UK Government ME/CFS Delivery Plan (includes Attitudes and Education Working Group and Living with ME Working Group) and consultation

[Dolphin]

Times Radio covered the UK Government ME/CFS Delivery Plan and interviewed @TimesONeill

Listen back:
https://www.thetimes.co.uk/radio/show/20230809-16806/2023-08-09
Starts 1:38:40

#PwME #mecfs

 

[Andy]

For those who can't see Twitter posts, Tom Kindlon says "Just learned that publication has been delayed. Now expected sometime between 4 and 5 pm today. (from a list I’m on)"

Interesting that an Irish ME/CFS advocate learns that an English governmental consultation on ME/CFS is delayed before English ME/CFS patients do. And is anybody else getting 'delayed NICE guideline' vibes from this?

 

[Tom Kindlon]

For those who can't see Twitter posts, Tom Kindlon says "Just learned that publication has been delayed. Now expected sometime between 4 and 5 pm today. (from a list I’m on)"

Interesting that an Irish ME/CFS advocate learns that an English governmental consultation on ME/CFS is delayed before English ME/CFS patients do. And is anybody else getting 'delayed NICE guideline' vibes from this?

I wasn’t told directly. A UK advocate posted it to a group for group leaders.

 

[Andy]

I wasn’t told directly. A UK advocate posted it to a group for group leaders.

Not blaming you for knowing, just dislike the poor communication by others around something so important.

 

[Andy]

"A/Prof Siobhan O'Dwyer" on Twitter (at 10:37AM today),

"So @eleanorhayward @thetimes are reporting that the Interim Delivery Plan for ME/CFS is now open for consultation. But there's nothing on the @DHSCgovuk website. And the plan hasn't been sent to members of the working groups who helped develop it. Seriously, @Helen_Whately ?!?"

"Working group members - myself included - contributed considerable time & expertise, because we thought this government was committed to real change on #MECFS. Delays in releasing the plan and a lack of communication from @DHSCgovuk @Helen_Whately make a mockery of our efforts."

 

[Fainbrog]

And is anybody else getting 'delayed NICE guideline' vibes from this?

That was exactly what first came to my mind when I read that there was a delay.. I hope our spidey senses are off on this!

 

[Tom Kindlon]

I remember seeing a copy of the supposed final Gibson Parliamentary inquiry report. However the final version that came out the next day had unfortunately been watered down.

 

[Binkie4]

Are the Comments open on the Times article? And does anyone have a Times Share Token link to the article please?

There are a number of comments under the Times article, mixed but overall perhaps more acknowledging of ME as an illness. Not sure whether they are still open (4.20pm).
Do not have Times share token.

 

[Adrian]

For those who can't see Twitter posts, Tom Kindlon says "Just learned that publication has been delayed. Now expected sometime between 4 and 5 pm today. (from a list I’m on)"

Interesting that an Irish ME/CFS advocate learns that an English governmental consultation on ME/CFS is delayed before English ME/CFS patients do. And is anybody else getting 'delayed NICE guideline' vibes from this?

I think its technical issues that is what they said in the email I have seen. As a government policy document it will have been signed off by ministers already and not easily changeable.

 

[Shadrach Loom]

I think its technical issues that is what they said in the email I have seen. As a government policy document it will have been signed off by ministers already and not easily changeable.

Fingers crossed. But in the event of NICE-style last minute shenanigans, it would not be unknown for “technical issues” to be the short-term line to take.

 

[Andy]

I think its technical issues that is what they said in the email I have seen. As a government policy document it will have been signed off by ministers already and not easily changeable.

I appreciate that you are just passing the message on, so thank you for that. But "technical issues"? Such as what; the intern that they told to update the website called in sick?

Lol, crossposted with Adrian's post below.

 

[Adrian]

Fingers crossed. But in the event of NICE-style last minute shenanigans, it would not be unknown for “technical issues” to be the short-term line to take.

I do suspect they are having problems getting it and the survey consultation forms (for collecting responses) up onto their website.

 

[JellyBabyKid]

I do suspect they are having problems getting it and the survey (for collecting responses) up onto their website.

Seriously?! Surely this is something they do fairly regularly?

Concerning that working group members are tweeting very publicly about not having had a copy either.

All a bit fishy after what happened - and is still happening - with NICE

 

[Shadrach Loom]

Gov.uk is pretty slick as a CMS. Uploading is trivially easy. It’s the one thing that Government Digital Service could actually do right, given that Mike Bracken was poached from the Graun to set it up.

 

[Adrian]

I appreciate that you are just passing the message on, so thank you for that. But "technical issues"? Such as what; the intern that they told to update the website called in sick?

I very much doubt if they would let an intern anywhere near a live website. But I do suspect they need someone in the IT dept to put it up and

 

[Adrian]

Seriously?! Surely this is something they do fairly regularly?

Concerning that working group members are tweeting very publicly about not having had a copy either.

All a bit fishy after what happened - and is still happening - with NICE

I have an embargoed copy as someone who has been involved.

 

[Adrian]

Coverage on Times Radio this morning - including an interview with Sean O'Neill
Segment starts at 1.38
https://www.thetimes.co.uk/radio/show/20230809-16806/2023-08-09

 

[JellyBabyKid]

I have an embargoed copy as someone who has been involved.

Thank you.

Twitter is - understandably - getting a bit concerned about what all this means for the process. Especially that cannot access the consultation and the lack of publicity.

 

[Fainbrog]

I appreciate that you are just passing the message on, so thank you for that. But "technical issues"? Such as what; the intern that they told to update the website called in sick?

Lol, crossposted with Adrian's post below.

‘Technical issues’; code for we’ve been nobbled, again

 

[Shadrach Loom]

‘Technical issues’; code for we’ve been nobbled, again

When there are real technical issues, IT get to write the line to take, and they will say “issues with a web hosting provider” or similar deflection.