The National Coalition of Fibromyalgia, Chronic Fatigue Syndrome, Multiple Chemical Sensitivity, and Electrohypersensitivity (CONFESQ) has launched a series of screenings of the documentary "Severe Myalgic Encephalomyelitis: Voices in the Shadows," with which it claims that affected individuals should have access to Palliative Care in their own homes.
"Living with severe myalgic encephalomyelitis is living calculating the cost of every small gesture," explained the spokesperson for this organization, Isabel Calvo Sobrino, who added that this "is a disease that profoundly incapacitates, but whose greatest tragedy is that the suffering occurs, to a large extent, out of sight of everyone."
To give visibility to this situation, CONFESQ has articulated an initiative backed by the associations of Chronic Fatigue Syndrome and Multiple Chemical Sensitivity of the Valencian Community (SFC-SQM Valencia) and Madrid (SFC-SQM Madrid). The proposal, which also has the support of the Valencia City Council and the Municipal Board of Retiro in Madrid, materializes in a tour of public screenings of the documentary.
Invisibility and the need for palliative care
The purpose of these screenings is to raise awareness about a disease that, in its general form, affects more than a million people in Spain. "Of them, about 300,000 would present severe forms and around 15,000 would be in a very severe situation," Calvo Sobrino reported, emphasizing that, despite these figures, "the disease continues to be one of the great invisibles both for the healthcare system and for society."
As she detailed, "severe myalgic encephalomyelitis is a chronic neuroimmunological disease that affects multiple systems of the body and can confine those who suffer from it in their homes and even in a room for years." Therefore, she insists on the importance of Palliative Care to "relieve suffering and improve the quality of life of people with incurable diseases that present a high symptom burden."
Through the testimonies collected in the documentary, in which sick individuals and healthcare professionals participate, it aims to show the impact of the most disabling forms of this pathology and provide a sensitization tool that contributes to greater healthcare and social recognition of this reality.