It is scheduled for tomorrow, May 12, the international day of the Cfs/Me patient, a serious and disabling pathology that is still little known. It is also known as chronic fatigue syndrome and has different symptoms, punctuated by extreme fatigue not justified by the activities performed, accompanied by headaches, pain in the lymph nodes, memory and concentration problems, difficulty finding the right word, sore throat fever and changes in thermoregulation, musculoskeletal pain.
A so-called “total” syndrome that affects at various levels, from the mild one in which the patient, by adapting his lifestyle and dosing his energies, still manages to maintain a discreet and independent quality of life, up to a serious level with enticement and lack of autonomy.
recently theagenas, the National Agency for Regional Health Services, has issued the first guidance document on the pathology that has a strong social impact, affecting not only patients but also family members. Furthermore, these are problems that mostly concern women. «Considering that CFS/ME sufferers belong to the most productive age group in which their working life starts or stabilizes, not to mention the pediatric/adolescent cases where the continuation of schooling is strongly undermined, it is clear the ”the extent of the impact on the community as a whole” – they explain by the association sufferers of Cfs (Amcfs) .
“The seriousness of the pathology and its multiple repercussions, after decades of invisibility even with respect to other rare pathologies, have enjoyed discrete visibility with the advent of Covid and more precisely with the long covid considered, by international experts, to be comparable to the CFS- Me – they add – Both pathological conditions, in fact, are exacerbated by viral infections and present the same symptomatological procession. Such a disabling and impactful pathology, used as an example to explain the long covidin theory it deserves attention aimed above all at taking charge and managing everyday life but to date little has changed … patients continue to come across healthcare professionals who do not know the pathology or, worse still, do not consider it in all respects , belittling the patient’s suffering and making him feel “out of place and wrong”, a sensation unfortunately recognized by too many patients because it has already been experienced in the family, social, work and school environment, even heavier if triggered by health personnel”.
Because of this the association – which deals with family support and scientific dissemination – organizes two Ecm accredited events, one in September in Palermo and one in October in Venice The first on the debate on the causes and mechanisms of the phenomenon of molecular mimicry which could explain various pathologies such as Cfs/Me and the long covid which will see the members of the Scientific Committee of the association as speakers, together with local and foreign experts. The second will focus on the importance of physical examination, specifically the neurological one.
“Concrete actions that we believe are useful to illuminate the diagnostic process and the effective management of CFS/ME patients, to protect the patients, with the aim of reducing or containing the most disabling aspects of the disease”.