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.
NHS Lothian logo in blue on a white background.
#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.
@clairebakermsp.bsky.social @richardbakermp.bsky.social @anassarwar.bsky.social @monicalennon.bsky.social @sarahboyack.bsky.social @martinwhitfieldmsp.bsky.social
A photo montage showing M E Action volunteers meeting various MSPs, MPs and prospective parliamentary candidates at the Scottish Labour Party spring conference.
Another weekend, another party conference.
This time it was the Scottish Labour Party Conference, a single day conference which proved both busy and fruitful for #MEAction Scotland volunteers, Janet and Judith.
#MyalgicEncephalomyelitis #MyalgicE #HealthEquality
Survey link:
www.smartsurvey.co.uk/s/NHSAA_MECF...
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?
The first question is geared towards those who live within the NHS Ayrshire and Arran health board area, but everyone is welcome to take part, regardless of what health board they are covered by.
They are particularly interested in hearing from those who live with the condition, but also welcome input from friends and family members. This will hopefully allow anyone with severe or very severe ME to have the survey completed on their behalf.
#MEAction Scotland has been contacted by the Long Covid service within NHS Ayrshire & Arran. They are asking the ME/CFS community to complete a short survey to help them design the new service they’re setting up with their share of the £4.5 million announced by the Scottish Government last autumn.
BBC Radio 4 Inside Health graphic with illustrations of tablets, jars, stethoscope, apple, syringe in blue orange and green.
𝗜𝘀 𝘁𝗵𝗲 𝘁𝗶𝗱𝗲 𝘁𝘂𝗿𝗻𝗶𝗻𝗴 𝗼𝗻 𝗠𝗘 𝗿𝗲𝘀𝗲𝗮𝗿𝗰𝗵?
Our thanks to MEAction UK volunteers Catherine and Jo for giving their time & energy to speak so clearly about ME.
#insidehealth #MyalgicEncephalomyelitis
www.bbc.co.uk/programmes/m...
A white man and a white woman, looking at the camera and smiling. The woman is wearing an M E Action t-shirt, lanyard and ID badge.
A white man and a white woman, looking at the camera and smiling. The woman is wearing an M E Action t-shirt, lanyard and ID badge.
A white man and a white woman, looking at the camera and smiling. The woman is wearing an M E Action t-shirt, lanyard and ID badge.
Three white women, looking at the camera and smiling. The women on the far left and far right of the picture are wearing M E Action t-shirts, lanyards and ID badges.
#MEAction Scotland volunteers had a busy morning at the @scottories.bsky.social Spring Party Conference. They spoke to a variety of delegates including prospective parliamentary candidates, councillors, MSPs & an MP @brianwhittle.bsky.social @suewebbermsp.bsky.social
@tesswhitemsp.bsky.social
Three white women, looking at the camera and smiling. Two of the women (far left and far right) are wearing M E Action t-shirts and lanyards.
Two white women, both wearing glasses, looking at the camera and smiling. The woman in the right is wearing an M E Action t-shirt and lanyard.
A white man (left) and a white woman (right) looking at the camera and smiling. The woman is wearing an M E Action t-shirt and a lanyard.
A productive first day for #MEAction Scotland's volunteers at the Scottish Liberal Democrats Spring Conference.
Today we have engaged with a range of prospective candidates as well as MPs and MSPs @mpsusanmurray.bsky.social @cajardinemp.bsky.social and @jamiegreeneuk.bsky.social
#MyalgicE
New Trustees Needed! White text on blue background with red illustrated hands reaching for hearts. Text - MEAction UK is excited to share this opportunity to become part of our Board of Trustees! This is an opportunity to use your skills to support the growth of a grassroots charity. Contact us today to learn more about this exciting volunteer opportunity. Lean more www.meaction.org.uk
Only 3 days left! MEAction UK is looking for new trustees! This is an opportunity to use your skills to support the growth of a grassroots organisation fighting for awareness & care for people with ME. shorturl.at/tZTMG
#CharityTrustee #MyalgicEncephalomyelitis
MEAction UK is working on a survey of #pwME with the University of East Anglia (UEA) Medical School to assist in developing a research application. For more Info & take part: meaction.org.uk/news/2026/02...
#MyalgicEncephalomyelitis
NHS Highland have announced that its new virtual service for ME/CFS will be available "from spring"
NHS Highland's full spending proposal is available to read here bit.ly/4a9Ium4
#MyalgicEncephalomyelitis #MyalgicE #HealthEquality
New Trustees Needed! White text on blue background with red illustrated hands reaching for hearts. Text - MEAction UK is excited to share this opportunity to become part of our Board of Trustees! This is an opportunity to use your skills to support the growth of a grassroots charity. Contact us today to learn more about this exciting volunteer opportunity. Lean more www.meaction.org.uk
Reminder! MEAction UK is looking for trustees! This is an opportunity to use your skills to support the growth of a grassroots organisation fighting for awareness & care for people with ME. shorturl.at/tZTMG
#CharityTrustee #MyalgicEncephalomyelitis
New Trustees Needed! White text on blue background with red illustrated hands reaching for hearts. Text - MEAction UK is excited to share this opportunity to become part of our Board of Trustees! This is an opportunity to use your skills to support the growth of a grassroots charity. Contact us today to learn more about this exciting volunteer opportunity. Lean more www.meaction.org.uk
A reminder that MEAction UK is looking for new trustees! This is an opportunity to use your skills to support the growth of a grassroots organisation fighting for awareness & care for people with ME. shorturl.at/tZTMG
#CharityTrustee #MyalgicEncephalomyelitis
On a blue background an image of a piece of paper being put into an envelope. Sign up for our UK mailing list is written on the paper. MEAction logo in at the top and meaction.org.uk is at the bottom of the image.
Remember to sign up for our UK mailing list to keep informed about our work. meaction.org.uk/contact
#MyalgicEncephalomyelitis
Heading from The Courier - Fife mum's health struggle reveals alarming lack of specialist care at NHS Fife. Photo of white women with grey bobbed hair wearing a dark blue top with spots.
Last autumn, #MEAction Scotland went to the Scottish Liberal Democrat Party Conference & spoke to journalist, Justin Bowie of @thecourieruk. We then put Justin in touch with our supporters. www.thecourier.co.uk/fp/politics/...
#MyalgicEncephalomyelitis
New Trustees Needed! White text on red background with blue illustrated hands reaaching for hearts. Text - MEAction UK is excited to share this opportunity to become part of our Board of Trustees! This is an opportunity to use your skills to support the growth of a grassroots charity. Contact us today to learn more about this exciting volunteer opportunity. Lean more www.meaction.org.u
A reminder that MEAction UK is looking for new trustees! This is an opportunity to use your skills to support the growth of a grassroots organisation fighting for awareness & care for people with ME. shorturl.at/tZTMG
#CharityTrustee #MyalgicEncephalomyelitis
New Trustees Needed! White text on red background with blue illustrated hands reaaching for hearts. Text - MEAction UK is excited to share this opportunity to become part of our Board of Trustees! This is an opportunity to use your skills to support the growth of a grassroots charity. Contact us today to learn more about this exciting volunteer opportunity. Lean more www.meaction.org.u
MEAction UK is looking for trustees! This is an opportunity to use your skills to support the growth of a grassroots organisation fighting for awareness & care for people with ME. Read our Trustee Role Description shorturl.at/tZTMG
#CharityTrustee #MyalgicEncephalomyelitis
Remember to sign up for our mailing list to keep informed about work. meaction.org.uk/contact
#MyalgicEncephalomyelitis
#MEActionUK emailed @NHSEngland about incorrect info on its ME/CFS webpage. Our request will be 'added to their backlog for a member of the website team to pick up when there is capacity'
bit.ly/3NoAFRF
#MyalgicEncephalomyelitis #HealthEquality
It's good to see BBC Inside Science covering Danny Altman's research at Imperial College funded by the ME Association. Coverage starts at 6.55.
Amanda Stephen, a white woman with mid length brown hair wearing glasses and a deep pink patterned top stands outside in front of plants and shrubs.
We start 2026 by bringing you an article from The Press and Journal by Justin Bowie detailing Amanda's struggles with ME and disbelief and quoting a #MEAction Scotland volunteer.
Read the full article here: shorturl.at/7mbuK
#MyalgicEncephalomyelitis #MillionsMissingUK
As we come to the end of 2025 it's time to thank you all for your support of our recent launch as a UK charity & all our amazing volunteers. Please find list of resources which we hope will be helpful over the holiday.
meaction.org.uk/news/2025/12...
A Group of five people smiling at the camera. From left to right they are Kim Gurav, Gillian Grant, Emma Shorter, Stuart Murdoch and Janet Sylvester.
FLASHBACK!
OFFICIAL LAUNCH OF #MEACTION SCOTLAND
Kim Gurav, Emma Shorter and Janet Sylvester officially launched #MEAction Scotland As we launch as a UK charity, join us and help us fight for equitable research and treatment.
meaction.org.uk
Poster of Unrest film with Jen Brea lying on a bed with electrodes attached to her head. Flashback stamp at top and #MEAction UK and Scotland logos and Flashback October 2017 in white text at bottom.
Flashback! October, 2017 - Unrest shown in Parliament.
There is still much to do but, for now, enjoy our flashbacks and remember how much it took to get us here. ❤️
Sign up: meaction.org.uk/contact
Volunteer: www.totalgiving.co.uk/donate/meact...
#MyalgicEncephalomyelitis
Two women at at #MillionsMissing event, one wears a t-shirt with #MEAction logo, the other carries a poster. Flashback stamp top of image with #MEAction UK & Scotland logos and Flashback May 2017 in white text at bottom of image.
Founders of #MEAction Scotland, Janet and Emma hold a 'Join Us' flyer wearing #MillionsMissing red and white t-shirts. Flashback stamp top of image with #MEAction UK & Scotland logos and Flashback May 2017 in white text at bottom of image.
Shoes arranged on pavement as part of a #MillionsMissing event with red and white banner on railings in the background. Flashback stamp top of image with #MEAction UK & Scotland logos and Flashback May 2017 in white text at bottom of image.
Flashback!
We held our first #MillionsMissing in Scotland! Other UK protests in Birmingham, London, Newcastle, Newry & the Isle of Man.
Join us! meaction.org.uk/contact
Donate/volunteer: www.totalgiving.co.uk/donate/meact...
#MyalgicEncephalomyelitis
