UK: Physios for ME

[Utsikt]

@Immunert can you elaborate on what you mean by «rehabilitation»? I’m not able to understand what you’re referring to by your post.

It is clear from this website that there doesn’t seem to be any consistent core disease process underlying our symptoms.

What gave you that impression? Not having found it yet doesn’t mean that it doesn’t exist. DecodeME and other recent analyses of old studies point towards neurological processes as an example.

I think the doctors who want to keep testing us for anything and everything, often with tests that aren’t validated, tell us biological explanations that aren’t supported by the evidence, and want to pump us full of medications without any evidence should have less of a role in our care.

I think everyone agree with this, but this just describes bad healthcare in general. I don’t understand what it has to do with rehab.

 

[MrMagoo]

What was your “training in rehab”? Was it to the same level of rehabilitation professionals? Do you consider yourself a rehabilitation professional? I’m someone who has benefited a lot from rehabilitation. My physio and OT seemed to be the only healthcare professionals who really listened to me, believed my experiences, challenged me when needed, and had anything to offer that actually improved my symptoms and my quality of life. I think the way you are talking about rehabilitation professionals is a bit demeaning and you seem to be using this “training in rehab” to make yourself as or more credible than the actual rehab professionals. Also, the NHS rehabilitation services are not going to be the same as rehabilitation services in other countries.

I find it concerning that many people on this thread are advocating for rehabilitation professionals to not be involved in our care. If you don’t like rehabilitation, don’t want to do rehabilitation, don’t believe it will be helpful to your care, etc then just don’t see a rehabilitation professional. People who want rehabilitation should be able to access it though. It is clear from this website that there doesn’t seem to be any consistent core disease process underlying our symptoms. Since our symptoms severely limit our mobility and function, rehabilitation professionals are going to be some of the best clinicians positioned to help us. I think the doctors who want to keep testing us for anything and everything, often with tests that aren’t validated, tell us biological explanations that aren’t supported by the evidence, and want to pump us full of medications without any evidence should have less of a role in our care.

Jonathan Edwards

me-pedia.org

He can have his opinion, you can have yours. All are valid.
Physios for ME are actually concerned about the use of the word so it’s a useful discussion.

We all bring our own experiences, not all of one ‘job title’ are good or bad. We have the same discussions about
- nurses
- GPs
- Neurologists
- physios
- rheumatologists

 

[bobbler]

What was your “training in rehab”? Was it to the same level of rehabilitation professionals? Do you consider yourself a rehabilitation professional? I’m someone who has benefited a lot from rehabilitation. My physio and OT seemed to be the only healthcare professionals who really listened to me, believed my experiences, challenged me when needed, and had anything to offer that actually improved my symptoms and my quality of life. I think the way you are talking about rehabilitation professionals is a bit demeaning and you seem to be using this “training in rehab” to make yourself as or more credible than the actual rehab professionals. Also, the NHS rehabilitation services are not going to be the same as rehabilitation services in other countries.

I find it concerning that many people on this thread are advocating for rehabilitation professionals to not be involved in our care. If you don’t like rehabilitation, don’t want to do rehabilitation, don’t believe it will be helpful to your care, etc then just don’t see a rehabilitation professional. People who want rehabilitation should be able to access it though. It is clear from this website that there doesn’t seem to be any consistent core disease process underlying our symptoms. Since our symptoms severely limit our mobility and function, rehabilitation professionals are going to be some of the best clinicians positioned to help us. I think the doctors who want to keep testing us for anything and everything, often with tests that aren’t validated, tell us biological explanations that aren’t supported by the evidence, and want to pump us full of medications without any evidence should have less of a role in our care.

I see lots of questions to others here, but missing specificity in what you say. Which is a bit out of kilter with a conversation that notes the issue is about the term 'rehab' being used with ambiguity causing large amounts of harm. The discussion itself is about what is and isn't mean by 'rehab'

Perhaps it would help to have some detail about what condition/issue that you had that was addressed by whom with what - and if you have ME/CFS whether it was worsened and/or that had to be very carefully worked around as part of that. Given the discussion talks about the situation where eg someone has an operation for something non-ME/CFS related and working out how advice on that could be 'made safe' with better understanding of the risks of such when someone also has ME/CFS then that detail would be the type of relevant detail to include if wanting to be part of a discussion that could help going forward.

VS the historical evidence of what harm is done when people errantly based on no evidence decided to put a large number of pwme through rehab leading to a large number being made a large amount worse - you might want to look up the parliamentary debates from 2018 onwards if you haven't availed yourself of these for example.

All I get from this so far is that you are someone who for some reason that is not detailed other than 'I'm someone who has benefited a lot from rehabilitation' which is a very general statement and who isn't happy with someone else saying something they would deem as negative about the usefulness of rehab. SO what is the more specific details of what specific treatment you had and for what that you'd like to proffer?

I'm also confused at how you could have read much of s4me and come to some of the assertions that you make as they contradict what anyone would have read so maybe it is the odd page here or there? feel free to point to where this is written with a link?

You say things with a lot of assertion and confidence in tone 'since our symptoms.... are going to be some of the best positioned' but without understanding that eg there is an evidenced history of those having been the reason for increased disability by doing an approach that they seem to demonstrate they do not want to change, ergo if that attitude continues then whatever else they might think they are or offer then it is frankly the opposite. So if you have found an individual who did something different then please detail it, because it seems talking in those generalities based on one individual experience you haven't detailed is non sequitur currently.

 

[Sean]

If you don’t like rehabilitation, don’t want to do rehabilitation, don’t believe it will be helpful to your care, etc then just don’t see a rehabilitation professional.

Do you not know that it is often forced upon patients, literally, or as a particularly nasty form of blackmail in order for the patient to be granted even the most minimal level of material support?

 

[neurophusion]

FYI
The “Mediterranean diet” which was studied contains a small to moderate serving of white wine as a daily component, by the way.

But according to a CBT training video featuring Trudie Chalder and Clare Geralda, it is normal for a CFS patient to drink 2 pints of beer every night and binge drink on weekends. Are you suggesting that people with ME/CFS might not have an unhealthy alcoholic intake? /s

DISCUSSION: Simon Wessley replies

From SW 12 Dec 2012 and the Countess replies: Dear Lady Mar May I ask, genuinely respectfully, am I writing to you, or am I writing to all the internet? When you wrote to me, you said it was an “open letter”, and indeed, it appeared on the internet as you sent it me Personally, I don’t...

forums.phoenixrising.me

 

[MrMagoo]

But according to a CBT training video featuring Trudie Chalder and Clare Geralda, it is normal for a CFS patient to drink 2 pints of beer every night and binge drink on weekends. Are you suggesting that people with ME/CFS might not have an unhealthy alcoholic intake? /s

DISCUSSION: Simon Wessley replies

From SW 12 Dec 2012 and the Countess replies: Dear Lady Mar May I ask, genuinely respectfully, am I writing to you, or am I writing to all the internet? When you wrote to me, you said it was an “open letter”, and indeed, it appeared on the internet as you sent it me Personally, I don’t...

forums.phoenixrising.me

Yeah it’s impossible to cut it down to just a small glass or two of wine so they could never do the Mediterranean diet/s

I miss having a drink, being mild was more fun than mod-sev. Just a little bit of champagne or maybe a dark rum and coke. A summer Pimms with all the fruit.

 

[Jonathan Edwards]

What was your “training in rehab”? Was it to the same level of rehabilitation professionals?

I was accredited as fully trained to be the medical director of a rehabilitation unit.
Will that do?

I would be interested in your answers to Utsikt's questions.
How do you know that you have benefited from rehabilitation?

 

[Trish]

I find it concerning that many people on this thread are advocating for rehabilitation professionals to not be involved in our care. If you don’t like rehabilitation, don’t want to do rehabilitation, don’t believe it will be helpful to your care, etc then just don’t see a rehabilitation professional. People who want rehabilitation should be able to access it though.

Hi Immunert, I'm happy for you that you found some helpful rehab professionals. As others have said, it would be interesting to understand what precisely they offered that couldn't be offered by a specialist nurse who would have the added advantage of working directly with a specialist doctor, and able to discuss medical issues rather than just lifestyle management.

I don't know what country you are in, but the big argument against rehab professionals in the UK is about them usually being the only clinicians we see, and then only for short rehab courses that are based on false science and potentially harmful advice incluidng increasing exertion. My wish is for that whole setup to be scrapped and replaced by a doctor lead service with specialist nurses who can do regular follow up, management advice where wanted, referrals to other specialisms where needed, and home visits.

It is clear from this website that there doesn’t seem to be any consistent core disease process underlying our symptoms. Since our symptoms severely limit our mobility and function, rehabilitation professionals are going to be some of the best clinicians positioned to help us. I think the doctors who want to keep testing us for anything and everything, often with tests that aren’t validated, tell us biological explanations that aren’t supported by the evidence, and want to pump us full of medications without any evidence should have less of a role in our care.

Apart from OT's being called in to advise on aids and adaptations such as wheelchairs, and in cases of bedridden patients, physios advising on passive movement to prevent contractures, I can't see any reason to put rehab clinicians in charge of ME/CFS care.

I agree that doctors who want to 'pump us full of medications without any evidence' not being appropriate either. Nobody here is seriously advocating for that. It's not the only alternative to rehab. Since there is no proven effective treatment for ME/CFS, surely what we need is ongoing accessible supportive medical care overseen by a specialist doctor who understands our symptoms and disability, and can prescribe symptomatic treatment meds to help where possible with sleep, pain, nausea and any other treatable symptom,, and keep an eye on severe cases with home visits to ensure nutritional needs are met and appropriate care provision.

 

[Jonathan Edwards]

I think the doctors who want to keep testing us for anything and everything, often with tests that aren’t validated, tell us biological explanations that aren’t supported by the evidence,

As far as i can establish the rehab therapists are actually even worse when it comes to explanations tht aren't supported by evidence. And also use tests that aren't validated.

 

[hotblack]

Thank you for this: one of the things this discussion has made me wonder is whether there's a need to try and publish something along these lines. Not quite sure of the best way or place to do this but you've articulated exactly what I have been thinking as a result of this thread.

Any thoughts on how we could do this much appreciated

Glad it was useful! Publishing something could be really useful I think although I’m not sure on the best approach. Getting involvement from patients could help. And thinking about what the core message is probably useful. There won’t be unanimous views amongst patients or professionals but I’m not sure presenting them all would be the right approach. And although having an explanation of different definitions of the word rehabilitation may be intellectually useful it can tbh feel a bit to some of us like explaining away a problem or telling us we don’t understand. I know that’s not at all the intention but I expect that would be the result if it made up a core of anything published. Providing an alternative approach rather would seem to be useful but I can see the difficulties.

Just on what word to use, I was thinking and brainstorming and words like support, maintain, prevention or possibly optimise came to mind. I did have some better notes but lost them! But it’s hard finding the right word, and I expect as with lots of things the more you say the more people can find something to disagree with.

Not sure if these thoughts are as useful. I can see the problem from my/our perspective quite clearly but not necessarily the solutuon. Even here on the forum while there’s largely agreement that rehabilitation is the wrong word there is a great deal of disagreement on the role of physiotherapists. I think many would like to help if you did try to publish something though, if would find input from the community useful.

 

[Immunert]

Hi Immunert, I'm happy for you that you found some helpful rehab professionals. As others have said, it would be interesting to understand what precisely they offered that couldn't be offered by a specialist nurse who would have the added advantage of working directly with a specialist doctor, and able to discuss medical issues rather than just lifestyle management.

I don't know what country you are in, but the big argument against rehab professionals in the UK is about them usually being the only clinicians we see, and then only for short rehab courses that are based on false science and potentially harmful advice incluidng increasing exertion. My wish is for that whole setup to be scrapped and replaced by a doctor lead service with specialist nurses who can do regular follow up, management advice where wanted, referrals to other specialisms where needed, and home visits.

Apart from OT's being called in to advise on aids and adaptations such as wheelchairs, and in cases of bedridden patients, physios advising on passive movement to prevent contractures, I can't see any reason to put rehab clinicians in charge of ME/CFS care.

I agree that doctors who want to 'pump us full of medications without any evidence' not being appropriate either. Nobody here is seriously advocating for that. It's not the only alternative to rehab. Since there is no proven effective treatment for ME/CFS, surely what we need is ongoing accessible supportive medical care overseen by a specialist doctor who understands our symptoms and disability, and can prescribe symptomatic treatment meds to help where possible with sleep, pain, nausea and any other treatable symptom,, and keep an eye on severe cases with home visits to ensure nutritional needs are met and appropriate care provision.

I am in the US so I am liking coming with a different perspective which was kind of my point. I felt the conversation was making broad statements based on experiences from mainly one country. My understanding is that nursing doesn’t help improve function and that is what I have been most concerned with addressing. For a long time, I would have agreed with your proposal. Here in the US the rehab professionals I saw were in close contact with my doctors about my medical care, not just “lifestyle management”. The doctors and nurses focus was ruling out dangerous conditions and prescribing symptomatic treatments but never went beyond that. Although their are no proven treatments in the literature, there is low quality evidence of rehab and I think it’s inaccurate to call it “false science” unless you are applying a very narrow definition of what constitutes as “science”. Even if there was zero evidence, we don’t need fool-proof evidence before trying things. To my knowledge, the medical field lacks formal evidence for many beneficial treatments that are routinely used for different conditions. I’m not going to go into my specific rehab treatment as I can tell it will create a problematic discussion. As I mentioned above, the point of my post was to provide another perspective that there are people who can improve their function with rehab and advocating for a whole field to not be involved in ME/CFS will prevent those people from accessing care that could help. I don’t see how that requires me to disclose specifics about my situation. I don’t think I will be continuing this conversation as these responses have been quite disappointing.

I was accredited as fully trained to be the medical director of a rehabilitation unit.
Will that do?

I thought it was a reasonable question as it was vague and used to exert some authority on the topic. Thanks for answering but I’m not sure what “accredited as fully trained” means. It sounds like you wouldn’t consider yourself a rehabilitation professional with more knowledge and experience than rehabilitation professionals including physical medicine doctors? No need to further explain though.

 

[Jonathan Edwards]

My whole point was there should be balance and rehab treatment should be an option for people who want to utilize their services for whatever reason so a discussion about who should and should not be involved in our care is unhelpful.

But, whether you are in the UK or the USA, the likelihood is that we are talking about provision of treatments as part of an insurance scheme to which many others contribute thousands of dollars or pounds a year. In Europe a large proportion of people get their health care through a government based insurance scheme but it is still a scheme into which everyone has to pay.

So the insurance system needs to ensure that whatever it approves for use is of established value. I don't think 'balance' comes in to this, does it? The system should offer whatever has been shown to be value for money. Rehab treatment has not been shown to be value for money for ME/CFS. People are entitled to pay for it if they want it but that is different.

The current situation is that there is a very serious shortage of funding for any care of ME/CFS, to the extent that very severe cases are dying unnecessarily. So choices need to be made. The choice in the UK is between a rehab-run system taking all the funds, which is likely to achieve pretty much zero, and a system with a physician to check the diagnosis is really safe and a nurse to provide advice and practical help beyond that.


You say you do not want to give specifics but surely this whole thread is about specifics? The discussion is about whether there are particular things that physios can provide, and whether they should operate in a short-course rehab type framework or something more like what is used for most other real diseases like arthritis. Members tend to be ready to consider and analyse any suggestions being made because we are desperate for ideas. But the evidence for effectiveness of rehab is not just 'limited' or 'weak'. It is very firmly negative. There is strong evidence that it achieves nothing.

 

[Jonathan Edwards]

Thanks for answering but I’m not sure what “accredited as fully trained” means.

It means that I have a piece of paper acknowledging that I am fully trained to consultant level in rehabilitation. I put it that way because both I and my rehab boss came to the conclusion when we parted company that the training is mostly empty handle turning - passing the buck to therapists who have no evidence base for what they do. (They closed the unit down shortly after I left.) I suspect I know a lot more than most 'physical medicine' doctors about the physics of medicine because i spent my life researching it. 'Experience' is of no use if it is not based on properly controlled observations.

Maybe the emphasis on reliable evidence here is not to your taste but I would question the argument that rehab should be funded if it means that a lot of other people are paying insurance premiums for something likely to be useless.

 

[Trish]

Hi @Immunert, thank you for replying. I understand you don't want to go into details of what treatment personally helped you, but it would be useful in this discussion, I think, if you were to specify what sort of clinicians are involved in providing rehabilitation for ME/CFS where you are, and what treatments they use. Do they use drugs, supplements, physical therapy, exercise therapy, psychotherapy, activity management, treatment equipment or what?

 

[Holinger]

I find it concerning that many people on this thread are advocating for rehabilitation professionals to not be involved in our care. If you don’t like rehabilitation, don’t want to do rehabilitation, don’t believe it will be helpful to your care, etc then just don’t see a rehabilitation professional. People who want rehabilitation should be able to access it though. It is clear from this website that there doesn’t seem to be any consistent core disease process underlying our symptoms. Since our symptoms severely limit our mobility and function, rehabilitation professionals are going to be some of the best clinicians positioned to help us. I think the doctors who want to keep testing us for anything and everything, often with tests that aren’t validated, tell us biological explanations that aren’t supported by the evidence, and want to pump us full of medications without any evidence should have less of a role in our care.

Hi, I am in the odd position of being cared for by a rehabilitation specialist but have no current rehab principles being used on me as it has been tried and failed. I just see them as a shrewd doctor and a patient in desperate need. His belief is that for barn door ME/CFS the rehabilitation model does not work and usually ends in worse outcomes. Adding to that there is no evidence base for rehab in our disorder. Similarly there is no evidence base for rehab in narcolepsy/cataplexy. And doctors pumping people full of unevidenced medications as you point out is clearly not the right answer either.

 

[neurophusion]

All the talk about "rehabilitation" really boils down to this: all objective outcomes in clinical trials fail to show clinically meaningful improvements. What exactly is being rehabilitated in such a situation? The word rehabilitation should not be misappropriated to mean something that it is not.

 

[PhysiosforME]

Glad it was useful! Publishing something could be really useful I think although I’m not sure on the best approach. Getting involvement from patients could help. And thinking about what the core message is probably useful. There won’t be unanimous views amongst patients or professionals but I’m not sure presenting them all would be the right approach. And although having an explanation of different definitions of the word rehabilitation may be intellectually useful it can tbh feel a bit to some of us like explaining away a problem or telling us we don’t understand. I know that’s not at all the intention but I expect that would be the result if it made up a core of anything published. Providing an alternative approach rather would seem to be useful but I can see the difficulties.

Just on what word to use, I was thinking and brainstorming and words like support, maintain, prevention or possibly optimise came to mind. I did have some better notes but lost them! But it’s hard finding the right word, and I expect as with lots of things the more you say the more people can find something to disagree with.

Not sure if these thoughts are as useful. I can see the problem from my/our perspective quite clearly but not necessarily the solutuon. Even here on the forum while there’s largely agreement that rehabilitation is the wrong word there is a great deal of disagreement on the role of physiotherapists. I think many would like to help if you did try to publish something though, if would find input from the community useful.

I would definitely ask for input! I have a lot of ideas around this and need to take some time to pull them into any coherent sense! I also agree there is some lack of clarity around the role of physiotherapists - we do so much more than just exercise but that is a discussion for another day!

 

[jonathan_h]

Disappointing to see this study endorsed by a co-founder of Physios for ME.

 

[MrMagoo]

Disappointing to see this study endorsed by a co-founder of Physios for ME.

I can’t see a thread for that study.

 

[Jonathan Edwards]

I can’t see a thread for that study.

I doubt it needs one. I not sure it is even a formal publication.
Why put this on social media for goodness sake?