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

I agree that people are likely to be helped by advice in terms of past experience for people with ME and Long Covid being that trying to make yourself better by exercising can run into serious trouble. But that is advice that any informed health care professional (or anyone else) can give. Whatever rehabilitation means it nearly always means more than advice and I don't see any justification for that.

 

https://sci-hub.se

 

Access to Sci-Hub in the UK has been disallowed by many ISPs as a result of a court judgement in favour of the copyright holders.

https://www.ispreview.co.uk/index.p...uk-isp-talktalk-to-block-sci-hub-website.html

The above link mentions TalkTalk but all the biggest ISPs have followed suit, including my own.

 

I didn't do anything during PVFS. I went out for short 5-10 minute walks at my own pace after the 5 year mark when I felt well enough to see how I would manage. It took at least one year after that to start increasing slowly to 30 minutes w/o feeling bad the next day.

I didn't need guidance and would have refused it anyways. I can figure it out on my own.

There is no end 'goal'. We have to manage at our own pace.

 

We keep hearing from "experts" who claim that their treatment is effective, and yet, when you dig further into it, there is no long-term follow-up. They are susceptible to the "Thank you very much, doctor: you have been really helpful, and I feel a lot better" syndrome, which seems particularly prevalent in England. I think we need a name for this, and propose PPS, the polite patient syndrome – a syndrome that medical professionals are particularly likely to fall for.

I do understand just how refreshing and helpful it is to come across medical professionals who have some real sympathy for and understanding of any chronic and misunderstood illness. My experience in hospital over the last year has hammered home just how rare this is, and how much relief there is when it happens.

But I keep coming across folk (not just with ME) who regularly go to the osteopath, homeopath, psychopath ... stating that the treatments are doing them good, and yet they don't improve. Their usual explanation is that without it they would be much worse. The truth is that we are built to leap to these sorts of conclusions, and it is hard to step back and be analytic. Most of our behaviour patterns are built on habit and assumptions. It is possible that sometimes these treatments are working: who knows?

There has to be some form of non-destructive objective assessment, and there has to be a reliable and comprehensive long-term follow-up. Without this, any claims of success are meaningless. Needless to say, there also has to be some sort of comparison group, but given the long time scales involved, I wonder whether each patient can effectively be his or her own comparison.

If we took a random group of folk with ME and tried out a treatment, we would have a group that had had ME for a wide range of time. A treatment that showed sustained objective improvement in all of them would suggest that spontaneous recovery was not a factor.

 

But that approach cannot be presumed applicable to everyone - some people can work such stuff out, others cannot, and should not pay the price if they cannot. Some people would have a mindset to just push through as hard as they can, possibly with disastrous results. There is no one-size-fit-all when it comes to needing guidance or not.

 

@Barry

The ME doctor I saw advised me to do nothing. I don't think that's too difficult to understand? Go for a walk and see how you feel after?

Most patients will do what they want anyways until they hit a block?

 

to add . . .

As well meaning as some physiotherapist are, they do not have the medical back ground or experise on how to 'treat' PVFS or post infectious states.

 

I think human nature is also susceptible to what you might call "investment bias" - probably a proper name for it but that will do me for the moment. When we have invested heart, soul, blood, sweat, tears and maybe money into something we desperately hope is going to help us, it is incredibly hard to accept it may have achieved nothing much at all ... we are highly likely to cherry pick and maybe amplify any positive aspects we can find.

 

‘Concord fallacy’ is the idea of having already invested a lot in something the best way forward is to invest more.

Also within ‘cognitive dissonance’ is the idea that we see things we have already invested a lot in as good, to avoid admitting we were wrong.

 

But the point is you were given that good advice, and that advice made sense to you. Others won't get such good advice, and others who do get it will need more help to appreciate the sense of it - it won't instantly make sense to everyone; maybe with hindsight for them, but not necessarily in the moment.

 

Well said @Graham including a touch of humour. Where i live people congregate to naturopaths (at a big cost) because they hold their hands, give them concrete things to try (again at big cost) and some even prescribe antivirals (and antibiotics for Lyme) that are not dispensed by physicians.

As for physio in the case of long covid, they are important part of the team in hospital to get the patient back on their feet again, just so they get to the bathroom and can get proficient again to shower by themselves. I hear respiratory physio can assist with improving breathing in early stages of recovery of COVId.

i have been a very regular physio user for several years now, and i am very lucky that for the most part, i am not lead into GET type of rehab, other than post op when i needed to get back to walking again, and regain range of motion. He understood that i would do all i could do without create relapses which meant i did less reps, spaced them out throughout the day. Having a physio that listens to my needs is critical to me and i would hate starting over with another one.

 

There are certainly many people with ME who need to be told, repeatedly, by professionals, particularly physios, that they cannot exercise through this illness, and that doing so can cause serious and possibly permanent setbacks. Agreed that there is no scientific evidence base for this, but I think the overwhelming testimony from so many patients, and our own personal experiences, makes this a pretty solid statement.

 

But is this so? I have been in hospital and needed to get on my feet again and did fine with the arm of a nurse or my wife. You do not need to get proficient again to shower unless you have a stroke or lost the use of a limb in an accident. I doubt there is any evidence that respiratory physios can assist with improved breathing. The body is pretty good at breathing as much as it needs to.

We need to get away from believing that this sort of thing must be helpful just because health care professionals claim they are helping.

What does seem to matter is that during the acute pneumonia phase patients are turned over, but this is done by the whole team and it doesn't matter who they are as long as they are strong.

 

It’s getting a bit complex discussion, I can accept what you say, with the drawback that nurses can be quite busy (and undervalued) and may not have time to spend taking the patient to the bathroom, and just handing out a bottle or a commode by the bed may be faster (or even (have a convenient cathether in place).

Being a nurse, i totally believe in the nursing profession overseeing patients’ needs in the hospital. It’s just that the health care system has veered away from that, favoring a multi-disciplinary approach. Unfortunately this has also been the model of care for the local ME service, where physios teach about posture, counsellors teach about grief, naturopath teach about eating, dietician teach about nutrition...
a revolving door of services that could be qualified as ‘everything but medicine’

 

Yes, but that is the problem isn't it? You would agree that nurses can take people to a shower and have to most of the time since physios work an eight hour day. The whole multidisciplinary concept needs binning.

And as far as I know there is nothing we know about posture worth teaching and I am very doubtful that anyone knows how to teach about grief. More often than not such teaching seems to be unsubstantiated psychobabble.

 

I have been sick for 12 years now. When i had access to the so-called ‘specialist program’ i wanted care and follow up by competent physicians- suffice to say i did not get that. We have not moved forward at all in these 12 years. PACE is still alive and doing harm. Not one treatment. Not one diagnostic marker.

And here we are, going through yet another awareness month. We should call it grief month.

 

There's a whole separate debate about research in physiotherapy -- however all evidence has to start developing somewhere!

We've had some criticism within our profession about the fact we've championed not using GET when we aren't suggesting any alternatives. It's tough to offer anything other than clinical experience until there is more robust therapeutic research - which as you've pointed out is hard to evidence.

That's why as @PhysiosforME we're looking at that element as well. Recruitment to our research study has been delayed due to covid but we're hoping to start very soon. (I'm on my phone so can't link to previous posts with details) It's a very small first step.

Ultimately educating our profession so they do no harm has to be a starting point whilst we then look to develop evidence that isn't based on a deconditioning theory.