Comment by ggm
14 hours ago
The NIH/RECOVER programme and equivalents worldwide provide a path to treatment for ME/CFS. Prior to covid, substantive funding for ME research was too small to explore disease pathways and diagnostics. Many ME sufferers were told their disease was solely treatable with CBT, and lacked aetiology. Basically, they were denied any validation of having a disease.
The NB thing, right now is "no common cause" and probably would stay there, but the patients deserve some basic respect and their concerns should be acknowledged. Handling small cohorts is hard. A lot of public health funding could be wasted but then things like prion disease, AGS emerge. Tick Bourne diseases in Australia receive short shrift because "they have never been seen here" but there is no domestic testing regime, it's expensive, and treatment (long term antibiotics) run counter to general views on risk/reward issues.
I'm not a health professional. I have a lot of respect for public health and epidemiology, the corner cases interest me. For ME, covid provided "evidence" which public health could use. Maybe for the NB thing something similar will emerge. I don't think Morgellens is going to turn out to be in the same bucket, I do think this is a socially acquired mental illness but perhaps I am unfair?
> Many ME sufferers were told their disease was solely treatable with CBT, and lacked aetiology.
This is true? CBT and related treatments were pretty much the only thing that had been shown to be effective at reducing the severity of symptoms (no one should be making claims about whether it is changing an underlying disease process, but improving symptoms is a huge deal), and the etiology was unknown. Any responsible clinician or scientist should have been telling patients exactly that.
What you are stating is considerably more controversial among medical researchers than you claim. I find HN tends towards these sort of views.
Fwiw I downvoted you because you didn't even bother to specify which of the GP’s many statements you think are controversial, nor why.
fair enough. i didn't really feel like getting in a back-and-forth about ME/CFS as i find they generally never end. CFS does not appear to impact energy to engage in online arguments.