#MEAction UK: "Take ME Seriously" project needs comments & signatures to send to NICE

#MEAction UK has a new project called "Take ME Seriously"

Update: Anyone can join in this advocacy action. It is not just for UK residents.

They are collecting comments and signatures regarding the NICE (National Institute for Health and Care Excellence) ME/CFS treatment guidelines in the UK. In particular, there are serious concerns over potentially harmful recommendations of GET and CBT that are still in the guidelines.

Comments and signatures will be collected until February 14 (Valentine's Day).

The input will be printed on a large card to be sent to NICE.

For full details go to https://www.meaction.net/2020/02/05...eriously/?mc_cid=9472762749&mc_eid=c1fdea04b1

To skip all the details and go straight to signing the card, go here:

https://airtable.com/shrbETJu33bpVAwaL

 

Worthwhile

 

Tbh i’m not sure about This, wasn’t there some other similar NICE activism last year ? As far as I can see the “process” with the people long ago selected to do it, is underway. I can’t see patient activism like this altering it. And afaic there’s plenty of other need for areas of patient activism like lack of services especially in areas in Wales and still vastly inadequate research funding and no proactivism to improve research interest that need work.

I also saw that there was to be another APPG this month, which I’ve not seen any further promo of, surprisingly given the last one was so rushed people didn’t have time to give MPs notice or write proper letters. Shouldn’t we be focused on what we want the APPG to do as priorities etc and getting involved in that as patients.

 

Yeah, I'm afraid I don't see much point in this either. NICE have already said they won't change anything before the new guidelines are confirmed, so why flog a dead horse like this? Helping pwME to communicate regularly with their MPs about ME, where they can talk about the potential harms from GET and CBT and push them towards the APPG, would be a much more valuable use of precious energy and time, in my opinion.

 

posted here
https://www.s4me.info/threads/nice-...onsultation-closing-august.12690/#post-235161

 

Here's a tweet from MEAction UK announcing this action (probably also posted on Facebook but I don't use that):

https://twitter.com/user/status/1225423154790719491

Code:

https://twitter.com/MEActNetUK/status/1225423154790719491

(FYI, I don't know anything about this action, I just posted the info. Sorry for the duplicate post, @Sly Saint )

 

Update: Anyone can join in this advocacy action. It is not just for UK residents.

I asked ME Action UK via twitter and got this response
https://twitter.com/user/status/1227297090394558464

Code:

https://twitter.com/MEActNetUK/status/1227297090394558464

 

I have signed the card. I think it’s always worth speaking up, even if it seems pointless.

Saying that, I have given up with my MP as they consistently vote with hostility toward disabled people. It’s too much effort and upsetting to interact with someone like that.

A comment to NICE was not too much effort.

 

The mantra is always "no evidence of harm" so it's always a good idea to report harm during official proceedings, as there are no other means to do so.

I'm not sure how far they are willing to go. Their own commissioned survey was loud and clear that those guidelines are unfit for purpose and harmful, yet they refuse to even issue a minimal alert about the impact of the guidelines. It's well-documented, yet again, and in a very public process.

Short term we know we are facing the weird MUS/BPS/FND juggernaut that seeks to regress all of medicine, but it will still matter in the long term.

 

That’s fair enough, and I see they have nearly 2000 signatures so there’s obviously support. I personally think meaction Uk have made nice their main target in the way meaction USA the nih, I just think one area isn’t currently tractable and one is, and it’s given the nice guidelines is in process & we can’t really alter until the draft is out and there’s plenty of other issues , that I think that it’s the wrong focus.

regarding the harm, it’s still pretty shocking the lack of accountability for it, because whether it’s harm caused by well meaning people who inappropriately administer GET, or inappropriately don’t diagnose and advise or whatever,the numbers of people who say I wasn’t “that” badly ill to start with but my dr didn t advise me on management or my physio advised me this on exercise and now I can’t leave the house etc - I thought that inflicting or allowing major disability to occur in a prime age population would be in any other situation considered pretty serious. I suppose it is the problem that lasting irreversible harm isn’t really accepted.

 

1973 signatures many with messages received.

Last chance to add yours tomorrow - 14 Feb

 

Done. Thanks for the reminder.

 

Last day for signing, adding a message for NICE.

 

Published 30 April 2020:

https://twitter.com/user/status/1255882103641853952


https://www.meaction.net/2020/04/30/thousands-add-messages-to-6-m-long-card/

 

This is a great format. Love it. Any random sampling of the comments makes it overwhelmingly clear that the ME-BPS model is a complete disaster and that neither CBT-GET nor any other psych-based "treatment" serve any medical value whatsoever.

I don't know if there's a way to make it an official document? So that it is preserved? I doubt the BPSer will read any of it but they really should, this will be their legacy: suffering and death, created willfully out of stubborn ideological delusions, a human rights disaster of choice, their choice alone, coerced onto sick vulnerable people who clearly dissent. It will be their legacy no matter what they believe and no matter their intent, they will be judged on the outcomes and those are objectively catastrophic.