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

Joel said:
One of the key factors will be how well informed the patient reps are at analyzing research and how practiced they are at conveying the problems with the research. Probably one of those things which gets easier with practice. Many of the professionals will be used to making such points, and obfuscating when other people raise such issues. I imagine several of them have been on committees developing guidelines for other diseases so they will have those advantages. I know we have some capable patients involved though, probably more so than in many other diseases.
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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
 
Sasha said:
Sorry, I'm not able to see it (possibly because I'm not on FB!). Did he give any more detail? I'm a bit confused because I thought that all the positions were filled now.
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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.
 
Andy said:
ME Research UK seem to consider this the final list of appointees, not sure what they know more than I as I still haven't had any communication from NICE regarding the committee (I am the point of contact with NICE in regard to S4ME being a stakeholder).

Code: 
https://www.facebook.com/MEResearchUK/posts/2154470671264845

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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.
 
Cinders66 said:
Dr shepherd is saying there are still important posts to fill on the NICE committee
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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.
 
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rvallee said:
Regardless of which direction the guidelines go, is it possible to push forward the need for patients to report harm done as a result of whatever treatment they end up recommending?

Even in the (likely, frankly) worst case scenario that politics overrule science and they mostly keep the current guidelines intact with symbolic changes, that would at least provide records of this harm. That will be important in the future. Right now they are still arguing that no harm recorded (because it is not possible) means no harm done.

If they are so confident that harm cannot occur (as they claim their research has done), they should not oppose. Which they will. Because they know.
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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.
 
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MSEsperanza said:
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.
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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.
 
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!
 
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.
 
Joel said:
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.
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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.
 
It would be a way to turn everything around if the last members announced are Charles Shepherd and Jonathan Edwards.

Not only would it be quite a coup de theatre by NICE, it would mean that there could be no objections to their membership from the BPS crowd, as NICE could turn round and point to the ones already appointed and talk about balance.
 
JohnTheJack said:
It would be a way to turn everything around if the last members announced are [...]

Not only would it be quite a coup de theatre by NICE, it would mean that there could be no objections to their membership from the BPS crowd, as NICE could turn round and point to the ones already appointed and talk about balance.
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So it would perhaps be better not to trumpet that/ blare that idea out?

(Just thinking...)
 
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