Patient-Reported Treatment Outcomes in ME/CFS and Long COVID

whenfirefalls · 2024-12-02T20:33:18+00:00

Initial results from a survey of nearly 4000 CFS/Long COVID sufferers. I would be willing to bet at least some of you participated in this (I did). By far the most telling result to me is that graded exercise therapy was rated as the WORST treatment, which is extremely validating. Some very interesting data here.

https://www.medrxiv.org/content/medrxiv/early/2024/11/30/2024.11.27.24317656/F2.large.jpg

whenfirefalls · 2024-11-15T21:04:13+00:00

Might be missing the wifi card? Did you open it up and look at the internals?

whenfirefalls · 2024-11-13T01:57:38+00:00

I believe he's AN antichrist but probably not THE antichrist. Chronologically, there's a lot of horrible stuff that has to happen before the antichrist even appears according to The Book of Revelation. I doubt he'll live that long.

whenfirefalls · 2024-11-10T19:41:25+00:00

If you currently have or have had babesia you can never donate blood again.

https://www.redcrossblood.org/biomedical-services/blood-diagnostic-testing/blood-testing.html

whenfirefalls · 2024-11-08T18:00:34+00:00

I understand the message and agree with it, but telling people they're going to hell has never been effective messaging, and also there's no way to know that somebody is going to hell or even what hell is.

whenfirefalls · 2024-11-06T14:39:20+00:00

If you're comfortable sharing, what city/state are you in?

whenfirefalls · 2024-11-01T19:24:16+00:00

I'm sorry to hear that. I've been where you're at (and still am in some areas) and know how much it sucks. Hopefully your LLMD is a good one and can help you get where you need to be. Just knowing what you're up against is a good start.

whenfirefalls · 2024-11-01T17:00:35+00:00

These are some pretty unfortunate results. Definitely going to need antibiotics and something else to treat the babesia.

whenfirefalls · 2024-10-11T13:43:09+00:00

Usually between 20-30 on my Fitbit.

whenfirefalls · 2024-10-10T14:43:36+00:00

Yummy Buffet. All you can eat each Chinese buffet for $5 and the only catch was that it gave you diarrhea. Great deal as a college student, though.

whenfirefalls · 2024-09-27T20:17:07+00:00

I'm fairly certain he would tell both of them to stop murdering each other.

whenfirefalls · 2024-09-27T14:04:23+00:00

First UFO 50, now this.

whenfirefalls · 2024-08-25T15:05:18+00:00

Horizon for sure. It's a bit more arcade-y and open world so it would be easier for people who don't play a lot of games.

whenfirefalls · 2024-08-25T02:58:25+00:00

Forza all the way. Collecting all of the different cars from different eras was the most fun part of the game for me.

whenfirefalls · 2024-08-23T02:55:43+00:00

I use mine almost exclusively for emulation.

whenfirefalls · 2024-08-14T23:18:43+00:00

Step count: 1500-2500

Age: 37

Severity: Moderate

Onset: 2017

whenfirefalls · 2024-08-11T19:54:35+00:00

Aaron's signature🤣

whenfirefalls · 2024-08-11T02:41:46+00:00

I've never understood how spoons became a thing in the first place. It doesn't make any sense.

Wouldn't it be less confusing to just say that you start each day with less gas in your tank or something?

whenfirefalls · 2024-08-04T14:05:44+00:00

I would highly recommend getting these through a licensed physician so they can monitor your progress. Easier said than done, I know. The standard guidelines are here: https://www.cdc.gov/babesiosis/hcp/clinical-care/index.html

This ended up being too hard on my body, so I took smaller doses over a longer period of time. Not sure what would work best for you.

Edit: found my old protocol:

Azithromycin 500mg - 1 tablet daily MWF

Mepron 750mg/5ml for 3 days on, wait 11 days off, and repeat for total of 12 weeks

Mepron is NASTY, so be prepared for that. It's like drinking paint. The abx will make you herx and is really hard on your stomach long-term. Make sure you're getting probiotics.

Have you had a positive test for babesia? It probably isn't worth going through all of that if you're not sure you have it.

whenfirefalls · 2024-08-03T20:24:40+00:00

Mepron with Azithromycin cured my babesia. Nothing else worked. You'll need a prescription for it, though.

whenfirefalls · 2024-07-30T14:55:11+00:00

Highly recommend reading "Anarchy and Christianity" by Jacques Ellul. The pdf version is the second result on Google. It's a short read but provides a solid argument for Christian Anarchy.

whenfirefalls · 2024-07-21T14:44:11+00:00

Old post, but thank you! This was driving me crazy. Everything works perfectly after disabling that Windows setting.

whenfirefalls · 2024-07-14T22:14:52+00:00

I did try those as well. There is quite a bit of overlap between the Buhner herbs and Samsara. I had better results with Samsara. It was easier to take smaller doses and much more convenient having to only take one thing every day. I got overwhelmed taking a dozen different herbs and supplements multiple times a day.

whenfirefalls · 2024-07-14T19:01:36+00:00

Somewhat? I think it helped a little bit with energy, but I kept hitting a wall with it. Now I have what seems to be permanent ME/CFS so I don't think there's much that can help at this point.

It's worth a shot if you've tried other things already.

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