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Successful Outcome: MOD to remove outdated ME/CFS Guidance following Health and Social Care Team intervention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We were contacted by a concerned individual who highlighted potential harm caused to people with ME/CFS and outdated information in MOD materials.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Successful Outcome: MOD to remove outdated ME/CFS Guidance following Health and Social Care Team intervention - The ME Association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).
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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
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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.
 
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