THEMay 12th is the World Fibromyalgia Day, a very widespread disease but in some ways still little known. It is in fact a disabling disease, which can be managed but for which there is currently no cure.
Fibromyalgia: women are more affected
According to the estimates ofItalian Association of Fibromyalgia Syndromethe pathology affects about 1.5-2 million Italians, in almost all cases, women. Since 1992 the fibromyalgia syndrome has been recognized by the World Health Organization (WHO), with the so-called Copenhagen Declaration, yet even today in Italy the pathology is not legally recognized as a disabling disease. Those who suffer from it are therefore often deprived of protection. To understand what is fibromyalgiawith what symptoms manifests itself and what are the care available today, we have asked a few questions to an expert.
Fibromyalgia: what is it all about?
“Fibromyalgia is a fairly common disease that affects around 2% of the general population. – explains Doctor Giulio Cavalli, immuno-rheumatologistresponsible fibromyalgia clinic at the IRCCS San Raffaele Hospital and scientist in the field of inflammation – widespread cause chronic musculo-skeletal pain, tiredness, fatigue, insomnia or sleep disturbances, headache. But also difficulties in activities that require effort concentration and memoryabdominal and digestive disorders, in addition to altered moodwith traits of an anxious or depressive type ».
What are the causes of fibromyalgia?
«The causes are not yet known. – explains the expert – But we know that it is a disorder that appears often after periods or episodes that are somewhat stressfulfrom a point of view physicistfor example after an illness, but also psychological, following bereavement, abuse or trauma of various kinds. Today it is thought that it may depend on one reduction of the pain threshold at the brain level. This means in patients suffering from fibromyalgia the brain activates a sensation of pain even in the face of very reduced stimuli. It is as if the brain were amplifying a harmless stimulus coming from peripheral tissues ».
A diagnosis that is not always easy
It goes without saying that being able to frame a disease of this type can be complex, also because the symptoms reported by patients are common to other pathologies. So how is fibromyalgia diagnosed? «The diagnosis is mainly based on the recognition of the clinical picture and on physical examination. – explains Dr. Cavalli – It is important that the doctor has experience with this type of pathology, otherwise it may be more difficult to recognize the picture “
There are no specific tests
«A further complication is given by the fact that there are no specific diagnostic tests, such as blood tests or radiological tests, which can document some specific abnormality and which suggest fibromyalgia. – underlines the expert – Since it is a problem of amplification of the painful stimulus, in fact, there is no damage to the tissues that can be documented with tests. However, sometimes the blood tests or radiological investigations they are useful for exclude other organic pathologies which can present with symptoms similar to those of fibromyalgia “.
What are the treatments to date?
“There are no specific drugs currently developed specifically for fibromyalgia. – replies Dr. Cavalli – We therefore use drugs developed and approved to treat other conditions and which have shown a certain degree of effectiveness in the treatment of fibromyalgia. Among the most used drugs on the front line, there are some antidepressants and some antiepileptics ».
Fibromyalgia and medical cannabis
Fibromyalgia is also one of the pathologies for which the Medical cannabis according to the DM 9/11/2015. “Yes, it is one second level therapy – explains Dr. Cavalli – or that it can be prescribed as an alternative or in addition to conventional therapy when this has not brought the desired benefits or has not been sufficiently tolerated by the patient. The use of cannabinoids, administered orallyis normally well tolerated and in some cases it allows to obtain an improvement of the symptoms ».
Medical cannabis: the situation in Italy
However, that of medical cannabis remains an open problem in Italy. In fact, it is estimated that there are thousands of patients who they have difficulty finding this type of product in pharmacies. Products that, according to the indications of the Ministry of Healthare masterful preparations produced directly by the pharmacist.
“Today we are using cannabis in a galenic way – had recently declared Marco Bertolotto, Director of the pain therapy center ASL 2 Liguria and Clinical Director of Clinn Health & Innovation – I can say that we are a moment before the pioneers, we are far behind Western medicine. We will make the real leap when we move from the artisanal form of extracts made in pharmacies to extracts made at an industrial and pharmaceutical level “. It is therefore not surprising that, according to a recent online survey, carried out by Medical Cannabis Patients Committee, 74% of respondents found it difficult to find medical cannabis prescribed by their doctor.
The case of a patient with fibromyalgia
At the center of the news, recently, the case of Cristian Filippo, 25 years old suffering from fibromyalgia, accused of growing two cannabis plants which he used to soothe the pains caused by the disease. The young man, now followed by the Meglio Legale association and byLuca Coscioni Association, whose leader is Marco Cappato, he had started a small domestic cultivation because he could not receive the medicine through the Regional Health System. Calabria, in fact, is one of the three Italian regions (together with Molise and Valle D’Aosta) that do not have a regional decree to implement the directives of the Ministry of Health which provide for the possibility of being treated with this type of therapy. Cristian Filippo was thus accused of illicit cultivation and possession of a narcotic substance for transfer to third parties (tr the elements that led to the hypothesis of drug dealing, it was highlighted the state of unemployment of the boy who, according to the accusation, would not have allowed him to procure the necessary for cultivation. Justifiable, according to this reconstruction, only through the transfer to third parties). THEn waiting for the next hearing set for September, Cristian Filippo faces up to 6 years in prison.
The Fibromyalgia Bill
To the difficulty of accessing care, for patients there is often the problem of lack of a law in Italy that recognize fibromyalgia as a disabling disease. The Bill n. 299, “Provisions in favor of people with fibromyalgia”, born on the proposal of Paola Boldrini and Dario Parrini and presented on 30 April 2018, has the objective of filling this gap. However, pending due to the pandemic, the proposal is still in place today continuing its parliamentary process.
Why recognition is important
“The approval of that bill would be essential – he declares Giusy Fabio, Vice President of the Italian Fibromyalgia Syndrome Association – also because it provides, among other things, the creation of centers of reference, the development of teleworking, which is very important for us patients because working from home could be a very valuable help. In addition to supporting the fibromyalgia registry and also training general practitioners. In this way the patient could be followed by his own doctor, without always having to go to a specialist ».
Inclusion in the LEA
In addition to a law that can protect patients, the hope is also that fibromyalgia may fall within the so-called LEA (Essential Levels of Assistance), i.e. all the services and services that the National Health System is required to provide to all citizens, free of charge or upon payment of a ticket. Fibromyalgia is currently not eligible for any exemption codes but some patient organizations, including theItalian Association of Fibromyalgia Syndrome they are doing promoters of initiatives aimed at recognizing the disease by the Ministry of Health.
A first recognition
A first step forward in this direction was taken by Budget Law which has allocated a fund of five million euros for “the study, diagnosis and treatment” of this chronic and disabling rheumatic pathology. Good news that seems to be only partial to date. “After several months from the approval of the provision, in fact, everything is still standing – specifies the Vice President of the Italian Association of Fibromyalgia Syndrome – at the moment the criteria, methods and timing of assignment are not known of these resources “.
The appeal of the associations
“Not only that, in the meantime a problem has also arisen regarding the inclusion of the disease in the LEA – continues Giusy Fabio – from unofficial rumors we know that the Commission has given a favorable opinion and that it intends to include fibromyalgia in the Essential Levels of Assistance but from mid-January the Tariff Decree, which could actually allow the LEA to be updated, is blocked in the State-Regions Conference. We as an Association we are therefore fighting both so that the funds established by the Budget Law for fibromyalgia are used and not lost, and so that the situation of the Tariffs Decree can be unblocked ».
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The first Italian register
The work carried out by the company has also been decisive in recent years Italian Society of Rheumatology which, with the patronage of the Ministry of Health, created the first Italian registry for fibromyalgia. A strategic project that allows research in the field of disease and promotes the development of precision medicine in this area. With the aim of finally improving the diagnostic-therapeutic process and promoting a personalized approach to patients.
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