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

Peter Trewhitt said:
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.
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Came to post this: Paced activity programme can improve symptoms and quality of life in long Covid - Pulse Today and think Peter's post above already describes one of the issues with the 'six week paced activity programme' (which perhaps should be called a 'six week paced activity increase programme').
 
Lou B Lou said:
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
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This article cleverly uses the story of someone much more severely affected than those in the study (90% of whom were employed).
 
I think we should not go along with using the word 'pacing' or 'paced' for programs which are clearly NOT pacing but ARE Graded Exercise/Graded Activity. What I mean is try not to adopt their language outside of quotes. It muddies the water around what pacing actually is, it becomes insidious and soon enough the idea gets around that there are different kinds of pacing and some kinds are 'paced activity programs' ie GET.

We've seen this before when BPS advocates call ME 'Medically Unexplained Symptoms' and soon enough unwary patients start calling ME 'Medically Unexplained Symptoms'. Inadvertently Captured, Co-Opted, fooled by language tricks.
 
Lou B Lou said:
I think we should not go along with using the word 'pacing' or 'paced' for programs which are clearly NOT pacing but ARE Graded Exercise/Graded Activity. What I mean is try not to adopt their language outside of quotes. It muddies the water around what pacing actually is, it becomes insidious and soon enough the idea gets around that there are different kinds of pacing and some kinds are 'paced activity programs' ie GET.

We've seen this before when BPS advocates call ME 'Medically Unexplained Symptoms' and soon enough unwary patients start calling ME 'Medically Unexplained Symptoms'. Inadvertently Captured, Co-Opted, fooled by language tricks.
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I think it is another term (along with relapse) which needs to be prioritised to be ditched and should never really have been used.

The laypersons common understanding of the term (outside ME), such as not going too fast at the start of a marathon, is at odds with what PwME mean - if there is any common understanding we can all be sure of even there when charities or individuals use it, I mean we base that on trust and having read other words around it.

Envelope and resting as body requires is more clear and less of a therapy, 'pace yourself' potential for misunderstanding. It's also more workable for real life.

My other issue with pacing is that really external input (after convincing people of the need to listen to their body etc and not push through) needs to focus on changes to environment that allow someone to even try and live near their envelope or at least not undermine it unnecessarily ie adjustments and understanding.

But the world is imperfect and for many very important things (appointments for example) PwME are making judgement calls and using the rest before and after or as @PhysiosforME I think I've heard use 'radical rest'.

All of this is as vital for others to understand, including that bugs, noise, climate, and all sorts of things other people won't notice do indeed impact whether someone needs to rest more or has a crash - and I often feel like the phrase pacing is used as if having to have radical rest or a crash is some sort of failure.

I'm slightly doubtful myself about how 'perfect pacing' means you avoid PEM altogether whilst still doing the things you need - so really points to the biggie issue of having a disability where you both can do something but can't at the same time according to the deliberately limited understanding of disability outsiders are prepared to have of disability. And that is what is used by some of the less kind sorts to toy with us and cast doubt.

How we explain this better I don't have right now but I do think it is time. We all have to do it for all sorts of important things, and it isn't like it isn't a if not the universal issue for those with ME that others understand the actual limitation that we have better.

Given BPS are very keen to disappear PEM using probably the ambiguity tactic they favour I do think it's about time and encumbent on us all as a community to work towards nailing this one.

For a start I never thought I actually had ME/CFS for years even when diagnosed because I wasn't 'slow' - I loathe the boom bust insinuation now (and knowing what is behind it all in some laypersons and definitely certain professionals) and that's inaccurate in certain ways, and really one day I just stepped back and realised when did it deliberately get lost that most people before all of this understood what they saw perfectly well because you get ill and are whacked out for unreasonable amounts of time by exertion. And yes, that limit on it is going to be the bit that then needs to be made more explicit by severity - but also so is the extremity of 'payback'

Pacing doesn't cut it and automatically triggers people to just think they know what it is and are being kind slowing down a bit for someone. Goodness knows how someone can do a 'manual' that covers all the severities - that's the giveaway really isn't it that they've not got it yet if they think it involves a manual telling someone rather thn the other way around.

Anyway agree that this is ME I'm talking about rather than LC - and if that pacing terminology is going to start being bandied for that as a blobby entity including those who were hospitalised vs those with more ME-like vs other things all together, then discussions on terms are probably even more time-urgent.
 
Classic MEA just sharing the article without any analysis / caveats. Not good enough.

EDIT: There is now a post below this saying MEA recommends pacing etc, but at the very least they should be adding these disclaimers to the original post. Others in the replies have raised the same concers.

FURTHER EDIT: There is now added material in the original post.

Post is here: https://www.facebook.com/meassociat...ujnf18yeXxdQ5PLiwDUP3URHqqvWCUw7sQLCGX4k7VTDl
 

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The WHO guide is here:
Support for rehabilitation: self-management after COVID-19-related illness second edition

Note that it says this in the exercise section:

You might experience worsening of fatigue and other symptoms (described as “crashing” or “relapse”) after minimal exertion. This is described in scientific terms as “post-exertional malaise”, or PEM for short. The worsening typically is felt hours or days after physical or mental exertion. Recovery normally takes 24 hours or longer and can affect your energy levels, concentration, sleep and memory, and cause muscle/joint pains and flu-like symptoms. If you experience PEM, you need to avoid exercise and activities that cause PEM and aim to conserve your energy.

If you don’t experience PEM, you can gradually increase your level of activity or exercise to improve your fitness levels. You could use the Borg Rating of Perceived Exertion (RPE) Category Ratio CR-10 Scale (see next page) as a rough guide to gradually increasing your activity level. This scale is a subjective assessment of how hard you feel you’re working on a scale from 0 (no exertion at all) to 10 (maximum exertion).
_________________

So it looks like the researchers here have ignored this and tried to get people with PEM to use the Borg thing to increase their activity.
 
Lidia Thompson said:
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.
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It looks like they've left out the crucial bit of the WHO protocol [pdf], which is:

If you experience PEM, you need to avoid exercise and activities that cause
PEM and aim to conserve your energy. If you don’t experience PEM, you can
gradually increase your level of activity or exercise to improve your fitness
levels.
Click to expand...
 
Lou B Lou said:
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
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This is is really the height of pseudoscience propaganda. It's as absurd as touting a vegetarian diet that features meat with every meal. Almost every detail involved is completely wrong, including the main concepts.

How can anything out of medical research be trusted anymore? They can report that up is down and almost no one cares, it gets reported as if it's true. Out of a single open label study, a design so poor that it's not used anywhere else in society, not even to make trivial decisions.
 
Lucibee said:
Also noticed that in the Pulse article, it says that the "home-based pacing protocol" was "developed by the [Leeds] research team for the World Health Organisation..."
so I've contacted WHO Europe to ask whether this was indeed the case.
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So they don't bother checking any of the basic details, even when they report to professionals.

Good grief what an absolute mess this profession is. This is a completely unique level of mediocrity.
 
Trish said:
So it looks like the researchers here have ignored this and tried to get people with PEM to use the Borg thing to increase their activity.
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While somehow slapping themselves a WHO sticker of approval on a study that has nothing to do with the WHO.

It's a good bet to make when even colleagues reporting this can't be bothered by this.

Good luck trying this in a normal industry. Use the HDMI logo or one of the industrial certifications without approval and see how quickly the legal department tears you a new hole.
 
I think there is a fundamental problem that there is no evidence that telling people with PEM to exercise is of any benefit to them. So why tell people to try to do 'exercises' at all. It makes no sense.
 
Trish said:
I think there is a fundamental problem that there is no evidence that telling people with PEM to exercise is of any benefit to them. So why tell people to try to do 'exercises' at all. It makes no sense.
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I think the best way to put this would be to apply the same logic to a sedentary person who would do this level of exertion as reported in most of those trials.

Let's take someone who hasn't done any physical activity in a year. Not bedbound or anything like that, just the ultimate couch potato. Make them do a very slow gradual exercise program that goes so slowly that by a year mark they've increased only trivially, say 10% more steps on the 6-min walking test. Which is about the level of the claims about GET. Hell, go nuts and do 20% if you feel fancy about it.

Is that person more fit at the end than when they began? In better shape? Has improved their physical condition? Laughable. Of course not. It's such a low level of exertion it cannot possibly count as conditioning.

I don't understand how that basic logic can be suspended alongside insistence that there is nothing wrong with us, which would be comparable to the example of a highly sedentary person as far as they claim.

It's as absurd as a financial program that sets aside about $1 per day and promises you'll have millions in a few years. Nothing adds up, it takes complete suspension of disbelief to pretend this is legitimate.
 
rvallee said:
I think the best way to put this would be to apply the same logic to a sedentary person who would do this level of exertion as reported in most of those trials.

Let's take someone who hasn't done any physical activity in a year. Not bedbound or anything like that, just the ultimate couch potato. Make them do a very slow gradual exercise program that goes so slowly that by a year mark they've increased only trivially, say 10% more steps on the 6-min walking test. Which is about the level of the claims about GET. Hell, go nuts and do 20% if you feel fancy about it.

Is that person more fit at the end than when they began? In better shape? Has improved their physical condition? Laughable. Of course not. It's such a low level of exertion it cannot possibly count as conditioning.

I don't understand how that basic logic can be suspended alongside insistence that there is nothing wrong with us, which would be comparable to the example of a highly sedentary person as far as they claim.

It's as absurd as a financial program that sets aside about $1 per day and promises you'll have millions in a few years. Nothing adds up, it takes complete suspension of disbelief to pretend this is legitimate.
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it's even more ambiguous than that with this study/clinic though isn't it? things like 'prepare for' and 'return to normal level of exercises'. Which if they and the people doing it knew exactly what that had been before they had covid, and they are measuring 'the whole package' of and then following them up 6 and 12 months (and probably 1,2 years down the line too) later to see if doing so didn't cause a big crash might be the first time a study actually used a definition of recovery that was consistent with what laypersons would think it was.

But instead it sounds like a 6 week return to work after an operation programme.

And has anyone checked about their real drop-outs ie who got sent there vs who actually completed difference. If they are going to insist on using the ambiguous term long covid to include post-acute as well as ME type then you'd think they'd be interested in the individual outcomes of those who didn't complete or weren't suitable just as much as those who did in their reporting - more so given they've clearly read the warnings about PEM enough to include it as a little caveat, so could be reporting on how many who were sent to them turned out to have this at least.

Over a decade on from PACE and we still don't have this type of thing nailed. All in the name of simplicity so you can say something declaratively without nuance as to what your study actually found and what it might mean. So science can never build on the results because they leave behind whatever % in all these studies don't respond or do get side-effects
 
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