3 ms·
This activism about this problem is ridiculous and is inside all of the long covid communities. I recently recovered from my second long haul and the people in
by thenerdhead 4y ago
This activism about this problem is ridiculous and is inside all of the long covid communities. I recently recovered from my second long haul and the people in those communities think they know better than world class clinical researchers tackling novel chronic illnesses.
They continue to think that money is being wasted from this "limited" pool on things like exercise/pacing and CBT trials which are known tools to help certain long haulers but especially "harmful" to ME/CFS where there is already limited research on controversial PACE trials. They believe that we should just be throwing all that money towards trials of unknown medications that haven't been tested instead. Many promising ones have already seen mixed results.
Also this tends to be a huge misunderstanding by armchair medical experts/"patient-led researchers" of what a DCC (data coordination center) is and how that would actually help with these trials long term.
Look, I get it. My last 2 years have been hell on earth. I've blogged countless times on this and I wanted immediate relief too. But the only things that helped me were the "controversial" things(paced exercise, CBT, etc) outlined here.
- sp527 4y agoCould you please elaborate on what you did to recover?
- thenerdhead 4y agoHere's my first post: https://jondouglas.dev/long-covid/ https://jondouglas.dev/long-covid/ And my recent one: https://www.reddit.com/r/LongHaulersRecovery/comments/12iv4p0/done_pushing_the_boulder/ https://www.reddit.com/r/LongHaulersRecovery/comments/12iv4p...
- upsidesinclude 4y agoIt is just strange to read this list as if it isn't a normal part of life. Your first five-seven are just standard day to day living and if you lived that way, it seems to me you would never experience "long covid". Note: Marathoning and other extreme excercise activities are not normal, regardless of how large the communties may be.
- kirkbackus 4y agoBefore I got hit with long covid, I was in the best shape of my life, and was doing all of those things on that list. I was running 1.5 miles and exercising several days a week. It absolutely didn't prevent me from experiencing long covid.
- thenerdhead 4y agoThat is pretty much my story too. Experience is the most brutal of teachers.
- upsidesinclude 4y agoOne thing that is missing from his list is diet. Not sure what you eat, but if you told me you were eating fresh fruits and fermented vegetables daily and avoided most processed foods, I would be shocked. He mentioned "supplementation" and has a few things listed, none of which I would adhere, but general antiviral supplements (proven clinically, just search it) would certainly help you. Quercetin+EGCG+ceylon daily This is a well regarded treatment regime for chronic viral infection Or just garlic extract and ceylon extract if your budget is tight.