NHS England now lists ME (not CFS) under neurological conditions but puts it in potentially unhelpful category

I'm hoping the NICE guidelines might move things in the right direction, but it will still leave us with a long way to go no matter what.

Realistically, i don't think people like Crawley will go. Shuffled sideways eventually is probably the best we can hope for. Otherwise there would be an admission of guilt and failure. I would love that to happen, I don't think it's impossible, but I can't see it.

I agree with @Esther12, until there is a radical change of opinion about ME in the NHS, then I wouldn't want any more treatment, especially by nurses.

I say especially by nurses because the less training and experience people have in a given field, the more rigidly they will follow the rules and guidelines, even when they can clearly see they are doing harm. If the rules say to do it, then that must be okay.

As is there is no personal responsibility as long as rules and guidelines are followed. They are more important than patients wellbeing and we know the current guidelines and approach hurt people.

 

There are some excellent nurses, such as Caroline Kingdon, who's very popular with patients.

It's all down to training, ultimately. We've seen the FINE trial training, so it's clear where that went wrong.

 

Yes, I've only ever heard good things about her. Sadly, like the good ME consultants we can't clone her.

Even good nurses have to toe the line in the clinics they work for, though. That or go elsewhere.

Until something fundamentally changes, then more of the same just puts more of us in harms way.

 

Yeah, I think that we'd need those sorts of massive changes though. Having seen how Britain works, that seems like just a lovely dream. I think that to get in that direction there we'd first make it very clear that the current services are a terrible use of money.

I didn't mean to sound like I was saying all nurses were terrible I'm sure that there are lots of good and helpful individuals.

But training is important, as are the views of their colleagues, the claims in textbooks, Cochrane,etc. It's the whole system. A system that rewards and promotes someone like Crawley is not one that we can have any confidence in.

 

Caroline trained Dio ( Dionysios Giotas) to assist her with house/bedbound patients and , then later, they both trained more nurses to do the Biobank medical assessments in Norwich - I will try to find the article.

They all do the appointments in exactly the same order, for the Study that I am on. But these nurses also understand that the bedbound patients will not be able (or should not even be attempting) to do some of the tests.




ETA link with the nursing training by Caroline Kingdon

 

Anyone guess why the NHS might now be classifying ME as neurological and indeed using the term ME on its own at all when usually it’s CFS/ME or CFS. ?

 

https://images.app.goo.gl/SU7jEiWVj5EBTX8k6

27.6.2016 Nursing in Practice by Keith Geraghty

 

It literally could be a cut and paste mistake.....who knows?

 

Maybe but seems a big departure, and to C & P they would have had to delete the ever present CFS. I wonder if it’s to cover themselves/be sensible with the coronavirus guidance or if it’s convenient to move ME there where it can still be approached as an FND

 

Or it could just be that whoever updates the website uses that term over CFS, or considers it best to use the most commonly used (by patients) term?

 

I don’t recall ever seeing medical stuff use that term alone, if an individual has that view in officialdom let’s hope we see more. I wonder if it also indicates a move, with the NICE guidelines to see more recognition at last of ME- PEM etc as distinguished from the wider CFS umbrella.

 

"People with neurological conditions have the lowest health-related quality of life of any long term condition"​

This refers to the Neurological study that found patients with ME/CFS (as they called it) had the lowest quality of life of any neurological illnesses.

So again, downplaying, but steps in the right direction.