Ingo @IngoMECFS

Call for participation #Labyrinth #Documentary Many heartful Thanks to Talia @FVulneraries 🙏💙

Finding Vulneraries @FVulneraries

2 weeks ago

A call to action! Looking for chronically ill people to participate in the documentary called LABYRINTH so help raise awareness for the millions of sick people that have been ignored for way too long. Please watch the video for more information. For more details 👇🏼

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Ich mein, POTS wird jetzt schon in @JAMA_current reviewed. Wäre es da nicht an der Zeit, dass sich manche Gutachter, die POTS und die daraus entstehenden Beeinträchtigungen nicht korrekt einschätzen können, endlich mal fortbilden? Im Sinne der Betroffenen.

JAMA @JAMA_current

2 weeks ago

#PosturalOrthostaticTachycardiaSyndrome (POTS) is a chronic autonomic disorder defined by orthostatic symptoms with a sustained heart rate increase within 10 minutes of standing or head-up tilt, without orthostatic hypotension. 🔗 ja.ma/4zzP3Kn

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“I can't think of many other diseases where the more severe your symptoms are the worse your care is” Karen Hargrave on caring for her husband James, who developed very severe ME following COVID. #MECFS #LongCovid

I keep chatting with patients with Long COVID/ME and no place to turn to in their country to get help. This simply cannot stand. So we're going to solve it. We're going to make a list of every country in the world and fill in the following information: - Official organizations for LC/ME, if available - Unofficial patient group chats - What the vibe is as far as recognition, access to specialists, medications If there is no group chat for patients in that country, help will be provided for them to create one and recruit patients. Then, if they do not already exist, help will be provided to create the the following resources for each country: - a list of recommended doctors - available treatments in that country and how to get them - how to navigate the local medical system On a regional level, group chats will be created for country organizers to exchange ideas to level up every country in the region. On a world level, the United Nations of Long COVID and ME Discord will be created, for organizers from each country. With the power of the internet, we will solve information asymmetry and make sure no patient will be left behind, no matter which country they live in. We're going to need a lot of help, and help can come from anywhere. So if you're interested, DM me or reply to this tweet!

We're pleased to announce the English version of our transdisciplinary care guide for people with severe #MECFS. We hope it will help family caregivers, healthcare professionals, and policymakers improve care for one of the world's most underserved patient populations.

Thank you, PolyBio and the Mount Sinai CoRE Clinic team, for advancing this thoughtful clinical trial of low-dose Rapamycin for Long Covid. It is encouraging to see researchers carefully examining which patient subtypes may benefit most from targeted immune modulation in infection-associated chronic illness. One of the key mechanisms through which Rapamycin may exert beneficial effects in Covid and Long Covid centers on its regulation of the PI3K/Akt/mTOR signaling pathway, which SARS-CoV-2 activates even before the virus fully enters host cells. The binding of spike proteins to cellular receptors triggers the Src/PI3K/AKT cascade at the cell surface. This early activation enhances protein synthesis to support viral replication, inhibits autophagy that could otherwise degrade viral material, and promotes inflammatory imbalances such as elevated Th17 cell differentiation alongside reduced Treg responses. These changes ultimately contribute to cytokine dysregulation and tissue damage (Fattahi et al., 2022). Rapamycin inhibits mTORC1, interrupting the cascade at a critical downstream point. This leads to decreased production of proteins required by the virus, restoration of autophagy processes, and moderation of the hyperinflammatory state. The pathway also directly influences mast cell behavior. Coronavirus spike proteins stimulate mast cell degranulation via the Src/PI3K/AKT/Ca2+ signaling route, leading to the release of pro-inflammatory mediators that drive many symptoms in both acute and chronic phases of the illness (Zhang et al., 2025). In addition, PI3K/Akt signaling can suppress autophagy specifically within mast cells during viral infections. This suppression heightens mast cell activation and amplifies inflammatory lung injury, an effect observed in models involving viral and secondary bacterial challenges. Inhibiting the pathway counters these changes (Tang et al., 2023). Given that activation begins upstream through receptor engagement prior to entry, a multimodal strategy makes strong sense. Rapamycin provides effective control of the pathway. Pairing it with mast cell stabilization approaches that act at the effector level can create complementary benefits by addressing both the signaling dysregulation and the mast cell-driven inflammation that characterizes many Long Covid cases, especially in subtypes with mast cell activation features. This layered approach has potential to improve symptom control and overall outcomes. The trial’s focus on identifying responsive subtypes positions it well to explore these possibilities and refine treatment approaches. Wishing the Mount Sinai team and all participants continued progress and meaningful outcomes. Should the team desire additional mechanistic insights or further related research summaries, I would be glad to provide them. References Fattahi, S., Khalifehzadeh-Esfahani, Z., Mohammad-Rezaei, M., Mafi, S., & Jafarinia, M. (2022). PI3K/Akt/mTOR pathway: a potential target for anti-SARS-CoV-2 therapy. Immunologic Research, 70(3), 269–275. doi.org/10.1007/s12026… Zhang, S., Xu, C.-L., Wang, J., Xiong, X., & Wang, J.-H. (2025). Spike proteins of coronaviruses activate mast cells for degranulation via stimulating Src/PI3K/AKT/Ca2+ intracellular signaling cascade. Journal of Virology, 99(5), e0007825. doi.org/10.1128/jvi.00… Tang, Y., Su, R., Gu, Q., Hu, Y., & Yang, H. (2023). PI3K/AKT-mediated autophagy inhibition facilitates mast cell activation to enhance severe inflammatory lung injury in influenza A virus- and secondary Staphylococcus aureus-infected mice. Antiviral Research, 209, 105502. doi.org/10.1016/j.anti…

Implications of RNA virus persistence for post-acute sequelae and chronic inflammatory syndromes 🚨Textbooks are obsolete. I was right again! The bad news SarsCoV2 brought for all those rooted ID/Virologists, their textbooks of acute RNA viruses is dead according to this new review! ➡️This new and very interesting review synthesizes evidence that many RNA viruses long considered strictly acute (SARSCoV2, influenza, RSV, measles, CHIKV, EBOV, etc.) can leave behind persistent viral products like replication-competent genomes, proteins, mutated forms, and non-standard viral genomes (nsVGs), even months to years after infectious virus is cleared. ➡️Study main findings: - Persistence occurs in diverse reservoirs: tissue macrophages, dendritic cells, ILC2s, fibroblasts, neurons, and immune-privileged sites (brain, testes, joints, gut), - Pathogen-Associated Molecular Patterns(PAMP’s) products continuously stimulate innate sensors driving chronic low-grade inflammation and tissue dysfunction, - Documented links include longC0VID (SARSCoV2), subacute sclerosing panencephalitis (measles), persistent arthralgia (CHIKV), post-Ebola syndromes, and virus-driven asthma-like disease (Sendai virus model), - nsVGs and immune-evasion tactics (IFN suppression, MHC downregulation, antigenic variation) help viruses or their remnants survive in host cells, - Animal models show that removing specific persistently infected immune cells reduces chronic inflammation, proving a causal role, ➡️The review challenges the classical view that acute RNA virus infection reliably ends in complete clearance and durable protective immunity(= classic textbooks!), ➡️Reinfection impact is not directly addressed, the authors focus on post-acute/chronic sequelae rather than susceptibility to new infections. ‼️So, the comfortable assumption that acute RNA virus infections are self-limiting events followed by some kind of "sterilizing immunity" is outdated. Persistent viral products can instead establish a smouldering inflammatory state that drives debilitating chronic disease. For SARSCoV2 and similar viruses, this means the real long-term cost may not be (re)infection itself but the failure to ever fully resolve the first encounter, leaving behind reservoirs that keep the immune system chronically engaged and the host at risk of progressive organ damage. It just became a lot more complicated! TEXTBOOKS OUT….#MITIGATION and #CLEANAIR IN! nature.com/articles/s4159…

Dr. Henry Van Brocklin and his UCSF team are investigating the novel radiotracer [18F]F-AraG as a biomarker of long-term immune dysregulation in Long COVID. When paired with PET imaging, the tracer has shown persistent T cell activation in tissues such as the brain, lungs, gut, spinal cord & bone marrow. “Even in cases where the Long COVID symptoms were not associated with the [organ] phenotype, we actually saw elevation there,” said Van Brocklin. The method is actively being tested in a clinical trial of Ensitrelvir for Long COVID to determine measurable changes in immune activation following treatment versus placebo.

Jetzt auch auf Deutsch verfügbar: "Verkannt, verleugnet, vergessen: Die grausame Behandlung komplex chronisch Kranker" von @CK65375 , @FlorianHeigl1 & mir. Ein umfassender Text zu #MECFS, #LongCOVID, #POTS, #MCAS, #SFN, #hEDS, #CCI, #Fibromyalgie, #FQAD, #Lyme und weiteren überlappenden Erkrankungen – über Psychologisierung, systemische Grausamkeit & den dringend benötigten Paradigmenwechsel. ottokolbl.medium.com/me-cfs-long-co…

1) 🇳🇿 A survey in New Zealand among 333 ME/CFS and Long Covid patients found that half of the respondents had experienced food insecurity in the past 12 months.

Thank you to some amazing colleagues who took time and precious energy to craft this rapid response to the recent @bmj_latest piece. When people try to hijack #LongCOVID, #MECFS and other complex illness as psychosomatic it is important we strike back: bmj.com/content/389/bm… 1/

#VolleZustimmung ... für mich gehören neben infektiösen Triggern auch alle nicht - infektiösen Trigger beim Namen genannt und wie @CK65375 schreibt, es gehören die möglichen Verkettungen und Prä-dispositionen dazu, in die Aufklärung und in die Forschung. Das ist überlebenswichtig, auch weil die jahrelange Suche nach dem: "Was habe ich eigentlich alles noch?" nur so aufhören kann. Und nur so kann dementsprechendes Wissen in der Ärzteschaft, aber auch in der Gesellschaft und auch in der Politik vermittelt werden. Patientenorganisationen sollten möglichst vollumfänglich aufklären, - das ist längst überfällig - nicht scheibchenweise oder schrittweise. Aufklärung, das ist die Aufgabe der Patientenorganisationen und ihre Verantwortung zugleich! Tut es für Eure Kinder und all die jungen Erwachsenen, deren Zukunft auf dem Spiel steht. Unzulängliche Aufklärung schadet vielen Betroffenen und ehrlich gesagt, #MEcfs kommt selten allein. Aber neuerdings und gerade im Zuge der sogenannten Forschungsdekade sogenannter #postinfektiöser Erkrankungen wird so getan, als ob ME a) eine reine 'postinfektiöse' Erkrankung ist b) immer solo auftaucht. Beides ist medizinisch falsch. Ausserdem kann man in heutigen Zeiten logischerweise davon ausgehen, dass sehr viele Betroffene #severalHits hatten und weiter haben werden. #POTS #SmallFiber #MCAS #hEDS #EDS #Marfan #Unfälle #Operationen #Schleudertrauma #toxischeExpositionen #nichtInfektiöseTrigger #InfektiöseTrigger #EBV #Herpes #Covid #LongCovid #LongLyme #Borreliose #Bartonella #babesien &Co. #CCI #Medikamentenschäden #FQAD #FlagylToxicity #Impfschäden #PostVac #MitochondrienSchäden #Nervenschäden #MikrozirkulationKaputt #BindegewebeKaputt #LongList #LongTragedy #Care4Complex

Christina Koch @CK65375

3 months ago

Es ist nachvollziehbar, dass bei ME/CFS-Organisationen ME/CFS als zentrale Erkrankung im Fokus steht. ME ist der gemeinsame Nenner und das Zugpferd, das Aufmerksamkeit, Gelder und politische Unterstützung mobilisiert. Das verstehe ich vollkommen. Dennoch halte ich es für falsch

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@Aguirre1Gustavo thx

𝐓𝐡𝐞𝐫𝐚𝐩𝐞𝐮𝐭𝐢𝐜 𝐩𝐫𝐢𝐧𝐜𝐢𝐩𝐥𝐞𝐬 𝐨𝐟 𝐆𝐋𝐏-𝟏-𝐑𝐀 𝐢𝐧 𝐌𝐂𝐀𝐒 Since it came up in a discussion about therapy-resistant MCAS: How do GLP-1 receptor agonists actually work here? The therapeutic principle is based on several synergistic mechanisms 1/9

Eine SARS-CoV-2-Infektion ist mit erhöhtem Risiko für die Entwicklung einer chronischen subklinischen Myokardschädigung in der Allgemeinbevölkerung verbunden Personen, die während der Pandemie eine SARS-CoV-2-Infektion hatten, zeigten im Durchschnitt höhere Troponin-I-Werte …

Harry Spoelstra @HarrySpoelstra

3 months ago

Impact of SARS-CoV-2 infection on subclinical myocardial injury in the general population: the Trøndelag Health Study 🚨NORWEGIAN CONFIRMATION BOMBSHELL: COVID infection leaves lasting, hidden scars on the heart muscle, even years later. "An elevated cardiac troponin I (cTnI)

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⚠️‼️It seems the story is repeating itself… or perhaps it never really changed. In ME/CFS, higher salivary HHV-6/HHV-7 loads had already been associated with a worse clinical phenotype. And HHV-6 has been appearing for decades across immune-mediated/autoimmune diseases, including multiple sclerosis, Hashimoto’s thyroiditis, systemic lupus erythematosus, autoimmune hepatitis and connective tissue diseases. Perhaps the surprising thing is not that HHV-6 appears again in Long COVID, but that we keep treating it as if it were unexpected. Another piece of the same pattern: persistent infection, immune exhaustion, reactivation of latent herpesviruses and autoimmune/immunopathological contexts. If a patient shows repeated reactivations of HHV-6 or other herpesviruses, this should be treated with antiviral therapy directed at the specific virus involved — not dismissed as incidental. ME/CFS: frontiersin.org/journals/medic… Multiple sclerosis: pmc.ncbi.nlm.nih.gov/articles/PMC39… journals.plos.org/plosone/articl… academic.oup.com/jid/article/18… frontiersin.org/journals/immun… Hashimoto’s thyroiditis / autoimmune thyroiditis: journals.plos.org/plospathogens/… Systemic lupus erythematosus / lupus: pmc.ncbi.nlm.nih.gov/articles/PMC11… link.springer.com/article/10.118… link.springer.com/article/10.118… tandfonline.com/doi/full/10.31… Autoimmune hepatitis: link.springer.com/article/10.118… HHV-6 / autoimmunity review: mdpi.com/2076-2607/12/2…

@sibylle_berlin Oh Gott du arme Socke 🫂❣️

For #LongCovid Awareness Day, we’re releasing the 2026 Long Covid Fact Sheet! This is a list of key statistics about LC, using recent data to reflect contemporary risks. We hope this will be useful for journalists, policymakers, patients, & others! patientresearchcovid19.com/2026-long-covi… 1/

COVID-19 ist signifikant mit einem erhöhten Risiko für Nierenerkrankungen assoziiert, darunter kurzfristige Schädigungen und langfristige chronische Erkrankungen In dieser großen Studie mit Erwachsenen in den USA ist eine COVID-19-Infektion mit einem erhöhten Risiko für …