Maria Lopez Matallana is president of CONFESQ, the National Coalition of Fibromyalgia Entities, Chronic Fatigue Syndrome, Multiple Chemical Sensitivity and Electrosensitivity. Together with other patients with these pathologies, she has launched an initiative to inform about them.
CONFESQ is presenting a campus virtual intended for the training of socio-sanitary professionals in the pathologies represented, which is called CAMPUS CONFESQ.
This will also serve as a documentary, technical and scientific repository on these diseases. And it will collect conferences and training courses with speakers experts. I have asked you a few questions so that you can explain the initiative that can help so many people.
-Who has created this virtual campus for the training of healthcare professionals and because?
CONFESQ, which represents patient associations of the aforementioned pathologies of almost the entire national territory. We currently represent more than 11,000 patients directly. As you know, it’s about chronic diseasesvery disabling, without biomarkers and no known cure.
To this must be added a great ignorance by doctors and other healthcare professionals.
This causes first of all a delay in diagnosiswhich already influences a poor prognosis in the evolution of diseases.
On the other hand, denying the possibility of treatmenteven if it is palliative, neglecting some patients who can (and should) receive medical and social help.
This responds, in part, to the lack of knowledge that doctors and other socio-health professionals have about our diseases.
Furthermore, the information is scattered and difficult to select, even find. He Campus CONFESQ intends to answer this need to knowoffering in a virtual space
-What are the main goals of the same?
CAMPUS Confesq is intended for the formation of social health professionals in the pathologies represented through courses. It will also serve as a documentary, technical and scientific repository on them, as well as will collect conferences and training courses with specialized speakers.
-What are the first activities of the project?
We are working on three basic courses, online with which they present an overview of:
–Fibromyalgia.
-Advances in myalgic encephalomyelitis in the post-Covid era.
–environmental medicinemultiple chemical sensitivity and electrosensitivity.
Through the different courses, you can obtain a global vision of each disease, recommended diagnostic tests, how to diagnose it and make a good medical report, recommendable therapies and treatments, monitoring of patients and comorbidities associated with them.
-Who helps you and/or sponsors the initiative?
During 2021 and 2022 this project has received a grant from ONCE Foundation, which has allowed us to design and develop the training platform, as well as start preparing the courses. This year 2023 is receiving a grant from Ministry of Social Rights.
-Has the perception that society has of the SQM, FM, EM/SFC or electrosensitivity?
Each of these pathologies is at a different time. Fibromyalgia it is the best known and, within certain limits, the best attended within the health system.
Anna Tarazevich’s photo.
Still, the high medicalization of those affected and the absence of alternative treatments that allow pain to be addressed in a different way are the great defect of the health system.
Multiple Chemical Sensitivity It is the one that advances the fastest in terms of knowledge, more and more people “remember it” and in Spain we have achieved some progress promoted by patient associations, such as the hospital protocols that have been implemented in some autonomous communities.
Also that it appears in the latest documents published by the Institute of Safety at Work or that hospitals such as La Paz in Madrid have carried out various training courses with Alborada Foundation. There is still a long way to go and those affected continue to suffer greatly.
myalgic encephalomyelitis or Chronic Fatigue Syndrome She is a patient who continues to be highly stigmatized and, above all, stagnant, despite the advances in research and the political support received in the European Parliament.
Health services have not been updated and continue to minimize the disease and deny suitable treatments; This is more worrying if we take into account that it is estimated that 14% of the cases of Post-Covid Syndrome are drifting into ME/CFS.
Regarding electrosensitivity, the situation of the people who suffer from it is terrible: they have nowhere to live, they have no recognition or adaptations, their suffering is repeatedly denied.
From CONFESQ we work tirelessly so that these situations change and patients have better care.