ME/CFS (kbin)

liv, 3 months ago in April 3-4 The 1st International Conference on Clinical and Scientific Advances in ME/CFS and Long COVID (free virtual registration)

Speakers include Lucinda Bateman, Ed Yong, David Systrom, Susan Levine.

solrize, 17 hours ago in Science for ME weekly news in brief

ME=myoencephalitis aka chronic fatigue syndrome. Long COVID is likely related.

mecfs, 17 hours ago

yes ME or ME/CFS is preferred to CFS, if someone wants I can send them some resources about it

liv, 1 month ago in Frontiers | Longitudinal cytokine and multi-modal health data of an extremely severe ME/CFS patient with HSD reveals insights into immunopathology, and disease severity

The full text includes a proposed severity scale by Whitney Dafoe.

bjoern_tantau, 2 months ago in Health outcomes for Long COVID are comparable with ME/CFS

Doctors: “So you’re saying I can just keep ignoring it.”

Plopp, 2 months ago in ‘You don’t want to get better’: the outdated treatment of ME/CFS patients is a national scandal | George Monbiot

That’s infuriating.

liv, 2 months ago

Very! I love it that George Monbiot of all people writes about it though. I've been a fan of his journalism for years.

reddig33, 2 months ago in Sweeping chronic fatigue study brings clues but not clarity to mysterious syndrome (deep phenotyping study)

At least it’s actually being researched now — instead of just telling people it’s all in their head, or they’re just depressed.

liv, 2 months ago in Sweeping chronic fatigue study brings clues but not clarity to mysterious syndrome (deep phenotyping study)

Expert reaction here..

bjoern_tantau, 2 months ago

GP and “expert” reaction:

https://swg-empire.de/pictrs/image/7115f00f-842f-4eff-8366-be147dddd9d4.png

liv, 2 months ago in Sweeping chronic fatigue study brings clues but not clarity to mysterious syndrome (deep phenotyping study)

Link to actual study: Deep phenotyping of post-infectious myalgic encephalomyelitis/chronic fatigue syndrome

liv, 3 months ago in Immunological Patient Stratification in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, Rohrhofer et al 2024 (full text)

Link to research press release: https://www.meduniwien.ac.at/web/en/ueber-uns/news/2024/news-im-februar-2024/chronic-fatigue-syndrome-number-of-patients-is-expected-to-double-due-to-long-term-effects-of-the-covid-19-pandemic-1/

liv, 3 months ago in CFS: number of patients is expected to double due to long-term effects of the COVID-19 pandemic: Scientists at MedUni Vienna have now identified possible biomarkers that could improve the diagnosis and treatment

Link to the study: https://www.mdpi.com/2077-0383/13/1/275

liv, 3 months ago in ME Research UK and the ME Association announce funding for a study that aims to create a diagnostic test for ME/CFS

Tldr: more work on the Nanoneedle!

Kornblumenratte, 3 months ago in AIM ImmunoTech Reports Positive Topline Results from Phase 2 Study Evaluating Ampligen® for the Treatment of Post-COVID Conditions

Rintatolimod

In den 1970 synthetisiert, seit 1997 für die Anwendung am Menschen zugelassen? Und jetzt gibt es eine proof of concept Studie mit 66 Leuten, die möglicherweise eine geringe Wirkung zeigt? Ich bitte meine Skepsis zu entschuldigen.

Sorry – Synthesised in the 1970s, approofed for human use in 1997? And now there is a proof of concept study with 66 participants showing possibly a tiny benefit? Sorry for being sceptical.

AndOfTheSevenSeas, 3 months ago in April 3-4 The 1st International Conference on Clinical and Scientific Advances in ME/CFS and Long COVID (free virtual registration)

I’m really hoping this conference bridges the gap between “long COVID” and vaccination status, that data is almost universally unavailable

Kornblumenratte, 3 months ago

the gap between “long COVID” and vaccination status

Which gap?

liv, 3 months ago in A break in mitochondrial endosymbiosis as a basis for inflammatory diseases (Abstract)

This is probably somewhat relevant to ME/CFS because of the role mitochondrial dysfunction appears to have in the disease.

liv, 4 months ago (edited 4 months ago) in New insights from the German exercise physiologist on how to pace with ME/CFS (especially in order to avoid viral reactivation through overexertion)

I (moderate) have been using the 30 second rule to do things like scrub a plate in stages. Not sure about the viral reactivation part but it does help me pace.