Search results

I don't have an issue saying "we don’t know what causes you to not recover". But I will largely have to disagree with the rest. Researchers are barely even looking at this, and for those that are, it is inherently extremely hard to study. I don't know if the issue is that there's a sentiment...

The Canary and Chronic Fatigue by Majid Ali, published 1994 Full scanned book available to borrow on Internet Archive.

American ME and CFS Society: What Causes ME/CFS? "ENVIRONMENTAL CAUSES Organophosphates and other pesticides can trigger symptoms similar to ME/CFS Radiation exposure may be a catalyst for ME/CFS Toxins can cause mitochondrial impairment Environmental toxins have frequently been implicated as...

It seems the OP of the thread experienced profound results, and still improved after over 200 days. Only 7 people tried the first batch, a few of whom had some modest improvements (one went from 1 walk/stand per day to 4). 3 people, including OP, tried the second batch, but didn't experience...

MEpedia has some good information on Pesticide exposure link to ME/CFS.

Four Cases of Pesticide Poisoning, Presenting as “ME,” Treated with a Choline and Ascorbic Acid Mixture John Richardson Journal Of Chronic Fatigue Syndrome Volume 6, 2000 - Issue 2 Abstract Objectives: 1. To demonstrate in four patients, in whom the correct diagnosis of pesticide poisoning had...

Total-body PET imaging to identify deep-tissue SARS-CoV-2 reservoirs in Long COVID "This study is the first in the world using advanced imaging technologies to identify deep tissue SARS-CoV-2 reservoirs in Long Covid study participants. Specifically the team is using longitudinal ImmunoPET-CT...

The linked NIH page seems to say that monoclonal antibodies work on earlier strains, and they're not recommended because they're not as effective against later strains. Michael Peluso says as much in the NIH Research Roadmap webinar: "We're taking 30 people with long COVID attributed to a...

That's him, thanks! "Atul Butte" fits with the blurry name on the card in front of him. I like that he was calling for transparency and pointing out that people have issues with RECOVER. Will be following him.

Anyone know who this is? First name might be "Asul".

Walter Koroshetz: "The patients with ME/CFS are incredibly frustrated by the lack of interest by physicians and taking care of them. So for years, they have been fighting a perception that people don't think they have anything wrong with them, and it's "in their head" quote unquote. So hopefully...

Walter Koroshetz speaking about long COVID in the next few minutes: https://videocast.nih.gov/livew.asp?live=54654 Currently a Q+A about LC clinical trials. Edit: Maybe he already spoke, I'm not sure.

That's a really good idea. I've always hated trying to track my symptoms with just a 1-10 because two months later, I'll almost certainly have no idea what exactly a "7" meant back then, and there will be drift. Using descriptions would really help. I might recommend that patients put as much...

FUNCAP seems like a pretty good way to measure. (S4ME thread about it) Very cool about the Activpal! Too bad it looks like it's not easy to buy for personal use. Which features that you think would be useful are missing in all the available symptom tracking apps, if you can share that?

This is now recruiting, in Hannover, Germany. "Does blood purification help against severe fatigue in post-COVID? Chronic fatigue syndrome (CFS) is a heavy burden. The "EXTINCT post COVID" project is investigating the effectiveness of apheresis therapy and is seeking participants for a study...

Thread on Phoenix Rising about peginterferon lambda.

Early Treatment with Pegylated Interferon Lambda for Covid-19 8 February 2023 Authors: Gilmar Reis, M.D., Ph.D., Eduardo A.S. Moreira Silva, M.D., Ph.D., Daniela C. Medeiros Silva, M.D., Ph.D., Lehana Thabane, Ph.D., Vitoria H.S. Campos, Thiago S. Ferreira, M.D., Castilho V.Q. Santos, Ana M.R...

What metric(s) will you use to track how bad a patient's ME is? Edit: If it's not too expensive, maybe wearables could be incorporated? Tracking things like step count, number of sit-to-stands, time spent laying down.