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

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Andy said:
You have experience of knowing that the charities settle for 'some' coverage? What experience is that?

The charities I have interactions with would all like more and in-depth coverage, but it comes down to needing first journalist interest in writing something and then editor interest in publishing it - without those you don't any coverage, and those things aren't easy to cultivate for something like ME when so many in society have a negative view of us.
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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.
 
Chris said:
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!)
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;)

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?
 
Snowdrop said:
I would agree that ME charities have not been offered much in the way of opportunities to really present facts in depth in the past up to the present.

However, IMO, charity spokespeople have lacked a certain savvy understanding about how their words will be used. I have read public statements where the ME spokesperson tried very hard to be fair not understanding how they were undermining the good they had just communicated by doing that.

There is NO need to acknowledge ANY point the BPS might have. They will not return the favour -- unless it's at some other time on twitter for example and it serves some specific purpose for them. In other words let them make their own points since they have been allowed to more ably do this now and in the past anyway.
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Yeah absolutely.
 
As you will see here:
https://www.s4me.info/threads/uk-ni...th-october-post-publication-discussion.22996/
A thread has been set up for discussion of the guideline once it is published. The thread will then be unlocked and members will be free to add their general comments on the new guideline to that thread, as well as links to media articles etc.

Threads for discussion of specific sections of the guideline are prepared and will be moved to the members only area once the guideline is published.
 
AknaMontes said:
I wouldnt consider seeing a neuro as from what Ive heard there are basically none that recognise ME as even existing. You could limit your consent to seeing someone who regards ME as physical not psychogenic, but you may not be able to find one.
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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.
 
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AknaMontes said:
I wouldnt consider seeing a neuro as from what Ive heard there are basically none that recognise ME as even existing. You could limit your consent to seeing someone who regards ME as physical not psychogenic, but you may not be able to find one.
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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).
 
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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!
 
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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.

:rofl:
 
Dx Revision Watch said:
I question the claims in some quarters that ME, CFS patients are "thick file" "frequent attenders". Most of the UK ME folk I know keep as far as possible away from their primary care practitioners.
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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.
 
Dx Revision Watch said:
;)

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?
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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.
 
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