Brazil: ME/CFS in Brazil

Pyrrhus

Senior Member
Messages
2,963
Likes
8,740
Location
U.S., Earth
SÍNDROME DA FADIGA CRÔNICA
https://sindromedafadigacronica.com.br/


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!
 
Last edited:

Pyrrhus

Senior Member
Messages
2,963
Likes
8,740
Location
U.S., Earth
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.
 

Pyrrhus

Senior Member
Messages
2,963
Likes
8,740
Location
U.S., Earth
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.

 
Messages
58
Likes
120
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

Administrator
Messages
1,707
Likes
6,894
Location
USA
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!