Statement ProfessionalsFibromyalgia 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.
Dr. Ernest Choy
Consultant Rheumatologist and Reader in Rheumatology
Director of Clinical Trials Unit in the Academic Department of Rheumatology
King's College London
-------------------------Fibromyalgia is a prevalent disorder. Pain, fatigue and other symptoms of fibromyalgia have major consequences for the wellbeing and functioning of people with fibromyalgia. An extra burden is the invisibility and medically unexplained character of the symptoms. There is no uniformly accepted pharmacological treatment for fibromyalgia. Research should be aimed at the physiological mechanisms that explain and maintain the disorder and at behavioral processes that impact the physiological underpinnings and the consequences of fibromyalgia. Health care professionals should be educated to recognize the disorder and to help patients by learning them to cope with fibromyalgia. Society should acknowledge fibromyalgia as being a disorder with adverse consequences for wellbeing and functioning.
Prof.dr. Rinie Geenen, psychologist
Utrecht University & University Medical Center Utrecht, The Netherlands
Statement SympathisersFibromyalgia is an urgent health issue due to the enormous impact it has on those who suffer from the condition as well as the European economy. More than 10 million people have already being diagnosed in Europe and many more remain undiagnosed. Unfortunately, awareness of fibromyalgia is extremely low among healthcare providers and the general public and this can impede patients from getting the care and support they need. Being myself a patient diagnosed more than 15 years ago I can testify the extremely and negative impact it has on my daily life. For those reasons I think it would be extremely useful and very much welcome that the European Union, plays a role in order to improve the difficult situation of patients, taking the necessary steps to raise awareness of this condition and to support both educational programs and research that will advance diagnosis and management of fibromyalgia in Europe.
Statements Members of parliamentThe MEP of AKEL (GUE/NGL political group) Mr. Adamos Adamou took part in a press conference in Brussels related to his participation in the signing of a written statement (declaration) concerning the recognition of the fibromyalgia disease. The Cypriot MEP emphasized the need for an EU strategy which will clearly recognize the disease and raise awareness amongst the health sector as well as amongst the patients. Mr. Adamou also underlined the need for member-states to enhance their access to diagnosis and treatment through the development of data collection programmes so that patients can receive the appropriate treatment for their disease.
The MEPs who have signed the written declaration have given a powerful and hopeful signal to the 14 million European citizens affected by fibromyalgia, who are righteously asking for some recognition and attention for their disease. I strongly believe we can make a difference by pooling our expertise to raise awareness, improve access to diagnosis and treatment and speed up research. This would significantly improve the quality of life of many European citizens.
Today is an important day for the 14 million patients affected by Fibromyalgia. The European Parliament has expressed its support to bring this disease into the heart of the EU Institutions discussions by signing the written declaration. I am really happy to see that we have raised the voice of the patients at the European Level, and I am a strong believer that we will obtain the requests from this declaration.
The adoption today of this written declaration is only the beginning of a long journey for future achievements for fibromyalgia patients. Pain and any chronic pain disease need to be stop as it deprives individuals of a quality of life and become a source of exclusion and an additional factor of social inequality. I believe that as a politician and with my colleagues we will succeed in this mission.
Congratulations on achieving the support of a majority of MEPs for this Fibromyalgia Declaration . I am delighted that it has been adopted. Fibromyalgia is a condition that requires a supportive response from all of us and the Written Declaration is a step in the right direction for patients who suffer from fibromyalgia.