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nocaffeineplz.bsky.social
Graphic & web designer, mainly using this account for illness fieldnotes. ♿ Chronically ill & disabled with ME/CFS, MCAS, hEDS, Psoriasis, Endometriosis/Adenomyosis, and likely some rampant undiagnosed ADHD Je poste principalement en anglais !
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Any advice on Singulair/Montelukast? Which dose are you on? Did you titrate up? How's it going? Thanks #MCAS #MECFS #asthma

submitted 12 days ago • 0 comments

My Ivabradine update: TLDR: It works for me!

submitted 13 days ago • 1 comment

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

submitted 33 days ago • 1 comment

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

submitted 36 days ago • 3 comments

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

submitted 37 days ago • 2 comments

"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."

submitted 40 days ago • 0 comments

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

submitted 40 days ago • 0 comments

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 👍🏻

submitted 51 days ago • 1 comment

Fascinating study and data...

submitted 63 days ago • 0 comments

I think the moths feed on my psoriasis crusts

submitted 67 days ago • 0 comments

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...

submitted 67 days ago • 1 comment

⚠️ 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

submitted 73 days ago • 0 comments

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 🙏🏻❤️

submitted 78 days ago • 0 comments

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

submitted 105 days ago • 0 comments

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. 🤝

submitted 79 days ago • 0 comments

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

submitted 82 days ago • 0 comments

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 🙏🏻 🙏🏻

submitted 82 days ago • 0 comments

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)

submitted 83 days ago • 0 comments

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

submitted 88 days ago • 0 comments

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

submitted 98 days ago • 1 comment

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

submitted 99 days ago • 1 comment

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

submitted 101 days ago • 2 comments

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!

submitted 103 days ago • 0 comments