Hi both, thanks so much for your replies, honestly so reassuring to be in communication with some sensible and sensitive people!
Maybe stay focused on getting a diagnosis and politely decline any dubious proposals for treatment.
Yes, this seems like the way to go (if I do go), though it's unclear whether this guy is really qualified to make a diagnosis!
Maybe the simplest thing if you attend is to ask for assurance that whatever is offered is in line with NICE Guidelines and ask to be shown where that is written.
If you don't get satisfaction you would be entitled to complain to your GP that you did not think it was appropriate to be referred to a doctor who advocates homeopathy and does not use NICE guidelines and that you have a right to be referred to a proper medical service. You can quote my name - Jonathan Edwards, Professor of Medicine at UCLH.
Thanks for this - I'll definitely keep this in mind and in my back pocket as it were, much appreciated.
What is the benefit of getting a formal diagnosis which outweighs the time and energy expense of consulting a practitioner who believes in arrant woo? I know you have some tough battles on the go with the DWP, so if a consultant’s letter outweighs a GP’s summary of your disabilities (which in theory, it shouldn’t) then needs must. But if you’re keen to get a diagnosis in order to relieve uncertainty about your condition, then surely it’s only worth seeing a doctor who eschews mysticism and whose opinion you can take seriously.
Yes, these are good points and get right to the heart of it.
I think I have two reasons for wanting a diagnosis, the two main reasons are:
1) so I can take part in DecodeMe,
and
2) to see if I can be examined / investigated by someone (one of those rare unicorns) who does somewhat know what they're talking about biomedically, and might be able to properly rule out some of the things that in theory should all be ruled out in a differential diagnosis. As far as I can tell, so far I haven't really been seen by anyone who knows anything at all about ME...
I'm aware we've had various conversations on the forum about the circular Catch-22 nature of that particular problem - there not really being a specialization / a system that enables the hypothetical full differential diagnosis procedure to actually ever happen (as far as I can tell).
Regarding DecodeME, I suppose if the medical professional who made the formal diagnosis were a practitioner of arrant woo, their diagnosis wouldn't necessarily be any more reliable than my self-diagnosis, but it still feels it's important for me personally to respect the design of the study and not decide to tick the diagnosis box because I believe my self-diagnosis to be better than the only professional I've managed get an appointment with, and who happens to be ill-informed... if that makes sense!
I suppose partly because it highlights (as if more highlighting is necessary) the complete unfit-for-purposeness of the NHS on ME at the moment.
Regarding the DWP, thanks for your thought on that
@Shadrach Loom , as it turns out - having a confirmed formal diagnosis from a medical professional that I specifically have ME doesn't actually seem to make much difference one way or the either.
I have piles of documentation and letters from medical professionals confirming that I'm definitely very ill, and a diagnosis is pending, and the DWP seem satisfied with that without waiting for a specific confirmed diagnosis to make their decisions.
They fully agree that I'm ill, it's just how that illness translates to an amount of money where our views differ!
As you mention, it's more the awareness that while my self-diagnosis may well be better informed than someone with an MBA in Positivity & Leadership (for example), it's probably still less well informed than a (good) ME specialist... Not that I'm expecting any revelations, I just don't like to leave stones unturned generally!
So yes in conclusion, I'm feeling very 50/50 about if the appointment will be worth my time & energy or not.
