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.

 

[CamTi]

I have heard only really bad things about this service, my impression is UCLH is one of the worst places in the country to go if you have ME. Also, steer clear of their PoTS / autonomic unit service if they refer you there : you will almost certainly come out with a “deconditioning” diagnosis, probably told that you don’t have an organic illness, and that there will be no medication to help.

I know you only want a diagnosis, so you may be able to get away with just getting a diagnosis & then asking to discharge yourself, if you’re not happy with their service.

UCLH can be really great for other diseases and conditions, but not ME.

Just to add recent experience and confirm this is still happening at the autonomic unit. As a severe ME/CFS patient who's almost entirely bed bound, I got told I was stuck, didn't want to be like this forever, and so should agree to an arrangement of a physio doing graded activation with me, to get me sitting up a bit more each day and progressing to standing. She explicitly said there was no harm in this. She also literally whispered to ask about my "mood" and if I was on anything for depression, which is not part of my picture. And she attributed everything to deconditioning. Amidst all this psychologising and getting frustrated with me, she ignored my high diastolic BP on standing, and, ironically with her focus on MH, left me feeling a darn sight worse about everything following the call.

 

[bobbler]

Of course, we are living in times of endless budget cuts and there really aren't funds for anything above basic services (and often not even that). What they were saying was that even following the NICE guidelines to prepare a patient-led care and support PLAN was impossible, and this seems like pure obfuscation and, to be honest, deceit.

Even BACME has clear, if imperfect, guidelines and a template for preparing such a plan, which would at least allow pwME to be involved in deciding what they need and what will actually help them, and prevent the kind of gaslighting that seems the standard of care these days. The "challenge" model, gradually increasing activity (which is somehow not GET according to them), and endless hints that you just need to convince yourself that you can get better and you somehow will, this is what we are seeing.

A question for everyone here: If a young person with ME has managed to find a way to improve their own quality of daily life, reduce chronic pain and at least function in education (albeit mostly online), is it reasonable to demand, based on the NICE guidelines and principles of patient-centred care, that medical staff back off on their demands to increase in-person school? It seems verging on medical malpractice for medical caregivers to oppose such a demand, but that is what we are seeing.

just read this again years later. still spot on pertinent