The municipality of Totana has returned to commemorate, as usual, the International Day of Fibromyalgia and Chronic Fatigue that was held yesterday May 12, with the reading of a manifesto and awareness actions in the mobile information point located in the Plaza de la Constitución.
The ASTOFIBROM Association of Totana has installed a Mobile Information Point in the Puerta del Ayuntamiento in which citizens have been informed about these diseases that every day suffer thousands of people in Spain.
The members, accompanied by the mayor, Andrés García Cánovas, and numerous councilors of the Municipal Corporation, have read the commemorative manifesto and have put on sale at the information point during this morning artisan products that allows them to self-finance.
The members of ASTOFIBROM have shown their satisfaction because in these almost three decades they have managed to single out the disease that today is considered a paradigm of chronic pain and to introduce it into the social, professional and political agendas.
MANIFESTO INTERNATIONAL DAY OF FIBROMYALGIA AND CHRONIC FATIGUE SYNDROME 2019
Today, on the World Day of Fibromyalgia and Chronic Fatigue Syndrome, we are going to talk about Pain and Fatigue twice as well as Regression.
In the first case, we talk about pain and fatigue from the physical point of view;
in the second, of pain and social fatigue, understanding as such the derivative of the interaction between the agents that make up society.
Finally, certain actions that tend to return these two diseases to the drawer of which it seemed that we had already left.
Let's go in parts: Who has not suffered, suffers or will suffer some episodes of pain or fatigue throughout his life?
Normally we think of pain and fatigue as symptoms or consequences of an illness, an accident, excessive physical exercise ... and, naturally, it is understood that circumscribed to a certain period of time and that they will disappear (or remain residual) with the cause that caused them.
This fact is reflected in comments such as "I also have pain" or "I am also tired", reducing the relevance of these symptoms.
It may be that most of the time it is not intended to bother or hurt sensitivities, but it should be understood that when we talk about Fibromyalgia and Chronic Fatigue Syndrome, Extreme Pain and Fatigue are not transitory symptoms of a disease, but rather are the themselves.
A Pain and Fatigue that never ceases, progressively diminishing physical, emotional and functional capacities over time since, currently, there is no cure.
But in Fibromyalgia and Chronic Fatigue Syndrome there is another Pain and another Fatigue.
The Fatigue of having to demonstrate every day, every day, that the physical suffering they involve is real, that conditions all of life, that truncate illusions, studies, professions, economic guarantees, personal, family or social relationships ...., Or the added pain, the result of insensitivity, misunderstanding, doubt, suspicion, mockery perhaps, that create more frustration in the attempt to maintain personal dignity to live with the true pain and fatigue that conditions our lives.
And we come to the third point: Regression.
For many years, and as a result of the efforts of the sick, family members, associations, professionals, researchers and, increasingly, some administrations, we have made progress in prevention, diagnosis, treatment, training, research, application of studies and classification criteria, etcetera.
Later, these two diseases were included in a larger group called Central Sensitization Syndromes, along with Multiple Chemical Sensitivity and Electrosensitivity, and many associations also embraced these two syndromes still poorly understood.
Now, and after so much effort to achieve the recognition of Fibromyalgia and Chronic Fatigue Syndrome in the Public Health System and achieved advances in recognition by the Public Social System, we put in the hands the entitled "Guide to update in the assessment of fibromyalgia, chronic fatigue syndrome, multiple chemical sensitivity, electrosensitivity and somatoform disorders "addressed to Primary Care Physicians of Public Health Centers and to be implemented throughout the State.
A guide that links Fibromyalgia, Chronic Fatigue Syndrome, Multiple Chemical Sensitivity and Electrosensitivity with an entity called "somatoform disorders" that belongs, in our opinion, to another group of diseases, specifically psychiatric ones.
In short, a guide that puts Fibromyalgia and Chronic Fatigue Syndrome back in the tailor's box of diverse etiologies that can create confusion for clinical professionals and, especially, for evaluators and, certainly, restlessness in patients.
When those who have competencies in health policies that affect the management, care, training, evaluation and assessment of social benefits ... publish a document that
* seems to link these diseases again to psychiatric ones;
* presents a manifest absence of clinical specialists, researchers and scientific societies that have dedicated their knowledge and experience in the prevention, diagnosis, treatment, research and training of these diseases;
* does not include the latest studies and experiences carried out and recognized internationally
* the patients themselves have not been consulted.
A red light is once again on fire and mobilizes the sick, associations, professionals, scientific societies, to prevent a serious mistake being made, with the consequent injustice, towards diseases that, little by little, were gaining the dignity and consideration that the sick deserve within the Public Health and Social System, and that professionals, researchers and scientific societies see their competence recognized.
Today and here we say, loudly, clearly and emphatically: ENOUGH.
We feel sore, we feel tired and we feel belittled.
We want to be able to direct our forces to fight against the diseases that affect us, not to fight against windmills that, it seems, go back to rebuilding each time we knock them down.