Graded exercise therapy compared to activity management for paediatric [CFS/ME]: pragmatic randomized controlled trial, 2024, Gaunt, Crawley et al.

Thank you @Hutan.

 

I'm just now getting to look at this paper. I'm a bit confused that activity management is described as a form of pacing. Has this already been discussed in the thread? As everyone has noted, it sounds like a form of GET yet they describe it as pacing.

 

Yeah @dave30th above I think, certainly somewhere on the forum.

 

They have never understood that PEM is not just due to physical activity... Its GET by a new acronym, packaged to " comply" with new guidelines. Madonna has less reinventions than this bunch.

 

I think it is.

And far from being a retreat from their previous position, which people have speculated, I see it as a way to legitimise GET by (a) calling it something else and (b) removing some of the pressure to keep increasing the activity level.

I think this way because it's still an intervention. It's still 'delivered' by 'therapists', framed as 'experts'.

Pacing, on the other hand, is not managed by anyone except pwME, and there are no rules.

For newly diagnosed patients who prefer to receive advice face to face rather than read it, I can see a justification for the concept of pacing being explained by a therapist (though I'd much rather see a person with ME paid to do it, since they're a proper expert). But beyond that, the patient him/herself is the best manager.

But that wouldn't bring in grants and budgets, would it.

 

Yep.
Nope.

 

I haven't read much of that from the ME community, I guess by the point we start talking about it online we're so far done that it just doesn't get discussed, but judging from the LC community, the only reason why anyone prefers to meet with a clinician is because they expect more than simply being explained obvious stuff they already understand better than the clinician. I see almost universal disappointment from those appointments.

Probably the difference with pwME is that we've endured this crap for so long and alone that we just don't bother mentioning it. Or maybe because it's so rare that we're not simply dismissed with the wrong advice, but even being given the right advice is widely perceived as basically a waste of an appointment, since the hope was always for something, anything.

Then again, with LC there has been overwhelming reports that the community provides far better advice than any MD or another type of clinician could, which hasn't really been the case with ME before LC, since there was so much confusion around the whole thing. So some pwLC get some basic information right, then go see an MD, sometimes a team of them, and basically get told the same thing they see online, which is basically: thoughts and prayers.

But it has been years that some clinicians have been pushing GET while calling it pacing. Either they think they're very clever, and we're all very dumb, or they just don't understand what any of it means and are simply parroting whatever latest nonsense is fashionable around them. I've seen quite a few examples of this over the years. It's a very explicit up-is-actually-down bizarro world.

 

It's a double bind in paediatrics in places where there are " specialist clinics"
If you need academic dispensation / accommodations you have to engage .
If you don't you may also run the risk of FII allegations especially if school attendance is an issue.
There isn't really any choice for most kids .
So a rebranding just continues iatrogenic harm.

 

Trial By Error: Will MAGENTA’s Null Results Finally End Professor Crawley’s Long ‘Reign of Error’?

For years, Professor Esther Crawley, the University of Bristol’s methodologically and ethically challenged ME/CFS investigator, has hoovered up millions of pounds from public and private funders to support her misbegotten research. She achieved this success as a grant magnet despite abundant and easily available evidence that she was violating core principles of scientific research.

Now, perhaps, the disastrous results of a much-ballyhooed study—“Graded exercise therapy compared to activity management for paediatric chronic fatigue syndrome/myalgic encephalomyelitis: pragmatic randomized controlled trial”–could help end her long “reign of error.” If so, her dominant impact on the treatment of British kids with the disease will hopefully dwindle or disappear altogether, along with her undeserved reputation as an authoritative and credible voice in this domain. The sooner that comes to pass, the better for families throughout the realm.

https://virology.ws/2024/03/10/tria...y-end-professor-crawleys-long-reign-of-error/

 

I can't say I've seen such a thing, except Crawley's LP trial and Magenta. Ultimately, it's up to the ethics committee to stop such inappropriate proposals so the real question here is why she was allowed to conduct such studies.

 

exactly. Why was she allowed to conduct studies in this manner?

 

Yeah, activity management ≠ pacing or energy management. But plenty of clinicians (docs and therapists) use the term pacing to refer to graded activity therapies. I have often seen patients describe activity management as pacing too.

Gaunt et al's definition of activity management is standard. Activity management has always included graded activity, and would more accurately be called graded activity therapy. Here's the definition in the 2007 NICE guideline:

I think it's likely that most activity management in the NHS involved quite a bit more focus on stabilising a baseline than most GET, but both have always involved the goal of increasing activity, including physical activity. I did quite a bit of searching NHS materials on activity management last year [materials from pre-new NICE guideline days] and every single one included increasing activity, including physical activity.

As Karen from @PhysiosforME pointed out in her tweet, a difference between GET and AM in the Gaunt et al study is that in GET the increases were supposed to be weekly, whereas in AM the increases were "when able".

Because targets in AM include both cognitive and physical activity, people doing it may have more wiggle room - if they're not making progress with their physical activity target but are with their cognitive targets, the therapist might still be happy with them. Whereas if you're doing GET and not making progress, the pressure is on. There's nowhere to run, even if you could!

Edited: Added [materials from pre-new NICE guideline days] to clarify that the NHS materials on activity management that I reviewed dated pre-2020. So they were from the time period that Gaunt et al's data was collected.

Edited: Clarified that the difference between GET and AM (that Karen of @PhysiosforME was referring to in her tweet) was as those terms were defined in Gaunt et al's study. Other centres might use different definitions.

 

right, but that was because the findings were so pathetic and it turned out to be under-powered, if I remember correctly.

 

HADS . Pretty crap for chronic illness

 

I doubt many of us are surprised - and the small number is perhaps because the type who would sign up to a trial like this - I don’t know how optional this was made in reality if it was recruited via the clinic - might be slightly different to the day to day traffic through a clinic.

I’d also think in terms of power structure and coercion.

Ie that number is very small I assume because ‘saying no’ is a risky option very few could even consider taking due to the balance of power that has been created and enacted on pwcfs/me. To the extent there is no such thing as informed nevermind consent in the area for most even as adults.

It seems to be clear from what we see about FiI accusations and reduagnoses with mental health or ‘pervasive refusal syndrome’ (which happens even to those who comply perfectly but the treatment doesn’t work and they get worse)

whether it is parents being wrongly persuaded it’s a good idea despite / putting aside the actual impact on the child they watch but have been told to see as ‘bad behaviour’ or the parents are absolutely getting it and desperate to keep their child safe but need to placate the system because of the barrage of ‘perceived threats’ these clinics have been set up to hold over both.

I’d imagine the ones who are in the position of walk away early are those with a child who is more well but being made worse fast - so it’s now, whilst the child is well enough they can defend themselves/ isn’t going to be carted off just for being more ill. And I’d imagine it’s the ones who are best positioned power and support wise to get through said threats whether that is a better school or social care or whatever and access to better legal protection and contacts or in a role better respected (high up I’d guess) harder to touch through their systems.

My question and the ones that need to be asked is: what happened to any of the ones who reported or actually did (and didn’t report it /tried to hide it in their answers fir the trial) getting worse? What did those parents and children on says trial think might be the short and long term consequences of doing so?

I find it heartbreaking we have a business with a ‘health service’ that when those who are most compliant and do all they can to do things right end up being made worse not only doesn’t feel bad and take responsibility to ensure they do the right thing to not make it worse and to look after that person they damaged safely and properly (and offer that to be then paying for someone else independent- because how inappropriate it might be trauma wise to expect them to be ‘trusted’ again), we instead find those people attacked as persons non grata for their broken bodies and all effort focused on disappearing them and the truth and forcing blame through lies onto them and their support system.

how much can or should any human withstand of this abuse?