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“I miss the real Priscilla, who loves to dance” – Priscilla, Brazil

I’ve always had a very fragile immune system, so my illness is probably post-viral. I feel like I only have 10-20% of the energy capacity I had before I got sick.

If doctors were trained to deal with ME/CFS, I could certainly have a much better quality of life and a greater chance of not feeling alone with my symptoms. I would not fear the stigma, underestimation and disbelief, which are still so common among doctors in Brazil. 

Once the existence of this condition is acknowledged worldwide, there will be greater awareness and acceptance of ME/CFS as a legitimate health concern rather than a figment of imagination. 

I still mourn everything I once had before falling ill. Especially my career and autonomy. I miss going out with friends and family celebrations. I miss the real Priscilla, who loves to travel, dance and to enjoy the carnival.

However, I am proud of the person I have become since acknowledging the diagnosis. Even before I knew it and only experienced its symptoms, I felt determined not to give up under any circumstance. Now, I strive to educate people about ME/CFS and its potential impact on every aspect of life.

If a cure were to be found, I would surely travel, party, and finally feel free from all the fear, pain, and doubts about my future and life in general. I would experience nothing but happiness and relief.

If you’re healthy, live every day to make it worth it. When your body simply doesn’t work properly, you lose so much—things you could never imagine. Also, be an ally who will help validate our feelings and pain, both physical and emotional. Unnecessary opinions and disbelief only make us sadder and hopeless.

As a #GlobalVoiceForME, I’d like to say to the world’s health authorities: Please, help us. Please, believe us. Please collaborate with our recovery, so we can be productive again.

#GlobalVoiceForME Priscilla Falcão

To answer the questions took Priscilla two days – one to understand and write answers and another to review. And it felt so exhausting, she had to pause several times to recover before continuing.