NICE ME/CFS draft guideline - publication dates and delays 2020

Andy said:
Well it's not that I'm hoping for new and/or revised services, it's the principle that the money has been found to invest in long-Covid, so why can't it be found for ME. Obviously the devil is in the detail, but I'd like to see £10m invested into caring appropriately for pwME, and research of a 10k cohort.
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We had our 8.5 million....

https://webarchive.nationalarchives...ourorganisation/Financeandplanning/DH_4049222

On the 12th May 2003 Jacqui Smith, Health Minister, announced a central revenue budget of £8.5 million to develop services specially designed for people with CFS/ME. The investment is intended to pump prime the development of clinical services where none currently exist.

The first phase of development will commence in 2004 with a further phase in 2005 with the intention that funding will be built into PCT general allocations in 2006. It is expected that over time local health communities will supplement the central budget from their own allocations.
 
From David Tuller's blog article:
Now Daniels appears to have engaged in public advocacy on an issue before the NICE guidance committee. According to the tweet, “we know” CBT works as a treatment for ME/CFS—that is, despite international repudiation of the PACE trial and its associated treatment paradigm. The tweet has since been deleted.
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Code: 
https://twitter.com/Huisarts_Vink/status/1314230234905022466
 
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I honestly don’t blame Jo Daniels for making her account private. My Twitter account is currently private too. The tweet has been seen, but it has also been taken down. I think it was removed fairly quickly. Twitter can be unforgiving, and is maybe too fast for considered writing.
 
It amazes me that health professionals have time to spend on Twitter. And they really should have more sense than to express controversial opinions on treatments if they want a quiet life there. It's a bear pit, as I've just reminded myself with a small interaction. She/he/they who shouts loudest/longest holds sway. It's a nasty place, and not a place for civilised discussion or learning about health issues.

It surprises me how many sick people use Twitter for support. They are inevitably going to be plagued with quackery and nastiness.
 
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Trish said:
She/he who shouts loudest/longest holds sway.
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I would say they appear to hold sway. Lots of people read who don't tweet. Shouting loudest & being an a**e may appear to win them the twitter argument but to people who know them in real life? Real risk of alienating people important to them & never realizing.

Amazing how many people who tweet don't seem to consider that.
 
Keela Too said:
I honestly don’t blame Jo Daniels for making her account private. My Twitter account is currently private too. The tweet has been seen, but it has also been taken down. I think it was removed fairly quickly. Twitter can be unforgiving, and is maybe too fast for considered writing.
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I agree. Everyone has had the experience on twitter of tweeting something they didn't think about carefully enough. Unfortunately for Daniels, the tweet was seen and screen-captured by many before she thought to remove it. Same thing happened to politician Anthony Wiener in NYC.
 
As someone who does not understand these newfangled things -what is the point of a private twitter account? It sounds a bit like an opera singer being confined to their dressing room.

I have no motivation to tweet but I do find it revealing. Anyone who tweets 'honoured to be part of this great drivel act with the amazing Rebecca so-and-so' can be guaranteed to get a bad review from me for a grant application. People seem to forget how not to look really naff on Twitter.
 
I think a private twitter account is probably feasible if you've been on twitter for a while and worked out who you want to go on interacting with - you get to choose who sees your tweets, which might be a group of friends or fellow sufferers of an illness or colleagues.
 
Jonathan Edwards said:
As someone who does not understand these newfangled things -what is the point of a private twitter account? It sounds a bit like an opera singer being confined to their dressing room.

I have no motivation to tweet but I do find it revealing. Anyone who tweets 'honoured to be part of this great drivel act with the amazing Rebecca so-and-so' can be guaranteed to get a bad review from me for a grant application. People seem to forget how not to look really naff on Twitter.
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If you set your Twitter account to Private, then your existing "Followers" can still read and reply to your Tweets. Some people have thousands of Followers, for example, Trish Greenhalgh has 96.8 thousand Followers.

If set to Private, if someone who is not already a Follower wants to Follow you, they have to ask to be approved, first.

Sometimes people set their accounts to Private for a few days if things have got a little heavy, or they just need some time out, then when its calmed down they make their account public again.

There is a new feature on Twitter whereby you can restrict who can reply to your messages. You can select so that anyone can reply; only people you follow can reply or only people you mention (ie people you have tagged into the message) can reply.
 
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From @dave30th's blog:

upload_2020-10-9_14-54-47.png

Extrapolating anything always requires great caution, given you are making assumptions outside the bounds of the data you are extrapolating from; it's a fact of life that extrapolated data is more prone to error than interpolated. You need to be really confident in the integrity of that data, and in the validity of extrapolating from it in the way you wish to. So to "extrapolate" from data that is bias-laden and flawed to start with, whilst blithely confident it is sound, is just riddled with doubt.
 
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Barry said:
From @dave30th's blog:

View attachment 12186

Extrapolating anything always requires great caution, given you are making assumptions outside the bounds of the data you are extrapolating from; it's a fact of life that extrapolated data is more prone to error than interpolated. You need to be really confident in the integrity of that data, and in the validity of extrapolating from it in the way you wish to. So to "extrapolate" from data that is bias-laden and flawed to start with, whilst blithely confident it is sound, is just riddled with doubt.
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I think this highlights that PWME were concerned about the make up of the NICE review group for very rational reasons (the ability of certain members to scientifically and independently evaluate evidence), not simply a bias against psychological treatments!
 
dave30th said:
I agree. Everyone has had the experience on twitter of tweeting something they didn't think about carefully enough. Unfortunately for Daniels, the tweet was seen and screen-captured by many before she thought to remove it. Same thing happened to politician Anthony Wiener in NYC.
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Rather worryingly of course, now the account is private then similar things could be posted, to a large number of people. I suppose it just highlights that if people are prepared to violate their confidentiality agreement with the NICE guideline committee, then all bets are off behind closed doors.
 
Barry said:
Rather worryingly of course, now the account is private then similar things could be posted, to a large number of people. I suppose it just highlights that if people are prepared to violate their confidentiality agreement with the NICE guideline committee, then all bets are off behind closed doors.
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She has 603 Followers. In Twitter terms, not a large number,
 
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