Imagine if this was usual business. The norm. Why in 2026 it's still so damn dfficult?

I was diagnosed with POTS years before COVID When the first cases of Long Covid were reported, I thought we would see breakthroughs in POTS, MCAS, ME/CFS and more. I assumed the problem was too big to ignore. Unfortunately I was wrong, and most LC patients have been abandoned like the rest of us.

Medscape: Where Is the Medical Home for Postinfectious Illness? "COVID pandemic brought a surge of more patients with POTS & infection-associated chronic illness. What had once felt like a rare or niche diagnosis now seemed to be everywhere, impossible to ignore" www.medscape.com/viewarticle/...

📣 En ce début 2026, rassemblons-nous à #Marseille le 7/02 pour dénoncer la condition des malades d'encéphalomyélite myalgique - #EMSFC ! Les infos ici : bit.ly/voxem-marsei... Report en cas de 🌧️. Vous ne pouvez pas venir ? Pas de panique, il y aura d’autres occasions ! 1/2

Only a "hypothesis" paper? I remember Cort Johnson doing a round-up of this topic nearly a decade ago... www.healthrising.org/blog/2017/11...

4) They suspect that dUTPase disrupts the immune system and triggers an antibody response in ME/CFS. They have investigated this using a long-term NIH grant. Some data supporting their theory: www.sciencedirect.co... pmc.ncbi.nlm.nih.gov... onlinelibrary.wiley....

1) OMG we did it‼️‼️ In this film for #MEawarenessmonth, five medical doctors open up about living with #PAIS/#IACC conditions like ME, #longCOVID, and chronic #Lyme. It’s a format that I believe has never been shown before. They speak candidly about their experiences youtu.be/J0ywwLIfH_w?...

Kind reminder #GreatestMEdicalScandal

Samedi 7 février, on se mobilise pour dénoncer la situation déplorable des malades de l'EM/SFC en France. Rdv à Marseille !

Could we find some way to erase the Fukuda criteria from the minds of all researchers? I am willing to try hypnosis at this point. Maybe Fukuda himself could ask them to stop. I’m guessing that he knows that it’s obsolete.

3/ Here is another list of symptoms and their prevalence rates from a cohort with ME (n=420) From: #MyalgicEncephalomyelitis--a persistent enteroviral infection? E G Dowsett, A M Ramsay, R A McCartney, E J Bell. Postgrad Med J. 1990 Jul;66(777):526-30. pubmed.ncbi.nlm.nih.gov/2170962/

By now I think there is no doubt that the type of 'damage' in the brainstem in #pwME cannot be seen with MRI but also there is no doubt whatsoever there is smtg happening there.

Dismiss? One of the first ultra obvious symptoms I had. I went from 4 or 5 times a day to the bathroom to 25 overnight. Alongside PEM + skyrocketing levels of insuline resistance. All overnight... I knew NOTHING about ME but these 3 things are immediately recognisable.

I thought I would repost this to highlight again some of the many varied symptoms that can be found in #MyalgicEncephalomyelitis/#ChronicFatigueSyndrome Particularly relevant when similarities with the #LongCovid presentation in some people are being missed #MEcfs #CFS #PwLC 1/

Imagine where we would be today if #pwME had been listened & believed and the core symptom of #ME/CFS properly observed, tracked and researched? Instead we “needed” a pandemic and hundreds of thousands of new cases of people suffering from #PEM to fight globally for its recognition, care & research!

Was verursacht all die Symptome von Long COVID und ME/CFS? Der Hirnstamm könnte der Schlüssel sein. Eine Schädigung dieses wichtigen Teils des Gehirns könnte erklären, warum diese Erkrankungen so viele Körpersysteme betreffen. Im Mittelpunkt dieser Hypothese steht die Erkenntnis, …

From Medical University of Plovdiv, a study of 190 people found that patients with ME/CFS and Long COVID had nearly identical immune and inflammatory changes. Both groups showed lower CD8+ T and NK cells, and higher IL-6, TNF, IL-10, and IL-4. www.mdpi.com/2227-9059/13...

From Germany: Evidence of Impaired Neuroimmune System in Post-COVID Syndrome—A Whole Brain Magnetic Resonance Spectroscopy Study onlinelibrary.wiley.com/doi/10.1002/... Screenshot from latest Science for ME weekly update #LongCovid #PASC #PwLC #postcovid #postcovid19 #COVIDBrain #NeuroPASC

No strings: we don’t ask to be authors in future pubs. Rather, we make the @decodemestudy.bsky.social data available so that its value is enhanced, & #MEcfs research is accelerated. #openscience

MS drug commercials live in a fantasy world. Rooftop DJs. Rock climbers. Endless energy. Zero symptoms. Reality? Fatigue, heat intolerance, brain fog, medical debt, and just trying to make it through the damn day. These ads do no favors for people with #MS mssucks.co/commercials

Really worth a read. Clear roadmap, helping us to make sense of all the current leads and to what to keep an eye for in 2026. Thank you!

Fast jede Woche findet man im Internet einen Artikel in einer Lokalzeitung, in dem ein Patient mit #MECFS seine Geschichte erzählt. Auch diese. Ein guter Bericht, auch über die Hoffnung, dass durch die hohen Fallzahlen der Forschungsdruck weiter zunimmt. www.allgaeuer-zeitung.de/immenstadt/n...

8 ) We suspect that something similar happened in the ME/CFS brains studied in the Netherlands Brain Bank. ME/CFS doesn’t include an autoimmune response against orexin neurons, but perhaps another process is having the same side-effect of silencing CRH neurons.

“Researchers found that new cases of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) were 15 times higher than before the COVID-19 pandemic” recovercovid.org/news/recover...

German public radio station Deutschlandfunk has published a 3700-word article & radio piece on how #MECFS & #LongCovid impact life & autonomy. Article is titled: "Die Grenzen der Autonomie Wie Post-Covid & ME/CFS das Leben verändern” Translation www-deutschlandfunk-de.translate.goog/wie-postcovi...

No French fries. No potato chips. No baked potatoes. No mashed potatoes. No stew. No potato soup. No potato starch. No roasted potato. No potato salad. They deserve that much of my illness for the smug fucking prejudice. I wish no potato on all of them.

I try not to become so bitter a person that I would wish my long covid on anyone. I don’t wish the crushing fatigue, the heart problems, the weight gain, the hair loss, inability to exercise, the shattered immune system, on anyone. But I do fucking wish none of them could ever eat a potato again.

I’m actually not #OneOfTheTwo people out there #SaltingTheVibes in my respirator, because my post-viral disability has left me homebound. So thanks @weeklyshowpodcast.bsky.social for making the world just a little bit more hostile for my kids, #TwoOfTheTwo out there trying to protect their mother.

Yep. This post sums it up. If anything, it shows that those public figures 'updating' themselves and sharing about the #GreatestMEdicalScandal have double the merit. It takes true humility and curiosity to learn about us (usually an already rare feat if you are 'famous').

Health Rising: Something in the Blood” Again! ME/CFS & Long COVID Serum Locks the Muscles Down “..both diseases..the mitochondria in the muscles appeared to be under severe stress…mitochondria in muscle tissues exposed to ME/CFS serum..were eating up oxygen..” www.healthrising.org/blog/2025/12...

Why I am not surprised in the slightest? I think everyone with #ME has experienced the horrors of realising first hand your cardiac health even in your thirties is dependent on having a functional central/autonomic nervous systems.

Christmas can be a difficult time for people with chronic illness. Thinking of everyone with severe #MECFS and #LongCovid, particularly those who are living alone or isolated in darkened rooms.

y en ambos casos es fascinante la fragilidad y la fortaleza del cuerpo. no te aguanta un trombo, pero una enfermedad crónica te pilla de joven y no te suelta hasta que te ha matado en vida cien veces

una cosa en la que pienso a menudo es que mi abuela antes de irse, con sus noventa y pico años y todos sus achaques, estaba casi perfecta en cuanto a funcionalidad, y en cambio yo a mis veintipico estoy prácticamente dependiente total y aquí sigo, viva y ella no. es chocante la ironía

We've just published a pre-Christmas update on our work over the last few months. Wishing everyone a peaceful break and see you all again in the new year 💜 www.physiosforme.com/post/a-chris...

December 24th. Thank you for being #ThereForME, Rosie Barrett! Rosie is a carer to her sister Alice and was featured this year by BBC Spotlight championing our #FundThePlan campaign. Nominated by Lauren. ✨

Bonus points if you noticed our post for Dec 21 was missing! Here it is now: Thank you for being #ThereForME, Dr @binitakane.bsky.social ! Binita is a private consultant w a special interest in ME & Long Covid, a #ThereForME Ambassador + fierce advocate for pwME. Nom'ed by @alexisme.bsky.social#ThereForME#ThereForME✨

From Italy, Greece & Spain: Long-term immune and epigenetic dysregulation following COVID-19 www.sciencedirect.com/science/arti... Screenshot from latest Science for ME weekly update #LongCovid #PASC

It’s like déjà vu every time. Why do so many (nearly all) ME patients have to go through this trauma when facing doctors?

December 23rd. Thank you for being #ThereForME, Jenny Wilson! Jenny is a long-standing advocate for people with ME and plays a pivotal role organising Dr Weir’s ME clinic. Nominated by Phoebe. ✨

"Two Rabbits with a Sled' (1894) illustration by celebrated English author Beatrix Potter #Womensart ❄️

Short German TV report on children in Hamburg with ME/CFS following Covid. Families say hospital services believe it has a psychological component, and the lack of diagnosis has resulted in child welfare reports when children are unable to attend school.

December 22nd. Thank you for being #ThereForME, Sir Ed Davey & the Lib Dems @libdems.org.uk! This year the LibDems have been key players championing the need for improved support for people with ME in parliament. Nominated by Jonah Weisz @weiszguy.bsky.social#ThereForME✨

When coming down with #ME 4y ago I felt betrayed and dissapointed by all parties in the UK like never before in my life. I have never been a 'one-issue' voter but the treatment of #pwME/LC is so scandalous and criminal, so disabling, that everything, including politics, reduced to that... 1/3

March 31, 2020:

"an expert discussion took place in the German Bundestag on the national decade against post-infectious disease." Video www.bundestag.de/ausschuesse/... Google English translation of summary www-fatigatio-de.translate.goog/aktuelles/de... Screenshot from Science for ME update #LongCovid #MEcfs

Excellente analyse de @privilegienschreck.bsky.social 👉🏻 « La gestion actuelle du #longcovid et du ME/CFS menace de s'étendre et de se constider en tant que paradigme global de politique de santé. » www.akweb.de/bewegung/lin...

8) The level of NIH funding for ME/CFS was already unacceptably low. To be commensurate with its disease burden, it would need to increase roughly 14-fold. Seeing it decrease even more, year after year, feels very unjust for the millions affected by this horrible illness.

Wichtige Punkte in diesem Artikel, die in Studien zu #LongCovid Standard sein sollten. Oft wird nicht nach #PEM differenziert (oder Symptome als PEM beschrieben, die nicht PEM sind...), und das führt zu für Betroffene gefährlichen Verallgemeinerungen. www.sciencedirect.com/science/arti...

Am 27.12.2025 veranstaltet der Walddörfer SV aus Hamburg ein Benefizspiel für ME/CFS Awareness und Empty Stands! Wir freuen uns sehr! Kommt gerne vorbei, wenn ihr die Möglichkeit habt!