UK: Physios for ME

Trish said:
Thank you, @PhysiosforME. A very helpful article.
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Yes, it is. Thank you. @PhysiosforME :thumbup:

Some comments:

This helps to explain the main symptom of ME/CFS, post-exertional malaise (PEM). Any activity that uses energy can cause PEM. There can be over 30 symptoms of PEM and people with ME/CFS usually experience PEM up to 24 to 48 hours after the activity. Called a crash, they can last days, weeks or months; some people never recover.​

I am not convinced the 'energy' is the right framing for PEM. It suggests an understanding of underlying mechanisms (e.g. mitochondria) that just doesn't exist yet. Of the current imperfect options I prefer 'activity capacity' and variants.

Activity capacity is a more general term that covers any active behaviour – physical, cognitive, emotional, and social, and to any degree, without presupposing where the underlying pathology may lie. I think is a useful practical distinction in everyday life for patients, and for helping non-patients understand the concept better.

It may turn out to be that the primary problem is with the biochemical energy production system itself, or it may be something downstream from that which blocks the normal use of that available energy, or it may that something else is demanding so much of the overall energy budget that many unrelated systems are having to operate in a compromised sub-par manner on a significantly reduced energy budget and functional capacity.

We just don't know the answers to these questions yet.

usually experience PEM up to 24 to 48 hours after the activity.​

I would phrase it as: ...usually experience the peak of PEM up to 24 to 48 hours after the activity.

Also, I draw a distinction between a single episode of PEM, and a full crash, which I regard more as the result of repeat episodes of PEM, with insufficient recovery time in between them (to the extent that is possible). A full crash is much more serious than a single episode of PEM.

I also think that PEM is probably a permanent underlying feature of ME/CFS, maybe even the, or at least a, defining feature. What differs is the degree of PEM, from practically non-existent, through to ongoing and extremely serious, debilitating, and disabling.

Lastly, planning, while relevant and useful, also needs to be accompanied by the equal recognition that one critical feature of ME/CFS is that there are large variability and unpredictability components to it, and they need to be allowed for in any planning.

That, of course, is particularly so for new inexperienced patients. Over time, mostly via lived experience and sheer necessity, patients will gain a better practical understanding of it, and find better ways to adapt and respond to, and where possible mitigate, the nature and limitations of the condition.

But even if it is possible (and I think it usually will be) to dampen down the variability and unpredictability – which is a substantial benefit in its own right, even just for quality of life independent of any practical gain in activity capacity – I think it will remain a significant feature require constant navigation and accommodation.

The real value, certainly at this stage, from clinicians like PhysiosforME is in being able to expedite that process for patients, to help minimise the difficulty, time, and cost of that early learning and adaption to often profoundly adverse changed health circumstances. The earlier in a patient's journey this can happen, the better the overall outcome is going to be.
 
Jonathan Edwards said:
I agree. I think we can be pretty sure from both the clinical pattern and what science we have that PEM has nothing to do with having 'used energy'.
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The problem is that ‘energy’ in the general non scientific use of the word fits so well, that as @Sean says it is quite hard to find a more accurate replacement. Somehow ‘capacity for action’ or even ‘incapacity for action’ does not subjectively conjure the right feeling, though it might more accurately reflect current knowledge. In conversation I use the word ‘oomph’ but that is also most inadequate.
 
Sean said:
Yes, it is. Thank you. @PhysiosforME :thumbup:

Some comments:

This helps to explain the main symptom of ME/CFS, post-exertional malaise (PEM). Any activity that uses energy can cause PEM. There can be over 30 symptoms of PEM and people with ME/CFS usually experience PEM up to 24 to 48 hours after the activity. Called a crash, they can last days, weeks or months; some people never recover.​

I am not convinced the 'energy' is the right framing for PEM. It suggests an understanding of underlying mechanisms (e.g. mitochondria) that just doesn't exist yet. Of the current imperfect options I prefer 'activity capacity' and variants.

Activity capacity is a more general term that covers any active behaviour – physical, cognitive, emotional, and social, and to any degree, without presupposing where the underlying pathology may lie. I think is a useful practical distinction in everyday life for patients, and for helping non-patients understand the concept better.

It may turn out to be that the primary problem is with the biochemical energy production system itself, or it may be something downstream from that which blocks the normal use of that available energy, or it may that something else is demanding so much of the overall energy budget that many unrelated systems are having to operate in a compromised sub-par manner on a significantly reduced energy budget and functional capacity.

We just don't know the answers to these questions yet.

usually experience PEM up to 24 to 48 hours after the activity.​

I would phrase it as: ...usually experience the peak of PEM up to 24 to 48 hours after the activity.

Also, I draw a distinction between a single episode of PEM, and a full crash, which I regard more as the result of repeat episodes of PEM, with insufficient recovery time in between them (to the extent that is possible). A full crash is much more serious than a single episode of PEM.

I also think that PEM is probably a permanent underlying feature of ME/CFS, maybe even the, or at least a, defining feature. What differs is the degree of PEM, from practically non-existent, through to ongoing and extremely serious, debilitating, and disabling.

Lastly, planning, while relevant and useful, also needs to be accompanied by the equal recognition that one critical feature of ME/CFS is that there are large variability and unpredictability components to it, and they need to be allowed for in any planning.

That, of course, is particularly so for new inexperienced patients. Over time, mostly via lived experience and sheer necessity, patients will gain a better practical understanding of it, and find better ways to adapt and respond to, and where possible mitigate, the nature and limitations of the condition.

But even if it is possible (and I think it usually will be) to dampen down the variability and unpredictability – which is a substantial benefit in its own right, even just for quality of life independent of any practical gain in activity capacity – I think it will remain a significant feature require constant navigation and accommodation.

The real value, certainly at this stage, from clinicians like PhysiosforME is in being able to expedite that process for patients, to help minimise the difficulty, time, and cost of that early learning and adaption to often profoundly adverse changed health circumstances. The earlier in a patient's journey this can happen, the better the overall outcome is going to be.
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I think this is a really important start at elucidating the pattern that we all suffer from, but with different severities and perhaps also across individuals different 'combinations'(? I don't have a word for this yet but I mean I have had times where I would get properly crushing crashes but between little windows of function to a level that confused people because that's when they saw me, but also times where I was 'carrying PEM' or whatever the term is)

I like to see it emphasised that there's PEM in the way people like eg Sarah Tyson seem to envisage it and what I've ever experienced and would like a really interesting discussion page to help my brain work it out with others and see what they have experienced over the years (as it varies of course by situation and year) not because this is 'wrong', certainly compared to the other stuff out there, but because I think if we can work it out between us then others stand a chance because we can communicate it having understood it ourselves
 
This discussion of what words to use in relation to both the lay and the biophysical concepts of ‘energy’ is significant but aren’t we rather high jacking the @PhysiosforME thread. It may be that ideally we should be moving this to another thread? I will report this post to the moderators.
 
Michelle Bull, one of the Physios for ME, posted this on LinkedIn:

www.linkedin.com

Embracing Complexity in ME Long COVID Treatment and Research | Michelle Bull posted on the topic | LinkedIn

After a few days to recover from/reflect on the ISLC-PAIS Conference, here's a summary of my take aways from the week: We need to embrace complexity. Long COVID & ME are complex, heterogeneous & multisystem so understanding & treating them will require us to work across traditional...
www.linkedin.com www.linkedin.com

After a few days to recover from/reflect on the ISLC-PAIS Conference, here's a summary of my take aways from the week:

We need to embrace complexity.
Long COVID & ME are complex, heterogeneous & multisystem so understanding & treating them will require us to work across traditional professional & research boundaries.
Muscle physiology, autonomic dysfunction, immunology, metabolism, vascular function, cognition, PEM... no single specialty has all the answers.

I was delighted to find like-minded physios in Amsterdam. Physios working clinically/in research, from different countries & different areas of practice, but asking many of the same questions.
❓ What is our role in conditions where exercise can cause harm?
❓ How do we support people to manage activity when their physiological capacity can fluctuate from day to day?
❓ How do we make rehabilitation genuinely individualised rather than assuming that increasing activity is always the goal?
For me, this isn't about physiotherapy having less to offer people with ME/Long COVID. It is about making sure what we offer reflects the physiology, the evidence and, crucially, what people with these conditions tell us.

We also don't have to wait until we understand everything before we help people.
Clinicians are already using treatments & approaches that can make a meaningful difference to people's lives.
But we need research alongside that clinical experience: testing what we are seeing in practice, understanding why something might work, identifying who it works for, and being equally willing to learn when something doesn't.

The patient recap session was particularly compelling, where we tried to share some of the key messages from the conference with people joining online. However, the polls were striking.
People living with these conditions told us that they were not yet experiencing the impact of the research & progress we had spent the week discussing.
But they also told us that hearing about it gave them hope.

There was an extraordinary amount of knowledge, expertise, collaboration and determination in Amsterdam. I came home feeling genuinely optimistic.
But publishing the research, presenting it at conferences and discussing it amongst ourselves isn't enough.

The next challenge is translation.
️Taking what we learn back into our clinics, our professions, our universities, our services and our conversations with colleagues.
Sharing it beyond the people who already understand these conditions.
And making sure people living with ME, Long COVID and other post-acute infection syndromes begin to experience the benefits.

The conference gave people hope. Our responsibility now is to help turn that hope into change. Thank you to everyone who shared their research, clinical experience and lived experience so generously over the week.

#MECFS #LongCOVID #PAIS #PatientVoice #ISLCPAIS2026
 
Dolphin said:
We need to embrace complexity.
Long COVID & ME are complex, heterogeneous & multisystem so understanding & treating them will require us to work across traditional professional & research boundaries.
Muscle physiology, autonomic dysfunction, immunology, metabolism, vascular function, cognition, PEM... no single specialty has all the answers.
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This is no doubt what speakers will have said, but sadly I see no evidence for it being a useful way of looking at things. There is no evidence of complexity when we don't even know one thing that is wrong. There is no mutisystem pathology - that seems clearer and clearer. Muscle physiology, metabolism, vascular function are probably not relevant and nobody has any answers so far, because answers require evidence from clinical trials.
Dolphin said:
We also don't have to wait until we understand everything before we help people.
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We do not need to understand everything but we need evidence of efficacy. I am afraid I disagree here. There is no justification for 'rehabilitation' of any sort until we have evidence of efficacy.

Patients will always hope in these situations but if resources are channelled into programmes that do not achieve anything, while the very severe have no basic life support, we are getting things wrong. That is the message I have tried to push at Forward-ME meetings and I have some hope that the view is shared.
 
I think one of the most important things physios can do is educate their colleagues about the lack of any evidence for any type of rehabilitation. Unless you class helping people to recognise any patterns in their activity that are provoking PEM, and tell them about the value many pwME find from pacing to reduce harm, and helping those who are bedridden to avoid contractures.

In the UK we are still, as I'm sure physios for ME are aware, faced with BACME's approach that involves complicated and detailed diary keeping and sleep hygiene and pacing up, none of which have any evidence of being uesful beyond simple information about PEM and learning by experience to avoid it.

I think the other way phyios can be very useful for pwME is in adjusting their advice and treatment for other things a pwME might go to a physio for, like bad backs and rehab after broken bones. I have been shocked in the past on the few occasions I have been sent to a phsio while having severe ME/CFS and been expected to do tests and exercises standing up, with no allowance made for my ME/CFS.

I'm sure the physios who run Physios for ME know all that really.

I wonder what you learned about rehab from the people you met at the conference, @PhysiosforME.
 
Trish said:
I think the other way phyios can be very useful for pwME is in adjusting their advice and treatment for other things a pwME might go to a physio for, like bad backs and rehab after broken bones. I have been shocked in the past on the few occasions I have been sent to a phsio while having severe ME/CFS and been expected to do tests and exercises standing up, with no allowance made for my ME/CFS.
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This was the thing that most frustrated me with my recent visit to a physio for back pain. He couldn't seem to get his head round the idea that I couldn't go for a short walk (to the limit of my current capability) and then gradually increase the amount I walked. I tried several times to explain the problem with that to him, and even suggested he check out the physios for ME website, but nothing I said seemed to get through to him.

In the end, the exercises he gave me were ineffective, and I was referred on to a spinal triage person, but it was annoying expending so much precious energy seeing someone who wouldn't/couldn't learn.
 
Dolphin said:
❓ How do we make rehabilitation genuinely individualised rather than assuming that increasing activity is always the goal?
For me, this isn't about physiotherapy having less to offer people with ME/Long COVID. It is about making sure what we offer reflects the physiology, the evidence and, crucially, what people with these conditions tell us.
Click to expand...
This was always my fear around Physios for ME, that it was all a front to push rehabilitation and ever increasing activity and there it is in plain black and white this is the new name for GET with the goal of increasing activity. They have no evidence any of this works and plenty of historical evidence it harms. When will the abuse of patients end?
 
I’m sure it’s well intentioned and am willing to give them the benefit of the doubt because of their other work and discussions on here.

But taking about rehabilitation and using phrases like “complex, heterogeneous & multisystem“ with no evidence is really unhelpful and potentially damaging. It seems to contradict the aims of the letter about BACME’s approach. We know how these terms are used against us and used to muddy the water.

Many of us in our professional careers have gone to a conference and got caught up with whatever hot topics were doing the rounds in that bubble. Then returned to our jobs talking about them before realising it was all bullshit. But it’s a concern if these were the themes that were going around at this conference.
 
BrightCandle said:
This was always my fear around Physios for ME, that it was all a front to push rehabilitation and ever increasing activity and there it is in plain black and white this is the new name for GET with the goal of increasing activity. They have no evidence any of this works and plenty of historical evidence it harms. When will the abuse of patients end?
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I think Physios for ME have always been clear that they are not seeking to increase activity levels, however there is am issue that the various therapies tend to seek ways to help and can end up introducing unevidenced interventions with the best of intentions. I did this myself when still a practicing Speech & Language Therapist with every intention of being up front about what I was doing and seeking to use the experience to develop research questions, but retrospectively I am less confident about what we did as a profession.
 
Dolphin said:
❓ How do we make rehabilitation genuinely individualised rather than assuming that increasing activity is always the goal?
Click to expand...
Dolphin said:
For me, this isn't about physiotherapy having less to offer people with ME/Long COVID. It is about making sure what we offer reflects the physiology, the evidence and, crucially, what people with these conditions tell us.
Click to expand...
This just feels like someone who wants to be involved no matter what. We don’t need that. We need help that helps, not «help» because someone want to be «helping».
 
BrightCandle said:
This was always my fear around Physios for ME, that it was all a front to push rehabilitation and ever increasing activity and there it is in plain black and white this is the new name for GET with the goal of increasing activity. They have no evidence any of this works and plenty of historical evidence it harms. When will the abuse of patients end?
Click to expand...
It would be good to have this clarified regarding the context they mean. Is it 'if you've had an operation that is nothing to do with ME/CFS but will need to 'rehab' with a physio for that' and trying to find ways that don't rely on the tasks at best slightly adapted but still actually going to not work for pwme?

In which case can I insert that many physios don't seem to get it isn't just a case of doign too much eg arm waving isn't just going to make us 'fatigued for a bit' so they need to get the harm for a long time thing. But more importantly it is counter-productive on the actual body-part they are supposedly addressing too often, because our arm or hip or whatever parts don't just work differently to the rest of us, but we 'get a bit tired' but those flare up in reaction to their too much too and so the exercises that they've been promised help and they think they've toned down a bit can often send even that backwards.

If it is about the idea we can be 'rehabbed' without the illness having any treatments - ie the type that are yet to be invented because no mechanisms have been looked into and found by researchers yet (as all the money went on these fake promises areas that did harm in a way it doesn't with other illness, and certainly doesn't continue to get funding to repeat the same tosh even when people are being silenced rather than checked it isn't harmful long term - I find 'rehab' the profession not a profession or 'medical' in that way, because it doesn't check that it 'does no harm' but the opposite)
 
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