I think it should be done again, and the right questions asked in the right way. Over the last few years some ICBs have started linking up GP datasets, so some ICBs will now have data on people diagnosed with ME and CFS including people who have not been seen at a trust in the last X years (the study mentioned in the thread identified people through hospital records only, people had to have visited a hospital in the last X years). It won’t be all ICBs but could allow inferences to be made, it also won’t pick up people not coded at all.
I agree that I think we need to try and get the experts thinking on this one.
Particularly if anything being gotten hold of is only measuring those who are 'accessing care' for a condition where coercion has been used to prevent/discourage people from doing so. But also what other illness doesn't have proper clinics that monitor long-term and has actual treatment that doesn't harm? SO using what would be sent for those illnesses that do isn't equivalent for one that has a 6week course and bye bye.
It is a very important issue. It relates to the funding so is everything really and I think has been played over the years. How you get back control so that people are slotted into the correct categories when those in charge of doing any diagnoses are having different options sold to them and so on is a hard question.
FND has been a way of diverting funds as is trapping people under mental health diagnoses and so on.
And we have a chicken and egg situation where many people know that a CFS diagnosis on your records only gives you a black mark regarding access to any investigations or treatment for anything else still. And those who might have ME/CFS will be in a position where they are also reading the misinformation and thinking, as I did, the description of the condition sounds like nothing they have. But some tired people might think it fits if they read the NHS website.
Until there are some decent clinics that offer something who knows what is being measured by them and dumped into it. Whether someone gets sent to one place or another seems to be based more on money and politics than symptoms?
And so, is there actually a way of side-stepping this and some expert helping to say on this occasion this way is how we are going to establish the numbers.
And at least if we had estimates for how prevalence might look then we could nationally compare to regions that might indeed be miscategorising and get some insight from the numbers 'moving' from eg the ME/CFS pot to the FND pot and so on.