Alex
@admiringbog.bsky.social
person with ME/CFS
professional slug
professional slug
Reposted by Alex
There should be infinitely more interest in this medical mystery.
How many doctors can even name the phenomenon described below?
I’ll give a hint: it’s the hallmark of a disease that affects 1.3% of US adults, per CDC. (So docs should know about it!)
#MedSky
How many doctors can even name the phenomenon described below?
I’ll give a hint: it’s the hallmark of a disease that affects 1.3% of US adults, per CDC. (So docs should know about it!)
#MedSky
November 20, 2025 at 8:13 AM
There should be infinitely more interest in this medical mystery.
How many doctors can even name the phenomenon described below?
I’ll give a hint: it’s the hallmark of a disease that affects 1.3% of US adults, per CDC. (So docs should know about it!)
#MedSky
How many doctors can even name the phenomenon described below?
I’ll give a hint: it’s the hallmark of a disease that affects 1.3% of US adults, per CDC. (So docs should know about it!)
#MedSky
Reposted by Alex
Remember the 800 times I’ve said you cannot contain the “let er rip” attitude to just covid? Humans don’t think like that. This was always an obvious consequence, and it’s their own damn fault.
November 19, 2025 at 11:50 PM
Remember the 800 times I’ve said you cannot contain the “let er rip” attitude to just covid? Humans don’t think like that. This was always an obvious consequence, and it’s their own damn fault.
Reposted by Alex
I think what it shows is how our national institutions are failing #pwME - as demonstrated by the PFD report following #MaeveInquest in 2024.
Nothing has changed since the PFD, afaik, but reinforcement of systemic failings described/quoted in government led Final Delivery Plan - and Justice4ME.uk
Nothing has changed since the PFD, afaik, but reinforcement of systemic failings described/quoted in government led Final Delivery Plan - and Justice4ME.uk
November 19, 2025 at 10:55 AM
I think what it shows is how our national institutions are failing #pwME - as demonstrated by the PFD report following #MaeveInquest in 2024.
Nothing has changed since the PFD, afaik, but reinforcement of systemic failings described/quoted in government led Final Delivery Plan - and Justice4ME.uk
Nothing has changed since the PFD, afaik, but reinforcement of systemic failings described/quoted in government led Final Delivery Plan - and Justice4ME.uk
Reposted by Alex
Love these images from MELCuSA's Sick Pride! www.facebook.com/MECFSFoundationSA/posts/pfbid0sE5mGTESDrFPqSA1fnaZiK2bR2C15ExgH2wfvmW5NtqzPFCj7b6wYx5N7dUpaugKl
ME Long Covid unite SA
Yesterday’s SICK Pride gathering was all about articulating our human rights.
For those of us living with ME, Long COVID and other energy-limiting diseases, our rights to healthcare, equality and...
www.facebook.com
November 18, 2025 at 3:39 AM
Love these images from MELCuSA's Sick Pride! www.facebook.com/MECFSFoundationSA/posts/pfbid0sE5mGTESDrFPqSA1fnaZiK2bR2C15ExgH2wfvmW5NtqzPFCj7b6wYx5N7dUpaugKl
Reposted by Alex
Remarkable how challenging this concept can be in a medical setting 🫠
repeat with me: absence of evidence does not equal evidence of absence
November 17, 2025 at 7:56 PM
Remarkable how challenging this concept can be in a medical setting 🫠
Reposted by Alex
if there was a way to power through ME/CFS with exercise, no-one would have ME/CFS. it's the first thing almost anyone tries.
November 15, 2025 at 9:25 PM
if there was a way to power through ME/CFS with exercise, no-one would have ME/CFS. it's the first thing almost anyone tries.
Reposted by Alex
"You think your pain and your heartbreak are unprecedented in the history of the world, but then you read." - James Baldwin
November 15, 2025 at 12:30 PM
"You think your pain and your heartbreak are unprecedented in the history of the world, but then you read." - James Baldwin
Reposted by Alex
#pwME #LongCovid #ME One of the medical expressions I hate most: 'suboptimal'.
It means 'we f-ked up and don't know what else to do' but nobody but the in-group medics know.
Angry. Yes, I am, still.
Living with unrelenting rage is tiring. Hopefully it is shortening my life expectancy.
It means 'we f-ked up and don't know what else to do' but nobody but the in-group medics know.
Angry. Yes, I am, still.
Living with unrelenting rage is tiring. Hopefully it is shortening my life expectancy.
November 14, 2025 at 6:49 PM
#pwME #LongCovid #ME One of the medical expressions I hate most: 'suboptimal'.
It means 'we f-ked up and don't know what else to do' but nobody but the in-group medics know.
Angry. Yes, I am, still.
Living with unrelenting rage is tiring. Hopefully it is shortening my life expectancy.
It means 'we f-ked up and don't know what else to do' but nobody but the in-group medics know.
Angry. Yes, I am, still.
Living with unrelenting rage is tiring. Hopefully it is shortening my life expectancy.
Reposted by Alex
Every dollar fuels groundbreaking research to find life-changing answers. All donations to OMF to help further biomedical research on #ME/CFS are tripled from November 1 through December 2, 2025:
www.omf.ong
www.omf.ong
OMF Home - Open Medicine Foundation
ME/CFS & Long COVID are life-altering illnesses. Together, we can move research further, faster.
www.omf.ong
November 13, 2025 at 6:27 AM
Every dollar fuels groundbreaking research to find life-changing answers. All donations to OMF to help further biomedical research on #ME/CFS are tripled from November 1 through December 2, 2025:
www.omf.ong
www.omf.ong
Reposted by Alex
Ah yes. I listened to a story about this where the teacher didn’t realize there was a problem (and basically blamed the students) until their own kid was struggling. Reminds me a lot of doctors who don’t believe ME/CFS is real until they have it themselves.
November 12, 2025 at 3:29 AM
Ah yes. I listened to a story about this where the teacher didn’t realize there was a problem (and basically blamed the students) until their own kid was struggling. Reminds me a lot of doctors who don’t believe ME/CFS is real until they have it themselves.
Reposted by Alex
So I try not to give too many gory details about life with long covid, but I also think it’s important to give a clear picture of what can happen to anyone.
Over the last yearish, I’ve become allergic to more than 70 foods. Today I lost soy. I’m not how long I can keep eating at all.
Over the last yearish, I’ve become allergic to more than 70 foods. Today I lost soy. I’m not how long I can keep eating at all.
November 12, 2025 at 2:53 AM
So I try not to give too many gory details about life with long covid, but I also think it’s important to give a clear picture of what can happen to anyone.
Over the last yearish, I’ve become allergic to more than 70 foods. Today I lost soy. I’m not how long I can keep eating at all.
Over the last yearish, I’ve become allergic to more than 70 foods. Today I lost soy. I’m not how long I can keep eating at all.
Reposted by Alex
welcoming committee at Masked choir. .we sing in N95 masks with open doors and air purifiers
November 11, 2025 at 7:59 AM
welcoming committee at Masked choir. .we sing in N95 masks with open doors and air purifiers
If you can, please share/donate this fundraiser for my friend Siraj and his brother Ribhi:
www.gofundme.com/f/ribhi-and-...
www.gofundme.com/f/ribhi-and-...
Donate to Ribhi And His Family In Gaza, organized by Lujain Sarrar
Beneath the Ruins of Memory
In the heart of Gaza, our life was simple — filled with lov… Lujain Sarrar needs your support for Ribhi And His Family In Gaza
www.gofundme.com
November 9, 2025 at 11:40 PM
If you can, please share/donate this fundraiser for my friend Siraj and his brother Ribhi:
www.gofundme.com/f/ribhi-and-...
www.gofundme.com/f/ribhi-and-...
Reposted by Alex
Reposted by Alex
the way when doing something that feels meaningful a little piece of you heals at the experience, starved and lapping it up, and another piece of you breaks, at having to rip yourself away from it after only mere minutes, perhaps hours if you’re lucky, never days, only a glimpse #MECFS
November 9, 2025 at 8:28 PM
the way when doing something that feels meaningful a little piece of you heals at the experience, starved and lapping it up, and another piece of you breaks, at having to rip yourself away from it after only mere minutes, perhaps hours if you’re lucky, never days, only a glimpse #MECFS
Reposted by Alex
The simple, honest public health messaging we should’ve seen everywhere from early on in the pandemic. Instead—as with almost every other aspect of modern life—profits & politics were put before people & their health. Protect yourself from #COVID to preserve your long term health.
Long COVID includes a wide range of symptoms and can affect anyone, no matter your age or other health conditions. Learn more, and prevent #LongCOVID by preventing COVID-19!
November 8, 2025 at 4:57 PM
The simple, honest public health messaging we should’ve seen everywhere from early on in the pandemic. Instead—as with almost every other aspect of modern life—profits & politics were put before people & their health. Protect yourself from #COVID to preserve your long term health.
Reposted by Alex
Edmonton has had a disturbingly high number of frostbite amputations the last two winters. With freezing temps on the way, both the City and the Government of Alberta must do more to prevent people from freezing in the cold. edmontonjournal.com/opinion/colu... #ableg #yegcc
Opinion: Edmonton doesn't have to be the frostbite capital of the world
Severe frostbite injuries are entirely preventable - together, let’s work towards a city where no one gets left out in the cold.
edmontonjournal.com
November 8, 2025 at 4:14 AM
Edmonton has had a disturbingly high number of frostbite amputations the last two winters. With freezing temps on the way, both the City and the Government of Alberta must do more to prevent people from freezing in the cold. edmontonjournal.com/opinion/colu... #ableg #yegcc
Reposted by Alex
1) There's a new Medscape article on the ME/CFS treatment trials discussed at the IACFS/ME conference.
- Nacul is testing LDN in Canada
- Scheibenbogen is pursuing immunoadsorption in Germany
- Fluge is trialing daratumumab in Norway
- Sato is testing rituximab again in Japan
- Nacul is testing LDN in Canada
- Scheibenbogen is pursuing immunoadsorption in Germany
- Fluge is trialing daratumumab in Norway
- Sato is testing rituximab again in Japan
November 8, 2025 at 8:36 AM
1) There's a new Medscape article on the ME/CFS treatment trials discussed at the IACFS/ME conference.
- Nacul is testing LDN in Canada
- Scheibenbogen is pursuing immunoadsorption in Germany
- Fluge is trialing daratumumab in Norway
- Sato is testing rituximab again in Japan
- Nacul is testing LDN in Canada
- Scheibenbogen is pursuing immunoadsorption in Germany
- Fluge is trialing daratumumab in Norway
- Sato is testing rituximab again in Japan
Journalists often don’t seem to ask to see the evidence of harassment, which leads to such odd stories where it may very well exist but also maybe not? 💁🏻♀️
"he said his constituency office email and phone line have been the target of “some sort of political ploy” as they have been flooded with messages."
Isn't this just called "acountability"?
#abpoli #ableg #cdnpoli
okotoksonline.com/articles/no-...
Isn't this just called "acountability"?
#abpoli #ableg #cdnpoli
okotoksonline.com/articles/no-...
‘No one should endure this’: Sigurdson responds to recent harassment
RJ Sigurdson responded to recently endured harassment in a Facebook post to the community. He wrote, “I am writing now not as your elected representative, but as a fellow member of this community — s...
okotoksonline.com
November 7, 2025 at 8:06 PM
Journalists often don’t seem to ask to see the evidence of harassment, which leads to such odd stories where it may very well exist but also maybe not? 💁🏻♀️
😬
MKUltra is mentioned here. While I was at McGill, I went to a talk about MKUltra experiments in one of their hospitals. Some older people came to defend one of the doctors involved, saying he came from a good family. Blows my mind what people can overlook. www.thehastingscenter.org/what-researc...
What Research Scandals? Welcome to the Bioethics Memory Hole : The Hastings Center for Bioethics
It is striking how many notorious cases of abuses of human research subjects go almost entirely unmentioned in the bioethics literature.
www.thehastingscenter.org
November 7, 2025 at 7:06 PM
😬
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Will you donate today and help us keep this vital work going? the-sick-times.fundjournalism.org/donate/
November 7, 2025 at 5:59 PM
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