Opinion Chronic fatigue syndromes: real illnesses that people can recover from, 2023, The Oslo Chronic Fatigue Consortium

It shows how little credit these people give us. It also says a lot about them...

 

"8. Valuing the Patient Perspective: The patient´s voice is important. The voice of patients who have improved or recovered through cognitive, behavioural, or stress reduction strategies can offer valuable insights and should also be heard."

OK, so only valuing the perspective of patients who have recovered by 'their' methods and means. As in confirmation bias. And no way of validating, verifying diagnosis, mechanisms, etc.

So, perhaps they'd not be terribly interested in hearing about my recovery (or thereabouts) with biomedical means (long-term antimicrobials largely....). Maybe I should write to them.... politely of course Maybe that'd fall into a shredder? Surely not (end of sarcasm)

 

Chronic Fatigue SyndromeS?

By adding that extra "s" they really devalue ME/CFS, don't they?

 

If we were in the US, these are the ones who would have assault weapons.

 

They mean the Lightning Process, I gather.

 

Yes, one small letter says a lot.

 

They're including Long Covid. It's named and used in the main keywords. I'm guessing that's the main reason for this. Not that it makes any sense, but that never bothered them.

 

They're trying to revive the term "post-infectious fatique syndrome" (PIFS), which is the term COFFI uses and is mentioned in the now-outdated Fukuda definition from 1994. On the other hand, Dr Iwasaki and others are now using the term "post-acute infection syndrome" (PAIS). I know there's been some discussion of that term on here elsewhere.

 

The plural use of syndrome is weird.

Seems like an anemic attempt to disappear CFS as a discreet entity. Or maybe just a silly gesture to provoke people like us?

It strikes me as a peculiar brand of juvenile.

 

Good comment @Trish, about the opposing psychological views of pwME: perfectionists, or lazy, malingering, deluded.

Hmm.....next we'll be seeing we're all of these at the same time!

 

absolutely, as ive said before, the overall message is

You're wrong, your feelings are wrong, your behaviour is wrong, your coping mechanisms are wrong, your adaptations are wrong, your thoughts are wrong, your personality is wrong. It doesnt matter what those feelings/thoughts behaviour etc actually are. The specifics are irrelevant because whatever you do, think, feel, whoever you are, it will be found to be wrong. You are just. Wrong.

And the reason you are wrong is because we need to be, right.


I dont think there is any 'either' in their world- i dont think they realise their work says that either we are pushing ourselves or we're retreating, because to them we are both, like some weird chimera who can be simultaneously phobic of activity, and so desperate to do more of it that we make ourselves ill doing so.
We are every wrong thing, and any wrong thing. The specifics don't matter, the specifics are just for fun.

 

lol we cross posted

 

Ironic how 'false dichotomy' has been one of the go-to talking points of a lot of these names, they clearly wouldn't recognise a dichotomy if they ever saw one the wild.

 

Good old Catch-22 disease. Whatever you do, or don't do, you're at fault.

 

FWIW:

From:

 

This boom-and-bust never made sense to me for that reason, because it presumed the same individuals were doing both, and the impulses would seem to cancel each other out. The whole thing doesn't make any sense psychologically.

 

Are these the ancesters of Trudie Chalder? Are you suggesting there is wisdom somewhere in her genetic line?

 

Ruud Raijmakers who's introducing COFFI in the Netherlands via the ZonMw biomedical research program (he was also a coauthor of the Qure follow up study) refers during a talk to the paper by Choutka et al. but still manages to put PIVS, which is PIFS in Dutch, on top of the slide. It's so painful to see even a younger researcher stubbornly holding on to this nonsense.

At 05.56

https://www.youtube.com/watch?v=9CkS63AzHsw

.