United Kingdom: ME Association news

From Facebook:

Research: New funding awarded to PhD project that will identify key metabolites and infection markers in ME/CFS

We’re pleased to share news of a new PhD project that is being jointly funded by the MEA Ramsay Research fund and the UKRI (UK Research Institute) that aims to accelerate biomarker discovery in ME/CFS by identifying unknown metabolites and uncovering evidence of infection.

Find out more about the project on the blog: https://meassociation.org.uk/snrw

#MECFS #pwME #MyalgicE #RamsayResearchFund
 
From Facebook:

Obtaining an NHS flu vaccine from a pharmacy

Feedback from our members indicates that most pharmacies are, as in previous years, happy to provide a free NHS flu vaccine to people with ME/CFS who choose to have one.

When one of our members was recently refused a free flu jab at a pharmacy, she contacted the superintendent pharmacist - who confirmed that a mistake had been made and that she can have a free flu jab.

We have been given permission to use part of the very comprehensive information and apology she received - as this may be helpful if anyone else is refused a flu jab from a pharmacy.

Read the reply: https://meassociation.org.uk/uqtb

N.B. It is a personal choice whether to have the Flu vaccination. This information may help you obtain a free NHS Flu vaccination if you have ME/CFS and decide to have one.

#MECFS #pwME #MyalgicE #FluVaccination #NHS
 
From Facebook:

Successful Outcome: MOD to remove outdated ME/CFS Guidance following Health and Social Care Team intervention

The Health & Social Care Team (HASC) is pleased to share a positive outcome following recent engagement with the Ministry of Defence (MOD) regarding the treatment and management of ME/CFS within their health resources.

We were contacted by a concerned individual who highlighted potential harm caused to people with ME/CFS and outdated information in MOD materials.

In response, the HASC team wrote to the Air Marshal, please read our letter and their positive response here:

meassociation.org.uk

Successful Outcome: MOD to remove outdated ME/CFS Guidance following Health and Social Care Team intervention - The ME Association

The Health & Social Care Team (HASC) is pleased to […]
meassociation.org.uk meassociation.org.uk

#MECFS #MyalgicEncephalomyelitis #LongCovid #Employment #MOD #GET #CBT
 
Post-exertional malaise (PEM) is the hallmark feature of ME/CFS and unlike people who are simply deconditioned, those with ME/CFS have been shown to respond abnormally to exertion, with evidence that the condition is underpinned by a complex interaction of persistent immune activation and neuroinflammation (Nakatomi et al., 2014; VanElzakker et al., 2019), coupled with autonomic dysregulation and mitochondrial impairment in both immune cells and muscle tissue (Naviaux et al., 2016).
Click to expand...
Speaking of unhelpful biobabble..

It’s good they managed to get CBT and GET removed at least.
 
hotblack said:
A couple of updates from the MEA

This mentioned in the relevant thread
meassociation.org.uk

New Kent and Medway ME/CFS and Long Covid specialist referral service - The ME Association

A new ME/CFS and Long Covid service has been issued […]
meassociation.org.uk meassociation.org.uk

And more details on the ‘Healthcare 4 ME’ team and the pilot they have been running here
Click to expand...
It does not surprise me to find the MEA fingerprints on this with no criticism of the nurse led, rehab and recovery and back to work strategy with "treatments". On brand as always failing to criticise that which is quite concerning in this tender.
 
I’ve not managed to read it all but looking through the annual report there is some good stuff in there. It flags many of the problems we face. It has data on dissatisfaction and does raise the particular issues of severely affected patients.

This service left me very disappointed. They told me that as I have severe ME/CFS they could not offer me any help. How can it be that the more severe your illness is, the less help is available?
Click to expand...
The staff were lovely but had nothing useful to offer beyond a diagnosis. Their approach is purely biopsychosocial, and they will not accept new referrals unless the patient agrees to accept this.
Click to expand...
The clinic was staffed by a mental health nurse and a physiotherapist. So, I was concerned it would be CBT and graded exercise. All they offered was a weekly 2 hour zoom call with other patients.
Click to expand...

What I’m slightly confused about is the conclusion that the approach this team are now taking to address this is the right one or that their pilot has been a success. Where is the evidence for this?

They seem to have identified that the current approach does not work and then decided that the solution is for more of it. or perhaps a few tweaks here and there. That is the goal is to get lots of the people responsible for these failures together to share how they do things, or as they put it

The HASC team has effectively enhanced the sharing and adoption of service models among ICBs through targeted networking, e-introductions, and knowledge exchange events. This effort supports the delivery plan’s goal of promoting consistent and equitable care nationwide while reducing local duplication of efforts.
Click to expand...

There’s some words which will make commissioning groups and service providers happy I’m sure. And the people involved can feel fuzzy that they’re doing something. But I do not see a service model being outlined which gives us the significant changes needed to address the concerns raised and the very real risks patients face. We don’t have examples of good clinical care in current provision for ME/CFS services to share or promote.

I don’t doubt some good intentions but I also don’t see how this helps. I do see how this allows existing services and BACME to continue doing what they do.
 
Last edited:
First response was that patient needs don't figure anywhere in this, do they. It's all about service providers's needs.

But then...

The staff were lovely but had nothing useful to offer beyond a diagnosis.
Click to expand...

A service that only offers diagnosis probably has it about right, doesn't it? There is nothing else. Nothing a GP couldn't offer, anyway.

Though I remain wary of diagnosis being undertaken by nurses or general therapists. If they're only trained to recognise ME/CFS, ME/CFS is all they'll diagnose. It should be a physician.
 
Last edited:
Jonathan Edwards said:
Lots of other things might have been on offer, just useless.
Click to expand...

Yep, a great opportunity to save time and money.

Maybe they should do it like the adult autism service. You got your diagnosis, then they asked if you had any questions, signposted you to groups and sources of information, and invited you to call them if you needed support with anything.

Then, three or four weeks later, they did the questions, signposting and support bit again. There was plenty of time to discuss it in whatever way you wanted.

I thought that was an insightful approach. Often people are only given an opportunity to ask questions immediately after they've been given big news, and they struggle because they've had no time to take it in or reflect.
 
Kitty said:
Though I remain wary of diagnosis being undertaken by nurses or general therapists. If they're only trained to recognise ME/CFS, ME/CFS is all they'll diagnose. It should be a physician.
Click to expand...
Yes. From memory, various ME/CFS specialists physicians have said that something like 30% of their ME/CFS referrals have been misdiagnosed.

If all you have is a hammer, everything looks like a nail.
 
hotblack said:
I don’t doubt some good intentions but I also don’t see how this helps.
Click to expand...
I know it's something that is discussed a lot, but I simply can't accept the idea that good intentions are compatible with doing something that not only has zero chance of helping anyone, but actually makes outcomes worse and delays real help. Especially not after literal decades of total failure. These people are not children who need to be given cookies for booboos. If they can't do the job they deserve to be fired and their work trashed with prejudice.

Good intentions aren't an emotional state, they are a series of plans and actions, and actions taken that have no chance of helping simply don't qualify as good intentions, otherwise we end up with similar nonsense as scams being perfectly fine because the scammer genuinely meant well, which at best means delusional. I apply words and their meaning, I'm weird like that.
 
Today at 4.30 - Rosetta Stone study

Today on Radio 4 BBC Inside Science at 4.30 pm, the ME Association's Rosetta Stone study, our largest ever research project which was announced in December, may be featured!
If you'd like to tune it, you should be able to watch it via the link here after the 4:30pm broadcast on 8/01/2025: https://www.bbc.co.uk/programmes/w3ct8txt
Please note that many last minute changes can happen in live broadcasting which are beyond our control.
#MECFS #RosettaStone #RamsayResearch #pwME #MyalgicEncephalomyelitis #LongCovid



To discuss - go to the thread on the Rosetta Stone study here
 
Last edited by a moderator:
rvallee said:
I know it's something that is discussed a lot, but I simply can't accept the idea that good intentions are compatible with doing something that not only has zero chance of helping anyone
Click to expand...
I don’t disagree. More that my motivation in saying they have good intentions is that they really think they are doing something which will help people. I think they are wrong in this and many here would agree. But differences in opinion are not something it is easy to arbitrate. Even if we have hard evidence. Understanding this is important in how we deal with this.
 
You must log in or register to reply here.
Back
Top Bottom