Discussion in 'BioMedical ME/CFS Research' started by John Mac, Sep 18, 2019.
From frontiers in Pediatrics
I greatly appreciate the effort and I haven't read far yet. But this makes it sound as though we patients are lying around limply like damsels in distress while the brave researcher, clinician and caregiver knights do battle for us. Sure, there's some truth to that, but it's not the whole truth. It's a bit removed from the 'nothing about me without me' approach that is seen as best practice in the disabled community, and it undermines efforts to have the medical profession listen to the patients.
I also think this might be a problem. Sure, no one really knows and there's a grey area where some people may be so lightly affected as to appear healthy, but it's probably better to err on the side of caution. Claiming such a high incidence might make the fact that we are invisible and under-served so unbelievable that the whole idea of ME/CFS might be questioned. I think 0.4% is a better guess for now.
Edit - reading the Valdez paper now - I can see how the writer of the editorial might have settled on the 1% figure.
There's an existing thread on the Valdez epidemiology paper here:
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