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

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

 

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.

 

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

 

"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."

 

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!

 

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.

 

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.

 

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 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.

 

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

 

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.

 

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.

 

‘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.