💉*7 | MD w/ #ME due to #LongCovid | rheumatology resident | regenerative med | vascular inflammation | scleroderma | harpist | they/them 🌈 views are mine
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Het klopt dat er nog veel onderzoek nodig is voor een behandeling gericht op oorzaken, maar er is al een flinke evidence based trukendoos om symptomen te verlichten. Als je niks meer kan is elk beetje verbetering keihard gewenst.
ALT Titel: niets doen is een keuze. Huisarts doet telefonisch spreekuur met Pt die te ziek is om te komen. Die vraagt: is er dan helemaal niks aan te doen, dokter? De dokter zegt: u moet niet zo op de klachten focussen, dan gaat het vanzelf over.
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People with ME “cannot wait for a cure before the harm stops.
Research is essential, and we need investment in it. But recognition, education, appropriate accommodations and respectful treatment are measures that can be implemented now.”
EFNA, the European federation of neurological associations has published a blog about harm in #MyalgicE, by Ona Albizu, PhD
efna.net/patients-with-me-ca…
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On the road to Amsterdam to present some of my team's latest research about #LongCOVID at @ISLCPAIS. Very excited to connect with colleagues and share ideas. I've been busy and not on here much, but I see that there has been controversy regarding the use of the phrase
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Want to know more about outcome measures for your triala? JR is there to present our poster! It's number 17 and he will be there on Saturday (not Friday).
Today marks the start of the @ISLCPAIS conference. I'll be there Wednesday and Saturday. Come say hi and discuss science and outcome measures at poster 17 on Saturday!
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Today marks the start of the @ISLCPAIS conference. I'll be there Wednesday and Saturday. Come say hi and discuss science and outcome measures at poster 17 on Saturday!
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Actually, let's make that 3 major studies. I forgot one in Norway involving the Lightning Process. No mention of any of them--despite 7,600 words related to militant online commandos of patients trying to censor science.
It's nice that @AlanLevinovitz has provided links to critics' pieces. (Is there a link to mine??) His "engagement" hasn't included an explanation or even a mention of why the story disappeared two major mind-body trials--one into Gupta, one into the Lightning Process.
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We have discovered that Alan Levinovitz's new book has already sold to publishers
And it's about psychogenic illness. No wonder he thinks Long Covid is 60-80% psychogenic & why he won't reconsider his framing. He is invested
That a major publisher @HenryHolt is running this raises serious concerns
ALT A screenshot of a book deal announcement on a website. On the left, the title reads "DEMONS BY ANOTHER NAME By Alan Levinovitz," classified as "Non-fiction: Health/Medicine" and dated "September 26, 2025." The main text reads: "Author of NATURAL Alan Levinovitz's DEMONS BY ANOTHER NAME, exploring the modern face of psychogenic illness, a ubiquitous and deeply misunderstood category of human suffering, and the revolutionary healing that might come once we reckon with the beliefs, human frailties, and institutional failures keeping us sick, to Tim Duggan at Holt, at auction, by Anna Sproul-Latimer at Neon Literary (world)." Below the text, the rights contact is listed as On the far right, there are icons for "Screenshot View" and "Submit Publication Data". "Alan Levinovitz's" is highlighted in yellow.
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How strange is it really that a considerable improvement in function in a population that doesn’t always feel tired doesn’t show up with an outcome measure that asks “how tired are you on a scale of 1 to 10”?
It would be strange if the objective effects of a life-changing drug simply didn't show up at all in subjective symptom measurement scores. Not only that: Wouldn't a pharma company bend over backwards to figure out a trial design that showcases life-changing results?
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Progress in mast cell activation syndrome: the global consensus-2 diagnostic criteria at six years
degruyterbrill.com/document/…
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Emory University, 38 participants. Single cell profiling found Long COVID immune cells act as if they keep seeing antigen.
B cells stayed activated, T cells showed exhaustion, and NK cells became dysfunctional, supporting persistent immune stimulation.
biorxiv.org/content/10.64898…
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Twee jaar na het doodgezwegen rapport van Jason Bhugwandass volgt hij met 'Eenzaam gestorven'. Kunnen de dossiers verplicht vrijgegeven worden @IGJnl ? Nazorg jongeren met ernstige psychiatrische problemen blijft uit, nog steeds geen erkenning - nos.nl/l/2617715
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De Long Covid ""expertisecentra"" die in 🇧🇪 België komen, zijn psycho-poli's. Expliciet cognitieve gedragstherapie als uitgangspunt. De minister noemt dit evidence-based, wat lachwekkend zou zijn als het niet actief gezondheidsschade zou toebrengen. Reactie van @NotRecoveredBel
Op de dag dat 🇳🇱@minvws de Long Covid expertisecentra wil sluiten in een bizar staaltje kortzichtigheid, zouden ze in België juist openen
Tenminste, ze nemen de naam over. Maar ik krijg niet bepaald de indruk dat ze biomedische wetenschap met specialistische zorg gaan combineren
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8) For these reasons, I think it currently doesn’t make much sense to push the 2-day CPET as an objective measurement of PEM and include it as an outcome measure in clinical trials.
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I do not know of many other illnesses in which patients spend significant time and energy identifying, implementing, and adapting therapeutic interventions, often without the guidance of a medical practitioner. Patients are absolutely desperate to "move forward".
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A new long COVID study found that standard autoimmune blood tests often looked normal. But when researchers tested patients blood directly against heart and blood vessel tissue, they found persistent immune reactivity - especially involving vascular tissue.🧵
Tissue-specific autoantibody signatures reveal immune alterations undetected by routine serology in long COVID
🚨83% of long COVID patients have rogue autoantibodies attacking their own heart, lungs & blood vessels, and every standard blood test misses it completely. VERY INTERESTING!
➡️In a UNIQUE Hungarian cohort of 114 long COVID patients versus 36 pre-pandemic controls, tissue-specific Western blotting detected autoantibodies in 83% of cases, with strong cardiovascular dominance,
➡️Vascular autoreactivity was markedly higher in long COVID (34% vs. 8%, p<0.05), cardiac (54%) and pulmonary (34%) signals trended elevated but did not reach significance( cohort size?),
➡️Autoantibodies were predominantly IgM-skewed, polyreactive (up to 8 bands per patient), and persisted longitudinally (mean 141 days), with new isotypes emerging over time,
➡️Standard ANA testing showed no group differences and zero clinical correlations, rendering it useless for detecting these alterations,
➡️Cardiac autoreactivity associated with hypertension and headache, overall autoreactivity correlated with anosmia/ageusia, female sex, CRP, BMI, creatinine, and troponin levels,
➡️The study used human cardiac, pulmonary, and vascular tissue homogenates.
➡️Findings were independent of routine serology and highlight an under-recognized immune component invisible to current diagnostics.
➡️“This persistent, IgM-skewed profile suggests ongoing immune dysregulation and may reflect a previously underrecognized component of the immunological response in long COVID, highlighting the need for targeted immunodiagnostic approaches beyond routine serology.”
‼️Why this is shocking:
It proves that in 83% of long COVID patients, the immune system is actively producing autoantibodies that directly target their own heart, lung, and especially blood-vessel tissues, yet every standard blood test (ANA HEp-2) comes back normal.
These rogue antibodies are polyreactive, IgM-dominant, persist for months, and keep evolving.
They correlate with real symptoms (anosmia, hypertension, headache) and lab markers of damage (troponin, CRP).
‼️In other words:
The majority of long COVID sufferers have smouldering, organ-specific autoimmunity that is completely invisible to routine diagnostics. Doctors are flying blind while patients’ tissues are quietly under autoimmune attack.
🤔As far as I know, this is the first direct evidence of hidden, cardiovascular-dominant tissue autoimmunity driving the chronic L0ngC0vid phase! #BookMark
#AvoidSars2 #AvoidReinfections
link.springer.com/article/10…
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8 jaar geleden adviseerde de gezondheidsraad multidisciplinaire poliklinieken voor de chronische ziekte ME 👇
Nu is er nog altijd 0 regulier medisch zorgaanbod voor ME, niks.
Dat is een medisch schandaal, maar het ontstijgt dat niveau ook: het is een politiek schandaal. Het is veel te makkelijk om verzekeraars en artsen de schuld te geven, als het volledige zorgstelsel bepaalde ziektes meedogenloos weigert.
In het beschaafde land wat Nederland pretendeert te zijn, laat je niet al decennia tienduizenden ernstig zieke patiënten zonder enige zorg creperen.
En nog altijd zijn er institutionele "platte-aarde gelovers" die stapels bewijs negeren en deze ziekte als psychosomatisch duiden, met ziekmakende "behandelingen" en medische gaslighting tot gevolg.
Deze wanpraktijken zijn het voorbeeld waarop de schandalen van Long Covid en andere PAIS zijn geënt.
En voor alle duidelijkheid: nee, ME patiënten hebben, vanuit de opzet al, geen toegang tot de zorg in de zeer tijdelijke Long Covid expertisecentra.
12 mei is ME awareness dag. Wees bewust van dit medische schandaal wat zich al decennia afspeelt.
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En dan weet ik weer: De zachte krachten zullen altijd overwinnen. Wat een liefde! 🧡
Dank jullie wel namens #Lotte
@NietHersteld @FvRhijn #MECVS
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#ME-AwarenessMonth: over een Veilig Thuis melding bij een kind met ME/CVS, de strijd die we daarna voerden, wonnen, het onbegrip en de vooroordelen waar je op stuit bij artsen bij deze invaliderende ziekte. sent.amsterdam/2026/05/02/he…
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New Scientist article questions value of exercise for Long COVID, notes flaws in clinical trials, quotes @TomKindlon, @sunsopeningband, me and others: virology.ws/2026/04/23/trial…
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