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 !
What I also noticed, and it might be the most interesting part for me, is that it improves my body battery/stress score on my Garmin.
I have WAY MORE blue.
On the graph, we can see that the big orange part from 8-12 stabilised over the day. I took Ivabradine at 10 and it took about 2h to work.
I have WAY MORE blue.
On the graph, we can see that the big orange part from 8-12 stabilised over the day. I took Ivabradine at 10 and it took about 2h to work.
June 12, 2025 at 9:26 PM
What I also noticed, and it might be the most interesting part for me, is that it improves my body battery/stress score on my Garmin.
I have WAY MORE blue.
On the graph, we can see that the big orange part from 8-12 stabilised over the day. I took Ivabradine at 10 and it took about 2h to work.
I have WAY MORE blue.
On the graph, we can see that the big orange part from 8-12 stabilised over the day. I took Ivabradine at 10 and it took about 2h to work.
I started with 5mg in the mornings only.
The first day, I took Ivabradine at 10am and it took about 2h to act. My heart rate stabilised and staid below 120bpm.
I was surprised to see that when sitting down, my heart rate was also lower than before.
The first day, I took Ivabradine at 10am and it took about 2h to act. My heart rate stabilised and staid below 120bpm.
I was surprised to see that when sitting down, my heart rate was also lower than before.
June 12, 2025 at 9:26 PM
I started with 5mg in the mornings only.
The first day, I took Ivabradine at 10am and it took about 2h to act. My heart rate stabilised and staid below 120bpm.
I was surprised to see that when sitting down, my heart rate was also lower than before.
The first day, I took Ivabradine at 10am and it took about 2h to act. My heart rate stabilised and staid below 120bpm.
I was surprised to see that when sitting down, my heart rate was also lower than before.
How do we attend???
The website is under maintenance, where's the link?
The website is under maintenance, where's the link?
April 19, 2025 at 7:52 AM
How do we attend???
The website is under maintenance, where's the link?
The website is under maintenance, where's the link?
It's not really known tbh, but it's been reported in scientific articles, and Mast Cell Hope mentioned it in this layman's article listing drugs that can trigger degranulation:
www.mastcellhope.org/education/tr...
If I'm not wrong, I think Mestinon is exactly a neuromuscular junction blocking agent
www.mastcellhope.org/education/tr...
If I'm not wrong, I think Mestinon is exactly a neuromuscular junction blocking agent
March 14, 2025 at 6:18 AM
It's not really known tbh, but it's been reported in scientific articles, and Mast Cell Hope mentioned it in this layman's article listing drugs that can trigger degranulation:
www.mastcellhope.org/education/tr...
If I'm not wrong, I think Mestinon is exactly a neuromuscular junction blocking agent
www.mastcellhope.org/education/tr...
If I'm not wrong, I think Mestinon is exactly a neuromuscular junction blocking agent
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...
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...
February 23, 2025 at 8:57 PM
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...
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...
"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...
February 23, 2025 at 7:48 PM
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...
"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...
I know it sounds far fetched. But it was the best explanation I could find to my issues.
Until I found this paper today. It talks about the use of Naloxone (a drug with similar mechanism of action as Naltrexone) at very low dose in a patient with pruritus.
pmc.ncbi.nlm.nih.gov/articles/PMC...
Until I found this paper today. It talks about the use of Naloxone (a drug with similar mechanism of action as Naltrexone) at very low dose in a patient with pruritus.
pmc.ncbi.nlm.nih.gov/articles/PMC...
February 14, 2025 at 10:24 PM
I know it sounds far fetched. But it was the best explanation I could find to my issues.
Until I found this paper today. It talks about the use of Naloxone (a drug with similar mechanism of action as Naltrexone) at very low dose in a patient with pruritus.
pmc.ncbi.nlm.nih.gov/articles/PMC...
Until I found this paper today. It talks about the use of Naloxone (a drug with similar mechanism of action as Naltrexone) at very low dose in a patient with pruritus.
pmc.ncbi.nlm.nih.gov/articles/PMC...
ok were fucked
There are actually MANY DIFFERENT TYPES OF MITOCHONDRIA
As Martin Picard tweet states:
x.com/MitoPsychoBi...
What does that imply for #MECFS?
There are actually MANY DIFFERENT TYPES OF MITOCHONDRIA
As Martin Picard tweet states:
x.com/MitoPsychoBi...
What does that imply for #MECFS?
February 7, 2025 at 12:59 PM
ok were fucked
There are actually MANY DIFFERENT TYPES OF MITOCHONDRIA
As Martin Picard tweet states:
x.com/MitoPsychoBi...
What does that imply for #MECFS?
There are actually MANY DIFFERENT TYPES OF MITOCHONDRIA
As Martin Picard tweet states:
x.com/MitoPsychoBi...
What does that imply for #MECFS?
"In 2010, the DePaul Symptom Questionnaire (DSQ) was created using the expanded items from Jason et al.'s survey. Its purpose was to evaluate 54 classic ME/CFS symptoms across a range of typologies"
Table available here:
www.lidsen.com/journals/neu...
Table available here:
www.lidsen.com/journals/neu...
February 5, 2025 at 2:56 PM
"In 2010, the DePaul Symptom Questionnaire (DSQ) was created using the expanded items from Jason et al.'s survey. Its purpose was to evaluate 54 classic ME/CFS symptoms across a range of typologies"
Table available here:
www.lidsen.com/journals/neu...
Table available here:
www.lidsen.com/journals/neu...
An oldie from Workwell Foundation workwellfoundation.org
Always interesting to see how PEM symptoms can evolve over time in ME/CFS.
(Found via chronicallycaroline.com/2020/08/29/b...)
Always interesting to see how PEM symptoms can evolve over time in ME/CFS.
(Found via chronicallycaroline.com/2020/08/29/b...)
February 4, 2025 at 12:09 PM
An oldie from Workwell Foundation workwellfoundation.org
Always interesting to see how PEM symptoms can evolve over time in ME/CFS.
(Found via chronicallycaroline.com/2020/08/29/b...)
Always interesting to see how PEM symptoms can evolve over time in ME/CFS.
(Found via chronicallycaroline.com/2020/08/29/b...)
I find it so... fascinating, that amongst the comorbidities, there is NO mention of endometriosis and hypermobility spectrum disorder/Ehlers Danlos syndrome.
While it's VERY common with ME/CFS.
I wonder if there's a cohort bias if there is a lack of diagnosis for these conditions in the UK
While it's VERY common with ME/CFS.
I wonder if there's a cohort bias if there is a lack of diagnosis for these conditions in the UK
February 1, 2025 at 9:34 PM
I find it so... fascinating, that amongst the comorbidities, there is NO mention of endometriosis and hypermobility spectrum disorder/Ehlers Danlos syndrome.
While it's VERY common with ME/CFS.
I wonder if there's a cohort bias if there is a lack of diagnosis for these conditions in the UK
While it's VERY common with ME/CFS.
I wonder if there's a cohort bias if there is a lack of diagnosis for these conditions in the UK
What's up with nitric oxide levels in #mecfs?!
I've bought these simple strips tests that measure the nitric oxide.
The first one (right) was just after waking up. It shows a good level of nitric oxide.
The second one (left) was 4h later, after using my phone and going to pee, showing low levels.
I've bought these simple strips tests that measure the nitric oxide.
The first one (right) was just after waking up. It shows a good level of nitric oxide.
The second one (left) was 4h later, after using my phone and going to pee, showing low levels.
January 10, 2024 at 1:17 PM
What's up with nitric oxide levels in #mecfs?!
I've bought these simple strips tests that measure the nitric oxide.
The first one (right) was just after waking up. It shows a good level of nitric oxide.
The second one (left) was 4h later, after using my phone and going to pee, showing low levels.
I've bought these simple strips tests that measure the nitric oxide.
The first one (right) was just after waking up. It shows a good level of nitric oxide.
The second one (left) was 4h later, after using my phone and going to pee, showing low levels.
Has anyone ever researched/thought of SOD2 mutations as a potential cause or factor in MECFS?
I just figured out that I have a homozygous mutation on SOD2 and this enzyme is supposed to help the mitochondria getting rid of oxidative stress. But if it's not working well...
@tomkindlon.bsky.social ?
I just figured out that I have a homozygous mutation on SOD2 and this enzyme is supposed to help the mitochondria getting rid of oxidative stress. But if it's not working well...
@tomkindlon.bsky.social ?
December 26, 2023 at 7:27 PM
Has anyone ever researched/thought of SOD2 mutations as a potential cause or factor in MECFS?
I just figured out that I have a homozygous mutation on SOD2 and this enzyme is supposed to help the mitochondria getting rid of oxidative stress. But if it's not working well...
@tomkindlon.bsky.social ?
I just figured out that I have a homozygous mutation on SOD2 and this enzyme is supposed to help the mitochondria getting rid of oxidative stress. But if it's not working well...
@tomkindlon.bsky.social ?
Aux Pays-Bas bien que la politique COVID soit inexistante, ils utilisent les eaux usées pour relever le niveau de particules.
Ce site (initiative perso d'un ingénieur) montre qu'on est dans la plus grosse vague depuis le début de la pandémie. Voilà voilà.
www.corona-lokaal.nl/locatie/Nede...
Ce site (initiative perso d'un ingénieur) montre qu'on est dans la plus grosse vague depuis le début de la pandémie. Voilà voilà.
www.corona-lokaal.nl/locatie/Nede...
December 13, 2023 at 9:49 AM
Aux Pays-Bas bien que la politique COVID soit inexistante, ils utilisent les eaux usées pour relever le niveau de particules.
Ce site (initiative perso d'un ingénieur) montre qu'on est dans la plus grosse vague depuis le début de la pandémie. Voilà voilà.
www.corona-lokaal.nl/locatie/Nede...
Ce site (initiative perso d'un ingénieur) montre qu'on est dans la plus grosse vague depuis le début de la pandémie. Voilà voilà.
www.corona-lokaal.nl/locatie/Nede...
Alert! I have one of these pipi/shower chairs left. For any disabled people in NL (or Germany or Belgium...) To be picked in Amsterdam.
Please share ❤️
Please share ❤️
November 28, 2023 at 10:28 AM
Alert! I have one of these pipi/shower chairs left. For any disabled people in NL (or Germany or Belgium...) To be picked in Amsterdam.
Please share ❤️
Please share ❤️
They're new, just received, still in their original packaging
November 17, 2023 at 1:31 PM
They're new, just received, still in their original packaging
Any disabled friend in the Netherlands in need for a commode chair? I received 3 (!) of these.
It can be used under the shower to sit or as a toilet chair to pee.
Please share, I don't know what to do with them all 😅
It can be used under the shower to sit or as a toilet chair to pee.
Please share, I don't know what to do with them all 😅
November 17, 2023 at 1:06 PM
Any disabled friend in the Netherlands in need for a commode chair? I received 3 (!) of these.
It can be used under the shower to sit or as a toilet chair to pee.
Please share, I don't know what to do with them all 😅
It can be used under the shower to sit or as a toilet chair to pee.
Please share, I don't know what to do with them all 😅
Remember what @ahandvanish.bsky.social explained about the itaconate shunt theory from Ron Davis in her long and clear tweet? twitter.com/ahandvanish/...
Interferon alpha is elevated in ME people. I just read that it was also the case in chronic Lyme. I'm excited about this overlap!
Interferon alpha is elevated in ME people. I just read that it was also the case in chronic Lyme. I'm excited about this overlap!
October 29, 2023 at 6:45 PM
Remember what @ahandvanish.bsky.social explained about the itaconate shunt theory from Ron Davis in her long and clear tweet? twitter.com/ahandvanish/...
Interferon alpha is elevated in ME people. I just read that it was also the case in chronic Lyme. I'm excited about this overlap!
Interferon alpha is elevated in ME people. I just read that it was also the case in chronic Lyme. I'm excited about this overlap!