Hoa
@nocaffeineplz.bsky.social
Graphic & web designer, mainly using this account for illness fieldnotes.
♿ Chronically ill & disabled with ME/CFS, MCAS, hEDS, Psoriasis, Endometriosis/Adenomyosis, a̶n̶d̶ l̶i̶k̶e̶l̶y̶ s̶o̶m̶e̶ r̶a̶m̶p̶a̶n̶t̶ u̶n̶d̶i̶a̶g̶n̶o̶s̶e̶d̶ A̶D̶H̶D̶ and ADHD
Je poste principalement en anglais !
♿ Chronically ill & disabled with ME/CFS, MCAS, hEDS, Psoriasis, Endometriosis/Adenomyosis, a̶n̶d̶ l̶i̶k̶e̶l̶y̶ s̶o̶m̶e̶ r̶a̶m̶p̶a̶n̶t̶ u̶n̶d̶i̶a̶g̶n̶o̶s̶e̶d̶ A̶D̶H̶D̶ and ADHD
Je poste principalement en anglais !
1. My ME/CFS doctor went nuts and told me I didn't have psoriasis arthritis, that my pain is from ME and that I didn't rest enough.
2. I went to see a dermatologist who told me that I needed systemic treatment for my joint pain because she was sure it was from psoriasis.
Medicine is weird.
2. I went to see a dermatologist who told me that I needed systemic treatment for my joint pain because she was sure it was from psoriasis.
Medicine is weird.
November 17, 2025 at 9:21 PM
1. My ME/CFS doctor went nuts and told me I didn't have psoriasis arthritis, that my pain is from ME and that I didn't rest enough.
2. I went to see a dermatologist who told me that I needed systemic treatment for my joint pain because she was sure it was from psoriasis.
Medicine is weird.
2. I went to see a dermatologist who told me that I needed systemic treatment for my joint pain because she was sure it was from psoriasis.
Medicine is weird.
OMG! I can update my bio!
Now instead of "likely some rampant undiagnosed ADHD"…
I can announce that I have been officially diagnosed with ADHD!
Now instead of "likely some rampant undiagnosed ADHD"…
I can announce that I have been officially diagnosed with ADHD!
November 12, 2025 at 9:40 AM
OMG! I can update my bio!
Now instead of "likely some rampant undiagnosed ADHD"…
I can announce that I have been officially diagnosed with ADHD!
Now instead of "likely some rampant undiagnosed ADHD"…
I can announce that I have been officially diagnosed with ADHD!
Anyone with ME/CFS and MCAS has tried pde4 inhibitors (like Apremilast / Otezla)?
I was prescribed it for my psoriasis with psoriatic arthritis but I am very curious (if not scared) of the potential effect on ME/CFS.
I guess it should lower inflammation overall so it should be rather positive…
I was prescribed it for my psoriasis with psoriatic arthritis but I am very curious (if not scared) of the potential effect on ME/CFS.
I guess it should lower inflammation overall so it should be rather positive…
November 11, 2025 at 6:31 PM
Anyone with ME/CFS and MCAS has tried pde4 inhibitors (like Apremilast / Otezla)?
I was prescribed it for my psoriasis with psoriatic arthritis but I am very curious (if not scared) of the potential effect on ME/CFS.
I guess it should lower inflammation overall so it should be rather positive…
I was prescribed it for my psoriasis with psoriatic arthritis but I am very curious (if not scared) of the potential effect on ME/CFS.
I guess it should lower inflammation overall so it should be rather positive…
Reposted by Hoa
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...
legacy.drivethrurpg.com/product/5314...
Fey or Fiend - Cato Frederiks | DriveThruRPG.com
Welcome to "Fey or Fiend", a bone-rattling adventure where adventurers will assist Atlas Vertilibraedius after an experi
legacy.drivethrurpg.com
August 8, 2025 at 11:47 AM
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...
legacy.drivethrurpg.com/product/5314...
My Ivabradine update:
TLDR: It works for me!
TLDR: It works for me!
June 12, 2025 at 9:26 PM
My Ivabradine update:
TLDR: It works for me!
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
Needs to be shipped to Europe!
Any idea?
#covidcautious #mecfs #mcas #airpurifier #covidisnotover #airbornevirus
May 23, 2025 at 5:29 PM
Looking for a portative (battery operated) HEPA air purifier!
Needs to be shipped to Europe!
Any idea?
#covidcautious #mecfs #mcas #airpurifier #covidisnotover #airbornevirus
Needs to be shipped to Europe!
Any idea?
#covidcautious #mecfs #mcas #airpurifier #covidisnotover #airbornevirus
What do experts of ME/CFS 2-day CPET etc think of Ivabradine as a treatment option? Does it affect cardiac output?
May 19, 2025 at 12:14 PM
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."
May 16, 2025 at 1:34 PM
"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 !
Merci pour l'aide !
May 16, 2025 at 10:09 AM
Je recherche un.e médecin généraliste sur Paris qui connaisse le SAMA (Syndrome d'activation mastocytaire) !!
Merci pour l'aide !
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 👍🏻
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 👍🏻
May 5, 2025 at 9:17 PM
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 👍🏻
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...
For the Long Covid Exercise Cohort with post-CPET symptoms, onset was generally immediate and peaking within 4-24 hrs, in contrast to symptom peaks seen at 48-72 hrs in pre-Covid ME/CFS cohort
Recruitment for the MECFS cohort occurred between Dec 2016 & Feb 2020
Recruitment for the MECFS cohort occurred between Dec 2016 & Feb 2020
April 23, 2025 at 12:21 PM
Fascinating study and data...
I think the moths feed on my psoriasis crusts
April 19, 2025 at 10:06 AM
I think the moths feed on my psoriasis crusts
Reposted by Hoa
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...
In Neunkirchen-Seelscheid in Germany, a housing project is being planned especially for severely ME/CFS sufferers with 24-hour assistance.
sozialhummel.de/wohn...
April 19, 2025 at 8:18 AM
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...
In Neunkirchen-Seelscheid in Germany, a housing project is being planned especially for severely ME/CFS sufferers with 24-hour assistance.
sozialhummel.de/wohn...
Reposted by Hoa
⚠️ 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
#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
April 13, 2025 at 2:35 AM
⚠️ 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
#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 🙏🏻❤️
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 🙏🏻❤️
April 8, 2025 at 9:50 PM
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 🙏🏻❤️
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 🙏🏻❤️
Reposted by Hoa
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
Wij Zeggen Voorgoed NEE tegen GET en CGT - Petitie24.nl
tinyurl.com
March 12, 2025 at 1:28 PM
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.
🤝
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.
🤝
April 7, 2025 at 10:05 AM
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.
🤝
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.
🤝
Reposted by Hoa
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
gofund.me/31b04957
April 4, 2025 at 3:53 PM
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
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 🙏🏻 🙏🏻
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
gofund.me/31b04957
April 4, 2025 at 4:37 PM
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 🙏🏻 🙏🏻
Reposted by Hoa
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)
I figured that 10% of people with ME/CFS do not have ME (thanks to old diagnostic criteria that don’t require PEM), but this suggests it’s more like 22%.
Really is no wonder so many report things like the lightning process helping them 😕
bmjopen.bmj.com/content/15/4...
Really is no wonder so many report things like the lightning process helping them 😕
bmjopen.bmj.com/content/15/4...
Understanding symptom clusters, diagnosis and healthcare experiences in myalgic encephalomyelitis/chronic fatigue syndrome and long COVID: a cross-sectional survey in the UK
Objectives This study aims to provide an in-depth analysis of the symptoms, coexisting conditions and service utilisation among people with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) ...
bmjopen.bmj.com
April 3, 2025 at 1:06 PM
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)
Reposted by Hoa
Discover M.E. Film: An Animated Journey
YouTube video by Hope4MEFibroNI
www.youtube.com
March 29, 2025 at 3:08 AM
Reposted by Hoa
March 18, 2025 at 11:22 PM
Reposted by Hoa
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
"Unsere gesammelten Problemfälle zeigen, dass ME/CFS bei der Begutachtung oft in eine psychische oder psychosomatische Erkrankung umgewandelt wird – wie Depression oder Angststörung“
www.wienerzeitung.at/a/wenn-me-cf...
www.wienerzeitung.at/a/wenn-me-cf...
Wenn ME/CFS zur Existenzfrage wird | Wiener Zeitung
ME/CFS-Betroffene kämpfen nicht nur mit einer schweren Erkrankung, sondern auch mit einer Bürokratie.
www.wienerzeitung.at
March 18, 2025 at 7:38 PM
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