Who would you recruit to see ME/CFS patients then? Neurologists seem unwilling to even go near an ME/CFS patient, let alone hand out a diagnosis, based on my own experience and others'. We are left with the BPS folks as it is now, which is not good enough. People are completely dependent on having an actual diagnosis in order to for example receive any sickness benefits, and if there are no ME/CFS clinicians, there are no diagnoses to be made.
I got my diagnosis from the university hospital in Berlin, I had to wait 9 months for an appointment and do a whole load of exclusionary tests with a local GP before I was even allowed to go. Now that they don't see patients from outside Berlin, I don't know where I'd get a diagnosis from. I suppose I'd like to see the situation change so that non-private doctors within the health system are better educated and will give a diagnosis.
If it hadn't been possible to get a diagnosis from Berlin I would have done without. I could easily have gone to Belgium to KDM but did my research and decided not to - I didn't want to pay a couple of thousand for him to order dodgy tests from labs owned by his wife, and follow his own pet theories which haven't been validated (he doesn't publish much) and which would possibly make me worse (plenty of people have deteriorated after seeing him). I don't believe that anything is better than nothing.
If I needed sickness benefits it isn't as simple as just getting a ME diagnosis in Germany - I would be forced to co-operate with rehabilitation before being eligible for benefits, which means forced exercise in a clinic for depression. The situation is completely shit here. I haven't been near a doctor for two and a half years, and if I did, or ever had to go to hospital, ME is the last thing I'd mention.
I understand that those who are more severe than me will be more motivated to try stuff, and maybe I would too. Also those who need sickness benefits will try to jump through all the hoops and get it (including accepting a diagnosis of depression just to get half a sickness pension, I know people who have had to do that here). I don't have the answers, the situation is absolutely appalling. If the only way some people can get their benefits is by getting a diagnosis from a private doctor then I don't blame them, perhaps I'd hold my nose and do it too. But more private doctors isn't the long-term answer, it's getting the NICE guidelines changed, educating doctors in the health system, and trying to do what we can to dismantle the BPS machine.
