United Kingdom: Action for ME (AfME) news

I'll need to start buying lottery tickets ...

 

I don't know if this has been posted elsewhere - and I haven't yet looked into it
Research seems to be aimed at addressing bias applied to fluctuating illnesses

https://www.actionforme.org.uk/news/activity-trap-research-get-involved!/

ETA the questionnaire timescale has closed but it may be worth keeping an eye on any outcomes made public

 

This pack is designed to help other people understand how my health is affected, and the best ways to support me.

This resource was published in May 2018 and updated in February 2022. It is subject to revision and review by Action for M.E. and North Bristol NHS Trust (Bristol M.E. Service).
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"this resource aims to support people with M.E. to help carers +/or other professionals understand how M.E. impacts them, & the reasonable adjustments they need"

https://view.officeapps.live.com/op.../This-is-ME-Feb-2022.docx&wdOrigin=BROWSELINK

 

https://www.actionforme.org.uk/get-information/care-and-support/social-care-support/

 

I just followed @Nightsong's link to the 'This is M.E.' page but found it completely blank: https://www.actionforme.org.uk/get-information/care-and-support/social-care-support/

 

It should download an Office document ("This-is-ME-Feb-2022.docx"). Direct link is:

https://www.actionforme.org.uk/uploads/pdfs/This-is-ME-Feb-2022.docx

 

Thanks - apparently that was the third time I downloaded it! I saw no sign of a document on the page itself. Maybe that was my adblocker in action.

It's a very bad document. To be of any use it needs to be a tenth of its current length and without all the made-up stuff.

 

Yes, I think that's an excellent idea.

 

I found it plugged in I believe their magazine.

It is here:
https://www.actionforme.org.uk/get-support-now/info-and-support-resources/living-with-me/?page=2

This is M.E.
Developed by North Bristol NHS Trust M.E. service and Action for M.E., this resource aims to support people with M.E. to help carers and/or other professionals understand how M.E. impacts them, and the reasonable adjustments they need. First published in 2018, it was updated in 2022 and has been reviewed and approved by members of West of England Sight Loss Council. This means it can be accessed and used by people with a visual impairment who rely on screen readers. Sharing your feedback about this resource, via our brief anonymous feedback form, will help us make it even better - thank you.

 

I feel like Sonya promised a review of all docs in light of the last letter?

 

https://www.actionforme.org.uk/news/me-and-long-covid-workshop/