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?
alt Hacker News
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?