United Kingdom: News from #MEAction Network UK

[InitialConditions]

I assume #MEAction Scotland will be folded into the new charity?

 

[Trish]

Their details are listed on the Charity Commission website:
https://register-of-charities.chari...rityDetailsPortlet_organisationNumber=5213556

Some quotes

Overview

Activities - how the charity spends its money
Our work centres around empowering/enabling people with ME and other complex, chronic illnesses (including post infectious illnesses). At present, the focus is on supporting people with ME but we may also focus on other complex, chronic illnesses in future. We carry out activities that improve the understanding of ME and help to relieve sickness through better treatment and public understanding.

Income and expenditure
Data for financial year ending 31 October 2024
Total income: £0
Total expenditure: £150

3 trustees:
Denise Spreag Chair
Malcolm Bailey
Janet Sylvester

 

[Sly Saint]

Homepage - MEAction UK

meaction.org.uk

 

[Dolphin]

From Facebook:

In mid December last year, #MEActionUK emailed NHS England regarding the web page on ME/CFS on the NHS UK website (see link below). Although the page was recently updated - on 28th May 2024 - it currently contains misleading information which does not align with the NICE guideline NG206 on ME/CFS.
This webpage is an important source of information for people looking for information on ME/CFS, particularly journalists and others in the media who continue to quote the incorrect information it contains, for example 'The most common symptom is extreme tiredness'. #MEActionUK asked NHS England to edit it in order that it reflects the latest guideline, while noting that some aspects of the NICE guideline for ME/CFS (2021) HAVE been incorporated into the web page.
Just before Christmas, NHS England replied saying that our request would be added to their backlog for a member of the website team to pick up when there is capacity. They will notify us when this has happened. #MEActionUK will keep in contact with NHS England and keep you updated on any progress.

Myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS)

Read about myalgic encephalomyelitis (chronic fatigue syndrome or ME/CFS). It’s a long-term condition with a wide range of symptoms including extreme tiredness.

bit.ly

#MyalgicEncephalomyelitis #MyalgicE #HealthEquality

 

[bobbler]

From Facebook:

In mid December last year, #MEActionUK emailed NHS England regarding the web page on ME/CFS on the NHS UK website (see link below). Although the page was recently updated - on 28th May 2024 - it currently contains misleading information which does not align with the NICE guideline NG206 on ME/CFS.
This webpage is an important source of information for people looking for information on ME/CFS, particularly journalists and others in the media who continue to quote the incorrect information it contains, for example 'The most common symptom is extreme tiredness'. #MEActionUK asked NHS England to edit it in order that it reflects the latest guideline, while noting that some aspects of the NICE guideline for ME/CFS (2021) HAVE been incorporated into the web page.
Just before Christmas, NHS England replied saying that our request would be added to their backlog for a member of the website team to pick up when there is capacity. They will notify us when this has happened. #MEActionUK will keep in contact with NHS England and keep you updated on any progress.

Myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS)

Read about myalgic encephalomyelitis (chronic fatigue syndrome or ME/CFS). It’s a long-term condition with a wide range of symptoms including extreme tiredness.

bit.ly

#MyalgicEncephalomyelitis #MyalgicE #HealthEquality

do you know whether it was mid- Dec 2025 they mean (or Dec 2024) ?

- slightly thrown by the last year in relation to 'recently updated in May 2024', and the NHS England replying just before Christmas which could mean they replied in a week or two.