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

[Invisible Woman]

I've decided to listen and what's remarkable is how utterly superficial and generic it is.

I listened for a couple of minutes and decided I had other things to do. I did listen long enough to notice that her wording was remarkably similar to the wording Phil Hammond used in his video. At least as I recall it - so maybe my dodgy memory.

You know the bit where they answer why some people don't recover quickly & they say some have a biological predisposition to fatigue and some are just more prone to distress & so more likely to suffer fatigue.

Ut sounded familiar.

 

[Cheshire]

 

[Hoopoe]

Note that Jonas Kunst is a professor of psychology at Oslo uni.

 

[Midnattsol]

Note that Jonas Kunst is a professor of psychology at Oslo uni.

He does seem to have some specific studies in mind with those examples, including one from UiO, that's good

 

[rvallee]

I wouldn't bother - he has a record of promoting spun PACE results and then presenting complaints about this as anti-science harassment.

There's some high degree of irony to liking PACE while not being aware that its model has been used in clinical practice for over a decade to such underwhelming benefits that he thinks it hasn't been tried yet.

Maybe that will spur some bit of introspection. Then again, I'm pretty sure that PACE is a reliable test of someone's capacity for introspection in the first place so maybe not.

 

[rvallee]

Note that Jonas Kunst is a professor of psychology at Oslo uni.

Damn those anti-psychology professors of psychology! Dangerous vexatious activists against psychology. That's how deep the conspiracy goes!

Could be an interested signatory to the open letters, @dave30th?

 

[Tom Kindlon]

 

[Sly Saint]

Trudie Chalder:

 

[rvallee]

I stumbled upon this yesterday: https://www.hackneycitizen.co.uk/wp-content/uploads/Post-COVID-19-information-pack-5.pdf. It seems mostly tailored for pneumonia patients.

Overall it's not bad even if missing quite a lot of details, it's really more of a generic post-ICU recovery from pneumonia. It's framed with a recovery period of 6-8 weeks in mind, but I'm not sure how much peace of mind it would bring to those experiencing the wild (not a typo) range of symptoms since it doesn't address them at all.

I did have a bit of a laugh at the presence of spoon theory. I'm sorry I mean bean bag theory, because when medicine takes language from the patient community it must make slight alterations to it because reasons.

I will credit that it gives strong advice to rest. I'm not quite sure this is accompanied with guidelines that actually give sick leave for it, though. That's usually the missing part of the equation, the advice to just rest as if this is something people could simply do on their own.

There is however the advice on physical activity, which may be reasonable for patients with only pneumonia, but likely problematic for those for whom this isn't the main problem:

It’s not harmful to get out of breath when doing physical activity, this is a normal response.

The full section seems a bit muddled, but at least the last line should convey the proper caution:

Spending time in hospital or being ill at home with COVID-19 can result in a significant reduction in muscle strength, particularly in your legs. This can be for a number of reasons, but mainly due to inactivity.

It’s not harmful to get out of breath when doing physical activity, this is a normal response.

However if you are too breathless to speak, slow down until your breathing improves. Try not to not get so breathless that you have to stop immediately, remember to pace your activities.

You might have been given some exercises to do in hospital or in the community by a physiotherapist.

Make sure you keep doing these regularly however if you are unsure, contact the prescribing therapist.

Do not overdo it, try to increase your activity levels slowly.

Methinks the prescribing therapist will be getting lots of calls.

 

[Kalliope]

Endorsed by another Norwegian psychologist. What's happening??

 

[Hoopoe]

It may be confusing to suddenly have the support of understanding professionals, if that was never the case for many years.

 

[Dolphin]

Moved from Possibility of ME or PVFS after COVID-19

 

[rogerblack]

Merged thread

Extremely dangerous NHS exercise guidelines post covid.

https://www.yourcovidrecovery.nhs.uk/your-wellbeing/getting-moving-again/

• By being active and starting some exercise you become stronger and fitter. You may notice your tiredness increase and some breathlessness at first but these should improve the stronger you get; this is a normal response to doing more exercise for all of us.
• • The more time spent being physically active, the greater the health benefits.
• • Regular physical activity along with eating well can help you recover, build your muscle strength and become independent again.
• • Try making a walk part of your daily routine to give your day structure.
  • Don’t worry if you need to stop and rest, that’s a normal part of recovering and getting strong agai

I stopped skimming about there.

 

[Wonko]

Individualised guidelines I see.

Doesn't matter what's wrong with you, we advise you do exactly what we recommend everyone do.

Someone, well....lots of someone's, got paid actual money, and spent weeks, to come up with this.

 

[chrisb]

• • Don’t worry if you need to stop and rest, that’s a normal part of recovering and getting strong agai

...unless it isn't.

 

[Esther12]

Merged thread

Extremely dangerous NHS exercise guidelines post covid.

https://www.yourcovidrecovery.nhs.uk/your-wellbeing/getting-moving-again/

• By being active and starting some exercise you become stronger and fitter. You may notice your tiredness increase and some breathlessness at first but these should improve the stronger you get; this is a normal response to doing more exercise for all of us.
• • The more time spent being physically active, the greater the health benefits.
• • Regular physical activity along with eating well can help you recover, build your muscle strength and become independent again.
• • Try making a walk part of your daily routine to give your day structure.
  • Don’t worry if you need to stop and rest, that’s a normal part of recovering and getting strong agai

I stopped skimming about there.

They do go on to say:

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.

So they advise people who are feeling unwell post covid-19 that 'the more time spent being physically active, the greater the health benefits' but also that 'if you feel unwell before, during or after, stop immediately and seek advice.'

So someone who feels unwell and wants to get back to normal activity should actually immediately stop their activity and seek advice?

 

[Esther12]

There was also this:

What if I have a bad day?

• It is normal to have setbacks so don’t give up. There is no reason to feel that you’ve failed.
• Learning from your experiences helps you to set goals that are more realistic and more likely to last. This will help you to set activity goals that become part of your daily routines.
• Remember the less you do, the less you will want to do and the less you will be able to do.

The more of it I read, the more it seems to be sending vague and conflicting messages to patients, with a confidence that seem unjustified.

 

[rogerblack]

There was also this:



The more of it I read, the more it seems to be sending vague and conflicting messages to patients, with a confidence that seem unjustified.

I should have perhaps elaborated on the original post.

My worries are the entire tone of this piece is 'everyone will get better' - and is considering it entirely as normal exercise physiology, without raising one note of concern.

 

[Wonko]

So someone who feels unwell and wants to get back to normal activity should actually immediately stop their activity and seek advise?

What if you feel unwell while seeking advice?

Immediate stop and then seek advice, then immediately stop because you feel unwell, so seek advice,......

Someone hasn't given any thought to breaking out of this advice loop at all

 

[NelliePledge]

Sadly despite the NICE statement on GET I think this was to be expected from the people who were involved in putting this information together. They are the status quo and believe they are right.