I knew there was something wrong but doctors kept misdiagnosing me

I knew there was something wrong but doctors kept misdiagnosing me (msn.com)

 

Worth a read. She also describes the support she gets now as amazing - I think this is mainly due to the MS trust as she cited one GP after her diagnosis said silly thing ‘you don’t look like you have MS’

you never know whether to take with a pinch of salt because support varies on individual situations etc but the support seems like a world away

yet we’ve seen the odd inkling on here if the BPS still sometimes wanting to drag MS in to psychosomatic even now.

And how the system even now there are pathways are focused in the UK on preventing access to diagnostics to ensure that no-man’s land where people are abused on that excuse (no proof you are ill, not going to investigate in any serious way to see if you are) is maintained so it’s circular

why are people so darn abusive and why is abuse being taught as if it is ‘the new psychology’ in the form of BPS and Chalders crap false belief ‘take away their rights and voice’ campaign that she built a kingdom on

and I have to ask the question about the set up re patients and organising that means MS is in such a different place vs ME:CFS and whether there is anything we can learn

 

This is what it really means to say that MS used to be considered psychosomatic until MRIs. Confirmed cases probably mostly weren't, although for sure a lot of patients were told a bunch of nonsense anyway, but until the tools to confirm cases were commonplace, the vast majority of cases were missed, psychologized, with no way of knowing how many real cases there were.

It still happens, with no excuse for it, so going back X decades means more missed cases, growing along with X the further you go back in time. At some point it was probably 99%, even now most cases involve lengthy delays because the tools are inadequate, the imaging has to be done when lesions can be seen by them, and they must not be missed in the process.

It is fundamentally different than saying nonsense like "ME doesn't exist", but the outcome is exactly the same in the end. The latter is far more incompetent, but there is no real difference in outcomes, in harm done, and in how much scientific progress is delayed. "You don't have this because I can't confirm it" is the exact same thing whether no cases can be confirmed, or only some can.

This is one frustrating thing with all of this, that even once all this malignant nightmare is over for us, there will be no way of knowing exactly how many lives were thrown away, how much real harm was done, how much needless suffering was caused by medicine's ineptitude in dealing with the limits of its knowledge, people ostracized, rejected from their own friends and families because of a system so dysfunctional it can't even acknowledge that it can possibly be dysfunctional at all. Because almost none of it is properly recorded, with no way of looking back to reassess. It's mass graves where the only difference is that the victims suffered longer before they got buried.