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Any formatting/layout problems with the pdf are my fault and probably best ignored. I just did a quick print to pdf from my iPad to share.

I’ve had long periods where it feels like my body is shutting down. But again it’s one of those things medical professionals don’t respond well to hearing. There’s probably a whole language of these terms we have been taught not to use by negative reinforcement.

PDF for those who need it

Maybe the question could be more bluntly stated, something like: do any of these medications not work for you at all for any pain?

It depends, I use paracetamol and ibuprofen for different sorts of pain… One works better than the other in some circumstances. Would this sort of mixed usage mean a no in the context of this survey?

Thanks @Chris Ponting and @Simon M Not an easy read but hopefully it will surprise and perhaps shame a few outside of the community into taking notice.

Me too. More things just start to go wrong misfire.

For a long time my sleep wasn’t too bad in terms of length except during periods of PEM/crashes. And I could sleep or even have a nap and feel ‘better for it’ but not ‘better’ if you see what I mean? Over recent years things fell apart after a particularly big trigger and I used and had very...

On snakes and ladders, another way I’ve sometimes described it is this… It’s like trying to cross a road while wearing a blindfold and ear muffs. You may make it across but you may well get hit by a car. I think it describes both the potential impact but also the lack of reliable information...

I’m through the document but not the thread so apologies. But a few notes I made this week: I like this. It starts making it clear we don’t know much. This is good. I never got to the thread on the meed to lie down as it was quite long and daunting, but it’s very much a key symptom which...

It certainly would be great to see. I know a nasal version of the AstraZeneca vaccine was a flop despite early hopes so am interested in how these efforts develop https://www.thelancet.com/journals/ebiom/article/PIIS2352-3964(22)00480-7/fulltext I’m also unsure on the Long Covid claims. As we...

I haven’t managed to get through and digest all of the document or posts here yet to give any useful feedback but what I’ve seen so far looks promising and I wanted to pitch in with a quick thank you.

An interesting article on nasal vaccine development, how they work and may offer better protection https://www.scientificamerican.com/article/new-nasal-vaccines-offer-stronger-protection-from-covid-flu-and-more-no-needle-needed/

I have not found any physio support helpful for the reasons you can imagine. But I remain hopeful physios can help those of us with limited mobility in the future. Thankfully no issues with bed sores, but I am able to move around a bit except when at my worst. Lots of other issues which some...

I dug into this more as it mentioned changes in creatine kinase and that’s been mentioned in other studies. But if I’m looking at the data correctly both groups seem to show changes here over time (from week 2 to week 8) more significant than between placebo and treatment groups? As @Andy and...

There’s some more info in this thread.

“Kwangdong Pharmaceutical is a company that aims to provide healthy life and human health care by combining oriental and western medical science. It has a vision of achieving 1 trillion corporate value, sales, and operating profit by 2020” Quote from the company’s website. The 1 trillion is...

Here’s an AI generated audio summary of the paper: https://u.pcloud.link/publink/show?code=XZduWi0ZTdhxTQF6uuVEGoFdlRdTqL2VkeIy So I don’t completely derail discussions of the papers please post any feedback on these audio summaries to this thread...

A very small sample size but a lot of information to take in! Here’s an AI generated audio summary of the paper: https://u.pcloud.link/publink/show?code=XZ6HWi0ZBMorHqJoUY7MyiDX6LMnPBiwpM17 So I don’t completely derail discussions of the papers please post any feedback on these audio summaries...

Yes it’s an audio summary, sorry if that wasn’t clear. I can easily post the text too if people prefer? (quoted below) So I don’t completely derail discussions of the papers maybe people can post feedback to this thread...