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

[Adrian]

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.

The email I got was just stating the embargo was lasting longer than first stated. So informal rather than a formal statement.

 

[Andy]

Well, it wasn't released at 5pm as suggested earlier.

 

[John Mac]

Well, it wasn't released at 5pm as suggested earlier.

I wonder if someone is waiting to publish 5 minutes before they leave the office for their 2 week holiday?
Let someone else deal with the angry phone calls from the BPS crew.

 

[Hoopoe]

Is technical problems a way to say Wessely problems?

 

[Fainbrog]

It’s up!

https://www.gov.uk/government/consu...es-of-people-with-mecfs-interim-delivery-plan

 

[chillier]

It’s up!

https://www.gov.uk/government/consu...es-of-people-with-mecfs-interim-delivery-plan

Thank god - untampered with I trust!

 

[Keela Too]

Phew! I was getting worried.

 

[InitialConditions]

Is there really no PDF?

EDIT: Ok, I can print to PDF, but strange to have no direct download link.

 

[Kitty]

63 pages though ...

 

[Shadrach Loom]

Is there any plan for S4ME to do a collective response, approved by members? That would not preclude us from responding individually as well.

 

[chillier]

63 pages though ...

It's the kind of thing that would be good to have an audio version of or maybe a digest so it's accessible to as many pwME as possible

 

[Fainbrog]

It's the kind of thing that would be good to have an audio version of or maybe a digest so it's accessible to as many pwME as possible

Looks like there is an audio version too

 

[Fainbrog]

Phew! I was getting worried.

We all have trust issues

 

[Shadrach Loom]

We all have trust issues

Acute and primary especially …

 

[Keela Too]

We all have trust issues

With good reason!
This is already later than anticipated.

I was getting some deja-vu, after how things went with NG206.

 

[chillier]

Looks like there is an audio version too

Ah fantastic! Here's the link for non twitter users: ow.ly/fvmj50PvPPT

 

[InitialConditions]

Is there any plan for S4ME to do a collective response, approved by members? That would not preclude us from responding individually as well.

Yes, was wondering this. There are two potential issues/considerations: (i) is it better to have 50 responses saying roughly the same things compared with just one, and (ii) the response form looks like it might assume responses are from individuals.

 

[Tao Fogger]

Yes, was wondering this. There are two potential issues/considerations: (i) is it better to have 50 responses saying roughly the same things compared with just one, and (ii) the response form looks like it assumes responses are from individuals.

In response to point (ii), the first question is "In what capacity are you responding to this survey?"
with the following options as responses
An individual sharing my personal views and experiences including carers and family members
An individual sharing my professional views
On behalf of an organisation
On behalf of someone else
"

 

[Shadrach Loom]

Yes, was wondering this. There are two potential issues/considerations: (i) is it better to have 50 responses saying roughly the same things compared with just one, and (ii) the response form looks like it assumes responses are from individuals.

You can make it explicit that a response is organisational, or are we looking at different things?

E2A: xposted with @Tao Fogger

 

[InitialConditions]

You can make it explicit that a response is organisational, or are we looking at different things?

E2A: xposted with @Tao Fogger

ah ok, that's good.