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Hi. I just wanted to share an essay my dad wrote that got included in a recent healthrising post. The part written by my dad is quoted below: I was very grateful he wrote it and thought it was really well done.

To me if I had to explain PEM in imagery. It’s like I did a lot of exertion one day and the next day I wake up lying flat on the road. Everything hurts. It’s extremely loud (“hypersensitivity” + tinnitus) and every time I try to get up I get knocked over by a passing car. So I just have to lie...

It’s kind of frustrating to see so much long COVID data being generated with such loose diagnostic criteria. Imagine if they collected the same kind of data with people fitting the ICC, we could learn a lot.

Except for perhaps overstating the CPET findings, and leaving out some symptoms/details for extremely severe (unable to communicate) type patients, the series looked rather good. I think I’ll share it to a medical professionals group.

News Release from Swiss parliament (translated) On September 11, 2024, Federal Councillor [one of the leaders of the executive branch] Baume-Schneider spoke in the Federal Parliament on the motion by Yvonne Feri, "Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): Care Situation." The...

n = 1. Tinnitus was a symptom I had never experienced before and started exactly at the same time as my first major ME crash. Now I get it everytime I crash.

I wonder if the complement system findings will be meaningful?

Was studying a related subject in uni when I got hit by the illness and had to drop out.

Here are the sources that are currently showing up: Every new S4ME weekly news in brief Trial by Error ME/CFS Research Review Thoughts about ME (Jeannette Burmeister) The Canary* ME/CFS Skeptic The Science Bit* Long COVID Advocacy* The Sick Times* Edzard Ernst’s Blog* Making Sense of ME/CFS...

Hi, I find it is hard to keep up with the excellent blogs and community news in the ME community, so I programmed a webpage that automatically aggregates different articles from high quality sources. Here’s the URL: https://me-cfs.github.io/news/community/ This is automatically programmed...

Excellent read thank you. I shared with family and they really enjoyed.

I know two people with rare autoimmune disease who were FND’d for a good half decade and believed the doc. I can’t remember where but I think I heard second hand or thirdhand that someone who was initially diagnosed with FND had a tumour, but my memory is fuzzy on that so not sure.

To me it seems the healthcare system worked exactly as the higher ups intended it to. Meave’s mistreatment is the result of people designing the system with BPS views. It reminds me of the saying “The purpose of a system is what it does”...

All in all, despite the Miller article, the media coverage has been really good compared to what I would have expected. And there’s been so much coverage.

This whole thread

It seems the way things are going, long COVID is going to also count people with the sniffles for a couple weeks post infection. Hence the high prevalence data. Anyways, nice to have a review published in nature that takes a biomedical and non-minimising stance even if the numbers feel weird.

Yes. If we have to find a correlation with age, in my very limited experience. Old doctors tend to be more empathetic, and willing to listen. Middle aged doctors immediately assume functional/psychological. And young doctors are a 50/50.

What about low dose apiprazole (abilify)? There’s been no randomised blinded trial but a retrospective study found results worth investigating further. Anecdotally, behind LDN, it seems to be the drug most people report benefits from.

Thinking about it. With the “inevitability” of death part, did the coroner just proclaim that some cases of ME can be “terminal”?

They say her death was inevitable as she couldn’t feed herself and NJ/PEG failed. They say they couldn’t consider TPN as risk of sepsis. If death inevitable without TPN, TPN should still be done despite high risk of death from sepsis? Better some chance of survival than none? I don’t...