UK: NICE Longcovid guideline 2020

Ariel said:
Hi @Yvonne I am sorry to hear you had COVID last year; I hope you can improve. Thank-you for the information about your experience. What are the concerns about the documents? What does the advice on conserving energy consist in? I have been quite interested in what they are telling people and whether anything has been learned from those with ME. I myself had covid and did not recover but have not gone through this process.
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Thank you @Ariel.
The booklet is quite comprehensive and I would say it has been written for people recovering from COVID, rather than for people with long COVID. It includes a section on conserving energy which is based upon 4 Ps: planning, pacing, prioritising and positioning. Examples are preparing required items ahead of time, scheduling activities such as shopping, taking rests before and after activities, sit rather than stand during activities, can someone else do the chores?, use a reacher and so on. The document on conserving energy is similar (but only 3 Ps - planning, pacing and prioritising) and it has more practical advice for activities such as washing, bathing, laundry, shopping etc. For example, sit to brush teeth or wash up, wear clothes that fasten at the front, cook extra portions to freeze for another day, online shopping. I'm picking out examples at random.
Overall I think this is good advice. I have concerns about a third document called "Post COVID Fatigue Information", which I'll post more on later.
 
Thanks @Yvonne this is very interesting. I would also be interested in the other document. I am wondering in particular how they have dealt with the issue of post-exertional malaise, if at all, even if only by talking around it.

I am glad it has been useful, despite concerns you mentioned.
 
Ariel said:
Thanks @Yvonne this is very interesting. I would also be interested in the other document. I am wondering in particular how they have dealt with the issue of post-exertional malaise, if at all, even if only by talking around it.

I am glad it has been useful, despite concerns you mentioned.
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There is no mention of post-exertional malaise, only one mention of post-exertional fatigue in the Exercise and Fatigue section:
"Slowly increase the pace of each walk until at a comfortable pace without any post-exertional fatigue."

Here is the table of contents:
What is post-viral fatigue? 2
Activity diaries 4
The 3 P’s of good fatigue management 5
Goal setting 7
Exercise and fatigue 9
The importance of diet 12
Sleep hygiene, stress and relaxation 15
Stress, anxiety and fatigue 17
Relaxation techniques 19
Cognition and fatigue 20
Understanding attention 22
Effects of post-covid fatigue on work 24
Resources 25
 
In the Exercise and Fatigue section:

"Why is activity important?
  • Covid-19 is a coronavirus.
  • A virus will trigger an immune response.
  • This immune response can cause inflammation, pain, weakness.
  • Initially bed rest and reduced activity levels can aid recovery.
  • However, reduced activity can also cause deconditioning, which is where the body becomes weaker.

Remaining in bed can lead to 10-15% loss of muscle mass per week"
 
"Start thinking about a gradual return to exercise
  • What could I do previously?
  • What do I know I can do now without triggering fatigue/ other symptoms?
  • What do I want to return to?
  • Begin with a short, flat walk daily
  • Increase the distance/ time gradually – this will vary from person to person
  • After you have been for a walk assess how you feel straight after and the day after.
  • Aim to build up to 20-30mins – you may start with only two mins or may be 10 mins depends on your level now.
  • On a good day only increase your exercise slightly – don’t overdo it.
  • Slowly increase the pace of each walk until at a comfortable pace without any post-exertional fatigue.
  • Try to build it into your daily routine."
 
There is a section on The Borg Rating of Perceived Exertion which it says is related to heart rate, but it does not give any information about how to use this.
Then:
  • Avoid pushing too hard on good days
  • Don’t compare yourself to where you were previously
  • Don’t focus on the negatives of exercise
  • Try to avoid getting anxious
  • Balance exercise with other tasks
  • Avoid more strenuous exertion or strength exercises e.g. sprints, plank
  • Avoid getting too breathlessness
 
In the first section, these sentences are particularly concerning:

“Do you remain at low activity levels and get stuck at this point, often causing worry about doing more and symptoms potentially worsening”
“Are your fatigue levels not changing and you feel like you are stuck in the same place?”
“The human body needs activity in order to produce energy”
“Limiting activity can make you exhausted, lethargic and increase pain when you are not moving around as your body isn’t producing as much energy”
“Work through high levels of fatigue very gently - slowly increasing activity”
 
There is a section on grading activity, which it says is “a key concept in the management of fatigue” This section doesn’t seem clear to me at all. ”Grading activity may involve a gradual change in the nature of the activity by changing one or more of the component parts.” It then advises to stop before “hitting the wall”
There is a section on goal setting (groan)
“Setting goals allows us to make positive changes to our lifestyle and provides us with something to work towards”
“The human body requires activity in order to produce energy. It is important to have a balance between activity and rest to produce energy and reduce reconditioning”
 
The statement "The human body requires activity in order to produce energy" simply does not make biological sense. The vast majority of energy expenditure in the human body is resting energy which does not require any activity.

Overall, the advice about fatigue, activity, and exercise is very confused and contradictory. It advises keeping an activity diary to find a baseline but does not tell you how to determine, i.e. measure, the baseline. There are frequent mentions of not pushing too hard, incorporating rest periods, balancing high and low activity etc, but overall the message is that you can manage fatigue and therefore reduce other symptoms such as pain and cognitive symptoms, by doing some exact amount and exact type of activity, which you must determine yourself and then increase it by some exact amount which you must also determine yourself. Unlike the information about conserving energy, none of this is realistic and I can't imagine anyone finding this helpful.
 
Oh dear. That's CBT/GET in disguise.

It's all very well saying:
  • Slowly increase the pace of each walk until at a comfortable pace without any post-exertional fatigue.
If you follow that with talk of fear/anxiety about exercise, and goal setting you very easily wipe out necessary caution for those who have PEM, and set them up for failure and self blame.
 
Yvonne said:
There is no specific advice at all. It will be interesting to find out what the online fatigue management course is like.
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It is just the usual mindless blather.

Unfortunately, e seems have got into politically correct quagmire.

All decisions have to involve everybody. That must include a multidisciplinary team and that means a physio must tell people hat to do - because physios are there to tell people what to do.

So they make stuff up. They may include a few things patients have told them are important but those cannot be said on their own because then the physio would not be providing 'expertise'.

So they make stuff up.

They always did. I ignored it but I worry that thee days doctors don't have the sense to ignore stuff that is obviously made up.
 
This seems very awful. It looks like the only lesson they learned from the NICE debacle is to simply word the same thing differently yet again. The usage of post-exercise fatigue and ignoring PEM is simply ridiculously incompetent at this late stage. It's the term wording used before to get around it. And so much about "worrying", which they just have no clue about.

Still stuck on the "building up tolerance" thing. Basically they're just doing what they feel like doing, regardless of reality. Business as usual, the BPS model must be promoted and so it is. So they borrow from ME most of the substance, but only from the deprecated guidelines.

Wow. So clearly NICE is unable to do their thing unless there is excessive pressure on them. There was not enough pressure here. And so they failed again. Amazing. And if someone has an ME diagnosis and a LC diagnosis, they have mutually contradictory advice. Which is great! Everyone knows confusion breeds confidence in a health care setting.
 
Medfeb said:
Trish wrapped it up noting that adaptive pacing is rising and that the NICE guidelines for CFS and LongCOVID will be coming out at the same time and she expects there will be dialog between the two groups "so they don’t contradict each other and they do address the potential and indeed described overlap in a sensible and evidence based way."
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It's late and I don't keep up with this but I still have (unevidenced) opinions!

Surely a draft NICE guideline would be published and consulted on i.e. before it is adopted - correct? I'd like to think that the Long covid charities would be aware of the risk of being fobbed off with unevidenced treatments.

It's easy to be cynical/resigned/depressed by this - surely the lessons learned (by NICE e.g. no supporting evidence for intervention) should be applied to the preparation of this guideline?
 
rvallee said:
So clearly NICE is unable to do their thing unless there is excessive pressure on them.
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@Jonathan Edwards highlighted the quality of the NICE team which produced the new ME/CFS guideline - but surely the system should be able to maintain standards. Reminds me of the 2007 ME/CFS guideline (to be clear I've never read it); which seemed to be the product of a particular team and an inappropriate failure to consider the fact that the evidence was low/very low quality/unsuitable as a basis for a clinical guideline.
 
FMMM1 said:
It's late and I don't keep up with this but I still have (unevidenced) opinions!

Surely a draft NICE guideline would be published and consulted on i.e. before it is adopted - correct? I'd like to think that the Long covid charities would be aware of the risk of being fobbed off with unevidenced treatments.

It's easy to be cynical/resigned/depressed by this - surely the lessons learned (by NICE e.g. no supporting evidence for intervention) should be applied to the preparation of this guideline?
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The best way would probably to raise this issue with UK long haulers, who are probably not much aware of those things. It takes a long time to get familiar with how bad this process generally works out. They need to start getting involved, I think by now they've gotten the message that wherever patients are not heavily involved, things are just plain bad.

Basically to force the same solution that "worked" for us: patient pressure and then some more pressure, but we can't do that, we did our own, they have to take it from there. Without accountability the system just falls back on the path of least resistance, the trolley just plows through. So resistance must be applied.

I'd just have to wrap my head around the details here, I haven't followed this much and it seemed to have happened in secrecy anyway, but I could do a tweet thread flagging some long haulers. There are some physicians long haulers who could spread the message as well, they will be majorly pissed at this. I don't know if it's too late for this round but I think this is supposed to be a "living" guideline so course corrections are to be expected. For sure this process this not bother engaging many patients, if any.

I assume there would be the exact same foaming at the mouth for the ME guidelines in response, but without patient resistance it will end up just the same anyway.
 
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