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“Please prevent thousands and thousands more people from developing ME” – Ivana, Brazil

I’ve always felt more tired than other people, but was led to believe for many years that this was laziness or depression. At some point in my life I had mononucleosis but we don’t know if it was that virus that triggered my ME. Around 2014 I had a gastrointestinal crisis that made my quality of life much worse. I was in bed for about 4 months, my heart rate was spiking to 160 when I stood up.  

I spent many years of my life battling health professionals who were not prepared to deal with ME/CFS. They always used random medications without ever reading up on the subject. Most of them disappeared during my crises and I ended up dealing with everything on my own, simply waiting for it to pass. Today I have a medical team that is interested in the subject, studies and researches it. They also work in an interdisciplinary way, which represents a major advance in the quality of care, from my perspective.

I’m in a period where I’m relatively stable, I can go out but I can’t stay too long because I get tired quickly in an upright position. When I’m at home, I spend most of my time in bed, but I’m not necessarily unable to produce. I finished another degree course at the end of last year.

It is extremely important that knowledge is disseminated because the Brazilian community knows nothing about the subject. I recently had a meeting with the Ministry of Health, which told us that it had nothing on the subject in its database. It’s desperate to think about the number of patients who are helpless in Brazil. I’m proud that I’m still able to fight for their rights, even though the struggle is thankless and often frustrating. 

It’s not easy to respect my body’s limits, without demanding greater productivity and results from myself. This is a daily process with countless relapses, but it’s the only thing that keeps me going.

Perhaps it’s really difficult to understand the complexity and extent of the damage caused by Myalgic Encephalomyelitis when you haven’t experienced it yourself. But as a #GlobalVoiceForME, I hope the world’s health authorities realise this in time to prevent thousands and thousands more people from developing it.

#GlobalVoiceForME Ivana Andrade

To answer the questions took Ivana a whole day because she kept having to stop to lie down.