United Kingdom: ME Association news

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Nightsong said:
CS writes to the MP in the 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/
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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
 
Trish said:
Press Release: Leading UK Charity invests in Canadian trial of drug treatment for ME/CFS and Long Covid

It's not a new trial. It's the one Luis Nacul is running in Canada. This is top up funds.
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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.
 
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Trish said:
I assumed this was a separate use of funds from the one CS has been hinting at.
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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?
 
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Screenshot
IMG_3874.jpeg

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
IMG_3875.jpeg

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.
 
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I am listening to a 4 minute clip referencing an article in the Times today, linked from the MEA page. No idea what it is about ( only that it's about lack of services for Me.)
Every time there is a reference to ME or ME/CFS, it is pronounced Me. Offering an option to listen to a report must include basic correct pronunciation. I have very little idea about what was said.
Can instructions about pronunciation be given to ChatGPT etc?

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