It only took me about six months to write, but here is my (hopefully) pretty amazing one-shot. Your players too can help the dwarf Atlas Vertilibraedius when his experiment... didn't work out quite as well as he liked! Incl. a short and longer version! legacy.drivethrurpg.com/product/5314...

Any advice on Singulair/Montelukast? Which dose are you on? Did you titrate up? How's it going? Thanks #MCAS #MECFS #asthma

My Ivabradine update: TLDR: It works for me!

Looking for a portative (battery operated) HEPA air purifier! Needs to be shipped to Europe! Any idea? #covidcautious #mecfs #mcas #airpurifier #covidisnotover #airbornevirus

The whole medical system is fucked. It’s all based of the premise that you’re well enough to get to a doctor. What happens when you’re too sick to go to a doctor? Not as a once off, but permanently. Am I just supposed to die? #SevereME #mecfs

What do experts of ME/CFS 2-day CPET etc think of Ivabradine as a treatment option? Does it affect cardiac output?

"We found that cluster 1 showed a significantly higher percentage of patients who are seropositive for cytomegalovirus. On the other hand, cluster 2 had a higher percentage of patients seropositive for SARS-CoV-2 and parvovirus B19."

Je recherche un.e médecin généraliste sur Paris qui connaisse le SAMA (Syndrome d'activation mastocytaire) !! Merci pour l'aide !

I'm in a bad pain flare up. It's exhausting and I've been sleeping a lot today. But I'm surprisingly excited because I'm seeing the new rhumatologist tomorrow! Proud of my body to be acting up especially for the appointment! Well done 👍🏻

Fascinating study and data...

I think the moths feed on my psoriasis crusts

This looks like an interesting and much needed project. In Neunkirchen-Seelscheid in Germany, a housing project is being planned especially for severely ME/CFS sufferers with 24-hour assistance. sozialhummel.de/wohn...

⚠️ Passing along from twitter: NEED IV FLUIDS FROM NURSE, NYC. #pwME is suffering an infection & needs hydration urgently. They're perpetually crashed because of non-stop migraines, baseline so bad they can't tolerate even dark, silent rooms = ER too dangerous. Please share. #MutualSky #longcovid

Anybody with ME/CFS and MCAS has experience with Ivabradine? Does it help you without making your mast cells degranulate? How does it work if you have the chronotropic intolerance type of ME (your HR doesn't go as high as expected during an effort)? Thanks 🙏🏻❤️

Please, if you’re #Dutch sign this petition to get the #Netherlands to stop using #GET as a treatment for #ME. We know it doesn’t work, it nearly killed me and cost me 8 long years of my life #bedridden. It didn’t have to be this hard. RIP ages 28-36. tinyurl.com/ystekut2

Who decided to wash her hair after 2 weeks and tried a new shampoo and got a MCAS reaction? Since I put the shampoo on my scalp I got tingling all over on the face and arms and I have this weird sense of panic for no explicit reason and my nose is burning and I wanna puke. 🤝

In order to (hopefully) at some point live my life with less CCI (and maybe less ME? Pretty please?) I'll need a C0-C2 fusion... and quite a bit of money. If you have some to spare, I'd be eternally grateful gofund.me/31b04957

My friend @catofrederiks.bsky.social is launching a fundraiser for her spinal fusion. She has ME/CFS and has severe issues. Please share around, any 5€ is more than welcome 🙏🏻 🙏🏻

my favorite (lol) thing is that the way the diagnosis criteria is a hot mess, a large number of folks are incorrectly categorized as having ME/CFS, but ALSO because of the mess and doctors being awful, a large number of pwME are categorized as *not* having it. (maybe FND or depression instead)

Discover M.E. Film: An Animated Journey #MEcfs #PEM www.youtube.com/watch?v=yFsa...

Want to rest with me? #longcovid #mecfs #chronicillness #disability

But while medical research has long confirmed that #ME/CFS is a chronic disease, and the World Health Organization (WHO) has already classified it under the code G93.3 in 1969, Austrian authorities often do not recognize it as such. [This tragic situation is oidentical in every 🇪🇺 country & worldwide

Ten years ago Distinct plasma immune signatures in ME/CFS are present early in the course of illness by @mhornig.bsky.social et al. was published in Science www.science.org/doi/10.1126/... The researchers showed that #ME/CFS is a temporally non static immune mediated disease

Announcing a directory website for therapists working with people who have #MECFS #pwME #LongCovid - therapists who understand the gaslighting and misinformation of past decades and want to help you cope. www.chroniclivingtherapy.com Please follow here and sign up for our newsletter!

Could you sign and help gather 10.000 signatures before end of May? This petition by @mecentraal.bsky.social is to request the immediate ban of GET and CBT for treatment of ME/CFS in the Netherlands. It will be sent to the Dutch Government (Tweede Kamer). #mecfs www.petitie24.nl/petitie/5706...

Could you sign and help gather 10.000 signatures before end of May? This petition by @mecentraal.bsky.social is to request the immediate ban of GET and CBT for treatment of ME/CFS in the Netherlands. It will be sent to the Dutch Government (Tweede Kamer). #mecfs www.petitie24.nl/petitie/5706...

We asked what chronic fatigue feels like. Watch to see what was said. #LongCOVIDAwareness2025 #LongCOVIDMassFollow #cfs #cfs/me #chronicfatigue #ME

So that would indicate more a "shitty immune system" type of body rather than a "my immune system is too angry and keeps on bullying me" one.

If you’ve had ME/CFS since before 2020 and can come into Manhattan for testing, this Cornell study is paying participants $300. It involves survey forms, blood draws, a urine sample, an EndoPAT, grip strength test, and a muscle biopsy. I am participating. neuroimmune.cornell.edu/wp-content/u...

Am 12./13.5. findet die 3. internationale Charité MECFS Konferenz statt zu den Themen Versorgung, Krankheitsmechanismen und Therapiestudien u.a. mit David Putrino, Rob Wüst, Neurostingl, JdenDunnen, MichaelPeluso, Oystein Fluge. events.mecfs-research.org/de/events/co...

Feeling warm and cold at the same time, 2h to 3h after being in direct sun. Is it MCAS or ME/CFS?

I created this image using BioRender. It's my attempt to depict Mitochondrial Dysfunction and the ROS-induced reversal of the Sodium /Calcium Exchanger in the Skeletal Muscle Cells of ME/cfs patients, as described by Klaus Wirth and Prof. Carmen Scheibenbogen. #Mitochondria #MEcfs #LongCovid

Georgetown study finds ME/CFS patients have elevated serine, reduced folate, and altered lipid metabolism in cerebrospinal fluid, suggesting brain dysfunction. Exercise worsens imbalances, unlike in healthy controls. www.nature.com/articles/s41...

Hi @doctorasadkhan.bsky.social Thanks for sharing your story in the brilliant documentary by @sibylledahrendorf.bsky.social I got curious about the device you wear on your right arm in the movie. Is it to monitor BP or HR? If so, would you mind sharing the product reference? Thank you!

I also wonder what alcohol intolerance entails. I've had alcohol intolerance for years way before the ME fatigue started. For me I'm pretty sure it stems from MCAS (vomiting, flushing, diarrhea, tingling, sudden weakness...). Anecdotally, I have friends with ME who feel better with alcohol.

New: Multiple Voxel Pattern Analysis Shows Associations Between Chronic Fatigue Syndrome and Cortical Atrophy Only abstract available currently www.frontiersin.org/journals/neu... #MEcfs #CFS

Could ginkgo biloba (GB) help lower intracellular calcium in ME/CFS? Anecdotally, GB has been great for me. "GB might protect neurons from hypoxia, in part, by regulating Ca2+ influx and intracellular Ca2+ release to maintain Ca2+ homeostasis." pmc.ncbi.nlm.nih.gov/articles/PMC...

Could taurine help lower intracellular calcium in ME/CFS? "The role of taurine in modulating mitochondrial calcium homeostasis could be of particular importance under pathological conditions that are characterized by excessive calcium overloads." Re: mitodicure link.springer.com/article/10.1...

Little reminder to myself: having more issues regulating my temperature and more insomnia these days IS ME/CFS. What a twat I am 😆

From Belgium: Exploring Hypercoagulability in Post-COVID Syndrome (PCS): An Attempt at Unraveling the Endothelial Dysfunction www.mdpi.com/2077-0383/14... Screenshot from latest Science for ME weekly update #LongCovid #PASC

Driven by spike for LC. All in the papers. Likely surface prots of heroesviridae in ME but not yet shown.

@resiapretorius.bsky.social, Huihui Zhao and I have an important preprint out showing how fibrinaloid microclots equate to the #TCM concept of 'blood stasis' . #XueFuZhuYu can alleviate it (and several #pwLC & #pwME correspondents are already benefiting). preprints.org/manuscript/2... #TeamClots.

Dr. Amy Proal, Scientific Director of the CoRE Clinic at Mount Sinai, discusses viral persistence as a driver of ME/CFS with Dr.s Raven Baxter & David Putrino: “[research] finds the RNA backbone & protein of enteroviruses in ME/CFS gut tissue.” @coresinai.bsky.social

Emerging evidence suggests that ME/CFS, GWS, and FM are all characterised by disturbances in metabolic pathways, particularly those related to energy production, lipid metabolism, and oxidative stress. Altered levels of key metabolites in these pathways www.frontiersin.org/journals/neu...

How many individuals diagnosed with ME/CFS have been tested for muscle weakness? How Many Known Illnesses Are Related to Muscle Weakness? swaresearch.blogspot.com/2025/02/how-...

I had an horrible reaction to LDN. For 3 months I felt overdosed on coke and morphine at the same time. The first days I had runners highs. Then weakness like never before, I was restless, had pain all over, insomnia for days on, had crying spells. I also had physical cravings for the drug.

"This map uncovers disrupted associations between microbial metabolism (e.g., short-chain fatty acids, branched-chain amino acids, tryptophan, benzoate), plasma lipids and bile acids." Could it have anything to do with Rob Phair's metabolic trap/tryptophan hypothesis? me-pedia.org/wiki/Metabol...

"Drugs that tackle T-cell exhaustion are available, and the authors wrote that “validating T-cell exhaustion in ME/CFS could open the door to the use of drugs that can return them to proper functioning”."