Search results

Posts moved from University of Edinburgh fundraising thread Pretty exciting news (I am not sure if this has been posted before or has its own thread, if it has, I apologize). Blood-based biomarkers Does anyone know when the project is expected to be completed?

This is a very good thread! Thank you. Lots of information I wish I could have read when I was unable to shower. Because I am sensitive to smells and most products, the thing that worked best for me was a small, fluffy, soft towel soaked in warm water, gently applied to the skin. Certain areas...

Showering is damn hard. When I was at my worst I went many months without a shower. I can’t begin to put in words how difficult that was. Psychologically it was very, very difficult and it broke me. The smell from my own body was dreadful, despite my doing the best I could with wet wipes and wet...

Two years is such a long time… I’ve only experienced being non-verbal for days during bad PEM. It must be so hard for you, I can’t imagine. Whitney has made incredible progress lately, first eating and now speaking. May 2026 bring him even more improvement! I hope he will share with the...

When I am in PEM I would describe my fatigue as debilitating, because the fatigue is so profound, I cannot talk, move, eat. The lack of energy is total. When I am not in PEM I would describe it as extreme fatigue.

”Rest isn’t failure. It is how I survive.” :emoji_clap: It took me a very long time and a lot of suffering and pushing through PEM to understand this.

Since becoming ill I need to prop up my body with pillows and blankets all the time. Even though I lie down, I feel as if I am falling, and I need stuff around me to keep my body in a fixed position and give support. It’s definitely something to do with Me/Cfs, as I didn’t feel that before. I...

I was severe when I had major surgery some years ago. I did not decline afterwards. I had PEM of course, but I recovered to my normal baseline quite quickly. I hope it will all go as well as possible for you!

I read the blog and I am honestly scared. Scared that doctors at a clinic devoted to ME/CFS believe that patients who fulfill all the Canada criteria are ill because of their thoughts and need psychological treatment. Their statement that PEM exists in other diseases is wrong. They probably...

https://www.uu.se/nyheter/2025/2025-08-11-forskare-hittade-viktiga-biomarkorer-vid-postcovid Scientists find important biomarkers in post-covid 2025-08-11 Researchers at Uppsala University have made important progress in understanding post-COVID and ME (myalgic encephalomyelitis). Jonas...

3 km walk… I wish the authors spent 3 hours in the company of a severe patient. That would give them more insight into this disease than their so-called research. I am sorry I sound harsh, but studies like these are an insult to people with ME/CFS and their immense suffering.

It’s the same story I hear about ME/CFS. If you read any official documents about ME/CFS and Long Covid in Sweden they all say symptom relief is possible. I have yet to find anything that offers any real symptom relief. And I know from the Long Covid community that it’s the same for them. I...

I am the same with too cold. I find it manageable with an electric blanket och two duvets ha ha ha

In Sweden we have had 29-30 degrees since last Wednesday and I am in hell. I feel so sick, it’s unbelievable. This morning I felt like my body was going to shut down because of the uncomfortable temperature and pressure. I have a portable AC and a fan but it’s not helping my symptoms. I am 100%...

Excuse me if it’s a silly question, but does anyone know if CBF can be easily measured? Or is it very difficult? I have severe OI and I wish there was a test to show it. My BP and result from the tilt test are fine,

Maybe I’m naive but I imagine that if a treatment would come along, I’d start by simply sitting in my bed, then walking a bit, showering - things like that. I am thinking that gently easing into normal activities of daily living would be great for my body. I don’t know if I’d need a...

Wow thank you so much for taking the time to write this for me! I really appreciate it. I finally understand how these things work and what are the pros and cons. Really kind of you, JemPD ❤️

I am interested in Boise noise cancelling headphones, but I don’t understand how they work. Do they have batteries? Or do I have to charge them? Do I simply turn them on and then they cancel all noise for as long as they are on, even if I am not listening to music (which I cannot)? I find your...

I did a short tilt table test 3 yers ago and I didn’t have POTS at the time. But I don’t know what the results would be today after years in bed. I’m glad you find the medication helpful.

Thank you for explaining this theory and for the links.