Sep 19, 20222 min read

Steel City Support: what’s out there for ME/CFS, Fibromyalgia and Long Covid?

Chronic illnesses and long-term conditions affect nearly a quarter of the UK population and can feel incredibly isolating. But there are many charities and organisations that provide support and services, so that people don’t have to endure on their own.

One of these is Sheffield ME & Fibromyalgia Group, a small independent local charity that supports people in the wider Sheffield area living with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, Fibromyalgia and Long Covid, their family and carers.

What are these conditions?

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a chronic disease affecting the nervous system, immune system, endocrine system and metabolism. It often occurs after a viral illness, but the disease mechanisms are not known. The characteristic symptoms are debilitating fatigue that is not improved by rest, cognitive disturbances (‘brain fog’), and the illness worsening after exertion. It is estimated to affect more than 265,000 people nationwide - or over 2,000 people in Sheffield alone. 25% are so unwell that they cannot leave their house, and many of those being bedbound. This poorly researched condition has no cure, full recovery is rare.

Fibromyalgia is a chronic widespread pain condition that affects 2% of people nationwide - that's as many as 11,000 people in Sheffield alone. The pain is often accompanied by other symptoms that affect quality of life, such as brain fog, IBS and sensory sensitivity. Fibromyalgia can affect people of any age, gender or ethnicity, though is significantly more common in women. It is as common as rheumatoid arthritis but can be more painful. Like ME/CFS it is poorly researched and has no cure, but pain management can be offered.

Long Covid is a chronic complication of Covid-19, which can affect even people who were asymptomatic on infection. Research is in its infancy, but it seems to present in a number of different ways, some of which overlap with post-viral ME/CFS. It is estimated that 2 million people nationwide are experiencing Long Covid - or over 16,000 just in Sheffield alone. We’re only beginning to understand the impact on wellbeing for people in our city.

What support is there?

Sheffield ME & Fibromyalgia Group started in the ‘90s as a peer support group and became a registered charity (1095416) twenty years ago. They support people in South Yorkshire and North Derbyshire with ME/CFS, Fibromyalgia and Long Covid and offer a variety of services including:

Information and signposting
Peer support
Quarterly print newsletter
Benefits and Social Care advocacy
Talks from experts
In-person and online wellbeing activities (e.g. mindfulness, singing, arts & crafts)
In-person social meet-ups
Community outreach and campaigning