UK: University College London hospitals (NHS)

[Jonathan Edwards]

I guess that there is a EULAR guideline for fibromyalgia.
It is interesting that rheumatology has decided to embrace fibromyalgia and refuse to see ME/CFS.

 

[rvallee]

I guess that there is a EULAR guideline for fibromyalgia.
It is interesting that rheumatology has decided to embrace fibromyalgia and refuse to see ME/CFS.

From everything I have seen in recent years, it has not led to any actual changes for those affected, the same generic biopsychosocial approach, and a whole lot of very dubious stuff about 'neuroplastic' this and "inflict yourself real pain to train your brain to tell the difference with brain-generated nociplastic bla bla bla". It's slightly different nonsense but it has the same roots. I don't think we're missing out on much, though on average it seems better than with neurologists.

I have not seen a single thing that has convinced me that it's actually realistic to build competent health care services about issues where the biology is not understood, it always ends up with the same useless static muddle. It should be possible, but there is something that blocks it from being realistic. Even guidelines more often than not seem to make things worse, the process always gets derailed.

Any cent allocated on anything that isn't real research, biopsychosocial/psychosomatic does not count, seems effectively wasted. It shouldn't be this way, but this is the state of things and it's not changing until we can at least narrow down the problem onto known concepts that fit in a biology textbook.

 

[Kitty]

It is interesting that rheumatology has decided to embrace fibromyalgia and refuse to see ME/CFS.

When I asked my consultant rheumatologist to remove the diagnosis of fibromyalgia she'd written into my record, she said it didn't matter because [edit: FM and ME/CFS are] the same thing. I said it mattered to me because I've never even been assessed for FM, let alone diagnosed with it. She grudgingly agreed to change it, while repeating that it really didn't make any difference.

I felt like someone trying to insist they were five feet three and a half, not five feet three.