Sugar Bean

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

#MECFS #LongCovid #ChronicFatigueSyndrome #ME #PostViral #SevereME

You’re not stupid, you’re sick. Don’t let this illness make you feel bad about your cognitive ability.

#MECFS

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.

These guys are the real deal. Both are brilliant and have helped this community so much. Please consider donating to help further research for #MECFS ! What if Dr. Davis found the cure for this illness?

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.

If anyone tells you that in order to heal from MECFS you have to “believe you can” they’re selling bs. You’d be hard pressed to find a group of sufferers who have more resolve and desire to be healthy.

Thank you so so much for this!!!

a man wearing a santa hat with the words we 're all in this together below him ALT: a man wearing a santa hat with the words we 're all in this together below him

😔🫶💪💙

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

Surviving with us I guess

Me every year

#MECFS #SevereCFS

If I could be healthy I think I’d be sad at first because I’d finally be able to be in the world and see all the milestones I had missed.

I’ll never get them back.

#MECFS #SevereMECFS

I wanna run
I wanna go on hikes
I wanna shop all day
I wanna work and cook my dinner
I wanna make love
I wanna wear perfume
I wanna clean my house
I wanna do art and music all day
I wanna sleep and feel better

I wanna not have MECFS

I’m so sorry that you’re one of us

Ah yes, I finished my entire to-do list for the day, thank goodness. #MECFS #ME #CFS

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.

The amount of symptoms between LongCovid and MECFS are huge, to the point that many people (including myself) think they are basically the same illness. You would THINK that researchers would be looking at the MECFS data. But no, it’s the same studies, over and over.

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.

5/ No, I can’t join that virtual support group. Why? Listening to other people’s sad illness stories is too depressing and I can’t let myself get into that emotional state. And uh, lots of people don’t believe in ME/CFS or they give really shitty unwanted advice. Yes, I’ve tried Vitamin C 🙄

4/ Online friendships? I’ve found that they either are online because they need support themselves and can’t get it in person or they have no fucking clue how to do irl relationships. After multiple people burning me I won’t do that anymore. I just wanted friends, but ended up being the support.

3/ With last one I shared how an online friend lashed out and I was sad I had to cut her off and she basically told me I was wrong and that I didn't understand the conversation with my online friend. The one before would send me pics of her going hiking and at concerts- I’m bedridden you idiot wtf.

2/I’ve never talked with any therapist who really understood this illness, or chronic illness in general. They try to fix the problem instead of giving empathy. No thanks. It is now too exhausting and depressing to have to go through my medical story again and again with each new therapist.

The common ways of seeking support/connection don’t work for me as someone with long-term severe ME/CFS. Therapists, online friends, support groups, even the suicide hotline all didn’t work for me. I sure tried. What I know is that I’m on my own, and that’s just how it is. Here are my experiences👇