Clinging to GET is clinging to a lie that harms the most vulnerable. TY davidtuller NEW video/interview to educate & help people 💙🦋 with Dr Peter Rowe WATCH here 👇 m.youtube.com/watch?v=qsJAEG…

Please 🙏 do share the video link above 👆 with your followers - helpful info ℹ️ in one place re #orthostaticintolerance plus Dr Rowe’s brilliant book 📖 link in YouTube description! Vlad Vexler Binita Kane PoTS UK #MEAction Network Visible Long Covid SOS @longcovidsos.bsky.social Oonagh Cousins

“Even mild illness can cause neurological damage.” This was one of the key messages in Putrino Lab talk at the International #MECFS ME/CFS Research Foundation Conference 2025 at Charité Berlin. Chronic illness is not static. Neither must our research and care structures be. #MEAwarenessDay

Fridbjörn Sigurdsson from Iceland shares the journey of building the Akureyri Clinic for #MECFS and Long COVID. He asked one patient: „If you could choose – Long COVID or cancer?“ The answer was clear. And deeply sobering. #MECFS #Iceland #MEAwarenessDay

Klaudia Kedor presents the CFS_CARE study from Charité: #Reha in Kreischa was compared to no treatment. After 12 months—no difference. Some patients improved, others worsened. Conclusion: This rehabilitation concept had NO effect. #MEAwareness #MECFS #PEMisnotnegotiable

. Michael Stingl emphasizes: PEM is the crux of ME/CFS. To truly understand the disease, we must identify and prevent PEM. Without this focus, every treatment becomes a risk. #MECFS #PEM #PEMisnotnegotiable #MEAwarenessDay

The Off-Label process in Germany? Slow & blocked by bureaucracy. While Austria already published a list for #MECFS , Germany remains stuck in cautious committees. Asked about the difference, Bernhard Wörmann (Charité) said: “It’s an evidence and eminence system.” #MEAwarenessDay

David Systrom, USA, on circulatory dysfunction in #MECFS:Patients show impaired systemic oxygen extraction & small fiber neuropathy- confirmed in large cohorts. Pyridostigmine may improve outcomes by stabilizing autonomic dysfunction. Clear evidence of measurable pathophysiology.

.Rob Wuest (NL): Muscle changes in #MECFS & LongCovid are pathological – not caused by deconditioning. Exertion above the #PEM threshold causes measurable damage. We need more muscle biopsies and targeted research – not outdated assumptions. #PEMisnotnegotiable #MEAwarenessDay

Jürgen Steinacker, Ulm Muscle biopsies show: Mitochondria are structurally damaged in #MECFS and PCS – cristae destroyed, sarcomeres affected. EPILOC data: 43%still sick after 17 months. Calling this just “fatigue” misses the mark entirely. #MEAwareness #MECFS #MEAwarenessDay

At the #MECFS conference, Christian Puta presented a systematic overview of potential PEM mechanisms: microcirculatory impairment, mitochondrial dysfunction, immune dysregulation, and autoantibodies. Conclusion: #PEM is multifactorial- and increasingly scientifically understandable.

Karl Johann Tronstad (Norway) shows: ME/CFS is a systemic disease involving immune, vascular, and metabolic dysfunction. This complexity also helps us understand PEM. A path toward biomarkers and targeted therapies is becoming clearer. #MECFS #Charité2025 #PEM #MEAwarenessDay

Jeroen den Dunnen(NL): IgG antibodies from Long COVID patients transfer symptoms to mice – with distinct symptom profiles depending on the patient subgroup. Strong evidence for autoimmune mechanisms. Clear parallels to #MECFS. #Autoimmunity #PEM #MEAwarenessDay

Takashi Yamamura,Japan presents evidence that GPCR autoantibodies and CNS alterations are central to #MECFS pathophysiology. Findings include disrupted brain connectivity, cognitive deficits, and autonomic dysfunction—supporting an autoimmune mechanism. #MEAwarenessDay

.Rob Wüst (NL): Muscle changes in #MECFS & LongCovid are pathological – not caused by deconditioning. Exertion above the #PEM threshold causes measurable damage. We need more muscle biopsies and targeted research – not outdated assumptions. #PEMisnotnegotiable #MEAwarenessDay

New unpublished data by Franziska Sotzny, Berlin: Autoantibodies in #MECFS and PCS mimic EBV peptides and bind to human targets like adrenergic receptors and neuronal antigens. They correlate with fatigue, #PEM, brain fog, and dysautonomia. #Autoimmunity #EBV #MEAwarenessDay

Christiana Franke, Charité: Autoimmunity in #MECFS and PCS may resemble mechanisms known from NMDAR encephalitis. Autoantibodies targeting neuronal structures could drive CNS dysfunction. Urgent need for diagnostics and clinical translation. #Autoimmunity #PEM #MEAwarenessDay

Prof. Sawitzki, Charité: #MECFS patients show immunological subgroups with activated, partly autoreactive B cells and T–B cell interaction. These profiles may enable treatment stratification &identification of novel therapeutic targets. #MEAwarenessDay #Immunology #Autoimmunity

Anna Aschenbrenner, Charité: Transcriptome analysis reveals immune dysregulation in #MECFS. Distinct monocyte & NK cell profiles suggest persistent immune activation independent of the initial infection. A step closer to biomarkers for diagnosis and treatment. #MEAwarenessDay

Day 2 of the #MECFS Conference at Charité Berlin: Autoantibodies, immunoadsorption, mitochondria, PEM – research is getting closer to the core. I’m sharing for those too sick to attend. You are not forgotten. #MEAwarenessDay #MillionsMissing #PEMistnotnegotiable