Living With: UK digital platform for NHS services including ME/CFS

Utsikt said:
I think we should be concerned about what kind of data that is shared with the HCPs.

If you track you activities and symptoms, and it shows a crash, what’s stopping them from inferring that you’re not living with ME/CFS properly, and therefore you’re sustaining the illness through push-crash cycles?

We can’t expect them to interpret the data rationally or in good faith.
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When we're fighting for our lives does push-crash really have any legitimacy in a defence to not following NICE Guidelines NG206?
 
Utsikt said:
No, there is no defence to not following the guidelines. But given the history of the BPS proponents, we have to assume the worst in my opinion.
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Well there is as they can use clinical best practice (can't quite remember the exact phrase at the minute) and gold standard evidence based etc. in ither words - PACE.
 
The audacity of calling any of this treatment is beyond me, complete fairytales, their faith in ‘if you do this’ is no different to the lightning process of believe it hard enough and it will work, pacing is survival in the face of nothing else and even then it can't guarantee this disease wont eat away at you until death, we have no idea yet why some people are milder than others, all this does is allows health professionals to continually change the goalposts and assign blame when it doesn't work, you either rested to much and are deconditioned/unmotivated or whatever activity you record was too much/a bad choice, the perfect combination is a myth, because there is NO treatments for this disease (root cause) I've already lived through this crap and seeing it repackaged over and over again is devastating
 
Maybe the NHS wants to employ the people who play mummies and daddies, teachers and school, in role-play play-grounds Or maybe it doesn't. Commissioners would have to be bent.
Beth said:
... pacing is survival in the face of nothing else and even then it can't guarantee this disease wont eat away at you until death,

... all this does is allows health professionals to continually change the goalposts and assign blame when it doesn't work,

... you either rested to much and are deconditioned / unmotivated or whatever activity you record was too much / a bad choice,

I've already lived through this crap and seeing it repackaged over and over again is devastating
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The admin and clinical tools in queston are the tools designed to be machine-read. These tools are not designed for human use. These are the tools that operate their human operators. A tool should be usable, adjusted and applied with intelligence. These tools do not require intelligence.

Heavily graded people can get a kick out of grading lesser beings, but its the tool operating them telling them what to do every step of the way. Intelligence need not apply. Timed out

Steps up the input and output. People are embedded in a vast machine already, Its accelarated every year. Algorithmic logistics all break down, because its not designed for human tolerances. The supply chain chokes up.

Massive delays at massive depots supplying massive superstores. Gridlock on a roundabout. It defeats itself, maybe. But then we crash with it. We are woven into it and it feeds and waters us

It just needs to be adjusted for human tolerances. I think we epitomise the human predicament.
 
Hope their comes a day soon as possible when we can answer questions with information like this instead of ‘behavior patterns’ etc. Not a ‘structured thought diary’ but things like this and whatever else is yet to be discovered https://www.omf.ngo/haptoglobin-pem-mecfs/
 
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