Discussion in 'Regional News' started by Andy, Apr 13, 2021.
A thread for general news, events, articles etc from Italy.
Relying totally on Google Translate for the English version of this, which will explain the quirks in the translation.
HEARING OF THE FIFTH HEALTH COMMITTEE
APRIL 8, 2021
✅Maria Pia Cavalet for the sick #MeCfs
I thank the Fifth Health Commission, President Brescacin Sonia and all the Councilors in the Veneto Regional Council
Today I had the opportunity to have HEARING in the Veneto Region about our disease ME CFS, Myalgic Encephalomyelitis, Chronic Fatigue Syndrome
Doctor Caterina Zilli was able to intervene with me and illustrated in a scientific way the pathology, the health situation and the progressive disability of the patients. She also highlighted the needs to be met from a medical point of view.
The topics addressed were many starting from the legislative question.
I asked to know the reasons for the non-application of the Regional Law n. 6 of 2015 art. 27, and to know the state of the art of the State Bill No. 49 Act of the Chamber 2076 of which the first signatory is Dr. Alberto Villanova.
I pointed out the need for a circular to be promulgated at the regional level that gives officiality and identity to the disease for the purpose of recognizing the invalidity by INPS.
I asked for protection for sick young people who are facing numerous difficulties in attending school. Students of all orders and degrees need first of all an ad hoc path and programming, support included.
I asked that the Veneto Region become a promoter at the Miur so that the problem is studied and resolved, in order to avoid school dropout.
For adult patients I asked for protection in the world of work, which must take into account the acquired disability that becomes progressively more and more serious over the years.
I asked to have the institutions, our region and more on our side. Because neither the sick nor the caregivers can remain alone in this battle of civilization, of rights ... which includes the recognition of the pathology by law, the right to Lea, at minimum levels of public health assistance and public social assistance.
There were interventions by the Directors to ask for further information on what was exposed. Particular interest was aroused in identifying the needs of the sick and their families.
Today was an important moment of confrontation.
The interest expressed by the Directors through the requests for further information bodes well, so I hope that there will soon be developments in this regard.
I continue to keep the attention high also at the national level, sure that sooner or later we will be able to have recognition, care and assistance
Maria Pia Cavalet
Former Vice President of AMCFS Pavia
Founder and former President of CFS / ME OdV
Already spokesman, even before the Lockdown, at the institutions in Rome such as Ministry of Health, Senate, Cittadinanzattiva, Parliament, Istituto Superiore di Sanità also for the OTHER Associations present on the Italian territory.
@Giada Da Ros
A new ME/CFS documentary, that premieres today on the German/French TV channel ARTE has Italian subtitles.
Also available online: https://www.arte.tv/de/videos/096283-000-A/die-raetselhafte-krankheit-leben-mit-me-cfs
ETA: With three pwME, one pwLC and researchers Scheibenbogen, Behrends, Prusty, Fluge and Mella.
Separate names with a comma.