I don’t follow the field closely, but I’ve only read qualitative studies on pre-symptomatic testing. There’s a wide range of experiences, including minors wishing to be able to test before turning 18.
This is an example: https://pubmed.ncbi.nlm.nih.gov/32162754/
More than 7000 patients in Norway have been requesting for years to dismantle the National Advisory Unit on ME/CFS because of their BPS approach.
In an ideal world, it should be enough to just ask for help. The patients shouldn’t have to specify what kind of help. But it’s incredibly naive of...
I just found the site that had a transcription, so the credit goes to the developers!
On one hand, I believe it’s quite common to believe that you’ve got symptoms before you test, even if you don’t have the mutation.
On the other hand, the people that do get sick often do not understand how...
The logical response would have been to feel guilty about misdiagnosing someone, not to feel guilty about having used a medical diagnosis per se.
And the logical response to this guilt would have been to be more diligent next time, not to start throwing around bullshit bps-diagnoses...
Not the study you’re asking for, but a recent Norwegian one found both under- and over diagnosis with regards to ICD G93.3 and the CCC.
https://www.s4me.info/threads/improving-myalgic-encephalomyelitis-population-sampling-kielland-et-al-2025.43293/
If my memory is correct: They mentioned that some of the controls went for tests because they were close contacts. They also excluded controls that had had covid-like symptoms or positive tests during the period.
But I agree that it’s not an ideal way to get controls.
I don’t think anyone has argued that it is perfect. I believe I said it was the best, as in the best we’ve currently got.
FUNCAP doesn’t ask about if you got PEM. I’m not sure I follow your argument, but that might very well be a me problem!
Does it though? It asks you about the believed consequence of doing activity X during an average day the last month.
Is that activity in itself enough to influence how much you can do the rest of the period?
Finding your threshold serves as a proxy for how much you could do that month, all...
Of course it does! Getting hit in the head is scary and you might become afraid of using your head again. Skilled practitioners like O’Sullivan are able to instantly recognise the telltale signs of any psychosomatic conditions.
In other news, the new state of the art treatment for...
Limitations (line breaks added):
Our study should be interpreted in the context of its limitations. First, our study used self-reported symptoms for a time period of up to 24 months as a basis of analysis which meant that in some cases, participants had to recall any signs and symptoms for a...
Symptoms they asked about:
Fever
Runny nose
Cough
Sweats
Headache
Migrane
Loss of power in muscles
Joint pains
Exhaustion while resting
Exhaustion while being minimal active
Shortness of breath at rest
Issues with sense of taste and/or smell
Tiredness
Loss of motivation
Chest pain
Sleep...
Regarding the post above, it seems to me like O’Sullivan is possibly arguing that the psychosomatic model claims that any symptom can be psychosomatic, and consequently, the fact that a patient presents with symptoms indicates that it’s psychosomatic.
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