UK: British Psychological Society survey on their planned new guidance on ME/CFS, deadline 9th October 2024

[quote of a now deleted post, asking if the project could be a ploy to sideline the NICE guidelines]
no i dont think so. Anything with @Joan Crawford involved would not be that... well not if she had any kind of control over the outcome at any rate!
I think @bobbler is right here

 

yes, i soon learned we are no longer allowed to wear lipstick if we want to be taken seriously as ill. Aparently ill people dont wear lipstick. The fact that my mother still put her lippy on while dying of cancer in hospital... thats allowed, thats having pride apparently but for us its saying we're ill but we're obviously not!

oh... preach it sister! amen!

 

I’ve just completed the shorter form for people who may be interested in providing feedback via focus groups or forums and that has an edit your responses button at the end so it looks like you can?

It looks like the URLs to edit are unique and include the token to access your data, so unfortunately I cannot share a link to help others edit their responses. It may be less easy to edit than I first thought, unless you’ve still got the window open or saved your personal edit URL which is shown after completing the form.

 

I wrote mine on a word processor document first, because it always takes me a while and I'm prone to closing browser windows by accident and losing stuff!

From memory, the three boxes where you give most of the freeform feedback are on one page, so it's easy to see the questions. They are:

1. What do you think should be included in the good practice guidelines on ME/CFS?

2. What do you want psychologists to understand about ME/CFS?

3. How should psychologists work with people who have ME/CFS?

There are other questions, but they're more specific and some are just tick boxes.

 

Thats super helpful thanks @Kitty I also like to do it in word first. The boxes are always so small & i like to be able to see what i just said in last few sentences because i often forget!

 

Thank you for this @Joan Crawford. It took me a lot longer than 20 mins - it could have been as much as three hours in all, but it'll be shorter if you've never seen a psychologist or other therapist. I was at the end of a Covid infection, so even slower than usual. Anything to make change happen is very welcome, but a mammoth task.

 

Many thanks for completing it. Much appreciated

 

Many thanks

 

Many thanks for completing it

 

Thanks for completing the survey

 

Apparently the BPS is now looking to produce Long COVID guidance as well:

https://www.bps.org.uk/news/call-me...oin-working-group-produce-long-covid-guidance

 

Thanks @bobbler – I’ve been meaning to say that for an age but went down for a bit and only resurfacing now!

 

Our group developing the ME/CFS guidance have submitted an interest in this as there will be cross over both ways

 

We held our first Working Group meeting yesterday to cover background, process and setting up the smaller writing groups. We are go.

We have large group (18 psychologists involved in writing along with 2 EbE from AfME and MEA). We have other psychologists involved later in wider consultation group for reviewing drafts etc.

Many psychologists involved have lived experience and/or carer/family members with ME.

The survey has received more that 875 responses which is fantastic.

 

Thanks for the update @Joan Crawford

 

Update on this project via MEA:

https://meassociation.org.uk/wp-content/uploads/2024/11/BPS-MECFS-Guidelines-Update-11.11.24.pdf