JOSPT: Humility and Acceptance: Working Within Our Limits With Long COVID and ME/CFS - Décary et al - 2021

Oh, @Milo , you certainly defined what was at the root of the mess during my times in hospital. Everyone had well-defined responsibilities: no-one was actually looking after me as a whole person. They were all dedicated and caring, but the system was terrible.

 

Yes but with trials capable of providing reliable information, not with try it and see treatment judged on the basis of 'what seems to be working'.

So, surely, these critics should be told firmly that you don't just treat people because you want to have something to do. If we have no reason to think physiotherapy has anything to offer the average person with ME or Long Covid physios as a profession should be saying loud and clear that they are not needed. Surely it is a good thing if we do not have to waste money on 'rehabilitation' that we do not have reason to think will do anything and we have no evidence that it does?

What worries me is that the suggestion is that 'rehabilitation;' of Long Covid should continue but just carefully. Why do we not make it clear that we have no reason to think that a rehab programme is needed? People with serious organ damage, especially stroke, are likely to be different but the sort of Long Covid that is not associated with specific organ damage and resembles ME should surely be left alone?

I am not even clear why people are undertaking research studies without having good reason to think active treatment will help? Certainly it seems a bad idea to set up GET studies, but I suspect the same applies to any intervention until there comes a time, if there does, when we have reason to think it will help.

 

100% agree. The things that you've listed here Trish are imperative in my opinion and can make the world of a difference. Taking pacing as an example, it's very hard to explain to someone who's not had to do it how hard it actually is. I needed professional help to teach me how to do it and I would not have managed very well trying to work it out on my own.

 

One of the hardest things with pacing is that there is no sudden marker to say "Whoa! You've done enough!". My wife sees me starting to go a bit pale around the eyes, and tells me to stop, but I'm not aware of it: I'd carry on well into PEM territory before I notice. I think this is one of the more useful functions that as an ME support group we offer to newbies.

Some wise wonder on this forum once described it like going past a hidden speed camera when your speedometer is faulty– you don't know you have exceeded your limit until the letter drops through the door the next day.

The question is, who is best placed to advise newbies? Why is there so much reluctance in the medical profession to acknowledge the place of support groups? Yes there can be miserable, depressive ones, but the same is true of medical professionals!

 

Actually no, the advice didn't make sense to me at all, and I believe most people with LC will start exercising more despite warnings. The problems is that I couldn't walk/stand or do much at all in the first 5 yrs of illness. I didn't need anyone suggesting or telling me how to move. I got back to walking slowly when it felt right for me in small increments when I started feeling better.

 

I must have lost the plot somewhere.

 

I wonder if perhaps there is a bit of a difference between the experience of sudden onset/ gradual onset. I was gradual onset. For me, even once I was diagnosed it was very, very confusing trying to work out what my body could/couldn't manage and how to structure my life around this. I definitely needed help to work out how to pace in a way that worked for me. I imagine if sudden onset of severe it might be more obvious what can and can't do?

 

Yes, very good point regarding ME.

But LC are not gradual onset.

 

LC? I had an aunt LC.

 

Or was she ELCI? (Energy Limiting Chronic Diseases)

 

I saw a video a few days ago about Oliver Sacks, talking about encephalitis lethargica. It mentioned how in some of the dopamine trials, patients who had barely moved for decades were able to get up and walk, even dance. It usually didn't last, the effects wore off, but they could still do it. I think it's safe to say that those patients meet every definition of deconditioned that is fobbed on us. And yet they could get moving pretty much right away, no rehabilitation involved. I'm sure they were plenty stiff at first but they were able to.

I really, really don't think any rehabilitation is necessary unless there is actual damage. Damaged nerves or muscles? Of course. But if there is an illness state that can be affected, all that seems to be needed is to affect that state, people will get moving naturally and most people will never have any need for support.

It seems that yet again those concepts are based on ICU settings, where it's the norm because of course ICUs see a lot of serious injury. Most of this is "needed" simply because medicine has believed otherwise about us for so long and advises exactly the worst things. It wouldn't be necessary if fairy tales had not taken place instead of reality, it's a manufactured problem that can be stopped at any time.

At least for most. It's not a universal thing, there will likely be some nerve injury among this patient population, but it's the rare exception, definitely should not be held up as a norm that is universal.

 

Some definitely are, though over months, not years. There's pretty much everything and everything in-between on top of it: from sudden severe ME that never lifts to a more vague state of illness and dizziness with brain fog that could gradually worsen, which was my case. I had no fatigue at all until many years, had 2 remissions before I had any that is significant enough to be the typical ME whole body exhaustion.

 

True. But then again, pwLC are affected to varying degrees and their condition might have fluctuated since initial infection so I can see some parallels with my position when I was diagnosed (even though I was gradual onset).

I think in some ways pacing can be more complicated when you have mild/moderate functionality than when you are severe because you have to make decisions about priorities and when to stop that might be made for you when you are more severe. Having guidance around this can be really useful.

 

There is a gap, though: the issue of teaching the recently-diagnosed patient to go against their own instinct to build up their activity levels gradually in the expectation of eventual recovery, and to ignore the insistence of their family and friends that rest is something you can only safely do for a limited time.

Physiotherapists would be in a good position to lead on this, both from the point of view of training other practitioners, and of supporting those patients with a history of high fitness levels who're finding it most difficult to adapt. People who've done sport or dance training are used to taking physios' advice, and will often listen to them more readily when it comes to activity than they would a GP.

Also, we do need to find out whether deconditioning is actually a meaningful thing, and physiotherapy would be the obvious speciality to lead that work. Whilst the experience of ME patients appears to suggest that it's largely a myth, it's still a valid research question, and one that might have implications for other chronic illnesses. And if it is a myth, why? Was the general assumption that we always lose it if we don't use it just wrong, or is there something unexpected about ME? Or are we doing more than we think we are, and that's why we don't lose much strength or mobility?

 

It might seem it should be so. But what is the reality? The problem of GET stems back to beliefs in physiotherapy. The awful Cochrane review is the way it is because it was written by an evangelical physiotherapist who if I remember rightly wrote on the fly leaf of her thesis how much she wanted to spread the word of physio. PhysiosforME has described how there has been pushback from the profession at the suggestion of withdrawing GET because otherwise there would be nothing for them to do. Yes, it would be good for advice to be given by people who really understand evidence quality but that is not most physiotherapists, - at least as things stand.

From Physiopedia:
Physiotherapy as described by World Physiotherapy is a health care profession concerned with human function and movement and maximising physical potential. It is concerned with identifying and maximising quality of life and movement potential within the spheres of promotion, prevention, treatment/intervention, habilitation and rehabilitation[1]. It uses physical approaches to promote, maintain and restore physical, psychological and social well-being, taking into account variations in health status. It is science-based, committed to extending, applying, evaluating and reviewing the evidence that underpins and informs its practice and delivery. The exercise of clinical judgement and informed interpretation is at its core[2].

Examples of definitions of physiotherapy from around the world indicate that there is a consensus that ‘movement’ is the core expertise/business of physiotherapy[3]

I think this is quite telling. Everything is directed to maximising movement. That comes before treating disease. It all sounds very nice making everyone function best and be happy but it is all pretty vague. Again we hear that it is 'science-based' and committed to evaluating evidence yet as we have seen time after time people only say this when they want to convince you of it because deep down everyone knows it isn't quite like that. And, hey presto, it then comes out with it: clinical judgment and informed interpretation is at its core. In other words you make it up as you go along. OK there are always issues of clinical judgment and informed interpretation in healthcare but if they are at the core that means that reliably sourced evidence isn't. And we know that for physiotherapy for the last 200 years most of what has been provided is not based on reliable evidence.

I am all in favour of some physios changing tack and starting to gather reliable evidence. Over the last forty years I had met a few, like Di Newham. But as PhysiosforME points out the profession as a whole do not want that. They want to go on moving things and rehabilitating people. That is the job description. My thought would be that if a care team for PWME or people with LongCovid of the ME type is to include more than a well informed physician it should include people trained in the natural history of the disease, and the adverse experience with increasing activity without the baggage of the physiotherapy mission statement and pressure from colleagues.

I keep coming back to this:

What is a doctor's remit? To do whatever helps.
What is a nurse's remit? To do whatever helps.
What is a physio's remit? To increase movement.
What is a psychologist's remit? To psychologise people.
What is an occupational therapists remit (nowadays)? To do whatever helps.

If knowledge of complex theoretical principles was important for delivering care things would be different but it isn't. All we know is that people with ME or Long Covid need to be helped not to overdo things. We have no idea why and speculation about it should not enter care. Research into mechanisms could well come under physiology and might be done by those with a physio training but that is a different matter.

 

Surely the simple problem with GET is that it is being applied to the wrong illness. If applied to people who really are solely deconditioned, but who really do mistakenly believe they have a more serious illness, then GET would likely do them a power of good. But not people with ME/CFS.

Any illness potentially risks more harm than good if the wrong remedy is applied. Especially if it is a physical illness, and the remedy includes ignoring the physical symptoms of that illness.

 

I am not sure why. I don't see GET as a solution to anything. If people are able to do more and want to they can get on and do it. They don't need a therapist. If they find they cannot do it then either they shouldn't try, or if it is due to mistaken beliefs then I would have thought GET would be likely to entrench those beliefs and make things much worse.

Exercise ia good for prolonging healthy life but it really isn't so essential even there and I don't see it as a treatment for anything much. There are probably a few examples but I find it hard to think of any.