Walsall Fibro and ME Link is a volunteer run Support Group for those with M.E./CFS and Fibromyalgia, their families and carers. We’re run by people affected by both conditions.
Our main objective is to break the isolation that can come with these conditions.
We have Support Group Meetings once a month in Walsall, a Group Library and produce a monthly newsletter.
We are able to provide information about local services, ideas for self-management and we help to raise awareness about the conditions within our Community.
At our monthly meetings we often have a speaker to talk to us about related topics that may help sufferers reduce the effect of the many symptoms of Fibromyalgia and ME/CFS.
Meetings over the last twelve months have included a talk about the Self-care management Programme, Tai Chi and Chair Exercise demonstration and a video about Fibromyalgia.
Affecting 2.9 – 4.7% of the population (at least 1.9 million people) Fibromyalgia is more common than ME/CFS.
More people have Fibromyalgia than Rheumatoid Arthritis.
Children can also be affected.
Myalgic Encephalomyelitis (M.E.) and Chronic Fatigue Syndrome (CFS)
250,000 people in the UK are affected by M.E. and/or CFS – that’s more than those with MS and Parkinson’s put together.
25% of sufferers are severely affected from housebound to bed bound, with the most severe 5% needing total 24 hour care and tube feeding.
Those who are most severe often feel invisible and as a result find it difficult to access services available.
Symptoms of ME/CFS
- Persistent flu-like illness
- Muscular pain, twitching, cramping and stiffness.
- Numbness and nerve pain.
- Persistent exhaustion – disabling fatigue.
- Joint pain.
- Disturbed sleep.
- Poor concentration and brain fog.
- Sensitivity to noises, bright lights and touch.
- Irritable Bowel Syndrome.
Symptoms can fluctuate from day to day and even within hours. Many of these symptoms overlap with the symptoms of Fibromyalgia.
What our members think….
“The Support Group has been a lifeline to me over the years, breaking the isolation that comes with M.E. and Fibromyalgia.
Each month at the meetings I kow I’ll meet up with people who can relate to what I’m going through.”
RAISING MONEY AT THE SUTTON FUN RUN
The film Unrest tells the story of twenty-eight year-old Jennifer Brea who is working on her PhD at Harvard and months away from marrying the love of her life when she gets a mysterious fever that leaves her bedridden and looking for answers.
Disbelieved by doctors yet determined to live, she turns her camera on herself and discovers a hidden world of millions confined to their homes and bedrooms by ME, commonly known as chronic fatigue syndrome.
At its core, Unrest is a love story. Together, Jen and her new husband, Omar, must find a way to build a life and fight for a cure. Their struggle to forge their relationship while dealing with her mysterious illness is at once heart-breaking, inspiring and funny.
The film goes alongside a Global Campaign #TimeForUnrest for equality for people with ME – equality for research funding and access to medical care.
Since May 2017 we have organised and taken part in three Millions Missing events in Birmingham together with Solihull and South Birmingham ME Support Group.
Black Country Neurological Alliance
The Black Country Neurological Alliance have been very supportive in helping us raise awareness for ME and Fibromyalgia, including with the Clinical Commissioning Groups (CCG’s) across the Black Country.
One of our members is a Trustee and Neuro Supporter.
BCNA have worked hard to campaign for the recent appointed Consultant Neurologists at the Manor Hospital and the redesign of the Neurology Service.