FOIA requests to find the burden of disease in the UK.

[RogerBlack]

I hesitate to post this here - however I cannot find a more appropriate forum.

This is admittedly only one datapoint, but I found an enquiry made of NHS Fife (Fife has a population of 350000), which listed the number of ME/CFS patients involved with secondary care in Fife.
1118 cases in 350000, or about 0.3%.

If someone with the energy were to make the effort (the website is easy to use to request data), and to collate patients referred to secondary services, that could be interesting and fairly easy research which as far as I'm aware has not been done.
The numbers in this case are uncomfortably close to the estimated 0.2% I find in papers which claim to have done GP surveys.
This could of course mean it's working well, or something else.

The Fife service is well established and we are not aware of any significant year to year
variability: not including inappropriate and not appropriate referrals, a total of 1,118 cases are
open to the ME/CFS CNS service. 650 new cases have been opened since 2010.

The '650 new cases have been opened since 2010' implies that most patients seem unlikely to be recovering.