Opinion Researchers See Hope in Symptom-Guided Exercise for Long COVID With Postexertional Malaise, 2024, Bock (in JAMA)

I heard this from a couple of PACE participants.

 

Well, they view all of them - GET, CBT and Activity Management, in their pre-2021 forms - as graded activity therapies. GET is the only one confined to physical activities only, but they do include things like gardening or sitting up in there, depending on people's level, as well as identifiable exercise. And they do often point out that the increases are in addition to what you're doing already, eg GETSET patient booklet:

and Wallman 2005 https://pubmed.ncbi.nlm.nih.gov/16053417/:

But they don't measure whether this is happening or not. It's quite possible that this was the fatal flaw in not noticing what was going on.

Based on what's allowed in the back door of the 2021 NICE guidelines, I don't think they realised anything at all!

 

Although it was a very small study, these researchers found on reviewing their data that patients could only reach the prescribed daily activity goals for the first 4-10 days, and subsequently exercise time dropped substantially.

https://s4me.info/threads/time-cour...activity-in-cfs-2005-black-and-mccully.25238/

 

Yep this is just a long anecdote exampling how there are some who still don't/won't get that there is another definition of 'can't' .. which is that arrogance that has made us all very ill by people spreading misinformation about it ... which is that when we force ourselves we can indeed hurt ourselves and it will hit days later when conveniently the HCP (or layperson who was just being selfish or a bigot or enjoying being mean) can avoid witnessing it.

Obsessively trying to pretend 'but seeee... they just needed us idiots who think we can learn by not listening and not learning and not growing but just speaking our same misunderstanding at the disabled people as if they must be the stupid ones to simplify it all' is abuse in actual implementation.

I understand their mental health type state of denial and unwillingness to grow when it is something they don't fancy doing as a change in their job that's how post-hoc justification works, but forcing yourself onto people who you hurt because you insist 'if it hurt you last time it can't have been the thing I'm about to do, just gizza nother go' and then walking away still refusing to be accountable for that by then foreseeable and warned about harm you are about to impose onto something is amoral and wrong.

And no amount of weasel words and pretending something is different by pretending you don't understand a term or rewording its meaning should make these people less liable. It is a paper-based exercise in people who want the world to bend to what works best for them and hammering at individuals who they get angry at because in their mind they won't conform to their constructivist re-imagining of reality, but in truth are their victims of a subject that is jettisoning science in order to not be safety compliant for them.

It is hardly mind-bending or field-bending to have a condition or a drug/treatment where the harm comes later. And is cumulative. I quite simply don't get the arrogance-ignorance going on here.

If it was 'symptom dependent' then it wouldn't require an enforcer? Far too many afflicted by the condition were bigger athletes than they were prior to being ill! And the rest fit in a heck of a lot in their life. SO the idea they aren't tenacious enough to with basic advice when they first get it from people who do know what they are talking about ie science work things out a lot better than them is outrageous bigotry and stupidity.

What on earth do they think they are actually showing if they aren't following up people three years on and showing a very significant % recovery from where they were to almost normal? Other than a form of coercion on the vulnerable and how much you can make them bend the facts under duress/social pressure/being forced into 'wishful thinking' by threats of 'we'll accuse you of having a mental health problem unless you cave to toxic positivity and rephrase your level of disability' (and of course toxic positivity is actually anti-mental health and harmful too)?

Another reason why for these sectors they need to ban subjective assessments. And particular ban them being done by anyone not utterly independent, without physical function tests, and completely banned where any sort of communication coercion like the physio-CBT (pretend CBT which is more about making people say things differently and hasn't been designed on a model that works).