Brazil: ME/CFS in Brazil

[Pyrrhus]

SÍNDROME DA FADIGA CRÔNICA
https://sindromedafadigacronica.com.br/

https://twitter.com/i/web/status/1361832531436445700

We are a heterogeneous international Lusophone group of volunteers (with ME/CFS, caregivers, health professionals and others) committed to the mission of disseminating, through this website, information on Myalgic Encephalomyelitis, also known as Chronic Fatigue Syndrome. This initiative aims to bring to light this little-known and under-diagnosed condition. We believe that, thus, it is possible, through theoretical and experiential support, to contribute with health professionals who are interested in this cause, and to improve the quality of life of the many individuals who suffer from this pathology capable of limiting or even drastically reducing the physical and / or mental capacity of its carriers.

However, we are only meeting for this herculean task thanks to the emergence of the first Brazilian channel on YouTube about ME/CFS (conceived by an oncologist with the syndrome, Dr. João Paulo Calife Vernieri), which in turn served as inspiration for the creation of a WhatsApp group established on April 29, 2018 (of which we are members and where we meet). Its creators, psychologist Graziela Domini Peixoto and professor Vitória da Silveira Martins (also, carriers of ME) were eager to found the first Brazilian organization focused on Myalgic Encephalomyelitis. Although this noble project has not yet taken effect, the group they created continued their activities and ended up becoming a “safe haven” for individuals affected by CFS. Among the first members of this community, the following should be highlighted: Fernando Araújo, Márcia Siqueira, Cláudia Musso,

Anyway, now that our origin, mission and history are already known, we, the creators and maintainers of this site:
Ádilon Ferraz Ribeiro (text reviewer);
Denise Dornelas (collaborator);
Jeferson de Andrade (editor and technical writer);
Joan Serra Hoffman (general translator and collaborator from Portugal);
Malena Locci Marafanti (collaborator);
Valéria Palma (advertising and marketing consultant) and
Vinicius Olenka (editor and technical writer)
we wish you to be welcome!

 

[Rebeccare]

@Gala Gi , I see that you just joined us from Brazil. This might interest you!

 

[Pyrrhus]

Comment from a Brazilian in another thread:

There's no speccialists here. They don't deal with any of the symptoms except pain.
They're in fact pain doctors (and call themselves that). They only adress the cause in anti depressants and if it doesnt' work then they push you away the fastest they can.

 

[lauluce]

Comment from a Brazilian in another thread:

same than in Argentina. By the way, if you call the illness "chronic fatigue syndrome" that wont be a good start for the site, that name is basically a misleading euphemism

 

[Pyrrhus]

Okay, this is a piece of art that really showcases Brazilian creativity.

It is narrated by ME/CFS itself, as ME/CFS laughs at the doctors and patients who try to come to terms with ME/CFS's tricky ways.

And, of course, there's dancing.

 

[marcjf]

As a Brazilian, I wish ME had a bigger support network there.
ME/CFS research is pretty much non-existent in Brazil, and I believe doctors do not have much to offer, you will not find true specialists.

And even organized patient groups are hard to find. Those that exist are usually very tiny, and not helpful. You get the impression that it is a very rare disease there, which I find hard to believe given the recurrent outbreaks of Zika, Dengue and other tropical diseases. I thought that maybe Covid would change that, but it did not.

Thankfully I no longer live there. Not that other countries are doing an outstanding job with ME/CFS, but Brazil is at the very bottom.

 

[Diwi9]

Okay, this is a piece of art that really showcases Brazilian creativity.

It is narrated by ME/CFS itself, as ME/CFS laughs at the doctors and patients who try to come to terms with ME/CFS's tricky ways.

And, of course, there's dancing.

This is excellent. Thank you so much for sharing. I hope more folks watch it!

 

[Pyrrhus]

SÍNDROME DA FADIGA CRÔNICA
https://sindromedafadigacronica.com.br/

Great news!
The patient advocacy group Sindrome Da Fadica Cronica has gotten a law passed in the capital city of Brasilia:
http://www.sinj.df.gov.br/sinj/Norma/459f3cb9afb14e54a9a84aa5cc8f1791/Lei_6921_28_07_2021.html

LAW No. 6921 OF JULY 28, 2021
[...]
Establishes the District Policy for Comprehensive Care for Persons with Chronic Fatigue Syndrome or Myalgic Encephalomyelitis – CFS/EM.
[...]
For the purpose of this Law, chronic fatigue syndrome is understood to be a disease characterized by post-exertion malaise, non-restorative sleep, generalized pain, sensitivity to light, sound and chemical agents, sore throat, sensitive lymph nodes, pain headache and gastrointestinal or urogenital system problems.
[...]
The objectives of the policy established by this Law are, in particular:

I – develop adequate and continuous diagnosis and comprehensive treatment actions, improving the quality of life of people with the disease;

II – expand the access of people with chronic fatigue syndrome, qualifying care in the Unified Health System – SUS for this group;

III – offer medicines, guaranteeing qualified treatment and the well-being of patients;

IV – include laboratory tests that do not exist in the network, according to new research, to assist in the diagnosis and treatment of chronic fatigue syndrome;

V – carry out publicity and clarification campaigns, especially among women, who are more affected than men;

VI – train health teams, family members and the entire social network of people with chronic fatigue syndrome, through permanent education activities;

VII – promote studies and research on chronic fatigue syndrome, especially with new medications;

VIII – promote the acquisition of up-to-date technological equipment, which are essential for medical assistance, for the diagnosis of chronic fatigue syndrome;

IX – encourage the exchange of information and experience between health professionals and patients;

X – establish partnerships with public and private entities to improve the development of actions for the diagnosis and treatment of chronic fatigue syndrome.

 

[Pyrrhus]

Great news!
The patient advocacy group Sindrome Da Fadica Cronica has gotten a law passed in the capital city of Brasilia:
http://www.sinj.df.gov.br/sinj/Norma/459f3cb9afb14e54a9a84aa5cc8f1791/Lei_6921_28_07_2021.html

Now the patient advocacy group Sindrome Da Fadica Cronica is sponsoring a state-level law in the state of Goiás, which surrounds the capital city:

https://twitter.com/i/web/status/1519047347350687744

EDIT: Opinion poll on this proposed law is looking pretty good so far:
https://opine.al.go.leg.br/proposicoes/2022001533

 

[lauluce]

Great news!
The patient advocacy group Sindrome Da Fadica Cronica has gotten a law passed in the capital city of Brasilia:
http://www.sinj.df.gov.br/sinj/Norma/459f3cb9afb14e54a9a84aa5cc8f1791/Lei_6921_28_07_2021.html

beautiful! congratulations! I wished we could finally do the same ere in Argentina

 

[fullofdetermination]

Does anyone know a ME/CFS wise doctor in Brazil?