UK - NHS England online tool and clinics for long Covid.

@PhysiosforME !!!

 

So they went full BPS. You never go full BPS. Those legal disclaimers will not count for one bit in the lawsuits.

I do love all the confidence they have in this tripe:

This is really the Catch-22 of BPS in a nutshell: all the power and legal weight of medicine, none of the competence or responsibility. You have to follow this advice, it's the only thing around, but we assume no responsibility whatsoever. If something bad happens to you, you're on your own. But this advice is so good and perfect that all efforts to understand this disease and formulate good advice are effectively blocked. As choices go, this is "it puts the lotion on its skin or it gets the hose again".

That's pretty much what I expected, so I have no idea what the whole thing was with the NICE warning that was actually a caution but said nothing. They said "don't assume this will happen" even as people were making this happen. Seriously this behavior is perfidy, you go in to see experts that you should trust and what do they actually do? They hurt you and assume no responsibility for the harm.

People went to school for a full decade, studying their ass off, and this is what they do with it. They hurt people for a mediocre ideology, sacrificing lives to a ridiculous idea dating back to the Victorian era, identical today as it was the day it was hatched.

And one remarkable thing I always see about "BPS" stuff is multiple reactions of "this is great" "awesome" "fantastic", from people who did not even check the substance. This is the harm of toxic positivity that has made it impossible to make genuine progress in delivering better patient outcomes: it's good because it's there, no matter what's in it. It's always good, it's always great, it always deserves shiny gold stars and awards and constant praise in celebration. Just because it's there and something being there is better than nothing. The tyranny of low expectations lives on.

 

Please read this before starting

• Any exercise could lead to risk of physical injury.
• You should feel good when participating in activity or exercise.
• If you experience any extreme pain, shortness of breath or dizziness, stop and seek advice.
• Following this, activity and exercise advice, is at your own risk. You are agreeing to undertake these activities voluntarily and as such assume all risk of injury to yourself.
• If you feel unwell before, during or after, stop immediately and seek advice.

This seems completely incompetent and point 4 quite bizarre (quite apart from the poor grammar).

Why should patients assume risk of injury if following advice? That is never the case for medical advice otherwise.

And what is 'extreme pain' and why should people not stop with a moderate amount of pain? In fact what evidence is there that they should go on even without pain? How much breathless do you need to be to seek advice? I get the feeling this sort of advice is likely to make patients much more confused and anxious than they already are. And of course there will be no evidence either way.

Taking a wider perspective on this, I am very doubtful that advising exercise for people recovering from a systemic medical condition has any evidence based value. I have looked after thousands of people with severe medical conditions and I have always assumed that if I get the medical side as good as I can the person will regain normal activity best by just using common sense and doing more as they feel happy to. The situation is quite different for injuries or stroke. Rehabilitation started with soldiers who lost legs. You need supervised exercise programmes to learn to walk again is quickly as possible. With stroke you need help with relearning how to use limbs. But I have no reason to think anything like that applies to people who have had pneumonia or a heart attack or Covid-19.

This is just busybodying at best and dangerous busybodying very likely.
And it is the patient's responsibility if things go wrong!

 

I wonder whether they took legal advice over the likely efficacy of that exclusion clause, and, if they did, why they deemed it necessary to do so.

 

I have left feedback:

I have said that the advice is appalling and should be removed. I have said that I suspect there is no evidence base for exercise programmes after viral infection of any sort. I have said that making patients responsible for any injury is inexcusable.

 

If patients are responsible for any injuries does than mean that 'notes' will now require a coloured circular sticker to be attached, in the same way as they didn/do for smokers?

Possibly purple with green dots meaning 'exerciser, do not treat for exercise related injuries'.

 

https://twitter.com/user/status/1288438360848175104


https://twitter.com/user/status/1288437626815614979

 

I've just seen the "Your COVID Recovery" version of GET - https://www.yourcovidrecovery.nhs.uk/your-wellbeing/getting-moving-again/
and a similar programme being launched in Gwent - seen a couple of days ago on C4 news -
https://twitter.com/user/status/1287846218706702338


However, is it possible that those who *don't* experience PEM might benefit from this type of programme? (wearing semblance of devil's advocate-type hat here)

Bear in mind that both these programmes are aimed at hospital inpatients, probably post-ventilation/immobilisation...

[preparing to duck, in case various kitchen implements get thrown in my general direction!]

 

Of course it's possible, it just seems unwise to assume that they will, apparently on the basis that exercise may be good for people who aren't sick.

Especially when there several groups of people who've experienced post - something whatsits who mainly seem to have exercise intolerance as a result, who, if they are to be believed, do not tolerate exercise well, it makes their QoL drop, to one degree or another.

SARS, ebola, ME, definitely, it seems, others

It seems that a state can be arrived at after a virus that really doesn't like exercise mush - whatever you call it.

Pretending this doesn't happen would seem 'unwise'

But it's possible, that some people, might benefit from exercise, of course no one knows if these people would naturally get the correct amount without GET, but given GET is fairly new, it seems likely they would.

So the problem is with pushing people, whose bodies are telling them to stop, to continue, regardless.

ETA - my apologies for the terminological inexactitude - not exactly firing on all cylinders, my brain keeps returning sequoia, and as I am pretty sure that large tree was not what i meant by "post - something whatsits " it has had to stay as the freeform version

 

No kitchen implements but the usual imperial nakedness argument.

There is a non-sequitur involved.

1. Exercise throughout life reduces mortality and morbidity for the great majority of people.
2. After a serious illness you are deconditioned.
3. Therefore exercise as soon as possible after a serious illness is a good thing.

See the disconnect? (Edit:I see that Wonko did.) It seems to me very unlikely that someone's long term risk of mortality or mobility will depend on whether they start exercising the Thursday after a nasty virus or a year after.

I may be out of touch with the rehab literature but as a rheumatology trainee I had to do my training in rehabilitation medicine - at the Camden Rehabilitation Center that was once the Sun Ray Centre (maybe for rickets).
I don't know of any evidence for a need for people who have just been ill to exercise. Why? If the body is healing it will put muscle back on. There are all sorts of reasons why it might be a bad idea. The catabolic response to severe illness can continue for weeks. Exercise exacerbates catabolism by producing muscle breakdown.

I ran beds for sick people for thirty years. I never sent them home with exercises. It never crossed my mind. I think this is another example of the recent tsunami of politically correct recipe-driven drivel that has overwhelmed medicine as well as a lot of other things.

Ready for utensils to approach at speed.

 

There are times when I can take a little exercise without any pain. At the time.
Two or three days later I can be in a world of hurt.

The exercise advice given is wildly over simplistic and demonstrates that these people have no idea of just how vast the gaping chasm in their knowledge is. Quite evenly matched by the gaping chasm in their lack of common sense.

That they want the patient to take responsibility of the advice they give simply demonstrates that safety comes last & not first.

 

Sure it is more than possible.

However, we don't know who will be harmed & who won't because they've spent the last 35 years with their fingers in the ears. They clearly know some people will be harmed because they lay all responsibility at the patient's door. Safety should be as important as efficacy when it comes to any treatment.

Most people will automatically start doing more as they feel better. If they continue to feel better then they will continue to do more until they're back to what "normal" looks like to them.

By all means, when they return to life as normal (for them) encourage them to do more, be fitter etc.

Recovering from a condition where a new exercise regime might cause long term harm seems foolish in the extreme. Recover first.

As a child I had some health issues that out in bed bed for weeks and by the end of each bout I was too weak to stand, let alone walk or run. As I felt better I did more and a few weeks down the line I was back to climbing trees, playing tag etc. No prescription required.

 

It seems to be one of those areas where it might be a good idea, until you actually look at the data.

There have been reviews... so I took a look:

1. Exercise rehabilitation following intensive care unit discharge for recovery from critical illness https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5114628/

2. Does enhanced physical rehabilitation following intensive care unit discharge improve outcomes in patients who received mechanical ventilation? A systematic review and meta-analysis
https://pubmed.ncbi.nlm.nih.gov/31182443/

Both say exercise rehab makes little difference. But I had to ask, because I know others will.

You can put the pans away @Jonathan Edwards !

 

I was going to say yes it probably helps if they're no longer sick. The devil here is in the details as "not sick" is apparently often defined in an artificial way.

For example in some statistics a covid 19 patient is considered to have recovered if they survived 2 weeks and isn't in a hospital.

I would accept being told that I'm naive to believe that people who work in rehab for hospitalized patients probably know what they are doing.

 

Here is my nursing perspective. For a patient recovering from ICU post mechanical ventilation, it is essential to recover the lung fitness via breathing exercise to begin with.

Next, there is a need to prevent blood clots. Usually hospital staff will recommend to move feet and ankles while in bed, and to gradually sit up with feet dangling off the bed, to sit in a chair.

Thirdly, the patient will be encouraged to walk to the bathroom and walk the halls, if able. The goal is to improve circulation and to gain muscles needed to perform self care and activities of daily living.

Staff in hospital, in general, will know when the patient cannot reach next level. Some patients need more time. Some are not able to sit up. As staff, you can give it a few tries, but your limitation is that your patient passes out, becomes as pale as sheets, or the patient topples over. Not good, and believe me, nurses don’t want this to happen.

Now, the exercise guidelines as outpatients seem to be ‘one size fits all’, disregarding any kind of possibility that a disease process is happening. Moreover, very, very few physicians are aware of the pathology surrounding exercise ‘intolerance’ (aka PEM aka PENE). The pragmatic rehab orders for exercise is absolutely dangerous for those who experience a slow recovery.

 

I didn't experience PEM during the first 5 months of the vial phase after onset, but what I did experience was pure flatness after a run, zero high or indication that I even exercised. It was very odd.

 

Oooo. A disclaimer (albeit at the very bottom of the page [italics mine]):

I can't find the link to the NICE statement though...

And it isn't on the Fatigue page either.

 

Soz. Missed that, but wanted to link back to the page itself, and I don't think the "Fatigue" page has been linked to before.