Effect of using a structured pacing protocol on post-exertional symptom exacerbation and health status in a longitudinal cohort... 2022 Parker et al

Full title: Effect of using a structured pacing protocol on post-exertional symptom exacerbation and health status in a longitudinal cohort with the post-COVID-19 syndrome

Background

Post Exertional Symptom Exacerbation (PESE) is a characteristic symptom of Post-COVID Syndrome (PCS).

Objectives
This prospective study investigated the effect of a 6-week structured World Health Organisation (WHO) Borg CR-10 5-phase pacing protocol on PESE episodes and quality of life in a cohort of individuals with long-standing PCS (average duration of symptoms was 17 months).

Methods
Participants received weekly telephone calls with a clinician to complete the Leeds PESE Questionnaire (LPQ) and identify the appropriate phase of the pacing protocol. EQ-5D 5L was completed at the intervention's beginning and end to measure overall health.

Results
Thirty-one participants completed the 6-week protocol, with a statistically and clinically significant reduction in the average number of PESE episodes (from 3.4 episodes in week one to 1.1 in week six), with an average decrease of 16% (95% CI: 9% to 24%; p<0.001) each week, and reduction across all three exertional triggers (physical, cognitive, and emotional). Physical activity levels showed moderate improvements during the intervention period. Mean EQ-5D 5L scores improved from 51.4 points to 60.6 points (paired difference of 9.2 points, 95% CI: 3.2 to 15.2 points; p=0.004).

Conclusions
A structured pacing protocol significantly reduces PESE episodes and improves overall health in PCS.

Paywall, https://onlinelibrary.wiley.com/doi/10.1002/jmv.28373

 

Here is the Leeds Long COVID rehabilitation booklet.

It says it's
"Produced in partnership: The Leeds Teaching Hospitals NHS Trust and Leeds Community Healthcare NHS Trust"

https://flipbooks.leedsth.nhs.uk/LN005039.pdf

It has struck me that things have come an awfully long way:
The booklet explains PESE. It also talks about heart rate monitoring.

I think that my main issue is with the levels of positivity. It even has a picture of a rainbow on the front cover!

I does read as though if you follow this, you will get better ... which may well be true for many people ... but ...
But to be fair, there are warnings and caveats all the way through.

What's lacking are any statements that this might be it.
i.e. that you might not fully recover regardless what you do.

I have had ME/CFS for over 30 years now. If I'm honest, I do practise a lot of the techniques that are listed in the leaflet. I have arrived at this point through much trial and error and through (more recently) trying to keep up with the science.

But no-one EVER prepared me for the possibility that I might never be well again. The GP who diagnosed me 30+ years ago (fairly quickly to be fair) said it might take a couple of years. But she never said it could be life-long, although there were indications she knew.

So this is the only part that I feel is unethical. People should be told what they are dealing with.
(Unless they are deciding not to make a link with ME/CFS.)

Your thoughts would be appreciated. I live in Leeds. I know folk whom this could directly effect.

 

Hmmm I'm not entirely convinced, and agree on the lack of warnings about might not fully recover and how serious it is e.g. to take it slow and progress isn't guaranteed, nevermind timescales for it. At the start of the fatigue management section is a chart of building up your exertion (which is referred to within the following):

It still feels like the emphasis is 'onwards and upwards' and not fully getting PEM - more thinking it is a setback that just increasing more slowly will sort. I don't know how different LC is to ME but it does feel like when you look at the graph and read these as caveats (rather than what we know) it is rather 'GET with tweaks' potentially

I always have to think because of my situation: what would those around me reading this take from it and how it would affect their attitude to me - as that will affect how much control I get and how I'm treated.I know that with the 'prepare for exercise' and not enough warnings about timescales this is likely to cause impatience in most around others as outsiders always don't get the timescales and permanence.

 

No control group, only 31 participants and the authors seem to have made up the intervention and the main outcome, the Leeds PESE Questionnaire (LPQ).

The questionnaire is available in the supplementary material.

 

You cannot prepare for a future as a sick patient if you do not understand you might not recover.

 

Thanks everyone for your input. I have a more rounded understanding as a result.

So much psychological damage has resulted from exactly this.

Most of the pressure I have experienced is the pressure I have actually put on myself.

Acceptance (which took an incredibly long time) has paved the way to a much better quality of life.
Fighting something you cannot change just added another burden to an already very substantial set of losses.

 

I'm sorry... "phase" of the protocol?

Ah, so not pacing at all, this is GET-by-lying.

All exertion is the same, this is the main problem dealing with PEM/PESE. The complete inability of medicine to understand that this is about exertion, and the endless obsession with making it all about exercise, is ruining everything. Even though they use the word exertion above, they simply don't understand what it means, or choose an interpretation that fancies them. We can't make progress with experts who get distracted by every shiny light and reflection of their own image.

This is not pacing. At all. They're actually including the outcome as a phase. They literally cannot tell the difference between the process and the outcome.



Disregard this garbage, nothing at all to with pacing, in fact they are literally distorting it entirely by doing GET and calling it pacing. This Orwellian crap has to end, damnit.

 

Ugh. I don't see a way to send a letter. This cannot stand, the word pacing in the context of Long Covid has a meaning and it's the opposite of this. It should not be acceptable to distort the meaning of common words like this, it's as invalid as describing a vegetarian diet that allows for as much meat as you want.

 

Fantastic. Where do I sign up. I was never able to cycle before I got ME and now I will be able to do it on week 4!

Dancing as well as swimming. My old co-ordination problems cured finally.

 

I was thinking more of a letter to the editor, as some journals have.

Not sure I have the energy to debate with someone that their paper is bad, all I can do is a one-off summary of the issues. This seems like the responsibility of the journal.

It's an option, though. I'll see how pissed off and capable I am tomorrow.

 

So, it seems that the authors of this paper invented a WHO thing that doesn't exist. There is a section called "WHO Borg CR-10 pacing protocol", of which I added an image in a comment above. This is what is meant by phases in this paper, patients move between the "phases" of this "protocol".

The name suggests this comes from the WHO, but it isn't. In fact there is no such thing as this protocol, it seems they invented something for this paper and pretend it's backed by the WHO as a pacing protocol.

What there is is a thing called the "Borg Rating of Perceived Exertion", coded CR-10, but it is a generic scale of perceived exertion, has nothing to do with pacing or PESE, is not even a protocol. It's also a rating scale, there is no measurement involved.

It's frankly hard to do worse in terms of confusing the outcome for the process. I also would not expect peer review to be bothered by such detail.

 

In fact, it's right there in the conclusion:

The WHO Borg CR-10 is a structured pacing protocol shown for the first time in the current literature to substantially reduce PESE episodes whilst increasing activity levels even in a cohort of individuals with long-standing PCS symptoms​

Literally not a protocol, not about pacing or PESE, not structured anything. Somehow this passed peer review. Which frankly means nothing at this point, at least not in medical research.

 

Moved posts

'Structured Pacing Protocol' is the latest name for GET


Sky News:

'Long COVID: New study focusing on paced increase in physical activity sees 'impressive results'

16th December 2022

'A new study has found "impressive results" with its long COVID programme, which was based on a "gradual or paced increase" in a patient's physical activity.'

https://news.sky.com/story/long-cov...hTJRjVPycH59pdX_rLB5QDVmSOJaOD6ecDMikgh9xUS5I




Telegraph article by Sarah Knapton, Science Editor, 16th December 2022


'Long Covid can be reversed with a six-week exercise plan, study finds'

'Scientists in Leeds have found that fatigue, brain fog and breathlessness can be cut down by using the right exercise regimen'

'Long Covid can be reversed in six weeks with a plan that gradually increases exercise over time, a trial has shown.

The programme takes people from gentle stretching and breathing exercises and builds up, until they are doing the activities they were doing before they became ill, such as sports or workouts.

It was tested on 31 people who have been suffering symptoms of Long Covid such as fatigue, brain fog and breathlessness, for around 17 months, and who reported three ‘crashes’ a week where they were left exhausted after mild physical or mental exertion

Six weeks later, at the end of the programme, that was reduced to an average of one crash a week.

The patients also experienced moderate improvement in their ability to be active and better quality of life.' ......

https://www.telegraph.co.uk/news/20...-reversed-six-week-exercise-plan-study-finds/




The research:

'Effect of using a structured pacing protocol on post-exertional symptom exacerbation and health status in a longitudinal cohort with the post-COVID-19 syndrome'

Megan Parker, Hannah Brady Sawant, Thuvia Flannery, Rachel Tarrant, Jenna Shardha, Rebecca Bannister, Denise Ross, Stephen Halpin, Darren C. Greenwood, Manoj Sivan

https://onlinelibrary.wiley.com/doi/10.1002/jmv.28373

 

(Assuming Long Covid involving PEM is in fact ME, I believe my personal experience is relevant to this study.)

My experience is that effective pacing may result in some short term increase in possible activity through the elimination of PEM and allowing recovery from the negative effects of recent overexertion. Over the short term of some six months or a year or even more it is possible to confuse this with improvement in the underlying condition rather than it just being more effective symptom management.

If as patients generally believe overexertion can permanently worsen the condition, as well as symptom management, pacing may be essential to avoid long term symptom exacerbation due to overexertion. Also it is possible that effective pacing may create the best circumstances for any spontaneous recovery to occur, though that is purely speculation. However my experience is that it does not insulate from future relapses that for many/some will occur regardless of current activity levels for reasons we do not yet understand.

Further what is most worrying about the presentation of pacing as a curative treatment is that it is setting up patients for future relapses. The apparent improvement is not necessarily an unlimited escalator. My experience has been that there is still an activity ceiling and approaching it gradually does not prevent the relapse being triggered when it is exceeded, this approach may not produce negative consequences as quickly as GET can, but the crash can be worse because of that. A period of six months or a year or even longer of apparent gradual improvement can more deeply reinforce the idea that this is a curative treatment and also allow the individual more time to take on life commitments both of which make backtracking on activity levels much harder when the ceiling is hit.

Also clinicians, whose raison d’être is rehabilitation are already primed to confuse short term improvement through better symptom management with improvement in an underlying medical condition, especially when the patient will be already long discharged when the collapse happens, will reinforce the false belief that current improvement is an endless escalator to a nirvana of total recovery rather than a step ladder within a fixed activity ceiling.

My personal experience suggests the mistaken belief that pacing is a curative treatment can result in long term or even permanent worsening of the condition. I am also aware of others who have apparently had similar experiences. Obviously it may be some do experience a permanent improvement but they then remove themselves from the patient forums, etc, so their anecdotal accounts are harder to access.

Until we have follow up over years or even decades I would argue it is very dangerous to present an approach as treating the underlying condition rather than just symptom management. We can not say yet that this approach presented as a treatment rather than a management strategy does not leave individuals in a worse condition five years down the line than they would have been without the intervention. We are aware of people ending up in a wheelchair or being bed-bound following GET, but I would argue we are likely to see the same following pacing presented as a curative treatment, but just on a longer timescale than with GET.

 

Agree @Peter Trewhitt