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

Would like to see a deep-dive into this data if it's available and someone has the time.

 

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.

 

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

 

Todd Davenport, from Workwell, has posted a number of tweets about this study, and Lucibee has gathered them together into this Twitter thread.

 

It looks like they've left out the crucial bit of the WHO protocol [pdf], which is:

 

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.

 

resistance is futile

 

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.

 

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.

 

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.

 

The Leeds leaflet does say on page 45:

 

Not quite the same as saying "avoid exercise and activities that cause PEM" though, is it!

 

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.

 

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