#MEAction Scotland

It was a busy, successful day outside @ScotParl for #MillionsMissing Scotland 👏 Lots of MSPs, including @jenni_minto, came out to speak to us and hear from #pwME. Many MSPs told us they came out because their constituents got in touch, so well done to everyone who emailed. 🧵

Another heartbreaking case of a very severe ME sufferer. Tomos is in Wales but there is nowhere treating the very severe anywhere in the UK. bbc.co.uk/news/articles/… #MyalgicEncephalomyelitis #VerySevereME

Children and young people may grieve changed abilities, missed milestones, friendships that slip, and a “before” life. Want to know how to help? Download this toolkit ➡️ bit.ly/4qCMCkL

In an election year, speaking to prospective parliamentary candidates is more important than ever. Last weekend, our volunteers spoke to three PPCs @snp.org Spring conference - @thewliss.bsky.social Kate Campbell and Steven Bonnar #MyalgicEncephalomyelitis #HealthEquality

Many children and young people take on caring roles without identifying as a young carer. This can mean key support they are entitled to is missed. Help make sure they’re supported effectively. Check out this toolkit bit.ly/4qCMCkL #BrainAwarenessWeek #DontAssumeImOK

Children and young people affected by neurological conditions can hide the impact. This is known as “masking” and can delay support. Do you work with children and young people? Check out this toolkit ➡️ bit.ly/4qCMCkL #BrainAwarenessWeek #DontAssumeImOK

#MEAction Scotland thank @BenMacpherson for his tireless support since our launch in 2018. Due to his recent appointment as a Minister, Ben is stepping down as our official parliamentary champion. We look forward to working with our new SNP champion, @PaulMcLennan7 #MyalgicE

Neurological conditions can co-occur with anxiety, depression, behavioural change and more. Read our toolkit on how to support children and young people impacted by neurological conditions ➡️ bit.ly/4qCMCkL #BrainAwarenessWeek #DontAssumeImOK

At least 1 in 6 people lives with a neurological condition, including children and young people. The mental health impact of these conditions can often be hidden Do you work with young people? Check out this toolkit bit.ly/4qCMCkL #BrainAwarenessWeek #DontAssumeImOK

Today is Long Covid Awareness Day. Now in its 4th year, this year's Long Covid Awareness Day focuses on the heart problems which can affect people living with Long Covid #LongCovid #ChronicIllness #LongCovidAwareness

During a busy day @theSNP Spring conference, #MEAction Scotland engaged with many MSPs, including Cabinet Secretary for Health and Social Care, Neil Gray, Minister for Public Health and Women's Health, @jenni_minto and First Minister, @JohnSwinney #MyalgicE #HealthEquality

Brain Awareness Week is coming soon. This year, we are raising awareness of the impact of neurological conditions on the mental health of children and young people. Watch out for our posts throughout the week. #BrainAwarenessWeek #DontAssumeImOk

It was a useful discussion and NHS Lothian is now considering next steps. We will follow up with them in a couple of months and update you regarding any developments. #MyalgicEncephalomyelitis #MyalgicE #HealthEquality

We asked them to support GPs by: - including clear diagnostic criteria for ME based on the 2021 NICE guideline; - providing advice on how to support patients while they are waiting for an appointment at the clinic; - removing reference to the bio/psycho/social model.

#MEAction Scotland volunteers recently met with staff from NHS Lothian to discuss its guidance for GPs who are considering referring patients to the ME/CFS clinic at Astley Ainslie Hospital.

Another weekend, another party conference. This time it was the @ScottishLabour Conference, a single day conference which proved both busy and fruitful for #MEAction Scotland volunteers, Janet and Judith. #MyalgicEncephalomyelitis #MyalgicE #HealthEquality

Survey link: smartsurvey.co.uk/s/NHSAA_MECFS_… The closing date for the survey is Friday 6th March 2026. 𝗡𝗢𝗧𝗘 𝘁𝗵𝗲 𝗰𝗹𝗼𝘀𝗶𝗻𝗴 𝗱𝗮𝘁𝗲 𝗶𝘀 𝗶𝗻𝗰𝗼𝗿𝗿𝗲𝗰𝘁𝗹𝘆 𝘀𝘁𝗮𝘁𝗲𝗱 𝗮𝘀 𝟮𝟴𝘁𝗵 𝗙𝗲𝗯𝗿𝘂𝗮𝗿𝘆 𝗼𝗻 𝘁𝗵𝗲 𝘀𝘂𝗿𝘃𝗲𝘆 𝗳𝗼𝗿𝗺

NHS Ayrshire and Arran are hoping to learn: What is important to you in terms of symptom presentation and management? What do you want to see in a service? What barriers have you experienced in accessing services? What has helped?

#MEAction Scotland has been contacted by the Long Covid service in NHS Ayrshire & Arran. They're asking the ME/CFS community to complete a short survey to help design a new service they’re setting up with their share of the £4.5M announced by the Scottish Government last year