A thread on what people with ME/CFS need in the way of service

[Kitty]

Many of the UK specialist services don’t offer a diagnostic service, but only accept referrals once the diagnosis has been made.

Which makes sense, but it's clear that in at least some places it's the other way around: GPs refer suspected cases on to their specialist clinic for diagnosis.

 

[NelliePledge]

Also if there’s actually a medic and nurse specialist practitioner role presumably that gives the GPs a source of advice.

 

[Jonathan Edwards]

Yes, I just see this as normalising the communication and learning pathways for everyone in line with other 'real' diseases.

 

[Robert 1973]

I think it’s looking good, particularly with the changes that have been made following feedback.

There appears to be near consensus here but it would be useful to hear from anyone who would not support the proposal in the current form.

I suspect that the recommendation not to prescribe off-licence drugs may be the part that is most likely to meet resistance from some patients – even with the longer explanation and caveat about withdrawing medications that have already been prescribed. But I don’t have a suggestion about how to avoid that other than to make the rationale even clearer.


Typo in bold:

Neurology seems most relevant but rheumatology has accommodated a number of conditions the do not easily fall into a specialty category, such as chronic pain and muscle disease, especially where there may be immunological features.

Rogue comma:

It may be possible to cover some of the needs for assessment and care at home through primary care staff such as , including