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Dolphin

Senior Member (Voting Rights)
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Fibromyalgia and CFS in the Brazilian Parliament


From: Dr. Marc-Alexander Fluks
Subject: ME/FM in Brazilian parliament



Source: Play Crazy Game (Brazil)
Date: March 28, 2022
URL:
https://playcrazygame.com/2022/03/2...yalgia-by-sus-this-wednesday-senado-noticias/
Ref: https://www.camara.leg.br/deputados/160575
https://www2.camara.leg.br/english
https://en.wikipedia.org/wiki/Chamber_of_Deputies_(Brazil)


Plenary evaluates offer of medicine for fibromyalgia by SUS
this Wednesday – Senado Noticias
-----------------------------------------------------------
The Senate Plenary deliberates this Wednesday (30), from 4 pm, on a bill
that determines the supply of medicines and treatment with a
nutritionist by the Unified Health System (SUS) to people with
fibromyalgia and chronic fatigue.

PL 3,525/2019, authored by federal deputy Erika Kokay (PT-DF), had a
favorable report from Senator Sergio Petecao (PSD-AC) in the Social
Affairs Committee (CAS) and by Senator Angelo Coronel (PSD-BA) in the
Committee on Economic Affairs (CAE).

Currently, people with fibromyalgia or chronic fatigue are entitled to
receive comprehensive care through the SUS (including multidisciplinary
treatment in the areas of medicine, psychology and physiotherapy) and
access to complementary exams and recognized therapies, including
physiotherapy and physical activity.

Fibromyalgia is a syndrome of unknown causes, characterized by
generalized, chronic muscle pain, which can last more than three months,
accompanied by sleep problems and tiredness. Chronic fatigue syndrome is
identified by intense tiredness with physical or mental activity, but
without improvement with rest, and can also cause headaches, throat,
muscle and joints, ganglia and difficulty concentrating.
 
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"We are pleased to welcome #MillionsMissing Aliança, which brings #MECFS groups and individuals from #Portugal & #Brazil together. It aims to expand to the entire Portuguese-speaking community."

"#MillionsMissing Aliança has a public facebook group for the moment. Join it! facebook.com/groups/5780817… We'll share them when they are on Twitter. Their priorities: 1. Raise awareness about #MECFS through (social) media and events. 2. Make the community of Portuguese-"

"speaking patients visible, with physical or virtual support groups. Cooperate with other organizations. 3. Promote medical education for healthcare providers; provide resources in Portuguese. 4. Call on public authorities to make clear commitments to #MECFS patients."

Quotes from Twitter thread from Millions Missing France
Click to expand...

 
Women with chronic fatigue syndrome suffer prejudice at work and in social life...Published on Publica in April 2024 by Paula Passos.

Eloara Campos*, a professor of pulmonology at the Federal University of São Paulo (Unifesp), explains that many patients with the syndrome end up receiving diagnoses of depression and anxiety. “After all, there is no way a patient with a chronic disease will not develop some anxiety or depression. Sometimes anxiety is a consequence, because the person has spent so many years looking for doctors, specialists, and tests and never received an answer.”
Click to expand...

Campos began studying the disease diligently during the COVID-19 pandemic , after receiving patients who had improved their respiratory symptoms and lung complaints, but still suffered from fatigue. The Unifesp professor explains that around 25% of patients with the syndrome are bedridden and 50% are no longer able to have a work and social life as before ; many even stop working.
Click to expand...

In 2014, 12 years after having been to a doctor's office, Andrade gave up on seeking professional help and continued taking the medication she was already taking. “I couldn't afford to go to the doctor and get insulted, so I decided to research and spread the word about the disease,” she said. On her Instagram account , she posts moments of meetings with politicians, seeking answers from the government that can help people with the syndrome.
Click to expand...

Bill seeks to create a national policy for care for 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 composed of professionals in the areas of medicine, psychology, nutrition and physiotherapy”. However, it does not include aspects related to social security.

Bill No. 2,812/21 is broader. It provides for the creation of a policy to assist people with the syndrome , as well as “sickness benefits and/or disability retirement benefits and exemption from the waiting period.” The bill, authored by federal deputy Erika Kokay (PT-DF), was drafted with the help of Ivana Andrade and other patients. It has been awaiting an opinion from the Health Committee in the Chamber of Deputies since June of last year. According to Kokay, approval of the bill will help define “protocols and guidelines for treatment and will allow for the establishment of partnerships and agreements, promoting campaigns and establishing an integrated information system for a better understanding of the specificities of myalgic encephalomyelitis.”
Click to expand...

Edit to add: another news article on this topic, in Portugese.
 
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A message I received from Andrade (mentioned above) which I have permission to share, translated using google translate:

I started doing advocacy because here people don't believe in the disease, they tell us to do exercises and diagnose psychiatric disorders. In this search for answers I began to understand that until I started sharing information about the disease, reality would not change for me or other patients. Furthermore, I finished my degree in psychology and today I am studying a master's degree in health science with the few doctors who believe in the disease in Brazil. We intend to carry out an epidemiological study of the disease (this is my master's project). The only epidemiological study we have here in Brazil is from 2009 [thread] with outdated criteria. My advisors are Dr Rudolf Oliveira and Dr Eloara Campos. Dr Rudolf did his PhD at Harvard with Dr David Systrom.

In Brazil, in general, the tendency is to not even consider this diagnosis. The vast majority of these patients are lost and undiagnosed. Some patients discover the diagnosis on their own. Most health professionals have never heard of the topic and those who have heard disbelieve it. There is no guideline and treatment protocol in Brazil (we are fighting for one) We managed to pass some laws in some states that institute public policies for Myalgic Encephalomyelitis But despite having been approved, they have not yet been put into practice.

The federal law has not yet been approved by all committees, it is in process. It is more difficult to pass a federal law than a state one.

Even if we had a guideline and treatment protocol in Brazil, I don't know if it would be of much use because for a protocol to be functional, professionals would need to know about the existence of the disease and consider it.
 
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On Long Covid specifically in Brazil:

Prevalence of and risk factors for post-COVID: Results from a survey of 6,958 patients from Brazil, 2023, Talhari et al (https://www.scielo.br/j/aabc/a/FkXwqrXRTcxnmfYj6grHpyt/#)

WCN24-760 RENAL ASSESSMENT IN POST-COVID-19 RECOVERY PATIENTS: A COHORT STUDY AT AN OUTPATIENT NEPHROLOGY CLINIC, 2024, Gomes Rioja & Suassuna (https://www.kireports.org/article/S2468-0249(24)00507-2/fulltext)

On Long Covid, studies from Brazil:

Persistence of symptoms and lung function in mild cases of COVID-19 six months after infection: a cross-sectional study, 2024, Sousa et al (https://www.jornaldepneumologia.com.br/details/3924/en-US)

Role of the one-minute sit-to-stand test in the diagnosis of post COVID-19 condition: a prospective cohort study, 2023, Faria et al (https://www.jornaldepneumologia.com.br/details/3825/en-US)

Predictors of reduced incremental shuttle walk test performance in patients with long post-COVID-19, 2023, Sahin Satar & Ergün (https://www.jornaldepneumologia.com.br/details/3914/en-US)

Exercise intolerance in post-COVID19 survivors after hospitalization, 2023, Lafetá (https://pubmed.ncbi.nlm.nih.gov/37228270/)

Prediction models for physical function in COVID-19 survivors, 2024, Vieira et al (https://pubmed.ncbi.nlm.nih.gov/38432844/) Paywall
 
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