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I'm not convinced heart rate tells us anything about ME/CFS. When I was moderate I could shower every day without issues and my heart rate would be between 110-120 for up to 15 mins. But if I took a beta blocker and walked 100m with a heart rate of 85, I still got PEM the next day.

NAPCODE project needs your expertise: Survey on the topic of post-COVID Long-lasting health problems that follow an infection with COVID-19 are referred to as the "post-COVID condition" (PCC). During the COVID-19 pandemic, extensive data sets were generated to break down the clinical picture of...

Wow, your criteria are strict! FWIW F&M use 125 cells/ul as cutoff point.

https://nitter.net/GrandeBettina/status/1991630642958778394#m AI translation: TLDR: rehab people were overrepresented during the kick off meeting. The perspective of severe patients was not considered.

It does sound like your condition fluctuates. I was able to do the exact same thing every day for a year when I was moderate. No week was better or worse than the next.

https://nitter.net/Lisathefirst20/status/1990394286223892895#m BMG = Bundesministerium für Gesundheit (Federal Ministry of Health) — the German government ministry responsible for public health. NUM = Netzwerk Universitätsmedizin (Network University Medicine) — a collaborative network of...

You can just think back to an 8 week period where you experienced crashes.

ProSieben and SAT1 are big and popular TV channels. I guess they are comparable to ITV.

Has he submitted the paper for peer review yet?

He's been talking about it since at least 2018: https://www.healthrising.org/blog/2018/10/24/younger-low-dose-naltrexone-dextro-naltrexone-microglial-inhibitors/

After yesterday's positive news, here's why many pwME aren't overly optimistic because the money could be used to fund more BPS nonsense. All three recommend GET or even inpatient rehab facilities for pwME...

Mark Bonnar still supports AfME (might contain spoilers): https://www.bbc.co.uk/mediacentre/articles/2025/the-celebrity-traitors I wonder if he has a personal connection?

DXM gets rid of my PEM headache entirely and when I overexert myself it blocks symptoms until it has been metabolised. Unfortunately, it does not block PEM for me and it does not help with muscle pain and weakness during PEM.

I’m curious about how this theory explains the gradual baseline decline some people report after repeated PEM episodes. I think you posted about the mtDNA theory in other threads that I can't find at the moment.

Also a reminder that we have a thread for the German translation: https://www.s4me.info/threads/translating-s4me-fact-sheets-into-german.45331/

https://on.orf.at/video/14298874/15979304/spenden-gala-fuer-mecfs-opfer AI translation: It is an illness that has been ignored for decades – ME/CFS. The abbreviation stands for Myalgic Encephalomyelitis – Chronic Fatigue Syndrome. Although tens of thousands of people in Austria suffer from it...

https://form.typeform.com/to/SWg0ns8F

Not sure if @DMissa would benefit from this? https://advancement.latrobe.edu.au/giving/chronicfatigue Based on this tweet: https://nitter.net/DanMissailidis/status/1981528443864174838#m

CureME, who are responsible for the UK ME/CFS biobank: https://cureme.lshtm.ac.uk/index.php/1793-2/ Thread here: https://www.s4me.info/threads/updates-from-the-uk-me-cfs-biobank-cureme-team.2401/

This is for Ponting's team at the University of Edinburgh: https://donate.ed.ac.uk/support/ME-CFSResearch