International ME/CFS and Fibromyalgia Awareness Day 2025
- SMEFG
- May 12
- 4 min read
Today, Monday 12th May is International ME/CFS and Fibromyalgia Awareness Day. A day where we come together to raise awareness for those living with ME/CFS and fibromyalgia.
ME Awareness Week (12th-18th May) is also observed every year in May.
Sheffield ME and Fibromyalgia Group supports people with ME/CFS and fibromyalgia, their families and their carers, in SYorks and NDerbyshire.
We will be active on social media today and the rest of the week sharing stories from our members living with ME/CFS and fibromyalgia alongside sharing other relevant content including what is happening for the awareness week/day.
Statement from Maria Ashmore, Director of Sheffield ME & Fibromyalgia Group
Hello to all our members and to everyone reading our website today.
Today marks the beginning of ME/CFS Awareness Week, a crucial time to amplify the voices of those living with ME/CFS and advocate for greater understanding, research, and support. It is also Fibromyalgia Awareness Day (12th May), highlighting the challenges faced by those with fibromyalgia.
These conditions can be life-altering, yet access to proper care, recognition, and research funding remains severely lacking. At Sheffield ME, Fibromyalgia and Long Covid Group, we provide essential support, benefits advice, peer groups, and campaign for lasting change locally and nationally.
Throughout this week, we’ll share personal stories from our members, reinforcing the urgent need for better healthcare and increased research funding.
Though I’m new to the charity, I’ve already witnessed the team’s dedication to supporting our members. Their passion strengthens my resolve to drive change—not only for those living with these conditions but for their families, friends, and carers as well.
I want to acknowledge our hardworking staff, trustees, and special thanks to Claire, our Communications Officer, who has led this campaign. Sheffield ME, Fibromyalgia and Long Covid Group is truly member-led—our mission is shaped by those directly affected. We are committed to ensuring that all individuals impacted—regardless of background or circumstance—are welcomed, valued, and heard.
I am focused on collaborating with the NHS, Local Authorities, and voluntary sector organisations to achieve meaningful change. As time goes on, I look forward to meeting and working with more of you, learning from your experiences, and continuing to build a strong and supportive community together.
I invite you to engage with our campaign, share your story, and support #MEAction’s SOS: Save Our Science initiative, calling for vital research investment.
Letter to your MP
Some of our volunteers and staff have put together a template letter for you to send to your MP about ME Awareness and the ME Delivery Plan.
Please see the template here and a handy website that helps you find out who your MP is and send a message to them - https://www.writetothem.com/
You can copy and paste our letter text and just add your name and address - easy!
#MEAction’s SOS: Save Our Science campaign!
In the UK people with ME/CFS finally had the possibility of significant research funding from the government through the ME/CFS Delivery Plan. With no money allocated to date in the Delivery Plan hopes of progress are dwindling.
#MEAction UK encourages all people with post viral illness and disabilities to join this fight. It’s time to send out a SOS signal.
📣 This ME Awareness Day, we’re calling on the Medical Research Council (MRC), Department of Health and Social Care (DHSC) and National Institute for Health and Care Research (NIHR) to properly fund research for ME/CFS.
📝 Share your SOS message online – letters, art, videos – using the hashtags #DisabilitySOS #MillionsMissing and tag @MEActNetUK.
📧 Or email it to sos@meaction.org.uk and #MEAction will share it for you.
💥 Let’s flood them with the voices they can’t ignore.
How does Sheffield ME and Fibromyalgia Group help our members?
If you are experiencing the symptoms and effects of ME/CFS and fibromyalgia, you may find that you are having difficulty managing your daily life, and perhaps your ability to work. You may be entitled to help and support through the benefits system, from social care (provided by your local authority), or extra help at work.
- We have a fantastic benefits team and you can find out more about the services the team provides here - https://www.sheffieldmegroup.co.uk/benefits
- We offer a wide range of online and in-person activities/meet-ups for people living with ME/CFS and fibromyalgia. You can find a full list of activities we offer online and in-person here: https://www.sheffieldmegroup.co.uk/current-activities
- If you are not a member of SMEFG, more details about this and how to become one can be found here: https://www.sheffieldmegroup.co.uk/become-a-member
- Additionally, our website contains extensive information about ME/CFS and fibromyalgia, including NICE guidelines and how to talk to your doctor about your symptoms, helping you navigate your healthcare journey with confidence
Other useful resources:
- #MEAction’s UK Medical Education Resources on ME - https://meaction.org.uk/meded
We finish our International ME/CFS and Fibromyalgia Awareness Day post with some powerful statements from our members.
“One day you’re fine, the next you’re knocked sidewards and sidewards again! Your life goes on a rollercoaster not knowing how you’ll be from 1 day to the next!” Clairylairy
“I’m unable to have windows open as the slightest breeze can hurt my body and cause pain attacks so severe it makes me cry and experience so many different sensations at once that my body feels it’s going to turn into a statue. The slightest touch can feel like I’m being nipped really hard, noises can cause me severe pain and my body will hurt with shooting, stabbing, burning pains. Muscle and joint pain that stops me from being able to walk/stand, tinnitus and fatigue so severe I am unable to stand to shower, lift cutlery to feed myself or sometimes even talk or listen to people speak.” Natalie Salmons
“My general experience of living with ME is a decreasingly smaller life, that consists of cycles of grief, acceptance and adaptation for every loss (career, hobbies, driving, family time, showers etc).” Tracy
“The ME community has helped me so much with managing and navigating all this - we keep us safe.” Jane
