RubyJones, 2 months ago

@tomkindlon @mecfs #DecodeME is so important. I am so grateful I was able to contribute to a study that actually took a medical sample from me instead of only doing a survey asking about how I feel.

I have given so much information about how I feel and it's so rarely believed. I feel like if it were they wouldn't keep asking.

ahimsa_pdx, 2 months ago

@tomkindlon

Thanks for sharing - Jo's story is so relatable 😔

For example, the shower seat. I've had to use one of those since age 29 (helps decrease symptoms and reduces risk of fainting). I'm in my 60s now so that's more than 30 years.

I do feel lucky that I was able to find good doctors. I had to go through a lot of bad doctors to find them, though.

And I'm always happy to hear more about #DecodeME ❤️

@mecfs

#MEcfs #PwME #POTS #Dysautonomia