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.
-----
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

 

Currently there is a fb post letting encouraging people to feed back on their clinic


These never work it seems so go to MEA fb page and it’s one of the first on scroll currently:
https://www.facebook.com/meassociation/

the questions they listed in fb post though are;

were the staff friendly and helpful? Did you have to wait a long time for your diagnosis? How was your appointment?

I more than anyone understand the issue with not leading on any questions

however it does feel like given this might be people brand new to being ill who might be feeling a bit foxed by strange promises if it is bps etc then there could be room for some direct questions re: compliance with new guideline (in unbundled terms ie the specifics of it as many mightnt have read it or know about the old one of that pacing up is them being given get etc) that people can skip if they want but at least ask if they had some form of get thrown at them or if CBT was sold heavily as a cure for symptoms rather than support for grief if they had it etc

there are probably other questions we could list that surveillance like this would need , as would worried people who don’t know whether to go to a referral and so on ?


Surely they know that the what is being offered and by whom is more important than the gift-wrapping?

 

Important thing to flag - could they be collecting these as stats?

 

Screenshot


they have not described this well.

so you go homepage>health & social care>NHS Specialist Services for ME/CFS and Long Covid

enter a postcode and it pulls up all nearby

Here is an example with a review somebody left


I don’t really see the point of this, it’s mainly going to be people moaning isn’t it? The odd glowing review. We know what the services offer (not a lot) who does this help? Disheartening for newly diagnosed people, of no interest to long-diagnosed people. User-generated, so not kept up to date.