Women with chronic fatigue syndrome suffer prejudice at work and in social life
In Brazil, the Ministry of Health does not have data on how many people live with ME, although a study by the Institute of Biomedical Sciences of the University of São Paulo (ICB-USP), published in the journal Frontiers in Immunology in 2022, links the disease with the pandemic. The researchers showed that the condition was observed in around 10% to 20% of people who were cured of Covid-19 but continued to have symptoms. Of the 80 patients participating in the USP research who had Covid-19, half developed chronic fatigue syndrome. Last year, a study published by the same researchers estimated that 13% to 45% of patients who contracted the virus could develop the disease.
Chronic fatigue syndrome is a disease that still has no cure. Symptoms appear, in more than 80% of cases, after a viral infection, being three times more common in the female population. Another alarming fact is that 91% of people affected in the United States are misdiagnosed with other conditions, such as depression.
The lack of information has exposed patients to stigmatization both in the job market and in their personal lives. It is common for symptoms to be minimized or related to psychological issues.
Professor of pulmonology at the Federal University of São Paulo (Unifesp) Eloara Campos explains that many patients with the syndrome end up receiving diagnoses of depression and anxiety. “Especially because there is no way a patient with a chronic illness will not develop some anxiety or depression. Sometimes anxiety is a consequence, because the person has spent so many years going to doctors, specialists, exams and never had an answer.”
Photographer Ivana Andrade, 34, left the profession in 2014 because it was too demanding on her body. Her symptoms began when she was still a teenager, at the age of 12: “I felt a lot of tiredness in the trunk area, in my neck, but I was still able to carry out my daily activities”, she recalls. At the time, doctors said that Ivana had depression and anxiety and, until she was 24, she was treated as if she had these illnesses. Until the symptoms got worse.
The young woman spent four months in bed, until a neurologist diagnosed chronic fatigue syndrome. In her case, the cause may have been the Epstein-Barr virus, which is related to mononucleosis. In 2014, 12 years after attending clinics, Andrade gave up seeking professional help and continued with the medication she was already taking. “I couldn’t afford to go to the doctor to be insulted, so I decided to research and publicize the disease,” she said. On her Instagram account , she posts moments of meetings with politicians, looking for answers from public authorities that can support people with the syndrome.
Law No. 14,705/23 establishes guidelines for the care provided by the SUS to people with Fibromyalgia Syndrome or Chronic Fatigue. The text determines, for example, access to “multidisciplinary care by a team made up of professionals from the areas of medicine, psychology, nutrition and physiotherapy”. But it does not include social security aspects.
Bill No. 2,812/21 is broader. It envisages the creation of an assistance policy for those with the syndrome and also “sickness benefits and/or disability retirement and exemption from the waiting period”. The project, authored by federal deputy Erika Kokay (PT-DF), was articulated with the help of Ivana Andrade and other patients.
Approval of the project will help define “protocols and guidelines for treatment and will allow the signing of partnerships and agreements, promoting campaigns and establishing an integrated information system for a better understanding of the specificities of myalgic encephalomyelitis.”
Andrade also helped to develop another proposition such as PL 121/22 , in Goiás. In São Paulo, PL 233/2022 attempts to establish state policies for care for people with the syndrome. Both are still in progress.
While her rights do not advance in the Legislature, she claims that the limitations of the disease place her in a situation of financial dependence. The photographer relies on her mother’s support to support herself. “Since I quit my job, I haven’t been able to earn an income to support myself.”
Paula Passos
Taken from the source in NEXO
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