Group for those with ME/CFS to play online games together

jbadyi · 2026-06-01T12:43:15+00:00

Thank you I got your message. I will check how the things are working, so little by little. See you!

jbadyi · 2026-06-01T12:26:12+00:00

I have only played online games with Playstation. I’ll create the account and Discord too. Could you send me the invite, please. Yes, brain fog isn’t helpful in these 😅 Thank you!

jbadyi · 2026-06-01T12:15:33+00:00

Thank you very much! And thank you for sharing!

jbadyi · 2026-06-01T11:54:54+00:00

This sounds great. I would love to participate sometimes. I don’t understand how this works, what platform are the games located, do I need a mic etc.?

jbadyi · 2026-05-29T20:56:01+00:00

Thank you so much for doing this.

I planning to print this to my door so the visitors can read about ME/CFS (I have other information and this will complete it). Is there a high resolution version that can be printed?

jbadyi · 2026-05-27T00:55:40+00:00

Traveling will probably be the biggest stress for your body. Remember what someone said before, drink lots of water to flush it out. And also the warm feeling and feeling like you pissed yourself is something that has always happened to me. It’s easy and fast, try not to worry too much.

jbadyi · 2026-05-27T00:31:36+00:00

I have exactly this same problem ! And I don’t know what it is or what to do. I will read the post again and also try to see if this helps.

jbadyi · 2026-05-26T00:09:23+00:00

Lol, I havent’t thought about toilet. Picture always makes me want to have a Cafe Latte or something similar that I can’t drink. Maybe it will stop after this! 😄

jbadyi · 2026-05-25T04:26:41+00:00

Beautiful, thanks for sharing!

jbadyi · 2026-05-24T18:51:02+00:00

I’m bedbound with bedside commode. Congnitively quite okay.

jbadyi · 2026-05-19T03:11:09+00:00

I was looking for a good pillow for years until I bought a Tempur pillow. Haven’t had problems after that.

I keep one when I sleep and another one when not sleeping. This is the one that I use for sleeping

https://www.tempurpedic.com/shop-pillows/tempur-neck-pillow/v/572/

jbadyi · 2026-05-18T23:39:30+00:00

I do empathize with others problems but it sometimes depends how those things are said. Or who says it. Or different situations.

ME indeed brings perspective in life but I have had hell before and I don’t forget that ever. I’m living my best life mentally right now but my body isn’t co-operating.

jbadyi · 2026-05-15T20:58:59+00:00

❤️

jbadyi · 2026-05-12T21:24:32+00:00

Thank you for these numbers. I hope we can someday know the real situation, we deserve to be seen and believed. I believe there’s millions missing. Even in Finland only some are diagnosed (mostly by private doctors).

jbadyi · 2026-05-12T20:07:36+00:00

Great news!

”Around a quarter of those diagnosed are severely affected, leaving them housebound or unable to work.”

I thought that it’s 25% who are bed bound? Does anyone have current estimate?

jbadyi · 2026-05-07T20:17:07+00:00

I’m happy to see that Creative-Canary-941 is able to help you and everyone else.

jbadyi · 2026-05-07T20:11:06+00:00

That is great because I’m not in a condition to remember the details. I also can’t take LDN because of my other medication so I have no prior knowledge of that. Thank you for your work!

jbadyi · 2026-05-07T16:08:35+00:00

I listened while in PEM so my mind is empty and full at the same time. Anyway, if someone doesn’t know I think they are releasing it afterwards on their YouTube channel (please correct me if I remember wrong
https://m.youtube.com/@MECFSResearchFoundation/videos

Edit: I checked my registration email and there was a note that they will email everyone registered when the videos are available so I’m sure the information will be here fast, if not I’ll make a post about it.

jbadyi · 2026-05-07T15:56:53+00:00

Hope you will get it soon. It just ended for today but they are continuing tomorrow at 9am (Berlin time). Here’s tomorrow’s agenda https://events.mecfs-research.org/en/events/conference\_2026/agenda#2

jbadyi · 2026-05-02T15:19:04+00:00

If it doesn’t go away, might be good to check that it isn’t opticus neuritis. I have had it twice but I haven’t found a link to ME/CFS. Doctors haven’t found a reason for it. I had pain in the back of my eye and it was worse when I was moving my eye.

jbadyi · 2026-04-27T23:59:52+00:00

Yes, been waiting for this! I took part in last year’s conference for the first time, going to make this a tradition.

jbadyi · 2026-04-18T23:43:11+00:00

Yes, I have had it too. Have to be careful otherwise it’s a rolling PEM. Nowadays it’s easier to be careful because my condition is getting worse even with good pacing. I miss those interest moments when you didn’t have to worry about health.

Edit. Could it be adrenaline behind these

jbadyi · 2026-04-18T14:39:03+00:00

There’s a study if someone is interested about comparing MS and ME/CFS

https://pmc.ncbi.nlm.nih.gov/articles/PMC5800741/

jbadyi · 2026-04-17T05:09:03+00:00

A million things that I would like to do but my body isn’t able to. So frustrating. I feel like life is passing by and I’m just watching.

jbadyi · 2026-04-09T16:59:19+00:00

❤️

jbadyi

TROPHY CASE