Fibromyalgia is known as a condition that is not life threatening but the suicide potential is not considered.
How many lives have to be taken? How many families destroyed before the necessary attention is paid to this life-changing condition?
In the UK, information about how many people with fibromyalgia have been diagnosed is not collected and a recent question by an MP about how many were receiving benefits was deemed too expensive to collate.
We regret having to announce that Nikki Southwell has resigned from her duties as regional coordinator liaison and regional coordinator for the South West and Yorkshire and Humberside.
She has always put heart and soul into every role she has undertaken and will be very difficult to replace.
I am sure all those who have met her or been in contact will appreciate her understanding and supportive attitude.
She is still going to be on our helpline rota providing her knowledge and expertise and a vital listening ear.
We hope with the lessening of duties she will be able to spend more time concentrating on her own health and family.
We would also like to take this opportunity to thank her husband Merlin, who has supported Nikki at all the events she has attended on our behalf and been a great help to everyone.
The FMA UK community wish them all the best.
Well done to Alex Bantick who took part in a Tough Mudder event on Sunday 13th July and for anyone who knows him well will know that this was big thing for as he says, ”Basically I am a sloth.”
But the main reason he did this was to raise awareness of Fibromyalgia. This is something that his girlfriend has been suffering with for the last 2 years. She puts on a very brave face 24/7 and hides it well, but I know deep down she is hurting.
Alex ran with his brother and the picture shows them after their 4 hour challenge.(Alex is on right)
The Ipswich Group recently held a summer party where they made £100 pounds on the prize draw ,also shared with another group. Carol Gormer tells us "it was hard work but at least it will help with hall costs and photocopying etc. Was a good night and enjoyed by all."
PatientView and Health 2.0 are undertaking a short survey. It aims to find out what patients and carers REALLY WANT from health apps.
This survey is an opportunity for patients and carers to tell app developers how health apps can be improved to better meet the needs of patients and carers.