Jess Mahler
boosted
Unduly pleased with myself for a word coinage that has I'm sure been a vast number of times:
"I looked at how much of this to take, but for the first time I used it, I started at half that, figuring the recommendation was for biotypical people."
Unduly pleased with myself for a word coinage that has I'm sure been a vast number of times:
"I looked at how much of this to take, but for the first time I used it, I started at half that, figuring the recommendation was for biotypical people."
· Two studies on potential biomarkers for #MECFS were published this month
· Stellate ganglion blocks, a procedure where an anesthetic is injected into nerves in the neck, may help reduce the severity of some symptoms of #LongCOVID and ME
· An observational study is recruiting 40 people in Boston, Massachusetts to test for defects of air and blood flow in the lungs in people with Long COVID
https://thesicktimes.org/2025/07/29/research-updates-july-29/
Woozle Hypertwin
boosted
!!!!!!!! Scientists have developed what looks like a super-sensitive super-easy blood test to diagnose ME/CFS!!! https://www.montrealgazette.com/news/health/article1054114.html
They haven't yet looked at Long COVID blood to see if it has the same overabundance of the target protein (SMPDL3B).
!!!!!!!! Scientists have developed what looks like a super-sensitive super-easy blood test to diagnose ME/CFS!!! https://www.montrealgazette.com/news/health/article1054114.html
They haven't yet looked at Long COVID blood to see if it has the same overabundance of the target protein (SMPDL3B).
I'd much rather talk about my sex life and, as may be, non-sex life, but sometimes I need to vent about this stuff.
And keep my friends in the loop.
I'm declining fast. On the #MECFS side, I'm well on the trajectory from housebound to bedbound. I haven't driven in well over a year. I haven''t left the house at all since January, after a half-day of cognitive testing devastated my capacities.
We're not making many more medical appointments--even telehealth--or diagnostics. Because the vast majority of doctors can't bring themselves to say, "We don't understand much of what's wrong with you. Even if we did, we have no clue how to help you. You're not dying, but let's switch to focusing on palliative care."
They won't do that. They'll send me to another specialist. Or for another test. I do have a palliative care provider, and he's great, but he keeps cautioning they may yank me out of his rota at any time since I'm not dying.
Jess Mahler
boosted
I have just donated to "What Doesn't Kill You" https://whatdoesntkillyou.movie/
Documentaries can be a powerful way to raise awareness & understanding along with empathy.
After looking at some clips and reading this https://www.s4me.info/threads/what-doesnt-kill-you-forthcoming-documentary.45051/ , I'm hopeful this will be good.
@mecfs
#MyalgicEncephalomyelitis#ChronicFatigueSyndrome#MEcfs#CFS#PwME #SevereME
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I have just donated to "What Doesn't Kill You" https://whatdoesntkillyou.movie/
Documentaries can be a powerful way to raise awareness & understanding along with empathy.
After looking at some clips and reading this https://www.s4me.info/threads/what-doesnt-kill-you-forthcoming-documentary.45051/ , I'm hopeful this will be good.
@mecfs
#MyalgicEncephalomyelitis#ChronicFatigueSyndrome#MEcfs#CFS#PwME #SevereME
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Jess Mahler
boosted
Hopeful question for the #MECFS community:
In what ways can perimenopause (and menopause and beyond) impact pre-existing ME/CFS?
I’m looking for any info at all: your personal experiences, links to helpful websites or forums, or scientific studies. I’m open to anything.
ME-related websites seem to only have rather generic info about perimenopause/menopause. And I’ve only found scientific studies looking into how peri and gynae issues can mean someone is more likely to get ME/CFS for the first time at peri / meno age (which is not my question).
It’s getting easier to look up perimenopause info, thank goodness, but I want to know how it could impact pre-existing ME/CFS. For example, I’m wondering if it could be responsible for triggering the significant decline in my baseline and the fact I very much have all the criteria of POTS now. However, these things could also be due to a previous burnout or over exertion in recent years, too, not peri. I’m wanting to build a picture of what’s possible to try to understand my current and future experiences and help guide my future decisions.
#pwME @mecfs#POTS #myalgicencephalomyelitis #chronicfatiguesyndrome
Hopeful question for the #MECFS community:
In what ways can perimenopause (and menopause and beyond) impact pre-existing ME/CFS?
I’m looking for any info at all: your personal experiences, links to helpful websites or forums, or scientific studies. I’m open to anything.
ME-related websites seem to only have rather generic info about perimenopause/menopause. And I’ve only found scientific studies looking into how peri and gynae issues can mean someone is more likely to get ME/CFS for the first time at peri / meno age (which is not my question).
It’s getting easier to look up perimenopause info, thank goodness, but I want to know how it could impact pre-existing ME/CFS. For example, I’m wondering if it could be responsible for triggering the significant decline in my baseline and the fact I very much have all the criteria of POTS now. However, these things could also be due to a previous burnout or over exertion in recent years, too, not peri. I’m wanting to build a picture of what’s possible to try to understand my current and future experiences and help guide my future decisions.
#pwME @mecfs#POTS #myalgicencephalomyelitis #chronicfatiguesyndrome
Ich lese vermehrt, dass Vulnerable/bereits Erkrankte sich nicht trauen, in der Öffentlichkeit Maske zu tragen, weil sie Angst vor Anfeindung und Übergriffen haben.
Deshalb mein Aufruf an alle: Tragt Maske! Aktuell gibt es für #MEcfs, #MCAS, #POTS, #SFN, #CCI usw keine Heilung! Es gibt Remissionen, aber viele, viele bleiben krank! Auch mit #LongCovid! Ihr wollt den Scheiß nicht haben! Und ihr schützt euch damit nicht nur selbst, sondern solidarisiert euch mit anderen.
♥️
Der Professor für Informatik, Otmar #Hiliges, verlässt die #ETH#Zürich. Er hat #LongCOVID und #MECFS und ist nicht mehr in der Lage zu arbeiten. Einer seiner Söhne ist ebenfalls erkrankt.
· A new study in PNAS found elevated oxidative stress was a shared characteristic in both #MECFS and #LongCOVID
· RECOVER-Treating Long COVID, the clinical trials initiative run by the Foundation for the NIAID, has announced that it will hold a second annual hybrid workshop discussing the initiative’s research
· A clinical trial in the U.K. called PHOSP-I is recruiting to test the monoclonal antibody Tocilizumab
https://thesicktimes.org/2025/07/15/research-updates-july-15/
Michael Bacon
boosted
Folks with chronic health issues, I can't stress enough how much a good sun hoodie has helped me with handling summer
They're marketed toward outdoor athletes, and most of us with chronic illness are pretty outside that circle so you may have missed their awesomeness!
Here's a good video on comparisons between hoodies. I have two, one REI brand that seems to work well, and a Taema from Arcteryx that works a bit better.
(1/2)
Folks with chronic health issues, I can't stress enough how much a good sun hoodie has helped me with handling summer
They're marketed toward outdoor athletes, and most of us with chronic illness are pretty outside that circle so you may have missed their awesomeness!
Here's a good video on comparisons between hoodies. I have two, one REI brand that seems to work well, and a Taema from Arcteryx that works a bit better.
(1/2)
Woozle Hypertwin
boosted
Upcoming documentary about #MECFS: What Doesn't Kill You
Submit your story to potentially be featured in the film here: https://mecfsstories.com/
Teaser trailer in next post.
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Teaser for the upcoming documentary "What Doesn't Kill You".
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Another link:
https://whatdoesntkillyou.movie
#mecfs
@mecfs
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Teaser for the upcoming documentary "What Doesn't Kill You".
Upcoming documentary about #MECFS: What Doesn't Kill You
Submit your story to potentially be featured in the film here: https://mecfsstories.com/
Teaser trailer in next post.
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