. Back when they submitted a draft for NICE CG53 it wasn't their policy, and it need not be their policy in the future. I'm not sure how advocates could help to change it, but it needs to change. There's no intrinsic reason for RCP to be wedded to a rehab model.
But what did he mean by:
Which charities? Sivan has been funded by MEA, I know; I'm not sure if he has any links with any of the others. I know they have some employees with these views (notably at least one member of their "H4ME" NHS liaison group) but is it really now MEA policy to support rehab for ME/CFS?
Here's a question to always fall back on when it comes to these semantic debates about what "rehabilitation" actually means: what are they actually proposing to do with pwME? What interventions, specifically, are they going to use?
The answer seems to be "CBT and exercise", same as it ever was.
The other posts are useful context thanks @Utsikt, the problem O see and my response to other posts is thst there is only one dictionary and commonly held definition for the word rehabilitation (see below).
If a professional group or individual wants to try to redefine or repurpose it that’s up to them but if they face confusion from the wider population they shouldn’t be surprised (@PhysiosforME seemed to recognise that in the BACME thread).
And if that same word, its commonly understood meaning and confusion itself have been used against people with a condition for years it seems at best clumsy and at worst damaging to use it, so pushback is unsurprising. We know that if they say rehabilitation swathes of other healthcare professionals and wider society will see one thing, we can get better if we try.
Okay so I checked OED and actually there are 11 definitions broken down jnto 3 categories. None match this described use by physiotherapists. All are about restoration, revival or reestablishment. On health and illness there is only one
If the profession means something else it should use a different word. Especially when referring to people with ME/CFS. I want to reiterate that @PhysiosforME have the benefit of the doubt from me here. But language matters, meaning matters and I do have concerns about the consequences of the post and more widely the conference. We need better than confused and mixed messages on rehabilitation. Especially from a group who aims to help educate people on ME/CFS and advocate for us.
Last edited:
Jonathan Edwards
Senior Member (Voting Rights)
It basically says "All I am interested in is empire building, not patients".
I would hope the crassness of the argument was not lost on at least some of the ~100 copied in.
Jonathan Edwards
Senior Member (Voting Rights)
For the simple reason that it is an integral part of a long term care policy. Rehabilitationists do not operate on that basis.
I had an interesting piece of information about a UK ME/CFS clinic. It has a waiting list of around 1000 and there are about 300 follow-up cases on the books. When I ran a rheumatoid arthritis clinic I have 500 follow-up cases on the books and a waiting list of maybe 3 cases at any one time. The ME/CFS clinic may be in a state of flux but it seems to illustrate the problem quite well. The figures should be similar to an RA clinic.
PhysiosforME
Senior Member (Voting Rights)
Hello all and thanks for some great points. I'm in my non clinical day job all day yoday amd tomorrow with an office move and a big two day online training course coming up so it will take me a while to respond as want to give the discussion the attention it deserves. Please bear with me. I'm not ignoring this!
They do seem to work on a treat and discharge basis which tells us everything about how the condition is seen and the lack of ownership and resulting lack of responsibility and accountability for us.
It’s been really illuminating seeing how PD charities work, the collaboration with the research world around it and of course how the NHS handles someone with PD. There are plenty of problems of course, people with PD deserve better than they often get, but a lot which could be learnt and is applicable to us.
Thank you! Look forward to hearing your thoughts. Good luck with the office move.
Chandelier
Senior Member (Voting Rights)
From Twitter / XCancel by Nicola from Physios4ME:
Dr Nicola Clague-Baker
@Nicolabake0lb0
1. I have a friend with severe #ME in hospital
Mod note: ..... details of Nicola's tweet have been removed as she has since deleted the tweet....
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
Last edited by a moderator:
Jonathan Edwards
Senior Member (Voting Rights)
It is always saddening to hear of yet another case just the same as the previous ones.
Clearly this person needs adequate feeding support, whether nasogastric or otherwise enteral.
I wish I had more details of these cases but I am not asked to be involved. My worry is that again there is an unnecessary tension. I suspect that the 'ward consultant' is faced with input from one or more physicians who make ungrounded analyses and recommendations. Autonomic failure does not produce episodes of paralysis as far as I am aware. IV saline is not in itself known to be useful, other than in overt dehydration. What are these medicines and supplements that have been withdrawn? The same issues come up every time.
There is a desperate need to reduce the antagonism based on a clash between biological folklore and psychosomatic medicine.
clash between biological folklore and psychosomatic medicine folklore.
MrMagoo
Senior Member (Voting Rights)
I was told at my last ME Clinic appointment that they are funded by the ICB for around 10% of the patients they see.
This was the justification regarding everything being group work- as the only way they can see so many on so little budget, plus of course trying to get the wait list down.
(I was previously the victim of unwanted attention by a male group member in a similar circumstance, thanks NHS, and furthermore, I don’t see why I should have to discuss my medical issues with 20 local strangers, we have data protection rules for a reason. In fairness, the consultant agreed these were good points and that he would prefer not to be running groups).
Yeah it's something I noticed and commented a few days ago. There is a "collegiality" here that makes it a career-ending move to point out that the emperor is naked and everyone who pretend otherwise are the real fools. Academia has become so reactionary that it's no longer capable of telling basic truths, and there is an additional layer from the health care industry where it's even more forbidden to say anything that isn't culturally approved.
It's not real collegiality, of course, it's conformity, deference to authority. Things have messed up so bad that appeal to authority isn't just no longer a fallacy, it's a requirement. We can see it plainly in the blatant refusals to update or learn anything about us. The idea is that if an idea is popular, it must be protected at all costs, unless someone is able to make a lot of money out of it. Only then does the herd follow.
Barry
Senior Member (Voting Rights)
The only kind of "rehabilitation" I could imagine for someone with ME would be to relearn how to live their life within the new constraints they find themselves bound by, but I don't really know if rehabilitation is the right word then, because it gives off the wrong signals. For ME it's all about adapting rather than recovering.
Felis Catus
Senior Member (Voting Rights)
I think I know this patient from an online group. I was wondering how they'd been and it breaks my heart to see this. It always does even when I'm sure I don't know the patient.
Fringe advice aside, the hospital team has a person who is apparently experiencing episodes of autonomic failure and paralysis. I believe you when you say that autonomic failure doesn't produce episodes of paralysis. But aren't 15 episodes of paralysis in a month enough of a reason to keep investigating what's going on instead of slapping an FND diagnosis and widrawing help? I'm shocked that any patient would be left in that state without adequate care.
Last edited by a moderator:
Agree it’s awful. I’m saddened but not shocked. It seems entirely unsurprising and routine within the NHS for people with severe ME/CFS. There is no excuse for it. It’s heartbreaking and terrifying.
I would be surprised to hear a story of appropriate care. I’m hopeful we can get there and make the NHS safe for us. But I just don’t know how given they won’t listen or admit the problems and the need to change.
I would be surprised to hear a story of appropriate care. I’m hopeful we can get there and make the NHS safe for us. But I just don’t know how given they won’t listen or admit the problems and the need to change.
Last edited:
Jonathan Edwards
Senior Member (Voting Rights)
Absolutely, but I can see that if the patient is convinced that it is autonomic failure because some physician has told them that, trust and constructive dialogue are likely to break down. I have no idea even what 'autonomic failure' is supposed to mean here, and I doubt anyone else does. So, yes, the task is to work out what the alternative explanation for the paralysis is. If the clinical picture indicates that it is likely to be due to higher level central nervous inhibition and imaging is normal then the term 'functional neurological disorder', if used in a neutral operational sense, may be entirely justified. What is not justified is the suggestion that the right way to deal with that is to withdraw support from the patient, presumably indicating that the FND term is also intended to imply a 'conversion disorder' type analysis.
Very severe ME/CFS is something that we do not understand at all. Not even the teeniest bit. At present we have two folklores, each insisting it is this or it is that. Neither has any idea. We need to start afresh.
@Jonathan Edwards have you ever seen or heard of trust and constructive dialogue from the NHS towards a severe patient? Maybe if it exists that would be somewhere we can start from. I asked about examples of good care before in the hope we could use one as an example of what good looks like and we couldn’t find any.