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Opinion Chronic fatigue syndromes: real illnesses that people can recover from, 2023, The Oslo Chronic Fatigue Consortium
- Thread starter Kalliope
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- oslo consortium
Joan Crawford
Senior Member (Voting Rights)
"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)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.
rvallee
Senior Member (Voting Rights)
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to revive the term "post-infectious fatique syndrome" (PIFS), which is the term COFFI uses and is mentioned in the now-outdated Fukuda definition from 1994.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.
In using the term syndromes, I think they are deliberately creating the impression that any fatiguing illness without an established pathology is essentially the same, so they include ME/CFS, Long Covid, as well as burnout and other stress related problems. Then they assume it's all stress related.
It seems odd reading the stuff in this silly article suggesting we choose to lie in bed in darkened rooms, with the implication that we are either malingering or misinterpreting ordinary fatigue as pathology and give up trying to be well or afraid to be active - while at the same time as reading another thread about a thesis where we're perfectionists who keep pushing ourselves to behave as if we're well and not accepting our illness, and need to learn self compassion.
It's the same old story, either we push ourselves to achieve and boom and bust, or we retreat from everything and are afraid to move. Either way, the conclusion is the same, we're at fault and need therapy to set us straight. It's so incredibly patronising, especially coming from people who have spent years patronising and othering us, not listening and still haven't a clue.
It seems odd reading the stuff in this silly article suggesting we choose to lie in bed in darkened rooms, with the implication that we are either malingering or misinterpreting ordinary fatigue as pathology and give up trying to be well or afraid to be active - while at the same time as reading another thread about a thesis where we're perfectionists who keep pushing ourselves to behave as if we're well and not accepting our illness, and need to learn self compassion.
It's the same old story, either we push ourselves to achieve and boom and bust, or we retreat from everything and are afraid to move. Either way, the conclusion is the same, we're at fault and need therapy to set us straight. It's so incredibly patronising, especially coming from people who have spent years patronising and othering us, not listening and still haven't a clue.
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!
JemPD
Senior Member (Voting Rights)
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.
JemPD
Senior Member (Voting Rights)
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.
rvallee
Senior Member (Voting Rights)
Good old Catch-22 disease. Whatever you do, or don't do, you're at fault.
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?
Grigor
Senior Member (Voting Rights)
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
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No just the job description “wise man”