Please find below information regarding a survey being carried out by ENFA (European Network of Fibromyalgia Associations).
Please share this message, asking as many people with fibromyalgia to complete the survey and help provide the essential evidence required.
Collecting information for Fibromyalgia international Awareness Day 14thMay 2015
ENFAhas produced a survey to discover how fibromyalgia is treated throughout Europe. This will enable us to give evidence to the decision makers about any differences, expenses incurred and the widespread nature of the condition.
To do this we need as many people from as many different countries in Europe as possible. It will not be affective with only a few hundred responses, we need thousands!!!
Survey closes 14thApril 2015
Margaret Probin is organising a Masquerade Ball to take place in Manchester on the 4th April 2015. She tells us why she is holding this fantastic fundraiser
"My Name is Margaret Probin. I am 34-years-old and I live in Manchester, England. I suffer from a condition called fibromyalgia. I am planning a fundraising Charity Ball which will take place on the 4th of April 2015 at the new glamorous Irish Centre in Cheetam Hill, Manchester. The charity event is called, Behind the Mask. The idea behind the name is because when someone suffers from fibromyalgia no one can tell how they are feeling inside or out. Therefore it feels like you are wearing a mask, making it difficult for anyone to see how you are feeling. This event is to highlight this misunderstood condition, raising awareness and raising funds which will go towards fibromyalgia research. The organisations I am working with are Fibromyalgia Association UK and Fibroduck Foundation.
Volunteers are required for a questionnaire study comparing the symptoms of people with fibromyalgia, chronic fatigue syndrome and irritable bowel syndrome. The study is being carried out by researchers at Plymouth University.
A comprehensive survey into the symptoms of people with ME/CFS, fibromyalgia and irritable bowel syndrome is the first study to exam a wide range of symptoms of people with these conditions. The aim of the study is to find out to what extent there is an overlap in symptoms and to what extent symptoms are different between different diagnoses. Anyone with these conditions can take part, and the study is also being advertised on ME/CFS and IBS websites.
The questionnaire is completed online and is anonymous. The questionnaire asks you to rate the frequency of 62 symptoms. It takes about 4 minutes to complete, but some might take more and some less time. We need as large a sample as possible, so if you can spare the time, we would be very grateful if you could take part.
FMA UK will be provided with the results once they have been analysed.
To complete the questionnaire, please go to
Reduced volume in the hippocampus is just the latest of many brain finding in fibronyalgia
Read more: The Pain Brain: Hippocampal Atrophy Found in Fibromyalgia http://www.cortjohnson.org/blog/2015/02/16/pain-brain-hippocampal-atrophy-found-fibromyalgia/
Prescription Charges Coalition statement on the proposed reintroduction of prescription charges in Northern Ireland
FMA UK are a member of the Prescription Charges Coalition
The Prescription Charges Coalition of nearly 40 charities and organisations believes that everyone with a long-term condition should be exempt from prescription charges wherever they live in the UK. Currently, people with long-term conditions do not pay prescription charges in Wales, Scotland and Northern Ireland. However, the majority of those who are of working age in England are charged.
Medication is extremely important to help people with long-term conditions to manage their symptoms and lead independent lives. There is a strong evidence base which demonstrates that prescription charges act as a barrier to people with long-term conditions obtaining the medication they require. This can lead to poor management of the condition and complications that may result in greater cost to health and social services.
People with long-term conditions in Northern Ireland would be disadvantaged by the reintroduction of charges and some may be unable to afford their medicines, potentially leading to poor health, increased hospital admissions and lower productivity.
Governments can choose how to raise revenue and support the availability of specialist medicines. The Prescription Charges Coalition do not believe it is appropriate, reasonable or fair to do this at the expense of those with long-term conditions and will be responding accordingly to the consultation.
Thank you to everyone who has volunteered to take part in this study. There are now enough for the research.
Do you think diet could help with the symptoms of FM? Then consider taking part in this study as a step to proving this.
Are you diagnosed with fibromyalgia? Are you interested in taking part in a diet study?
A team at the University of Surrey are conducting a study to assess the impact of following a gluten-free diet in symptoms of Fibromyalgia. The study will take 6 weeks to complete. It will involve completing 3 four day food diaries and a weekly symptom questionnaire.
We are recruiting females who have a diagnosis of fibromyalgia and would consider following a gluten-free diet for 4 weeks, along with their normal diet for 2.
All data will be kept confidential. This study has received a favourable opinion from the Faculty of Health and Medical Sciences Ethics committee at the University of Surrey.
If you would be willing to take part, please contact:
Volunteers are required for the Brain in Pain study which is being carried out by The Centre for Psychiatry, Barts and The London School of Medicine and Dentistry, Queen Mary University of London.
Please contact Dr Bourke directly if you are interested in participating.