Hacker News Reader

Comment by trevormcneal | Hacker News Reader

can you explain what is ME/CFS and how you recovered ?

ME/CFS is a chronic condition characterized by debilitating fatigue and, specifically, post-exertional malaise. Patients who suffer from ME/CFS will have very debilitating negative reactions to any exertion past a certain threshold. The negative reaction can be delayed by 24 hours in some and it can be severe enough to make jobs or daily activities anywhere from difficult to nearly impossible.

Importantly, the delayed worsening can clearly be measured by light exercise testing. It isn’t the same as normal post-exercise recovery or soreness. It’s far worse and can even be triggered by strenuous mental activity (perhaps energy expenditure in general).

For many, it has a distinct viral trigger. They can be fine and healthy one week, then become chronic CFS sufferers after an infection with a number of notable viruses (EBV is common).

Sound familiar? It has a lot of parallels to “Long COVID”, but it just never got the same attention because it’s not attached to a global pandemic in the 24/7 news cycle.

thank you for your answer, this was very informative, I got caught into the ME/CFS rabbit hole for a few days, sorry for the delay coming back to your comment. A lot of things make sense for my situation of feeling tired all the time, even with some breaks and regular off time I can easily go from well rested to feeling like crap.

I'm really grateful to have seen your comment and that you answered me, I will do some experiments and tests to asses my situation better and check if some of the solutions can help.

My ME/CFS was triggered by a combination of viral infection and various other life stressors. I recovered by removing all the stressors (including quitting my job), then gradually building up my life again with positive uplifting activities and goals. Somewhat similar to Fred Friedberg's protocol.

http://www.cfsselfhelp.org/library/fred-friedberg%2525E2%252...

https://forums.phoenixrising.me/threads/dr-friedberg-intervi...

I'd like to second this question, I'm very interested in any recovery story of CFS.

There are hundreds of accounts of people who have had substantial recovery (thought probably not full) from ME/CFS. The problem is that what works for one person doesn't work at all for 99% of other sufferers. Some people say injections of B12 fixed them up; others move to the desert and get away from environmental issues (and perhaps stress); others benefit from a very gradual incline of exercise; a few have had spinal fusions; and so on.

My wife has had ME/CFS for more than a decade. Honestly many of the touted remedies she finds online sound like snake oil, but if you are suffering and nobody has a good clue, you try each one in turn hoping you might be one of the lucky people who responds to a given modality.

Cort Johnson runs the website Health Rising, which acts as a clearing house for recent news about ME/CFS (and recently long covid as it relates to ME/CFS) and there is a community built around that site.

https://www.healthrising.org/about-us/cort-johnson/

There is also an interesting book about a recovery in the dessert “through the shadowlands” by Julie Rehmeyer. Just not practicable for everyone, especially when the dessert is far away like in Central Europe.

There’s a very good subreddit where people share news and their experiences. There also seems to be some overlap between CFS and long covid, Dr. Resia Pretorius has published a lot of work on micro clots in the blood and long covid.

See my prev comment. Happy to share more by email.

Reply on news.ycombinator.com