United Kingdom: ME Association news

Looks quite interesting

 

The temptation to list “intolerance- Other: Neil Riley” was very strong, but I resisted!

 

About time someone did.

 

New MEA feedback service allows people to share their NHS experience.
https://meassociation.org.uk/health...-allows-people-to-share-their-nhs-experience/
Now is your chance to make a difference by sharing your experiences with NHS ME/CFS/LC specialist services.

 

Neil Riley has resigned
https://meassociation.org.uk/2025/0...BdwZNfMmcqk3IIgD4w_aem_Nhl9bYkeKu1WMOQiSCncsg

to discuss https://www.s4me.info/threads/unite...n-governance-issues.42093/page-66#post-591834

 

CS writes to the MP in charge of the DHSC delivery plan:

https://meassociation.org.uk/2025/0...minister-in-charge-of-the-dhsc-delivery-plan/

Raises some concerns regarding the specialist services and the lack of a sufficient research plan.

They've also created a website where people can leave reviews for the NHS ME/CFS services:

https://meassociation.org.uk/nhs-specialist-services-me-cfs-lc/

 

Or about to happen services...SNEEICB..

 

I have issues with my sentence construction and grammar. So does the person who wrote this webpage. The difference is they didn’t get a second and third opinion before pressing send. It’s very poor English.

 

https://meassociation.org.uk/2025/03/updated-booklet-orthostatic-intolerance/

Updated Booklet: Orthostatic Intolerance

March 17, 2025

Dr Charles Shepherd, Honorary Medical Adviser to the ME Association has updated the ME Association's information on Orthostatic Intolerance (OI).

This free comprehensive booklet covers everything you need to know about OI in relation to ME/CFS and Long Covid.
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Direct link to free booklet:

https://meassociation.org.uk/wp-content/uploads/2025/03/ORTHOSTATIC-INTOLERANCE-OI-MARCH2025.pdf

 

Some results from MEA's online survey on diagnosis that they ran earlier this year. For many questions they've differentiated out diagnoses made before & after the NICE guideline.

Link | PDF