World Physiotherapy: Briefing paper 9: Long COVID, physical activity and exercise

"Introduction

Safe and effective rehabilitation is a fundamental part of recovery from illness and can improve function in people living with disability. Currently insufficient evidence exists to guide best practice for safe and effective rehabilitation in people living with Long COVID. Comparisons have been drawn between the symptoms and experiences of people living with Long COVID and other infection outbreaks such as severe acute respiratory syndrome (SARS), Middle East respiratory syndrome (MERS), Chikungunya and Ebola,1-7 albeit now on an unprecedented scale. Selected symptoms also overlap with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), which is often triggered by infection and immune activation.8,9 In the absence of evidence for best practice in Long COVID rehabilitation, the heterogeneity of symptom presentation and clinical course in people living with Long COVID, and the lessons learned in people living with ME/CFS, caution may be required when recommending all forms of physical activity. In particular it is currently unknown when and by what amount physical activity (including exercise or sport) is safe or beneficial, so that it does not impair functioning among adults, young people and children living with Long COVID. "

PDF file, https://world.physio/sites/default/files/2021-06/Briefing_Paper_9_Long_Covid_Final.pdf


'Press release'

"Safe and effective rehabilitation is a fundamental part of recovery from illness and can improve function for people living with disability.

World Physiotherapy has published a new briefing paper, Safe rehabilitation approaches for people living with Long COVID: physical activity and exercise. The briefing paper presents considerations for safe rehabilitation specific to physical activity, including exercise or sport, for people living with Long COVID. "

https://world.physio/news/world-phy...-safe-rehabilitation-people-living-long-covid

https://twitter.com/user/status/1405122466511470592

 

That list of contributors is like a sunrise on a tropical beach. Great to see such international collaboration.

 

I'm sorry but I don't understand the value of this. Why not simply say that there is no reason for a physiotherapist to get involved in LongCovid since we have no evidence to base treatment on?

It is full of exactly the person-tailored stuff that therapists are using to dodge the fact that they don't have any reason to do anything specific.

We need honesty. This statement is simply made up:"Safe and effective rehabilitation is a fundamental part of recovery from illness" I have never seen any evidence for a need for rehabilitation following a viral illness unless there is some specific problem like brain damage from encephalitis.

The advice is to carry on doing lots of lovely person-centre physio but be careful not to overdo it. Why not just say no thanks? Very few people need to do any sort of exercise in order to be able to get back to doing a job of work.

It is not as if people recovering from viral illness have been going for rehab in the past. This is a new initiative driven by the politics of looking as if something is being done. Why, why, why can't they just say sorry, not something we can help with?

 

Absolutely, but a physician is trained to do that. When I had acute vertigo and ended up in the stroke clinic the physician who signed me off as stroke free gave me detailed advice on exercise and its value for stroke prevention. If someone with LongCovid has a competent physician assess them for problems in different organ systems then they can be advised to take things gently and make sure they can manage with important daily activities, including work if relevant, before deliberately exercising.

This document bends over backwards to give the reasons for not exercising too hard but it still presumes that exercise is a good thing otherwise - without any relevant evidence. The fact that exercise is otherwise good for you if you are well is completely non sequitur. And throughout there is talk of all sorts of rehabilitative manoeuvres that can be used on a personal basis - but what?

I am afraid that getting most physios to explain pacing without just a teeny bit trying to get you to do some exercise is a pretty big ask. As PhysiosforME has said there is a huge pushback in the profession against any backing off exercise.

 

Mostly because patients will keep being referred to physical therapy by lazy/ignorant GPs for a long time and they should know this stuff even if the physician who is confused does not.

There is no reason why "rehabilitation" is part of the solution, but lazy physicians will keep fobbing "those patients" off for a long time and it's still helpful if at least 1 of the 2 people involved in this chain can tell their ass from a hole in the ground.

Even better if they can give useful advice. Better still would be if this advice were initially given but frankly it will take at least a whole generation to unhook physicians away from this weird ass-belief system.

 

Within my local group, a whole cohort of members have recently complained about the lack of understanding of ME/CFS by local NHS Physios. (Another ‘Action’ to educate them has been added to my growing ‘to do’ list.)

We have provided links and papers for members to share with their physios.

I have just shared this briefing paper too, hoping that this sentence will make some of the professionals sit up and learn more about ME/CFS:

“the lessons learned in people living with ME/CFS, caution may be required when recommending all forms of physical activity. In particular it is currently unknown when and by what amount physical activity (including exercise or sport) is safe or beneficial, so that it does not impair functioning …”

 

But it still makes no sense to me. Why doesn't World Physio simply put out a statement that they have nothing to offer people with LongCovid? Why don't they say if a physician refers politely send the person back saying there is no evidence based treatment?

Why put out a document that despite all the ifs and buts suggests you do actually treat the patient, just gently - when we all know that the majority of physios are incapable of not pushing people to do more?

Yes, physicians have forever sent the wrong patients for physio but why put out guidelines for treating a whole new lot of people? This looks to me like active advertising for people slow to recover from a virus when traditionally physicians did not refer for that.

I actually agree with Trish and others that the real problem is that the public are obsessed with exercise and getting treatment. Physios should just say: No, this is not a situation where we can make you better.

It is easy enough to see the reason - the push back from a profession that does not want to lose business. But that is the whole problem that S4ME discussions have centred around for four years - protecting people from the empire building of healthcare professions.

 

To some extent I think GPs who refer on can be the victims of medicine's success.

Those who are lucky enough to have good health and don't have a close ties with anyone with chronic health conditions tend to believe that medicine can fix almost everything and do so quite quickly, in my experience at any rate.

So, I can well believe, some patients who might be told to go away and do nothing, just take it easy, rest, might be inclined to keep coming back. In part because they are under pressure from bosses, banks and significant others but also magazine articles of people who suffered terribly but then found they had something treatable after all. Only found because they didn't give up or happened to find themselves in front of the right doctor.

The style of interaction with the GP where you get a scant 10 minutes and are told what to do, handed a prescription and shooed out the door, where it's hard to see the same GP twice and build up a relationship of trust leaves people wondering if they are receiving the best treatment for them.

The lack of recognition that some might need prolonged convalescence & social/financial support during that period has been replaced with pushing rehab as early as possible. That's fine when you've had a replacement hip but isn't the answer for everything.

 

Aunt has longcovid and her "bedrijfsarts" the doctor that works for her work told her the last thing she needed to do was go to the physio, whereas her GP was of the mind it was all burnout and was pushing to put together a program with said physio. Usually it's the other way around, but she's extremely lucky that her company doctor is in a team that specializes on covid and it's long-term effects. It's done her the world of good to get that kind of recognition. And now she's at home, resting mostly.

 

Who requires them to do that?

 

I am sure that is right. But if World Physio and the physio profession agreed that exercise is not relevant to LongCovid and got that message back to GPs and governments sharpish that might stop all the nonsense.

My beef is that this document says 'be a bit careful when you exercising people' and it should be saying don't tell people to exercise.

Maybe rather than physios refusing referrals they should see the person once and say don't exercise - period. I bet you that more or less every physio who might read this will find themselves saying to themselves but surely they need to exercise a bit to get well? - and as far as I am aware the answer is NO.

 

OK, so it is really essential that organisations like World Physio start putting out documents indicating that there is no evidence base for such a referral and making that clear to governments.

Saying that rehab is a fundamental part of recovery is just dishonest and against peoples' best interests.
World Physio is perpetuating an injustice.

 

I noticed a strong influence from the draft NICE guideline in their wording (whole sections either paraphrase or borrow our words). I'm glad it's being useful after three years or so of hard work.

 

In my experience it's employers, channelled through patients.

Employers expect sick employees to Do Something to improve the situation, and so the employee is pressured to go back to the GP, who in turn tries to help.

One example (of many over a working life): about 12 years ago I was signed off with nasty gastric symptoms that made it impractical to work in an office 80 metres from the nearest loo, and was referred to a day clinic for some investigations. The appointment came through within a week, but I had to wait another couple of weeks for the results of some of the tests.

I was called up from work two to three times a week to ask for a progress report, even though all I could tell them was that I wouldn't know until my next appointment on X date. I was put under a lot of pressure to go back to my GP to see if she could tell me anything different, even though it was obvious that she'd be as much in the dark as me until the results came through.

I had a relatively good employer and I could resist pressure to request pointless consultations, but I can see why a more aggressive HR manager would have been sending a younger or more timid patient trotting dutifully back to the GP and asking for some kind of action. Employers like this probably played a big part in the prescription of antibiotics for viral upper respiratory infections for decades.

 

But this is in the context of LongCovid. It would be interesting to know what would happen if all the LongCovid clinics went over just to referring for CBT. I suspect there would be quite a stink. And I am not sure what sort of behaviour the therapy would recommend?

 

Yes, at least the wording of the discouragement to exercise is pretty sensible and it is heartening that the NICE draft is being taken note of.