What it's like to have #MECFS, & also what the research looks like for MECFS. #pwME #millionsmissing

Two pieces of advice if you're being mobbed online and you're having difficult conversations: 1. Be careful about what you say; or what you have said in the past. And it may be too late for that. 2. If you haven't done anything wrong, do not apologise.

My 24 yr old daughter who has been suffering with #MECFS for yrs & #LongCovid for over a year just finished writing another post. It takes a great deal of energy & effort to write even a little. If you could take time to visit her blog I'd appreciate it the-elephant-in-the-room.com

My daughter is turning 26 on Sunday. She’s mostly bedridden; writing is becoming more difficult. She wrote this about her “life”. If you see this, thank you! the-elephant-in-the-room.com/2025/02/20/feb… #MECFS #pwME #LongCovid #POTS #Sjogrens #hEDS #chronicillness #chronicpain #invisibleillness

My daughter, who suffers daily and is bedridden from chronic illness, was able to write a little bit. It takes a lot of energy & effort to write even a little. If you are able to visit her blog, I'd appreciate it. the-elephant-in-the-room.com/2025/05/19/may… #MECFS #pwME #LongCovid #ChronicIllness