S4ME is looking for another representative for the NICE ME/CFS Guidelines review process

[Andy]

Posted elsewhere but creating a new thread for maximum visibility.

Each stakeholder organisation is able to put forward two representatives again, currently S4ME only has Jo Edwards to represent us, so is there anybody who wants to go as our second rep? We would expect our rep to support the position that anything to be included in the guidelines should be supported with adequate evidence, which obviously attacks the foundations for CBT and GET but unfortunately doesn't allow us to support any treatments at the moment.

The next workshop will be held Friday 25 May 2018, 10:00 – 13:00 at Avonmouth House, 6 Avonmouth Street, London, SE1 6NX and ideally I want to inform NICE who are reps are by the end of this month. Existing thread on the workshop here, https://s4me.info/threads/nice-me-cfs-guideline-stakeholder-scoping-workshop-fri-25th-may-2018.3029/

Please also note that as you would be representing S4ME the committee will have final say on acceptance as our rep.

Those still interested either post here or PM me.

Thanks

 

[Esther12]

Bump, in case you haven;t found someone yet.

 

[Andy]

Bump, in case you haven;t found someone yet.

Thanks. Nobody has stepped forward yet.

 

[Alvin]

Thanks. Nobody has stepped forward yet.

Wrong side of planet or i would love to volunteer

 

[MEMarge]

Hi @Andy I am happy to volunteer to attend the scoping workshop if the committee think I would be suitable

 

[Andy]

Hi @Andy I am happy to volunteer to attend the scoping workshop if the committee think I would be suitable

Wonderful, thanks. I'll PM you.

 

[Sbag]

What about inviting William Weir or Malcolm Hooper if they do not already attend

 

[Trish]

What about inviting William Weir or Malcolm Hooper if they do not already attend

The point is to appoint people who are there to represent S4ME, ie are active members.

 

[Hoopoe]

@Lucibee is this something you're interested in?

 

[Sbag]

The point is to appoint people who are there to represent S4ME, ie are active members.

Yes sorry I meant ask them to join the forum as well. But I get that that would be a bit backwards!

 

[Graham]

I'd like to support ME Marge's offer to be a member. I know you aren't looking for votes or anything yet, but I know her well enough to value her contributions: as a carer she has the understanding, but also doesn't get brainfog: and she is a determined lady!

 

[arewenearlythereyet]

I think @MEMarge would be great too. No pressure though

I second the motion

 

[Binkie4]

Me too. MeMarge thirded.

 

[Graham]

I don't want to see MEMarge thirded. She's much too nice a person for that to happen.

So please explain: first, second, third, fourth, fifth versus whole, half, third, quarter, fifth: what idiotic counting system set up that confusion?

 

[arewenearlythereyet]

I don't want to see MEMarge thirded. She's much too nice a person for that to happen.

So please explain: first, second, third, fourth, fifth versus whole, half, third, quarter, fifth: what idiotic counting system set up that confusion?

duly edited

 

[Binkie4]

I don't want to see MEMarge thirded. She's much too nice a person for that to happen.

So please explain: first, second, third, fourth, fifth versus whole, half, third, quarter, fifth: what idiotic counting system set up that confusion?

Am sorry if I have caused confusion. I meant to support MeMarge as the second representative of S4ME. Terminology supposed to be slightly amusing. Obviously it missed its aim.
Just to be clear- I join with @Graham and@arewenearlythereyet in supporting MeMarge as S4ME representative.

 

[Graham]

No, no, @Binkie4 , your comment was perfectly understandable and amusing. This is just another tedious example of my weird sense of humour. I need to explain here that I was a maths teacher, and we are trained to be weird. Obviously, some people escape through the net and remain normal (don't they @Trish ?), but I'm a lost cause.

Some people say it takes a long time to get used to me. Others describe that as a process of losing touch with reality. My family would say - don't even try.

 

[Barry]

No, no, @Binkie4 , your comment was perfectly understandable and amusing. This is just another tedious example of my weird sense of humour. I need to explain here that I was a maths teacher, and we are trained to be weird. Obviously, some people escape through the net and remain normal (don't they @Trish ?), but I'm a lost cause.

Some people say it takes a long time to get used to me. Others describe that as a process of losing touch with reality. My family would say - don't even try.

I have a pet saying: You have to be a little bit mad to stay sane. I think a weird sense of humour fits perfectly with that, especially when attached to a lost cause . (That's a compliment by the way, in my world anyway).

 

[Trish]

Obviously, some people escape through the net and remain normal (don't they @Trish ?), but I'm a lost cause.

What, me? Normal? No thanks, far too boring.

 

[Binkie4]

Soooooo.....glad @Graham.
I liked maths at school and maths teachers. No doubt given more of a chance, I would learn to understand your humour. I quite like weirdness. Not that you have ever seemed weird to me.