@slowedzo.bsky.social
Epidemiologist with severe #MECFS #LongCOVID #POTS #MyalgicEncephalomyelitis
Social Justice, Public Health, Medical Science, Research Methods, Infection Associated Chronic Illness, Queer and Disability Pride
Social Justice, Public Health, Medical Science, Research Methods, Infection Associated Chronic Illness, Queer and Disability Pride
Reposted
this sentence from Todd is a huge and painful truth
“ME/CFS is still the most common thing nobody's ever heard of”
I’ll quote it several times in my life I guess
“ME/CFS is still the most common thing nobody's ever heard of”
I’ll quote it several times in my life I guess
1.7% of a population with a large closed health system in the U.S. had ME/CFS-like illness as defined by IOM criteria. 14% of all cases had COVID-19 as a precipitating factor.
ME/CFS is still the most common thing nobody's ever heard of. journals.plos.org/plosone/arti...
ME/CFS is still the most common thing nobody's ever heard of. journals.plos.org/plosone/arti...
Impact of COVID-19 on myalgic encephalomyelitis/chronic fatigue syndrome-like illness prevalence: A cross-sectional survey
Background Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) can be triggered by infectious agents including severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2). However, the impact...
journals.plos.org
November 26, 2024 at 7:00 PM
this sentence from Todd is a huge and painful truth
“ME/CFS is still the most common thing nobody's ever heard of”
I’ll quote it several times in my life I guess
“ME/CFS is still the most common thing nobody's ever heard of”
I’ll quote it several times in my life I guess
Reposted
As an emergency physician from day 1 of the pandemic, who was offered a COVID vaccine the first week it was available, I had watched young, healthy people die in alarming ways, but I was worried about sticking this stuff into my arm that was approved under an emergency authorization. 1/
Today’s class session in my introductory public health class is going to be entirely devoted to an overview of how vaccines work and how they are researched and regulated. I believe it is my responsibility as a public health professor to share this information and be available to discuss questions.
November 21, 2024 at 1:54 PM
As an emergency physician from day 1 of the pandemic, who was offered a COVID vaccine the first week it was available, I had watched young, healthy people die in alarming ways, but I was worried about sticking this stuff into my arm that was approved under an emergency authorization. 1/
Reposted
Stigma occurs when the story of those with lived experience differs from the story being told — and when this ‘told story’ devalues their identity. That’s why it’s important to listen to those with lived experience.
#pwme #mecfs #chronicillness #disabilityjustice
#pwme #mecfs #chronicillness #disabilityjustice
November 21, 2024 at 2:56 PM
Stigma occurs when the story of those with lived experience differs from the story being told — and when this ‘told story’ devalues their identity. That’s why it’s important to listen to those with lived experience.
#pwme #mecfs #chronicillness #disabilityjustice
#pwme #mecfs #chronicillness #disabilityjustice
Reposted
So great to connect with people in the #ChronicIllness community. Here’s our animation on energy limiting conditions. youtu.be/AtdpgiNs_xg?... Animation by @stacybias.bsky.social & @fourfooteleven.bsky.social Research with @alisonallam.bsky.social @thelrm.bsky.social #NEISVoid #ME/CFS #LongCovid
Disbelief and Disregard in Health and Social Care for people with Energy Limiting Conditions
YouTube video by Challenging Disbelief and Disregard
youtu.be
November 19, 2024 at 6:55 PM
So great to connect with people in the #ChronicIllness community. Here’s our animation on energy limiting conditions. youtu.be/AtdpgiNs_xg?... Animation by @stacybias.bsky.social & @fourfooteleven.bsky.social Research with @alisonallam.bsky.social @thelrm.bsky.social #NEISVoid #ME/CFS #LongCovid
Reposted
Day 98 - Realizing no outside help is coming, you hit the online forums hard to see if anyone has found a way to improve. The answer is yes, and no, but mostly maybe, kind of, a little, I guess. Undaunted, you try one thing, then another. But not the hook worms. That's just weird. #LC #LongCOVID
November 18, 2024 at 4:24 AM
Day 98 - Realizing no outside help is coming, you hit the online forums hard to see if anyone has found a way to improve. The answer is yes, and no, but mostly maybe, kind of, a little, I guess. Undaunted, you try one thing, then another. But not the hook worms. That's just weird. #LC #LongCOVID
Reposted
The Parliamentary Friends of #mecfs meeting in Canberra has opened with the Minister for Health and Aged Care. He recognised that a clinical guideline that is more than 20 years old is inadequate, and his government is proud to have supported its update.
There are 170 people watching online.
There are 170 people watching online.
November 18, 2024 at 12:30 AM
The Parliamentary Friends of #mecfs meeting in Canberra has opened with the Minister for Health and Aged Care. He recognised that a clinical guideline that is more than 20 years old is inadequate, and his government is proud to have supported its update.
There are 170 people watching online.
There are 170 people watching online.
Reposted
“Infection-associated chronic conditions: Why Long Covid is our best chance to untangle Osler’s web” by Michael J. Peluso, Maureen R. Hanson, and Steven G. Deeks
👉 www.science.org/doi/10.1126/...
👉 www.science.org/doi/10.1126/...
Infection-associated chronic conditions: Why Long Covid is our best chance to untangle Osler’s web
A research agenda that studies Long Covid in the context of related conditions could transform our understanding of these disabling illnesses.
www.science.org
November 15, 2024 at 4:16 PM
“Infection-associated chronic conditions: Why Long Covid is our best chance to untangle Osler’s web” by Michael J. Peluso, Maureen R. Hanson, and Steven G. Deeks
👉 www.science.org/doi/10.1126/...
👉 www.science.org/doi/10.1126/...
Reposted
I would love to tell you about the times vaccines prevented me from getting sick, but every time it happens, I don’t notice. I just keep feeling well.
Neither do you.
Public health, when it’s working, is invisible.
Neither do you.
Public health, when it’s working, is invisible.
November 15, 2024 at 11:20 AM
I would love to tell you about the times vaccines prevented me from getting sick, but every time it happens, I don’t notice. I just keep feeling well.
Neither do you.
Public health, when it’s working, is invisible.
Neither do you.
Public health, when it’s working, is invisible.
Reposted
💫To help build our community, as Bluesky goes from strength to strength, we're going to start a STARTER PACK 🧵
If you have a good one please add it to the list!
go.bsky.app/Ba6FATY
If you have a good one please add it to the list!
go.bsky.app/Ba6FATY
November 8, 2024 at 9:15 AM
💫To help build our community, as Bluesky goes from strength to strength, we're going to start a STARTER PACK 🧵
If you have a good one please add it to the list!
go.bsky.app/Ba6FATY
If you have a good one please add it to the list!
go.bsky.app/Ba6FATY
Reposted
A post to pin to my profile—hope this starter pack helps you find some familiar faces!
Note: starter packs currently have a 150-account limit so it’s necessarily a very incomplete list; if you see anyone missing (like yourself!), I encourage you to start another pack to cover more of the community!
Note: starter packs currently have a 150-account limit so it’s necessarily a very incomplete list; if you see anyone missing (like yourself!), I encourage you to start another pack to cover more of the community!
November 9, 2024 at 1:43 AM
A post to pin to my profile—hope this starter pack helps you find some familiar faces!
Note: starter packs currently have a 150-account limit so it’s necessarily a very incomplete list; if you see anyone missing (like yourself!), I encourage you to start another pack to cover more of the community!
Note: starter packs currently have a 150-account limit so it’s necessarily a very incomplete list; if you see anyone missing (like yourself!), I encourage you to start another pack to cover more of the community!
Reposted
Here’s the thing with symptom-titrated exercise in #MECFS, friends:
1. You never get away from the energy robbing nature of this disease
2. Never
3. See #1 and #2
If all your patients miraculously seem to improve in response to your special exercise regimen, they’re probably talking to me instead.
1. You never get away from the energy robbing nature of this disease
2. Never
3. See #1 and #2
If all your patients miraculously seem to improve in response to your special exercise regimen, they’re probably talking to me instead.
November 16, 2024 at 7:03 AM
Here’s the thing with symptom-titrated exercise in #MECFS, friends:
1. You never get away from the energy robbing nature of this disease
2. Never
3. See #1 and #2
If all your patients miraculously seem to improve in response to your special exercise regimen, they’re probably talking to me instead.
1. You never get away from the energy robbing nature of this disease
2. Never
3. See #1 and #2
If all your patients miraculously seem to improve in response to your special exercise regimen, they’re probably talking to me instead.