International Long Covid Awareness Day
- SMEFG
- Mar 15
- 6 min read
Today, Saturday 15th March is International Long Covid Awareness Day. A day where we come together to raise awareness for the millions of people living with Long Covid.
Sheffield ME and Fibromyalgia Group supports people of all ages living with Long Covid, their families and their carers, in South Yorkshire and North Derbyshire.
Statement from Maria Ashmore, Charity Director of Sheffield ME & Fibromyalgia Group
“As we mark International Long Covid Awareness Day on 15th March 2025, we recognise the profound impact Long Covid continues to have on many lives. At Sheffield ME & Fibromyalgia Group, we are committed to supporting those affected, raising awareness, and advocating for better research and treatment.
We also chair the Sheffield Long Covid Network, a group actively campaigning for continued support for people living with Long Covid. Access to healthcare, specialist treatment, and long-term support is essential for those affected, and we continue to push for better services.
In addition, we run a number of support groups and can share resources to help people manage their symptoms and connect with others who understand their experiences. Please do read on for details on how to access these.
People with Long Covid experience a wide range of symptoms. These commonly include but are not limited to:
• Breathlessness, Cough
• Chest tightness, Chest pain, Palpitations
• Fatigue
• Symptoms of anxiety and depression
• Cognitive impairment (‘brain fog’, loss of concentration or memory issues), Headache, Sleep disturbance, Dizziness, Mobility impairment, Visual disturbance
• Abdominal pain, Nausea, Diarrhoea and reduced appetite
• Joint pain, Muscle pain
• Skin rashes
• Tinnitus, Earache, Sore throat, Dizziness, Loss of taste and/or smell, Nasal congestion
If you have had symptoms for more than four weeks, you are not alone. Support is available.
How to Get Support
- Speak to your GP about symptoms, tests, and referrals to Long Covid services.
- Visit our website www.sheffieldmegroup.co.uk for guidance, peer support, and resources.
- Join our support groups to connect with others living with Long Covid.
We are always happy to answer any questions—please feel free to get in touch at info@sheffieldmegroup.co.uk.
We will continue working alongside our community to ensure that everyone living with Long Covid, ME/CFS, and fibromyalgia receives the care and support they deserve.”
Members’ stories
We reached out to our members who are living with Long Covid and asked them if they would share their personal story. Please find below extracts from their submitted stories about living with Long Covid and the impact it has on their lives.
“I have severe ME and Long Covid after having Covid in March 2020. I lie in bed in a dark room all day every day, except for going to the toilet. I can't shower or take a bath, or watch shows/films, read books, play games, or listen to music, and struggle to talk and sit up to eat. I rely on my amazing partner for everything.” Jane
“I was working as a train driver when I caught covid in May 2020. I never recovered as I developed severe post COVID ME two days after recovering from the infection. This cost me my job as there was no way I could do it. It was my dream job too!” MaddyC
“I was a runner and got COVID March 2020. Now long covid ME/CFS and orthostatic intolerance. I work 10 hours over 2 days which fries my brain and makes me ill but I so scared of benefits cuts. My life is completely changed, it’s not a normal life, most of it is spent in the sofa feeling ill or dreadful.” Deborah
“I first caught Covid in January 2020 - the so - called "Wild" strain. Quite simply, I have never recovered and have spent 5 years living a life that barely resembles my old one. I was used to living with Fibromyalgia, but nothing prepared me for the many and varied symptoms of Long Covid - from the crashing fatigue, to the debilitating brain fog, GI issues, constant infections, POTS, peripheral neuropathy, breathing issues and the sense of being stuck in a constant "fight or flight" mode.” Alison M
“Long Covid had taken away life as I knew it. It’s affected my children. Gone is the mum who used to wake them early and spontaneously drive to the beach, swim, dance and generally have energy. Constant pain, lethargy and fatigue and the inability to walk further than the bathroom on some days has taken its toll. I have also accepted that I am now disabled and that long covid is now part of my life forever.” Nikki
“Long Covid and POTS have completely upended my life. I am not able to work, I had to move back in with my parents two years ago at age 32 and everything is on hold for me. It's really hard to cope with such limitations when I used to live a busy life full of friends, travel, excitement and fun. Cognitive tasks and socialising can affect me as much, or sometimes even more, than physical activity, though I’m grateful that I’m able to see my friends occasionally.” Phoebe
We will be sharing these stories on social media throughout the day.
Thank you to everyone who has submitted their story so far, we really appreciate you sharing this with us.
If you would like to share your own story with us, please complete this form: https://forms.gle/ePj2NL3tWuT2nscy8
How does Sheffield ME and Fibromyalgia Group help our members?
If you are experiencing the symptoms and effects of Long Covid, 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 have a Facebook Long Covid support group dedicated to people with Long Covid that you are welcome to join.
“I now have friends from all around the world thanks to social media.” MaddyC
We run a friendly and supportive monthly Long Covid Meet-Up at Oakbrook Coffee House, 147 Oakbrook Road, S11 7EB. The meetup is usually the first Tuesday of the month, 1pm. You can find specific dates in our membership magazine and our newsletter.
We host the Long Covid Network and this is for anyone who lives with Long Covid, is a carer for someone with Long Covid or has an interest in Long Covid. The purpose of the Network is to coordinate a collaborative community that develops and shares information and resources to support people with Long Covid. Meetings are held monthly online.
To join the network, email longcovidnetsheff@gmail.com or call the SMEFG office on 0114 253 6700 (Monday to Thursday 10.45am - 2.15pm)
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
Other useful resources:
Family and Friends Leaflet
It can be hard to talk about Long Covid and the impact it has. We have created a leaflet for you to share with family and friends that explains what it is like to live with the illness. The insights in this leaflet were shared by people with Long Covid.
Long Covid NICE guideline for patients
This summaries the NICE guideline for Long Covid for people with the illness. It includes common symptoms and what to expect for diagnosis, planning care and management of symptoms.
Long Covid NICE Guideline for GPs
This summaries the NICE guideline on Long Covid for GPs, along with a link to the full guideline.
Healthwatch Sheffield
Healthwatch Sheffield has developed a range of resources and information leaflets and videos about Long Covid, in collaboration with community organisations in Sheffield.
We finish our Long Covid Awareness Day post with some powerful statements from our members
“For all of us, the pandemic isn't over. We continue to live with the effects of the Covid virus. My dream is to be able to go for a walk - to stand in a wood and look up through the trees. Something I have not had the energy to do for over 5 years.” Alison M
“The Covid pandemic is wrongly talked about in the past tense when it is still a mass disabling event. The ME community has helped me so much with managing and navigating all this - we keep us safe.” Jane