Yeah you never know which will give out first, the body or the brain.

We don’t either Rylee. It’s a mystery to us too & it involves constantly listening to our bodies and readjusting our strategies and hopes. I’ve had MECFS for almost 20 years and the way I have to treat my body can change day by day. You’re not alone in feeling that this illness is confusing as hell.

Thank you for posting Tom

All the way off! I’m with you, chronic cousin.

SCIENCE will set us free from this MECFS hell, NOT wishful thinking. If that were the case no one would be sick with this illness.

Thank you so so much for this!!!

😔🫶💪💙

I had to cut off or was dropped by family due to MECFS. I feel you.

Surviving with us I guess

I’m so sorry that you’re one of us

Doctors really really need to differentiate these two, and approach researching the recovery tools of each type of LongCovid differently. Both groups seem to be suffering from this, to the detriment of the patients involved.

I’ve seen that there there may be two groups of our LongCovid brethren, those who seem to have matching symptoms of MECFS, and those whose organs (heart, lungs, vascular, nerve, etc.) have been damaged from the Covid virus.

8/ I don’t know where to leave this except that my situation is what it is, because for me, that is all it can be. Nothing I can do about it but do the best I can I guess.

7/ For each of these situations I have to say no again and again to any “suggestions”, then tell people why all their methods won’t and haven’t worked. People don’t like this. After they run out of ideas they check out and I’m left battle scarred from being vulnerable and getting nothing in return.

6/ I’ve even tried texting the suicide number 988 when I was really in a bad state. They were kind, but suggested a Christian 12-step pain group and another random pain group which isn’t run by a therapist. I needed empathy and a listening ear THEN, not suggestions for later. And I’m not Christian.