One fine day, people with symptoms of #MECFS will walk into a doctor's office and can expect to be diagnosed & subgrouped according to biomarkers. They will receive treatment, & they will be met with respect. Patients who have been harmed will largely become a story of the past.

RT @cstroeckw: One fine day, people with symptoms of #MECFS will walk into a doctor's office and can expect to be diagnosed & subgrouped ac….

RT @SabineHermisson: Ein seltener Abend zu zweit: .die Eröffnung des Festivals La Gacilly - Baden im Stadttheater Baden mit den bewegenden….

I ran around like this for years, severely harming my body. How many people are out there, undiagnosed, thinking they just suffer from 'anxiety' while they actually have dysautonomia and ME/CFS? Horrific!.

RT @MECFSSD: Congrats to Dr. Maureen Hanson, a leading #MECFS researcher, on winning the 2025 SUNY Chancellor’s Award for Excellence! Her g….

Is anyone on here on the 'Lerner Protocol' — high-dose Valacyclovir (≥3g) plus Valganciclovir (Valcyte) at the same time? Thank you!.

It's probably not strictly necessary for researchers to deeply understand how ME/CFS presents and evolves in patients over time, but without that grounding, without having seen hundreds of cases, some of their ideas are certainly at greater risk of missing the mark.

"What we call the beginning is often the end.And to make and end is to make a beginning. The end is where we start from.".

ME/CFS community: Have you also been diagnosed with hydrogen sulfide (H₂S) SIBO?.Thank you! 💙🙏. PS:.If yes, please let us know how severe you are in the comments!.

RT @drgurner: An easy skill that will save you down the road?.Be immune to flattery.

"Do you take pride in your hurt? Does it make you seem large and tragic? . Well, think about it. Maybe you're playing a part on a great stage with only yourself as audience.".

I've always felt that ME/CFS (at least in a subgroup) will prove to be similar to, though distinct from, the long-standing theory for what causes post-polio syndrome: compromised nerves compensate, but their compensatory mechanisms eventually decline due to 'metabolic overload.'.

RT @Gmwetz: @A161624650 Meiner läuft noch bis zum 13.06 .Die Spenden gehen an PolyBio, OMF und We&ME.

RT @A161624650: Habe knapp 30.000 € mit meiner Geburtsgs Spenden Aktion für die ME/CFS Forschung gesammelt. 10.000 über gofundme .geht an….

We need to radically scale up research in this space, not just for hEDS, but for ME/CFS as well. 1.What pathophysiological mechanisms are active at the neurovascular interface?. 2.What molecular pathways drive the structural changes in connective and peripheral nerve tissue?. If.

"Our findings redefine the ECM as a long-lived instructive compartment that encodes injury memory and promotes maladaptive regeneration, positioning it as a potential therapeutic target in chronic inflammatory disease.".

RT @Tarmeim: Word of advice

The tendency to ignore pathogens as triggers for chronic illness and aging, both in medicine & public perception, may reflect a kind of collective unconscious trauma. For most of human history, we had no real means to fight infections. This helplessness lives on as denial today.

Musings of a layman:.If persistent viral or microbial antigens contribute to ME/CFS-like syndromes and if post-mitotic cells (e.g., neurons, myocytes) are involved, then broadly unleashing the immune system could risk irreversible 'collateral' damage.

CW:. A newly severe patient asked me, “How have you been doing this for so long in such a state?” Then asked me to share what I told him because it helped:.“I died in 2016. Everything since—even the worst of the worst—has been a bonus. One day I’ll either be dead forever or go.

Are there any ME/CFS patients, especially those with severe or very severe illness, who are on high dose Valacyclovir (≥3g)? Any experiences? 🙏❤️.