Fibromyalgia, a disease that has been underestimated for too long. Yet today in Italy hundreds of thousands of people, men and women suffer from it: it is estimated that over 500 thousand people are affected by a particularly painful and disabling form. Numbers in hand, the Italian specialists, gathered in Rimini for the 58th national congress of the Italian Society of Rheumatology (Sir), make an appeal: that fibromyalgia be immediately included in the essential levels of care (Lea).
Musculoskeletal pain, a series of symptoms and signs, such as sleep disturbances, gastrointestinal problems, headache, which greatly lower the quality of life. In a nutshell, this is fibromyalgia, a condition that – he reports Fausto Salaffi, associate professor of Rheumatology at the Polytechnic University of Marche and national head of the Fibromyalgia registry – in Italy it affects over 1 million and 200 thousand men and women, even if not all cases have the same level of severity. Fibromyalgia is still not easy to diagnose today. “Patients – adds Salaffi – even years pass between one specialist and another before the diagnosis is confirmed, with consequences on evolution and prognosis”.
The register
Two years ago, SIR activated a disease register, which today collects the data of 4,022 people recruited in 45 specialized centers operating throughout the country, the largest in the world for the number of patients involved. “A fundamental tool for patients, doctors and institutions, which allows them to carry out medical-scientific research,” he says Roberto Gerli, National President of SIR. “We can improve the knowledge of the natural history of the disease, define the time interval between the onset of symptoms and diagnosis, monitor and update the diagnostic-therapeutic-assistance pathway (PDTA). Finally, it allows us to quantify the outcomes and ‘social-economic impact on the entire community “. The registry also plays a central role in the development of precision medicine for these patients, because it allows precise data on this rheumatological pathology to be available.
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Manage fibromyalgia
The pandemic has highlighted the many weaknesses of the national health service, but in some respects it has spurred the beginning of a change, that towards the digitization of health structures and towards telemedicine. “Fibromyalgia could also be managed using telemedicine as well,” adds Gerli. “The latter represents a precious resource and is also the only modality that allows the territorialization of certain health services and the possibility of reaching patients at home remotely”. However, we must not make the mistake of considering telemedicine a substitute for traditional medical visits or a system to speed up waiting times.
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“As SIR we have activated the iARPlus TeleMedicina Web platform involving 44 rheumatology centers scattered throughout the country – underlines Salaffi -. We have, in one year of activity, encountered some problems, especially bureaucratic-administrative and indeed regional strategies should be implemented to report tele-visits. At the same time, the great potential associated with new technologies was highlighted, especially as regards the patient’s adherence to periodic checks and treatments “.
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