Publication of the NICE ME/CFS guideline after the pause (comment starting from the announcement of 20 October 2021)

Ok, sorry, it's my perception, that they settle - which of course may be incorrect. I'm sure a lot of work is done to try to get more, and perhaps I expect too much with historical headwinds against them representing a group of patients that has been so marginalised for so long.

I suspect we could have a whole thread on the charities, but, I think the point I digressed from, maybe rather clumsily, was that this will be a test for them; arguably, the single biggest event to happen in ME circles for decades, let’s see how successful their media campaign is.

 

Not intentional, I think it's the champagne already working (I've started ahead of midnight, in case some new weird pause occurs) (I corrected before seeing your reply, sorry!)

 

I guess I'll be celebrating tomorrow . The CBT/GET paradigm is coming to an end and that is good news for everyone.

 

We've had a bottle of champagne sitting in the bottom of a wardrobe since 2010. We bought it to celebrate the final payment on our mortgage but a domestic crisis intervened and we didn't feel much like opening it. And there it still sits. Do you think an eleven year old bottle of not very expensive champagne might still be drinkable or as flat as a pancake?

 

Yeah absolutely.

 

Only one way to find out ...

 

Exeter hospital is near me and that is where David Strain works (although not in neurology), so I am considering asking to be referred there. I wouldn't go for anything to my local hospital in Taunton as they are appallingly incompetent. Both Bristol and Plymouth have FND clinics and spout woo on their websites.

https://www.actionforme.org.uk/news/meet-our-new-medical-advisor,-dr-david-strain/

My GP is happy to send me any draft referral letters where I can highlight parts I am not happy about and make my own suggestions. I am still sitting on her (far from perfect) draft from 2016.

 

I wouldn't be seeing them for ME, my neurological symptoms are not the common ones seen in ME. I can't get life insurance without them being investigated further (doctor from Aviva's response after seeing all the many pages of my GP medical report that was sent to them in 2016).

 

Some positive and good news from Suffolk.

Our wonderful Commissioning Team have programmed ME Service development for next Tuesday's Meeting of the local Alliance.

Our Deputy Director of Performance Improvement · NHS Ipswich and East Suffolk, North East Essex and West Suffolk CCGs NHS Ipswich and East Suffolk and West Suffolk Clinical Commissioning Groups will be presenting a paper (outlining our suggested co produced service model) under her Winter Statement slot!
So hot off the press NG 206 will be very welcome!

 

Depends how fussy you are ...

 

Champagne is drinkable?

Never found it to be so.

I thought it was just one of the things people open as part of a celebration, so others can see they are feeling celebratory. Same sort of thing as Christmas pudding, gotta have it at Christmas, just so people know your celebrating Christmas, regardless of the usual 'orribleness of it.

 

I gather the embargo on the finally-to-be-published guideline is lifted from a minute after midnight tonight.

 

I did end up with quite a thick file but not by choice.

Even after diagnosis my GP at the time kept referring me for rule out consultation at every new symptom. I had to put my foot down and refuse to go to any more in the end. I was worn out with it.

It wasn't that I was seeing him that often but every time I saw him he sent me off to.someone else. I eventually found out the local health trust were getting very annoyed with him because he had developed a bit of a reputation for this at the local hospitals.

At a later appointment, a consultant told me he knew my problems were all in my head because of the thickness of my file. If I had all those things wrong I'd be dead he claimed.

Extremely annoyed, I suggested he check the reputation of the by now retired GP who went to out pasture under something of a cloud and the excessive referrals were part of that.

So even where there is a thick file, its not necessarily that the patient went looking for referrals or anything beyond someone just confirming what they were experiencing was part of ME.

This was back before t'interweb and pwME weren't supposed to talk to each other.

 

I just checked my whisky and it's fine. (grins) The first time I see the guideline up on NICE's site, I'll raise a glass here and say a huge thanks to everyone who contributed, for all their endeavours.

 

So I’m not the only one planning on checking just after midnight then?

 

Is it now too late to register as a person holding a steak?

coz the option still seems to be available.

 

Sigh.