Founder of the ROCK ME Project. Wife, Cat mom, Author, Advocate, and medical DUMPSTER FIRE. Living life one SPOON at a time. ME is a DISEASE not a LIFESTYLE!
Michigan, USA
Joined June 2017
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In case anyone needs this.
This people.
Life should not have to be this hard.
#MECFS
@dysclinic @IhabFathiSulima @DrScomaME_CFS @DrJBhattacharya @dr_todd @BatemanHorne @MEActNet @minadjenkins @brian
Kristina Osobka retweeted
“I was just horrified… The most heartbreaking stories… Treatment is absolutely appalling for patients.”
George Monbiot speaking to @davidtuller1 about the hundreds of messages he received from people around the world with #MECFS about their experiences of treatment.
Kristina Osobka retweeted
Sufferers of complex, chronic diseases like POTS and long COVID-19 often spend years searching for relief. This former OpenAI exec started ChronicleBio to find treatments using AI and lots of biological data.
Read more: forbes.com/sites/amyfeldman/…
📸: Joel Saget/AFP via Getty Images
Kristina Osobka retweeted
Thanks @Forbes for featuring the great work we’re doing @ChronicleBioAI.
There are exactly 0 FDA-approved therapies for the hundreds of millions of people suffering from diseases like POTS, Long COVID, MECFS or hEDS. We created ChronicleBio to change this.
By building the deepest dataset on these conditions and leveraging AI, we will understand what the biology behind the symptoms is. From there, we can map the right drugs to the right patients.
Sufferers of complex, chronic diseases like POTS and long COVID-19 often spend years searching for relief. This former OpenAI exec started ChronicleBio to find treatments using AI and lots of biological data.
Read more: forbes.com/sites/amyfeldman/…
📸: Joel Saget/AFP via Getty Images
"Sucking it up and moving..."
How did that work for everyone?
#MECFS #dysautonomia
#dumbass
@namelessbanana
Kristina Osobka retweeted
Dass ME/CFS ein Bestandteil differentialdiagnostischer Überlegungen wird, ist eminent wichtig.
Es gibt eigentlich keine Entschuldigung mehr dafür, wenn das weiterhin nicht passiert.
"Der Weg zur richtigen Diagnose war lang. Wie viele Betroffene landete er zuerst in d. Psychiatrie"
"Dadurch, dass d. Krankheit psychologisiert worden ist, gibt es bis heute kein einziges Medikament (...)"
"Die Hoffnung [auf Forschung] gibt er nicht auf"
on.orf.at/video/14340630/161…
Not just in the UK!
One of the WORST hospital systems I have personally experienved this type of treatment is @HenryFordHealth
Maligned. Dismissed. Gaslit. Bullied. Laughed at, Fired as a patient, Oh yea and Ritalin for MECFS? Ritalin?
This is how this works at HF.
#MECFS
As many of you already know, George Monbiot has published another hard-hitting article on ME in the Guardian today.
Great to see such coverage, especially as the Guardian published some rubbish by others before
theguardian.com/commentisfre…
#MEcfs #PwME
ALT Opinion ME / Chronic fatigue syndrome Abandoned, dismissed and gaslighted: there is no excuse for the way ME sufferers have been betrayed George Monbiot George Monbiot Changes in guidance and science seem to have little impact on millions of devastated lives. It’s a shocking social crisis playing out behind closed doors Thu 24 Sep 2026 01.00 EDT Somebody sitting on a bed looking at a wall with a display of negative past medical experiences Illustration: Bill Bragg/The Guardian
Kristina Osobka retweeted
As many of you already know, George Monbiot has published another hard-hitting article on ME in the Guardian today.
Great to see such coverage, especially as the Guardian published some rubbish by others before
theguardian.com/commentisfre…
#MEcfs #PwME
ALT Opinion ME / Chronic fatigue syndrome Abandoned, dismissed and gaslighted: there is no excuse for the way ME sufferers have been betrayed George Monbiot George Monbiot Changes in guidance and science seem to have little impact on millions of devastated lives. It’s a shocking social crisis playing out behind closed doors Thu 24 Sep 2026 01.00 EDT Somebody sitting on a bed looking at a wall with a display of negative past medical experiences Illustration: Bill Bragg/The Guardian
Kristina Osobka retweeted
This is trending! #ME people do keep sharing or posting or quoting if possible. We’d love to get out of the bubble.
Kristina Osobka retweeted
Wow.
I think this is probably one of the largest published studies I've seen where patients were misdiagnosed with FND, when they actually had something else.
🏆 Here is a beautiful study of 17 patients who presented to the ER with abnormal movements and other neurologic problems and were misdiagnosed with #FND. It turned out that... all 17 patients had #dysautonomia and most improved with dysautonomia-targeted treatment!
🎉 The authors conclude that patients presenting with abnormal movements should be evaluate for dysautonomia and not be mislabeled with FND.
P.S. I was not involved in this study or its publication, I promise, but my experience directly parallels that of the authors'. 😂
frontiersin.org/journals/neu…
Interesting article.
Very "spoonworthy"!
Dr. Grubb is an amazing doctor & person.
He's actually one of my docs & has been beyond helpful and supportive.
@Dysautonomia @dysclinic @POTSActivist @mecfsskeptic @bhanlon15 @emily_rj @julierehmeyer @SharonC97936831 @exceedhergrasp1
In 2002, physician Sarah Schafer developed:
- lightheadedness
- extreme fatigue
- joint pain
- brain fog
After 7 years mostly bedbound, she was diagnosed with POTS and Sjögren’s disease.
Her POTS had been an early warning of the autoimmune condition.
Experts now see strong overlap between dysautonomia (like POTS) and autoimmune diseases. About 1 in 5 people with POTS later receive an autoimmune diagnosis such as lupus or Hashimoto’s. The reverse is also common.
Cardiologist Blair Grubb, who has treated POTS for nearly 40 years, notes many patients describe a clear trigger, an infection, injury, or other “index event.” “I started saying, this sounds like an autoimmune disorder,” Grubb says.
Neurologist Ilene Ruhoy explains how chronic immune activation can turn destructive: “It starts to make antibodies against itself.” Over time, this “creates this sort of chronic, systemic inflammatory response, which then ultimately affects and intersects with the nervous system.”
The autonomic nerves act like the body’s check-engine light. When the immune system stays overactive, those nerves can fray, disrupting heart rate, blood pressure, and more. Understanding this link could lead to better treatments for POTS, Long COVID, ME/CFS, and related conditions.
For more content related to Long COVID, POTS, and autoimmune conditions, check out our Substack.
Read more here: buff.ly/UgKTbMt
ALT Why Do POTS and Long COVID Look So Much Like Autoimmune Disorders? — article header with bold white headline and byline on a black left panel beside a blurred human silhouette against red‑orange horizontal bands.
Kristina Osobka retweeted
I don’t think people who haven’t experienced M.E. themselves or in a close family member can truly understand our existence
‘What do you do all day?’
Well, I’m mostly just trying to survive, managing the necessities (eating, washing) while dealing with constant symptoms
Kristina Osobka retweeted
#RIP 🖤Arnaud Denis *31.5.1983 - †22.9.2026🖤
🕊️Der Whistleblower u. Schauspieler starb mit 43 Jahren durch Sterbehilfe.
Weil #MECFS u. ASIA Syndrom sein Leben zur HÖLLE machten!💔
de.euronews.com/kultur/2026/…
💔Arnaud Denis Palliativpatient, #MECFS + ASIA Syndrom durch Implantat, hat Sterbehilfe beantragt:
„Ich möchte auch als Whistleblower in Erinnerung bleiben,damit mein Tod nicht umsonst war,denn schlimmer als zu sterben wäre es,umsonst zu sterben. Ich möchte,dass mein Tod dazu..⤵️
Kristina Osobka retweeted
Epstein–Barr Virus: More than Just an Infection
🚨EBV isn’t “just mono.” It rewires B cells, mimics host proteins (GlialCAM → MS, nuclear antigens → lupus), drives lymphoma and paediatric cytokine storms,
This new Belgian review also flags emerging, not yet solid, evidence that EBV reactivation after COVID may contribute to LongC0VID.
Worth your time!
➡️EBV, carried lifelong by ~95% of adults, toggles between lytic replication and programmed latency, reprogramming B cells to evade immunity and disrupt homeostasis,
➡️EBNA-1 is central( EB virus-nuclear antigen-1), “The Achilles’ Heel of EBV,”
➡️Via molecular mimicry it cross-reacts with GlialCAM (MS), keratin (RA), and nuclear antigens (SLE),
➡️A "bystander activation" and "epitope spreading" can amplify inflammation in Crohn’s disease, type 1 diabetes, and IgA nephropathy,
➡️EBV also drives lymphoproliferative disease in both immunocompetent and immunosuppressed hosts. "When a usually EBV-negative lymphoma turns EBV-positive, that is often a red flag for underlying immune failure,"
➡️Two paediatric emergencies get special attention:
- EBV-HLH: A cytokine-storm catastrophe from failed cytotoxicity,
- Chronic active EBV disease (CAEBV),
- Both can kill,
➡️On LongC0VID the review is cautious:
➡️Separate studies suggest COVID can wake latent EBV in B cells:
- EBNA1 mimicry, atypical B-cell expansion, and cytokine dysregulation could then sustain the same inflammatory loops seen in MS, SLE, and RA.
- SARSCoV2 would not need to persist, it would only need to reactivate the most omnipresent human virus and let it keep “burning.”
- That, according to this review, remains a hypothesis, not yet a settled mechanism,
➡️The authors further argue that mapping these molecular interactions is essential for vaccines and targeted therapies that finally treat EBV as a systemic pathogen rather than a childhood inconvenience,
‼️So, a virus shrugged off as “kissing disease” is a plausible architect of autoimmunity, lymphoma, paediatric cytokine storms, and possibly part of the wreckage after SARSCoV2. Ignoring that possibility is no longer scientifically serious.
Sadly, NO licensed EBV vaccine momentarily available. Incoming mRNA candidates are real, but a public shot is not yet imminent!
mdpi.com/1999-4915/18/9/1048
Kristina Osobka retweeted
The gaslighting is just as traumatic as the illness itself
Having the reality of your illness denied “is almost as bad as the actual physical symptoms themselves.”
Ed Yong, speaking about #LongCovid patients being disbelieved and dismissed, and how gender and racial bias affect their care.
After having Scarlett Fever 2x as a child, Strep, then possibly Mono later in 2008, I had one final severe infection 2013. Since then, Almost nothing has changed.
Maybe they need to look again at EBV.
That seems to be a common thread in many cases of #MECFS?
@DrJBhattacharya
DX in 2014. Advocate for about 10 years of this.
I have seen so many of these scams.
Use discernment.
Sickfluencer Pattern:
1. Appear out of nowhere or out of hibernation. Post frequent retweets of daily scraping of new articles or studies so that you sound smart. Heavy use of AI to do the writing is more common these days.
2. Post a lot about being here for the community and just wanting to be helpful.
3. Add in some sickfluencer empathy farming videos or photos.
4. Start talking mysteriously about healing yourself using secret knowledge language. Notice questions are never answered. Specifics are never given.
5. Start the grift. Sometimes cloaking in crowdfunding, investing in the research, bio hacking schemes, etc
6. Engage some victim centering of self. Even better if it is utilizing trauma, abuse, and survivor language.
8. Gaslight people who have substantive critique of your behavior, misinformation, excessive use of AI, and hot takes. Even better to other all critics with any sort of -ist, -ism or -ogyny label.
9. Continue to prime the pump with empathy farming posts of illness with photos or videos. More “science” reposting of scraped info.
10. Engage in heavy cross-promoting to maximize engagement and project faux community with other grifty sickfluencers. Convince people that engagement = credentials and competence. They will avoid anything that is not the current tribal narrative being promoted. Heavy use of talking points. Blocking patients who have questions is common.
11. Rinse and repeat.
After 13 yrs of this, I am looking back on my old labs again for common threads.
Did anyone DX with MECFS ever have their T cells checked?
I have too many. If that's even possible.
@DrMichaelScoma @LBatemanMD @DrRebeccaRyan @drseanmullen @dysclinic @exceedhergrasp1 @MEActNet
Kristina Osobka retweeted
Neither is ME/CFS!
Long Covid is not functional neurological disorder | STAT statnews.com/2024/07/15/long…
