UK: Physios for ME

[hotblack]

If the medical definition of "rehabilitation" is inconsistent with the OED definition, that is a clearly a problem that needs to be resolved, particularly in the context of ME/CFS

Exactly. I flagged this earlier in the thread too. I’m repeating myself but as I said then, words matter, meaning matters

If the profession means something else it should use a different word. Especially when referring to people with ME/CFS.

All professions have their own jargon. But when it means something which is not only different to common and dictionary definitions but that difference and confusion has been used against the best interests of patients there is something which needs to change.

I’ve heard of the word habilitation being used, but the context seems a little different. The recognition that needing to come up with a different word seems helpful though. You wouldn’t rehabilitate someone with a permanent visual impairment. You cannot. Nor can you rehabilitate someone with ME/CFS. I think clarity here would help a great deal.

And I actually think changing the word used could be a great advocacy tool and something which could help people more widely, both professionals and patients. Explain the problems with the word snd why you are using something else. That would build trust with patients and help educate other professionals.

The sad fact is many healthcare professionals mean rehabilitation when they say rehabilitation in respect to people with ME/CFS. They do still think we can make ourselves better with the right support. We have an entire health system that is still based on that idea and most of us face that reality repeatedly and many have frankly been harmed by it. They think we can (and should) adapt to the healthcare offered no matter how inappropriate and that not doing so is a choice not a physical limitation. Recognition of that reality is really important.

Having a group of professionals rethink and change the language they use seems a pretty small thing to ask in this context. But also one which could have a significant positive impact in educating the wider healthcare profession on the important differences here. That they can help us but they cannot restore us to health. That they can make small changes which make a significant positive difference to our interactions and experiences of the healthcare system that we cannot do alone. That trust can be rebuilt even if mistakes have been made. And that its the healthcare professionals that needs to change attitudes, understanding and beliefs here not patients.

Patients are here waiting and willing, but we’re too often faced by professionals who are not there yet.

 

[Utsikt]

Thank you for taking the time to explain.

What I was trying to get at was a much broader role: helping someone avoid deterioration, adapt to current limitations, manage activity more safely, maintain function where possible, prevent secondary complications, and support participation in whatever is meaningful and achievable for that individual. This was the framing in both my presentation and the panel discussion I chaired in Amsterdam.

But why is this the definition of rehab? This is healthcare, not rehab. The fact that you have to include a long explanation every time you talk about it might indicate that you’re using the word incorrectly..

I don’t think that means physiotherapists have no role. Quite the opposite. Several people in this thread have described situations where physiotherapy could have been helpful if the clinician had properly understood ME, for example when treating back pain, recovering from an injury or surgery, or trying to prevent secondary problems, but where standard assumptions about progressing activity instead caused difficulty.

All of this can be done by a nurse, and the nurse would be able to contribute in other areas as well.

Instead of asking «could a physio do this», we should be asking «do we need a physio for this».

 

[Jonathan Edwards]

For me, that is a very important part of the role: making sure physiotherapy for any reason is adapted to ME, that PEM is understood, and that people are not harmed by applying standard rehabilitation principles without taking the illness into account.

I have to say that i find this a bit tortuous, Michelle. When people say a health professional has a role in managing X they usually mean that if someone presents with X you call in the health professional. The view here is that this does not apply to physio for ME/CFS. It is a bit like saying that surgery has a role in thrombocytopenia. Yes, it is important that a surgeon understands that thrombocytopenia may mean that an incision will not stop bleeding, but that is something different, surely. Surgery I snot a treatment for thrombocytopenia (except of course splenectomy, which makes it a bad example, I admit).

I also worry what 'standard rehabilitation principles' are? Are they based on reliable evidence? My training in rehab suggested that usually they are not. They tend to be based on beliefs about what is good for people in terms of activity, without much evidence base.

 

[Utsikt]

I also worry what 'standard rehabilitation principles' are? Are they based on reliable evidence? My training in rehab suggested that usually they are not. They tend to be based on beliefs about what is good for people in terms of activity, without much evidence base.

They were created based on what can only be described as a religious faith in the power of Rehabilitation:

Spoiler: Howard Rusk

To Believe in Humanity and in Rehabilitation: Howard A. Rusk, MD, and the Birth of Rehabilitation Medicine (source):

The last sentence in A World to Care For, the autobiography of Howard A. Rusk, MD, reads as follows: “To believe in rehabilitation is to believe in humanity” [1]. This very simple statement reflects a deeper meaning.

The 2 interconnected beliefs expressed by Rusk are a belief in the importance of the patient's “ability to rehabilitate himself” and a confidence that “this third branch of medical responsibility will one day be accepted and practiced as readily throughout the world as the first two branches, prevention and definitive care, are now practiced” [1]. Rusk went on to say, “The sooner the people of the world demand rehabilitation services, the sooner they will get the services” [1].

These 2 beliefs are foundational to his life's work and the practice of physical medicine and rehabilitation (PM&R) today. They reflect Rusk's global perspective and advocacy for both patients with disabling medical conditions and the medical specialty of PM&R.

 

[PhysiosforME]

Exactly. I flagged this earlier in the thread too. I’m repeating myself but as I said then, words matter, meaning matters

All professions have their own jargon. But when it means something which is not only different to common and dictionary definitions but that difference and confusion has been used against the best interests of patients there is something which needs to change.

I’ve heard of the word habilitation being used, but the context seems a little different. The recognition that needing to come up with a different word seems helpful though. You wouldn’t rehabilitate someone with a permanent visual impairment. You cannot. Nor can you rehabilitate someone with ME/CFS. I think clarity here would help a great deal.

And I actually think changing the word used could be a great advocacy tool and something which could help people more widely, both professionals and patients. Explain the problems with the word snd why you are using something else. That would build trust with patients and help educate other professionals.

The sad fact is many healthcare professionals mean rehabilitation when they say rehabilitation in respect to people with ME/CFS. They do still think we can make ourselves better with the right support. We have an entire health system that is still based on that idea and most of us face that reality repeatedly and many have frankly been harmed by it. They think we can (and should) adapt to the healthcare offered no matter how inappropriate and that not doing so is a choice not a physical limitation. Recognition of that reality is really important.

Having a group of professionals rethink and change the language they use seems a pretty small thing to ask in this context. But also one which could have a significant positive impact in educating the wider healthcare profession on the important differences here. That they can help us but they cannot restore us to health. That they can make small changes which make a significant positive difference to our interactions and experiences of the healthcare system that we cannot do alone. That trust can be rebuilt even if mistakes have been made. And that its the healthcare professionals that needs to change attitudes, understanding and beliefs here not patients.

Patients are here waiting and willing, but we’re too often faced by professionals who are not there yet.

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

 

[PhysiosforME]

Change of subject:

We have some new research published into the experience of people with ME using heart rate monitoring to support pacing

https://www.tandfonline.com/doi/full/10.1080/21641846.2026.2681411

 

[Chandelier]

Change of subject:

We have some new research published into the experience of people with ME using heart rate monitoring to support pacing

https://www.tandfonline.com/doi/full/10.1080/21641846.2026.2681411

Experiences of pacing with a heart rate monitor for people with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, 2026, Clague-Baker et al

 

[Peter T]

This contributes to developing a body information on the daily practicalities of managing ME/CFS. The ME/CFS specialist services should have been contributing to such an endeavour for the last decade and longer.

 

[Jonathan Edwards]

We have some new research published into the experience of people with ME using heart rate monitoring to support pacing

Thanks for flagging that, @PhysiosforME.Iamnotsure I fully registered the 2023 paper. The problemI see here is that this is an uncontrolled study soI don't think it provides any useful indication that HRM is a good thing. People improved after using HRM but all groups in the PACE trial improved (the same amount) at 2 years.

It is intriguing to see the quote from the ICC criteria Carruthers paper about ME/CFS being a problem with neurological controlof other systems. It is increasingly looking as if that was right. But that means that all the stuff about metabolism and energy management from the last decade is likely to be a red herring. It has become part of the advocacy groups folklore and I worry that it may be counterproductive.

I also worry if HRM is being used as evidence of efficacy of steroids. We have no evidence for HRM being a measure of how bad ME/CFS is and steroids might well have an artefactual effect on HRM while making ME/CFS worse in the log run.

 

[Sean]

I don’t think that means physiotherapists have no role. Quite the opposite. Several people in this thread have described situations where physiotherapy could have been helpful if the clinician had properly understood ME, for example when treating back pain, recovering from an injury or surgery, or trying to prevent secondary problems, but where standard assumptions about progressing activity instead caused difficulty.

For me, that is a very important part of the role: making sure physiotherapy for any reason is adapted to ME, that PEM is understood, and that people are not harmed by applying standard rehabilitation principles without taking the illness into account.

Thanks for your feedback.

It is an important issue because even if physiotherapy cannot currently offer much for ME/CFS itself – an open question – it will still need to work with patients on other unrelated issues from time to time (broken leg, recovering from major surgery, etc) and so must understand the limitations and considerations we have to operate under, including the often highly fluctuating unpredictable nature of ME/CFS, in particular managing PEM, and hence both choosing appropriate exercises and how to implement them.

And I actually think changing the word used could be a great advocacy tool and something which could help people more widely, both professionals and patients. Explain the problems with the word snd why you are using something else. That would build trust with patients and help educate other professionals.

+1

I fully endorse a change of terminology. Rehabilitation, no matter the strict technical meaning, has simply become too loaded and corrupted in ME/CFS, and attempting to reform it is likely to just be too costly, time consuming, meet too much resistance and persistent misuse, and only be partially successful. So it should simply be abandoned.

Something more like 'adaption' might be better.

 

[MrMagoo]

In linguistic terms the prefix re- is linked to again, back, turn.
I’d argue that prefix colours the use of rehabilitation as a means to get people back to doing something they did before.

Which isn’t appropriate in ME

 

[Robert 1973]

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.

Apart from the word rehabilitation, one thing I feel strongly about is the need for therapists to acknowledge when they can’t help or are not the best discipline to be offering help. My feeling, which others have articulated in this thread, is that most of what a physiotherapist might be able to do to help people with ME/CFS could be more usefully delivered by a specialist nurse, who could also help with other aspects of patients’ needs.

Holistic care is fashionable but if that means delegating different aspects of support to multiple individuals in different teams I don’t think it’s helpful, particularly for people with ME/CFS who benefit from continuity of care from people who get to know them and how their illness affects them.

For my part, I would prefer to have a specialist nurse who gets to know me taking overall responsibility for my care. If they felt that there were particular problems that required more specialist input from a physio or a psychologist or anyone else, they could then make a referral to them. But in most cases I think a specialist nurse would be able to provide most of the support that a physio might be able to provide for someone with ME/CFS.

 

[Trish]

I agree about the nurse bit, but also wondering about Occupational Therapy... that seems a specialty that might be useful, and not just in terms of equipment / wheelchairs etc. I came across some really good videos by a few different OTs online that seemed to really get it in terms of adjusting to a different sort of life. That said, a few years ago I tried to get referred to OT for that reason and they didn't accept my referral as they said OT had "nothing to offer".

The OT's runnning my local ME/CFS clinic do all the awful BACME pacing up diary keeping rubbish. They refused to have anything to do with the different sort of OT's who deal with aids and adaptations.

I would much rather have a service with specialist nurses who work in conjunction with a specialist doctor and can provide ongoing support including liaising with the doctor over meds and whether there's a need for medical testing at home like blood tests.

 

[Robert 1973]

I agree about the nurse bit, but also wondering about Occupational Therapy

I don't think there is much that an OT can offer that a specialist nurse couldn't learn in a day or two. But if a specialist nurse thought a patient would benefit from seeing an OT - for example if they needed an NHS wheelchair or stairlift or a Disability Facilities Grant - they could make a referral. And if the nurse knew the patient they would be able to give the OT most of the information they needed which would be particularly helpful for people who are more severely affected.

 

[Utsikt]

In my experience OTs are very hit and miss. Some have a very clear focus on adapting the environment to the patient’s needs and abilities, which can be great for people with ME/CFS. Others have a more tradition physio or rehab approach to things and believe they can improve the underlying condition through «correct» management.

People that are unable to communicate themselves still get what they need from OTs with the help of people around them, so I don’t think OTs really have to be involved directly if a nurse is already involved.

 

[obeat]

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.

Getting Healthcare professionals to stop measuring anything and everything to justify useless programs would be really helpful.

 

[Trish]

Getting Healthcare professionals to stop measuring anything and everything to justify useless programs would be really helpful.

I do so agree. I would ban the use of questionnaires for an ME/CFS service, except possibly FUNCAP if the pwME wants to use it to track their own function over the years or to help perhaps with demonstrating care needs.

 

[MrMagoo]

The OT's runnning my local ME/CFS clinic do all the awful BACME pacing up diary keeping rubbish. They refused to have anything to do with the different sort of OT's who deal with aids and adaptations.

I would much rather have a service with specialist nurses who work in conjunction with a specialist doctor and can provide ongoing support including liaising with the doctor over meds and whether there's a need for medical testing at home like blood tests.

Yeah the OT who I saw was encouraging people to follow a Mediterranean diet and eat “mostly leaves” (if you can chew/swallow - strangest addendum ever) and saying if you drink coffee it depletes your magnesium which you need for sleep.

Very hit and miss, can’t believe you can steal a salary from the NHS based on reading tabloid health reports.

 

[MrMagoo]

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

 

[Immunert]

I have to say that i find this a bit tortuous, Michelle. When people say a health professional has a role in managing X they usually mean that if someone presents with X you call in the health professional. The view here is that this does not apply to physio for ME/CFS. It is a bit like saying that surgery has a role in thrombocytopenia. Yes, it is important that a surgeon understands that thrombocytopenia may mean that an incision will not stop bleeding, but that is something different, surely. Surgery I snot a treatment for thrombocytopenia (except of course splenectomy, which makes it a bad example, I admit).

I also worry what 'standard rehabilitation principles' are? Are they based on reliable evidence? My training in rehab suggested that usually they are not. They tend to be based on beliefs about what is good for people in terms of activity, without much evidence base.

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.