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

Isn’t the issue with the committee I heard that they want to draw from the nhs which is why for weir wasn’t allowed ? but the nhs is founded on the behavioral approach to CFS so therefore most they select will have connections to the system we want objectively reviewed. If they can’t put fifty fifty in with the biomedical approach to ME lot equalling the pro GET, which they can’t because there’s so few, then maybe it would be better to have some out of field who could be impartial but then there’s no experience or knowledge to draw on. I don’t know even if fifty fifty Would work as it would inevitably be a compromise rather than over haul, A broad tent nice panel won’t be revolutionary.

I suppose they might argue someone like Gabrielle Murphy is interested in biomedical research as she’s on CMRC etc and is an immunologist. But she is known pro pace so it’s foregone. It seems we are stuck in treacle.

 

Not sure this is accurate, that AHRQ has dropped Oxford, Fukuda and London criteria. Reading another blog by Jennie Spotila, I'm not sure AHRQ has actually officially dropped any criteria. Certainly there was a reanalysis removing studies based on the Oxford criteria

http://occupyme.net/2016/08/16/ahrq-evidence-review-changes-its-conclusions/
but I can see no mention of the Fukuda and London criteria. Do you have a reference for the claim that they have been dropped?

 

Sorry, they dropped Oxford. I added the other criteria to the sentence without adjusting. I don't know how they consider London and Fukuda but deprecating Oxford specifically dropped the poorest studies.

 

I haven’t followed this thread. But I just thought I would point out that a lot of the focus of the judicial review of the last NICE guidelines was on the make-up of the committee. I wonder whether anything can be used or learnt from that.

 

Is there a discussion thread for what the focus of our arguments should be on the committee? Our patient representatives don't have to follow them but I'm sure we can augment their work on the committee and provide priorities or a working guide.

I don't know exactly what that entails. For sure there is the matter of our "demands", quoted because it's not like we can actually demand anything but they are nonetheless things that we consider essential for the success of this review.

I was thinking of (in no particular order):

• Deprecating the Oxford criteria and any studies using them as unreliable evidence
• Pushing for ICC criteria to be adopted (this discussion is loaded but whatever criteria are selected they need to actually somewhat describe this disease)
• ME is not chronic fatigue and reducing a disease characterized by a large number of symptoms to a secondary symptom is misleading at best
• The symptom presentation is wildly fluctuating and as such any outcome measurement needs to account for long-term data, the same way as measuring pulse once would not be acceptable in a trial for a drug that aims to reduce pulse
• Evidence needs to be objective (no more self-reported outcomes, they are never reliable)

Obviously this basically destroys the entire psychosocial body of research but it is all basic scientific rigor.

A particular problem has been allowing the much looser standards of psychological research to be applied as if it met medical research standards, which would never allow unblinded trials with self-reported outcomes to be considered in the first place.

This is of course where the whole farce is played out, that they may pretend they accept it's a disease but actually believe it to be entirely psychological. They need to be challenged on this.

 

Do all representatives have to be British? If you were looking for those with relevant knowledge and experience then choice is very limited in UK.
It must be very weird to be outside UK looking in. Do NICE not realise what an act of self harm this constitutes?

 

Being in the NHS shouldnt be a prerequisite for being on the committee - they don't have any special training that makes them more knowledgeable than people not in the NHS. What about allowing researchers in - would they be excluded as well then as they work for universities?

 

Mixing up my fictional characters, I am loving the idea that @Keela Too (and @adambeyoncelowe ?) are lurking in the shadows, like the Scarlet Pimpernel in Harry Potter’s invisibility cloak, perhaps with Superman “S”’s on their chests (too much?)

 

Unable to link, but within the MEA post on 26.10.2018, covering the BBC Wales story, Dr Charles Shepherd said (amongst other things) in this order.


“In relation to the NICE guideline, I have been having discussions with various people regarding the way in which the committee is being put together. As previously noted, I am not able to comment further on the committee because I applied to join the professional part of the committee. “


“The last list I saw was not complete. If a new list has appeared today I have not seen it. I don't want to comment on my own application at this stage. CS”


“The membership list that is circulating on the internet today still has some important gaps to fill. CS”

 

"The Merry Go Round

I got sent to neurology and he sent me back to orthopaedics and orthopaedics were the ones that referred me to neurology in the first place because they said it wasn’t an orthopaedic problem. And then I went for a second opinion and she didn’t get my files so she couldn’t help me. And then even the mental health therapies, all these treatments, everything, they can’t give you a treatment without knowing what they're treating you for. So I went through 15 years of that: ‘just keep taking the painkillers, I’m sorry, there’s nothing that we can do’. (Female, with CFS/ME and hypermobility syndrome)...."

 

Fred Nye. He actually diagnosed me, and *was* one of the good guys, and then he went over to The Dark Side and was joint author of some BPS carp.

 

https://twitter.com/user/status/1056569945541218307

 

https://twitter.com/user/status/1056575403333160960

 

The forum needs a Facebook “like” button where it can be like, love, laugh ,cry or hate

 

What a dog pile.

 

I feel we must take some action on this now, or at least when the final panel is released. This has made me really pissed off.

My view is that a co-signed letter would be the best action, led by someone with authority. I don't know if anyone has plans for this....

I have just seen the letter sent in January about the selection process https://www.s4me.info/threads/grahams-finalised-letter-to-nice-january-2018.1885/ . Something along these lines, but of course updated.

 

from twitter.
https://twitter.com/user/status/1056587630597562368

 

Oh my word...
"rampant ME Association!!!"" MEA might need to respond to this or Forward ME?
that and the transcript of the 1999 Panorama with Matthew Hill. "Sick and Tired".......
http://news.bbc.co.uk/hi/english/st.../panorama/transcripts/transcript_08_11_99.txt
"Wonder what else is going to be disappearing from the internet?"- NOT this one!
I must dig the video/dvd out too....