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

 

the ME association is funding a drug trial of lOW Dose Naltrexone on those with long Covid for three months who meet ME Criteria

https://meassociation.org.uk/2025/0...-of-drug-treatment-for-me-cfs-and-long-covid/

 

A pity their help was required to help the trial reach its recruitment target. But not the worst use of funds in my opinion. And good to see them willing to fund research outside the UK.

 

Thanks I didn’t read right through. I’m surprised it is just top up funds as Dr Charles Shepherd has been hinting at an exciting drug trial and I thought that it would be new. I also don’t think its findings are going to be that relatable to people like myself and the long term ill with m.e who need to be included in trials too but are being excluded left , right and centre or put to the back of the queue, which given how long we have been waiting isn’t fair in my opinion . I would have been more excited if the MEA had given more of their money and paid for an arm of the trial which was on people ill pre-Covidm perhaps 5 to10 years and moderate or severe to give a comparison to a long-covid cohoet Ill three months which in m.e terms is very, very short duration with 1 trigger. it’s possible a long covid charity would have eagerly funded this part.

 

Ah well if you are right, it will probably be announced on ME awareness day. Dr s has said he’s not aware of any UK trials regarding LDN so I’m pondering what other drug the MEA has shown any interest in