NICE guideline review: A list of appointees to the ME/CFS Guideline Committee has now been published

Thanks! That's good that there are some professional roles left.

 

IIRC we've got at least one such patient here and I wonder if it would be a good idea for patients to link up and educate each other on the issues if they're not already familiar with them and maybe do a bit of role play. If I was going to be on a committee like that I'd be getting my friends to pretend to be hostile obfuscators and would be getting some coaching in dealing with it!

@Keela Too

 

I can't see anything current on the MEA Facebook page. The last comments from Charles on this subject, that I can find, are from about a week ago.

 

I can see as part of the discussion on this Facebook post that ME Research are considering this the full list as there are no further positions noted as still to be filled, so still no confirmation one way or the other from NICE.

 

Would it not be an appropriate sign of taking patients serioulsy if NICE did let the stakeholders ( I don't know the proper words ATM - I mean all parties involved in commenting on the guideline's sope draft document) know which posts are still to be filled in?

Could S4ME not politely ask them?

I mean with providing only parts of the information, they are causing a lot of worries among PwME.

 

This is something I very much hope gets pushed for. It's a complete joke at the moment, they say it is safe but there is no process in place to look for any harm on the assumption that harm is impossible. Vast portions of patients are lost to follow up and it is just assumed they are fine. No one is making them capture any harm data. And the claim that has been around for years that harm in GET only happens when practitioners don't follow the "correct way of doing it" - to the unaware this sounds believable, it makes these worrying anecdotal reports vanish as a problem, but there is not a shred of evidence to back the claim up, it is a total fabrication.

I doubt there is a single clinic in the UK that can prove they are safe with actual evidence. No biological therapy or surgery would get away with it. These clinics shouldn't be allowed to.

 

https://www.facebook.com/meassociation/

I have found some comments by Dr Shepherd. I do find the order in which posts come up is erratic so I hope the relevant one isn’t omitted.
It’s during the course of a long discussion started about ME care in Wales. Dr S talks about informed consent and conversation turned to the Nice guidelines. He believes there are more posts to be filled, he said, I think about 4 hours ago.

ETA: “ the membership list that is circulating on the Internet today still has some important gaps to fill” ( CS 3 hr)

ETA2: he also says “ I don’t want to comment on my own application at this stage ( CS 4 hr)

ETA3: it’s the second post about Wales ( 3 people in photo), with 65 comments attached.

 

I sent them an email earlier on asking for an update regarding the committee membership, I assume I wont see a reply until next week now.

 

The picture and headline above don't come from FB they come from the BBC website :

https://www.bbc.co.uk/news/uk-wales-45954552

 

But the picture is a clue to which post on mea the comments on. I can’t link directly if I press share I get what I put.

 

I think there must be stuff on that FB thread about Welsh stuff that I can't see. I've been through every single comment. Ah well!

 

Found this comment buried amongst the other comments on this Facebook post, which was posted today.

Code:

https://www.facebook.com/meassociation/posts/1955480031176312

 

That comment of CS could mean that he applied to join a professional part of the committee and the result of the application is still pending, or it could mean that following rejection there is some continuing constraint. Do we know whether there is a further tier as yet not announced. That would possibly explain reticence elsewhere.

 

Can't remember where I saw it (likely here) but there was mention that someone asked the NHS (official, using the whatdotheyknow website I think) how they handle reporting of harm and the reply was it's up to the local clinics, then asked local clinics and they said they don't do any follow-up at all. None.

This is quite deliberate. They know records of harm would accumulate over time and so they just make it impossible. They'll try to argue once we move past denial that they are shocked and had no idea. But of course there are at this point decades of letters, petitions and other forms of communications, including directly to people like Sharpe on Twitter, saying so.

Right now they can get away with anything but it's critical that as much as possible is being documented publicly. This is a bit like the #DoctorsAreDickheads kerfuffle while there have been literally MILLIONS of individual accounts of iatrogenic harm in the form of blog posts, vlogs, articles in alternative media, petitions, protests and the like. And of course the #MedTraumaChat hashtag was absolutely ignored by medical professionals until someone insulted them and they took it personally.

This is not only about what it accomplishes now but about what it does in the future when we will specifically ask, once we get that damned biomedical breakthrough, to fast-track all the things because you have this huge paper trail of treating us like dirt knowingly and denying research funding so you better freaking make up for all of it. Not that it's going to work out as it should, but it will be huge leverage.

 

Sorry to be off-topic but I keep seeing ETA and I only know it as meaning estimated time of arrival and that can't be right the way it's used and it's annoying me. What does it mean?

 

So it would perhaps be better not to trumpet that/ blare that idea out?

(Just thinking...)

 

"Edited to add" (I think)

ETA: nothing to do with travel or political violence....

 

Sorry @rvallee

It is ‘edited to add.’ It would be more efficient to post a photo but that’s beyond me currently.