ME/CFS services in the United Kingdom

I think the issue here is that many non-ME-specific services (e.g., pain clinics or rheumatology clinics which only sometimes deal with ME cases) don't feel confident in diagnosing patients.

But in my experience, dedicated services typically feel they can recognise 'well defined' cases using clinical criteria and a thorough work up (in conjunction with proper exclusionary testing).

I know many ME/CFS specialist centres *do* diagnose, and they use a combination of specialists and therapists to do this. BACME guidance mentions this and which criteria are most often used (Fukuda and NICE 2007).

This probably creates a bottleneck in services, where everyone has to go to one of a limited number of services for diagnosis, which thus delays everything. But people are getting their diagnoses from somewhere.

In general, I think it's GPs who are most unlikely to diagnose, since they lack the confidence (this appears to be backed up by studies and surveys alike). But I do take the general point that those who don't deal exclusively with ME/CFS may prefer not to diagnose if they can.

 

attitude changed for the better or worse @Amw66

 

Sentinel Healthcare lands at PSP with health training hub boost for Devon

https://www.theplymouthdaily.co.uk/...are-lands-psp-health-training-hub-boost-devon

(anyone have any more info/experience of this service?)

 

The MEAction survey had a few respondents (8) but not all answered all the questions on the service so the data is not particularly useful for drawing one conclusion of another. However, it is here if you want to have a look. Select the Pymouth service from the dropdown on the top left. Best viewed in Chrome on a laptop or a PC. If you have any difficulties with it drop me a message.
https://www.meaction.net/2019/12/05/how-did-your-local-me-service-perform/

 

Appears to be this: https://www.sentinelhealthcare.co.uk/patients/chronic-fatigue-syndrome-me/.

Doesn't look competent, mostly aspiration fluff:

Yeah, completely useless fluff: https://mk0sentinelshvb9ngm6.kinsta...8/session-2-effective-rest-and-relaxation.pdf, advises "Effective Rest and Relaxation", which is totally a thing and a "tonic for the body, mind and soul". Totally not a Goop affiliate, though.

 

Ah, but they aspire to be.

 

Wow talk about starting the gaslighting early, it's on the first page!
So if the person ends up worse instead, because of your misguided interventions, it's because they don't have patience, determination or courage.

"other symptoms include" 'Post Exertion Exhaustion'. For goodness sake

It's all very patronising in tone. Lots of unnecessary exclamation points. Couldn't face wasting energy on any more of it.

 

note the physio section @PhysiosforME

 

Improving sleep....

They really do think we are all as thick as 2 short planks. I mean would it ever have occurred to you that if your bed was uncomfortable you might need to change it so you could sleep better? That's not obvious is it?! For goodness sake, i'd have worked that out aged 4! I am so glad we have these clever people to educate us.

"If you wake during the night needing the toilet try reducing your fluid intake a couple of hrs before bed" It's beyond insulting that they think we cant work out what would be obvious to a 9yr old

 

Yeah, that's a big pile of incompetent garbage, sprinkled with some of the simple advice that preceded the BPS takeover. It's all about thoughts and beliefs and you can aim for total recovery, if you want it. Typical ME-BPS pseudoscience.

 

Such wisdom. Much experts. Tens of millions of dollars went into this illness model. :chef's kiss:

 

Particularly interested in how these people are planning to increase patients' self-awareness - is that a new one?

 

innit… yeah innit

 

where is 'imperial'?

 

London - imperial college london

 

That does not make a whole lot of sense to me.
I am wondering who at Imperial is doing this sort of testing, and maybe prescribing?
Anybody any clues?

 

https://twitter.com/user/status/1205775137238343681


eta:

https://www.imperial.nhs.uk/consultant-directory/luke-howard

see also:
Dr Gulammedhi Haji
https://www.imperial.nhs.uk/our-services/cardiology/meet-the-team