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Checkmated by severe illness : ME/CFS

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Hey,
I have a friend, who also fights with CFS, although less severely than you, and thus I can somewhat understand what you are talking about. I also know, that there are currently next to no working treatments to the condition and much is still in the experimental phase.
I wish you the best of luck and a steady improvement whenever possible!

Hey, I have a friend, who also fights with CFS, although less severely than you, and thus I can somewhat understand what you are talking about. I also know, that there are currently next to no working treatments to the condition and much is still in the experimental phase. I wish you the best of luck and a steady improvement whenever possible!

Btw, have you considered playing correspondence chess with no time limit? Maybe that can fit your condition well.

Btw, have you considered playing correspondence chess with no time limit? Maybe that can fit your condition well.

Physics Girl on youtube suffered from the same thing due to the after effects of long covid. Her condition has improved and she made her first video in 3 years recently, so there is hope!

I wish nothing but the best for you <3

Physics Girl on youtube suffered from the same thing due to the after effects of long covid. Her condition has improved and she made her first video in 3 years recently, so there is hope! I wish nothing but the best for you <3

My husband has been dealing with severe to very severe ME/CFS for the last 8 years so I completely understand your situation. I'm really sorry to hear that you are dealing with it, too. I'm literally waiting in a zoom call right now with the specialist to discuss more experimental treatments. I hope your treatments can make a difference soon.

My husband has been dealing with severe to very severe ME/CFS for the last 8 years so I completely understand your situation. I'm really sorry to hear that you are dealing with it, too. I'm literally waiting in a zoom call right now with the specialist to discuss more experimental treatments. I hope your treatments can make a difference soon.

I had an experience similar to this for a number of years. I can relate somewhat, but ME/CFS is likely different from my problem: chronically LOW cholesterol. I could sit for an entire day, an entire week, and do nothing. Whenever I would lose agency like this before I was able to do "dopamine resets" taking a break from the internet and high stimulus. Then I would be normal. But at some point this stopped working. I could not read; I would forget why I walked into a room; I couldn't formulate any plan if something out of the ordinary happened. In essence, I had no ability to think sequentially. I would pick up a book or work and become instantly tired, exhausted. Yet my sleep was horrible.

When one's cholesterol is too low the ability to form protective neurosteroids is dramatically reduced. This affects the energetic balance of the brain. Higher functioning shuts down. When the pool of cholesterol and steroids is reduced, the end-point, specific hormones end up dominating: usually cortisol, but also adrenalin. On the whole, these hormones end up tanking energetic levels. Depressed people are known to have high levels of cortisol. Moreover, there is nothing remaining to protect from the toxic effects of these hormones.

Conventional wisdom puts symptoms like mine on the psychiatric path. Conventional wisdom often sees low cholesterol as a positive. It was brutal and I lost 6 years of my life. It took years to discover the problem, and the solution too was not an easy discovery...

DMs open if anyone wants to vent.

I had an experience similar to this for a number of years. I can relate somewhat, but ME/CFS is likely different from my problem: chronically LOW cholesterol. I could sit for an entire day, an entire week, and do nothing. Whenever I would lose agency like this before I was able to do "dopamine resets" taking a break from the internet and high stimulus. Then I would be normal. But at some point this stopped working. I could not read; I would forget why I walked into a room; I couldn't formulate any plan if something out of the ordinary happened. In essence, I had no ability to think sequentially. I would pick up a book or work and become instantly tired, exhausted. Yet my sleep was horrible. When one's cholesterol is too low the ability to form protective neurosteroids is dramatically reduced. This affects the energetic balance of the brain. Higher functioning shuts down. When the pool of cholesterol and steroids is reduced, the end-point, specific hormones end up dominating: usually cortisol, but also adrenalin. On the whole, these hormones end up tanking energetic levels. Depressed people are known to have high levels of cortisol. Moreover, there is nothing remaining to protect from the toxic effects of these hormones. Conventional wisdom puts symptoms like mine on the psychiatric path. Conventional wisdom often sees low cholesterol as a positive. It was brutal and I lost 6 years of my life. It took years to discover the problem, and the solution too was not an easy discovery... DMs open if anyone wants to vent.

First: Thanks for making this blog post. You're definitely not alone here.

I've been repeatedly thinking about making an M.E. team maybe for people who are sick and friends of people with M.E.

This is probably the best place to ask for interest. I'm a bit wary because of privacy but if it's open to friends of ME patients then it's not that much of a concern I think.

Any opinions?

First: Thanks for making this blog post. You're definitely not alone here. I've been repeatedly thinking about making an M.E. team maybe for people who are sick and friends of people with M.E. This is probably the best place to ask for interest. I'm a bit wary because of privacy but if it's open to friends of ME patients then it's not that much of a concern I think. Any opinions?

@Metagross31 said ^

Btw, have you considered playing correspondence chess with no time limit? Maybe that can fit your condition well.

Thank you for the Idea. I have not yet tried it.

@Metagross31 said [^](/forum/redirect/post/13jfYqbT) > Btw, have you considered playing correspondence chess with no time limit? Maybe that can fit your condition well. Thank you for the Idea. I have not yet tried it.

I have moderate ME myself and am only able to work about 5-10 hours a week coaching chess lessons. If anybody ever wants an ME friendly chess lesson (accomodating pacing and soft speaking etc they can contact me for more information. I'm lucky enough that I can still manage to play an OTB game occasionally but its needs 48hrs full rest before the event with extra naps and meditation and then I feel pretty run down with bad PEM all the next day but for me it's still worth it to have something I can still compete in. I'm still managing to reach 1800 FIDE/1880 ECF despite the condition. I find blitz chess very relaxing and I'm happy to play with very minimal calculation on rough days and just see where my intuition takes me. I know full well if I play my best blitz on a good day I'm 100 points rated higher but I still enjoy a blitz game followed by a quick opening book review after. I play on an old light Iphone XR when my hands get too fatigued from using the mouse.

I have moderate ME myself and am only able to work about 5-10 hours a week coaching chess lessons. If anybody ever wants an ME friendly chess lesson (accomodating pacing and soft speaking etc they can contact me for more information. I'm lucky enough that I can still manage to play an OTB game occasionally but its needs 48hrs full rest before the event with extra naps and meditation and then I feel pretty run down with bad PEM all the next day but for me it's still worth it to have something I can still compete in. I'm still managing to reach 1800 FIDE/1880 ECF despite the condition. I find blitz chess very relaxing and I'm happy to play with very minimal calculation on rough days and just see where my intuition takes me. I know full well if I play my best blitz on a good day I'm 100 points rated higher but I still enjoy a blitz game followed by a quick opening book review after. I play on an old light Iphone XR when my hands get too fatigued from using the mouse.