@gezmedinger This is helpful. My labs for mitochondrial dysfunction & lactic acidosis near peak exertion are equivalent to early stages of cyanide poisoning (before death) and carbon monoxide poisoning. I describe that it’s like those each time I attempt exertion followed by a new concussion

@mrzphd Yes, EXACTLY! My venous O2 says were 28% at one point - a number most closely associated with those who are about to shuffle off this mortal coil.

@gezmedinger @BurbridgeHt Genuine question, how do you measure quality of life? I’d love to see condition steadied and potentially averaged scoring.

@Wright1983Jon @BurbridgeHt There will be validated questionnaires / scales, but I’ve not seen the ones used for this study.

@gezmedinger This has actually made me quite emotional - the difference in me and my life, and even worse my daughter’s, has been so utterly awful and it’s still so difficult to explain to people. She is now out of school for a prolonged period (with permission) because it’s too hard

@gezmedinger #MECFS #ME /CFS

@gezmedinger Knowing a 58 year old lady under going harsh breast cancer treatments and she was still able to be running 1:30 half marathons highlighted to me just how sick I was.

@gezmedinger @TraceyABurgess The headline is very very true, wish they’d also highlight chronic fatigue syndrome in the same way

@gezmedinger Frustrating waste of money and time. This has been done many times for ME/CFS.

@gezmedinger Sad to see no mention of post viral ME/CFS especially given the photograph used for this article @MEActNet

@gezmedinger This article really sums up how #LongCovid impacts quality of life. So many LC and ME/CFS sufferers get absolutely no sympathy or support from family, friends, colleagues or Dr’s. I am debilitated and taking 1 day at a time 💖

@gezmedinger Bedridden with ME for 5 years. My father died of cancer and was doing more than I can up until the last few weeks of his life. He also had four heart attacks and at least two strokes. He could still drive, walk, go out, make himself tea, food etc.

@gezmedinger Seen that with my own eyes. My dear mother died from breast cancer, she had more energy and quality of life up till 3 months prior to her death. And my ME/cfs at the time wasn’t even as bad as it’s now.

@gezmedinger Likewise, not a surprise to anyone with MEcfs.

@gezmedinger This has international impact on all those living w/ Long Covid. Sign & share, Solidarity

@gezmedinger Does mark a moment where finally the Guardian has finally made news articles on it. Their opinion area has had a number and they have published one author a few times on ME/CFS/LC but now its actually in the news section and that is a big change for the paper.

@gezmedinger LongCovid patients now having the same experience. In the main because #ME has been ignored, denied and gaslighted for about 70 years. It’s always been a political as well as a medical choice.

@gezmedinger Finally, our earth shattering reality is described🙏 “Shockingly, our research has revealed that long Covid can leave people with worse fatigue and quality of life than some cancers, yet the support and understanding is not at the same level. We urgently need more research…”

@gezmedinger @GeoEduOne @guardian gives no credit to the person who made the pillow or to the art protest this pillow was displayed at. Congratulations to @MEActNet for inspiring,creating, and holding this installation of pillows while severely sick.

@gezmedinger I used to find this kind of thing so validating when I lived with M.E. Now, I think it's really unhelpful and at worst I've seen it really upset some. Competition of any kind is unnecessary - advanced cancer is profoundly brutal, LC/M.E can also be brutal. Every pt is different