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This article could have been about me. So many details are exactly the same. It’s scary…

If Buhrman had an ounce of integrity she’d donate her research money to Jonas Bergquist. Or to the Swedish Post Covid Association who are doing an amazing job advocating for patients’ rights. Or to Chris Ponting’s team. I honestly believe that even buying coffee and pastries for Ponting’s...

Imagine the honor, the privilege and the immense good fortune to work at Uppsala University, and use that to literally shit all over the suffering of Long Covid patients! Has this person been living under a rock? Hasn’t she bothered to delve into Post Covid research? Hasn’t she done her...

I fall asleep very late and I am wired but tired, even more than usual.

I was mild for many years before becoming severe. To me, both mild and severe feel like the same disease. The profound sickness, the intolerance to stimuli, and the lack of energy I suffered from when I was mild were exactly the same as now, when I am severe, only the intensity is so much...

Great to hear that!

This is devastating news.

This contradiction is actually written down in the Health care guide to ME/CFS in Sweden which says: patients need to be explained in a pedagogical manner that exercise is not harmful (…) patients tend to exert themselves too much. :banghead::banghead::banghead: So… what is it? Do we do too...

My family exerts pressure indirectly, due to the fact that they have ”healthy people” type schedules. They try to be considerate of my needs, but that doesn’t always work. It will definitely be easier when my daughter grows up and moves out. Doctors, and all other health care providers...

My sleep pattern has become weird after a big crash last summer that drastically reduced my baseline. I am severe and bedbound. I fall asleep late (2-3) and wake up late (12-13) and sometimes fall asleep for a couple of hours att odd times like 18. I’ve always been a morning person (even when...

Moved posts Someone asked him about this on Twitter and he replied that it wasn’t weight, but water retention. I really hope he is allright and they can get to the bottom of what’s going on. I was glad to see the fundraiser reached its target. Ron’s message had a very positive tone, may he...

I had major surgery when severe. Nobody knew anything about ME/CFS at the hospital. The anestheologist was kind enough to read up on ME/CFS. He told me he could not find a lot of information about anestheology and ME/CFS, but the little he found said that meds with adrenaline should be avoided...

I find this deeply disturbing. There was a case in Sweden last year where a woman with ME/CFS took her own life, because she kept being denied sickness benefits and disability. After fighting the system for many years, she hired a lawyer to help her, but it was too late… she could not take it...

This gives me hope and strength which is desperatedly needed when you are bedbound, living in the dark, for years. I wish the partners the very best of luck in securing funding and I am deeply grateful for their work.

I often wonder if I would have avoided becoming severe, had I paced and rested aggressively during the first few years. Instead, I did the opposite: pushed and crashed and pushed some more, trying to beat whatever I was feeling with sheer will power…

This is exactly my experience with pacing. Pacing does NOT improve my ME/CFS. It just helps me avoid crashes. Crashes lower my baseline, so it’s crucial to avoid them.

It would be so interesting to know if the same genes are downregulated in ME/CFS. Will maybe DecodeME answer this question?

I am om both SSRI and LDN and yet I’m still severe and bedbound. These meds don’t even scratch the surface, I don’t know why scientists keep talking about them.

This sounds like an excellent plan, I hope they will implement it quickly so that people who are affected actually get help.