Wow, when I surveyed rapamycin 2 yrs ago, hardly anyone had tried it, but now quite a few people are trying it, I'm guessing due to the upcoming rapamycin trial. How much improvement have you experienced with it & what dose? I was thinking of trying it myself but I don't have a dr who will Rx it.
It's great your health & QoL have improved, even though there's still a long way to go. I know what you mean about condition worsening with even the slightest change. It's so frustrating! My health declined a lot since moving in summer 2023, but I think I figured out what I need to do to get better.
Happy to see you, too! How have you been feeling these days? Any progress?
Great to see you, too! Any updates on your end?
Thanks. I just made my first post.
Top 20 patient-reported treatments (from 100+ treatments surveyed) for fast, fluttering or pounding heart. Cardioselective beta blockers and ivabradine show similar efficacy, whereas propranolol exhibits slightly lower efficacy and tolerability. Examples of cardiovascular beta blockers = atenolol, bisoprolol, metoprolol, nebivolol. While higher doses of EPA can induce atrial fibrillation, in this survey over a wider range of doses, EPA was well-tolerated.
Fast, fluttering or pounding heart (Bottom 10 treatments) -- shows the bottom 10 treatments for this symptom: fluvoxamine, SNRIs, CBT, corticosteroids, green tea, amitriptyline & other TCAs, matcha tea, black tea, (ar)modafinil, and ADHD stimulants. ADHD stimulants worsened fast, fluttering or pounding heart in ~48% of patients who rated it and reportedly improved this symptom in ~7%, yielding a net effectiveness score of -41%. Symptoms are organized by effectiveness
Top 30 patient-reported treatments (from 100+ treatments surveyed) for fatigue. Unsurprisingly, ADHD stimulants helped to the greatest degree, followed by armodafinil & modafinil, IVIG &subQ IgG, oxaloacetate. nattokinase/lumbrokinase and thiamine. It is interesting to note how well the latter three supplements performed considering their accessiblity and relative safety compared to something like IVIG which is incredibly difficult to access or ADHD stimulants which are strictly controlled. Info on dosing & brands used for NK/LK has been discussed previously. Most who rated oxaloacetate used one specific brand & higher doses to be discussed in depth later. Low-dose Abilify (aripiprazole) looks promising for fatigue despite other data for Overall Condition showing lower tolerability. LDN's results were less robust, with fatigue improving in just under 50% of those who trialed the medication and experienced fatigue. Matcha tea was considerably more effective than green tea likely in part due to the higher caffeine content in the former.
Soon I'll post another spreadsheet showing individual treatment effects on specific symptoms (~30 different symptoms). A few example charts from preliminary data are shown here w/ alt text.
“Adjusted p-values” in columns T and AC under 0.05 mean the results show a statistically significant difference compared to the reference agent (oral vitamin C). “NA” means the data isn’t available due to a sample size under 20.
Treatments are organized by a broad category (column A) followed by smaller treatment groups (B) & individual treatments (D). Column E shows adjusted p-values vs the rest of the members within a given treatment group.
I see many people asking, "Has anyone tried XYZ for LC (or ME/CFS)? You can view patient-reported treatment outcomes for ME/CFS & Long COVID in this spreadsheet. Scroll to the right to see treatment results for ME/CFS (Columns S - AA) or Long COVID (Columns AB - AJ). docs.google.com/spreadsheets...
Thanks! I just followed him.
Oh never mind, I figured out how to post. Duh...haha.
Thank you! I just mass followed everyone in that starter pack. Very helpful! Now I just need to figure out how to post on here (other than replying to other posts). Is that the "Chat" function?
Hi!! I remember you, too; great to see you here! I'm trying to figure this place out...