I've raised £1000 to help Hertfordshire ME/CFS Support Group enable social connection for those isolated by living with Myalgic Encephalomyelitis (ME/CFS)
Organised by Jacky Williams
Story
A year of fundraising…
Following on from the Art & M.E. An Exhibition as part of the #MillionsMissing campaign by ME Action during ME Awareness Week 2022 (photos above) in May, I pledged to a year of fundraising! This is to help and support those in the Hertfordshire ME/CFS Support Group keep connected, to improve quality of life and mental wellbeing by creating opportunities to meet with a view to preventing loneliness and isolation.
The success of the group has been built on strong friendships, mutual support and an understanding of living with ME. However, with more people being diagnosed with ME/CFS following Long Covid, our membership has grown exponentially since 2016.
“When my life turned upside down due to this debilitating, frightening and frustrating condition, our local ME support group provided a valuable lifeline. For this help and empathy I will always be grateful.”
All proceeds go to the Hertfordshire ME/CFS Support Group.
What is ME?
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (“ME/CFS”) is a debilitating multisystem chronic long term illness of unknown etiology, classified as a neurological disorder by the World Health Organisation (WHO) and recognised as a disability under the Equalities Act 2010.
ME/CFS is characterised by overwhelming fatigue with a substantial loss of physical and mental stamina and muscle weakness after exertion. Cardinal features are persistent fatigue, pain, cognitive dysfunction and a worsening of symptoms following minimal physical or mental exertion. Symptoms of Post Exertional Malaise (PEM) can persist for hours, days or weeks and are not relieved by rest or sleep.
In addition, physical and sensory symptoms include muscle and joint pain, sensitivities to light, noise and smell, problems with temperature control, cognitive dysfunction, orthostatic intolerance and difficulties mobilising, etc. As with many other long term chronic illnesses, living with and self management of such symptoms often results in increased anxiety and secondary depression.
It is a fluctuating condition which significantly affects people’s ability to carry out daily living tasks and dramatically affects the quality of life for those living with ME/CFS, their family and carers. As a result, not being able to actively socialise, maintain friendships and social connections can result in loneliness and isolation. As with many invisible disabilities, it is difficult for others to understand what they can’t see.
My year of fundraising is to help and support those in the Hertfordshire ME/CFS Support Group keep connected, to improve quality of life and mental wellbeing by creating opportunities to meet with a view to preventing loneliness and isolation.
Hertfordshire ME/CFS Support Group
The Herfordshire ME/CFS Support Group is a local community group run by volunteers providing self-help, support and social sessions for people with ME/CFS, Post Viral Fatigue Syndrome, Fibromyalgia and diagnosis of ME/CFS following Long Covid.
The group currently supports around 250 people and has grown exponentially since it was started in February 2016 by Maxine Ellis (Founder and President). Trustees include Mike Hodge (Chair & Treasurer), Gaynor Cashin (Development) and Peter Kelleher (Marketing). www.hertsmecfs.org
