ENFA member organisation, INBAR, shared with us recently some fantastic news as a result of years of advocacy in Israel, lead by Sharon Gur and their advocate Ely Lotan. People with fibromyalgia in Israel will now be eligible for a disability stipend, announced by the National Insurance Institute (NII) in November 2019. The state will recognise…
DetailsRicardo Fonseca, President of Myos – the National Association against Fibromyalgia and Chronic Fatigue Syndrome (Portugal) and member of the board of ENFA, participated in the EPF Capacity Building Module on Empowering Leadership and Positive Governance, organised by the European Patient’s Forum, in 2019. This training lasted 6 months and two face-to-face meetings were held…
DetailsFibromyalgia is common and an enormous clinical burden for both patients and society. It is a very complex disease with a variety of symptoms in addition to the defining symptom – chronic widespread pain. These include fatigue, non-restorative sleep, morning stiffness, irritable bowel and bladder, restless legs, depression, anxiety and cognitive dysfunction often referred to as “fibro fog”. All of these symptoms cause serious limitations in patients’ ability to perform ordinary daily chores and work and severely affect their quality of life. The burden on healthcare and society is high. Research in the UK has shown that diagnosis and positive management of fibromyalgia reduces healthcare cost by avoiding unnecessary investigations and consultations. Yet a recent global survey showed that healthcare professionals lack confidence in diagnosing and managing fibromyalgia. The average time from development of symptoms to diagnosis is over 2 years with unnecessary medical referrals and investigations. Educating the public, patients and healthcare professional to promote better recognising and management of fibromyalgia will benefit patient, healthcare providers and society.
Professor Ernest Choy
Head of Rheumatology and Translational Research
School of Medicine, Cardiff University
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