@valebodi.bsky.social
Surviving MyalgicE, AAG & CVID to tell the story, patient & advocate w/ a JD. Into MEdical, Social & Climate Justice & Arts. Human neutrino/ PwME = MEdical apolide/ Gnarled pacer. MEssLand Worldwide https://www.tandfonline.com/doi/pdf/10.2217/fmb-2022-0031
Pinned
Reposted
Can you imagine a vaccine that prevents and protects our sons and daughters from cancer?!!?Can you imagine denying our children this protection?!?Vaccination works & science is marvellous 😊
November 26, 2025 at 10:56 PM
Can you imagine a vaccine that prevents and protects our sons and daughters from cancer?!!?Can you imagine denying our children this protection?!?Vaccination works & science is marvellous 😊
Reposted
An incredibly important read from our friend @seemiaroll.bsky.social
"Obtaining an education is one of the best ways to help disabled people secure a stable income—and by weakening the IDEA, the Trump administration is trying to take those opportunities away."
"Obtaining an education is one of the best ways to help disabled people secure a stable income—and by weakening the IDEA, the Trump administration is trying to take those opportunities away."
Weakening the IDEA Threatens Millions of Disabled Americans Like Me
Ives-Rublee: Federal law made it possible for disabled students like me to go to school. Those opportunities may vanish for the next generation.
www.the74million.org
November 26, 2025 at 11:07 PM
An incredibly important read from our friend @seemiaroll.bsky.social
"Obtaining an education is one of the best ways to help disabled people secure a stable income—and by weakening the IDEA, the Trump administration is trying to take those opportunities away."
"Obtaining an education is one of the best ways to help disabled people secure a stable income—and by weakening the IDEA, the Trump administration is trying to take those opportunities away."
Reposted
If you're interested, this tribute to Alice Wong was written by one of the people who knew her best
www.thenation.com/article/soci...
www.thenation.com/article/soci...
A Tribute to an Oracle, Alice Wong
Alice had the ability to look to the future and a world where laws and attitudes did not keep disabled people poor, pitied, and isolated.
www.thenation.com
November 26, 2025 at 11:18 PM
If you're interested, this tribute to Alice Wong was written by one of the people who knew her best
www.thenation.com/article/soci...
www.thenation.com/article/soci...
Reposted
Considering holding a pay-as-you're-able talk. People in the #NEISvoid, what would you consider valuable to you? Please do share as well ❤️
November 18, 2025 at 4:40 PM
Considering holding a pay-as-you're-able talk. People in the #NEISvoid, what would you consider valuable to you? Please do share as well ❤️
“The function of the comparison to AIDS relates to how societies react to those viral threats, to get people to understand that this is serious. Not just for us, but likely for you too.”
Via @drelke.bsky.social
#LongCOVID #PAIS
Via @drelke.bsky.social
#LongCOVID #PAIS
November 26, 2025 at 3:24 PM
“The function of the comparison to AIDS relates to how societies react to those viral threats, to get people to understand that this is serious. Not just for us, but likely for you too.”
Via @drelke.bsky.social
#LongCOVID #PAIS
Via @drelke.bsky.social
#LongCOVID #PAIS
Reposted
8) You can support OMF's work by donating using this form:
www.omf.ngo/?form=do...
All donations to OMF are tripled until December 2, 2025.
www.omf.ngo/?form=do...
All donations to OMF are tripled until December 2, 2025.
OMF Home - Open Medicine Foundation
ME/CFS & Long COVID are life-altering illnesses. Together, we can move research further, faster.
www.omf.ngo
November 26, 2025 at 9:34 AM
8) You can support OMF's work by donating using this form:
www.omf.ngo/?form=do...
All donations to OMF are tripled until December 2, 2025.
www.omf.ngo/?form=do...
All donations to OMF are tripled until December 2, 2025.
Reposted
7) The video also includes insights from another OMF director, Dr. Wenzhong Xiao, who comments about current data and exploring treatment options, including supplements.
Link:
Link:
An Interview with Chris Armstrong, PhD and Wenzhong Xiao, PhD
In an interview with Dr. Chris Armstrong and Dr. Wenzhong Xiao, two of OMF’s Directors, they talk about what they think is going on in ME/CFS, including differences in producing energy and the immune and central nervous systems being out of balance.
All donations to OMF are TRIPLED until December 2
www.youtube.com
November 26, 2025 at 9:34 AM
7) The video also includes insights from another OMF director, Dr. Wenzhong Xiao, who comments about current data and exploring treatment options, including supplements.
Link:
Link:
Reposted
6) They are exploring this further in the large BioQuest study. It plans to measure many proteins and metabolites in blood samples of up to 1000 patients and controls that have already been collected.
More info about this study here:
More info about this study here:
Update: A large-scale ME/CFS biomarker project (BioQuest) - Open Medicine Foundation
Explore OMF’s BioQuest, a large-scale ME/CFS biomarker study looking at metabolomics, proteomics, and cytokines.
www.omf.ngo
November 26, 2025 at 9:33 AM
6) They are exploring this further in the large BioQuest study. It plans to measure many proteins and metabolites in blood samples of up to 1000 patients and controls that have already been collected.
More info about this study here:
More info about this study here:
Reposted
5) Dr. Armstrong connects this to his findings of metabolomics studies, which OMF focuses on. They found changes in amino acids and lipids in ME/CFS: those two things seem to stand out.
And these look like changes in the fuel for the ATP engines.
And these look like changes in the fuel for the ATP engines.
November 26, 2025 at 9:33 AM
5) Dr. Armstrong connects this to his findings of metabolomics studies, which OMF focuses on. They found changes in amino acids and lipids in ME/CFS: those two things seem to stand out.
And these look like changes in the fuel for the ATP engines.
And these look like changes in the fuel for the ATP engines.
Reposted
3) In addition to that, there might be a lot of bodily processes that ME/CFS patients can't control that use up a lot of ATP, such as immune activation or inappropriate release of adrenaline for POTS.
November 26, 2025 at 9:33 AM
3) In addition to that, there might be a lot of bodily processes that ME/CFS patients can't control that use up a lot of ATP, such as immune activation or inappropriate release of adrenaline for POTS.
Reposted
2) By fuel, he means the supply from the blood of nutrients and oxygen, but also the cleaning up of byproducts from those fuels. These are all factors that can make energy production less efficient.
November 26, 2025 at 9:33 AM
2) By fuel, he means the supply from the blood of nutrients and oxygen, but also the cleaning up of byproducts from those fuels. These are all factors that can make energy production less efficient.
Reposted
1) In this new @OpenMedF video, Dr. Chris Armstrong explains his main hypothesis of ME/CFS.
He suspects there is an inefficiency in producing ATP (energy), but this isn’t only about mitochondria (the engines), but also about the fuel they get...
He suspects there is an inefficiency in producing ATP (energy), but this isn’t only about mitochondria (the engines), but also about the fuel they get...
November 26, 2025 at 9:33 AM
1) In this new @OpenMedF video, Dr. Chris Armstrong explains his main hypothesis of ME/CFS.
He suspects there is an inefficiency in producing ATP (energy), but this isn’t only about mitochondria (the engines), but also about the fuel they get...
He suspects there is an inefficiency in producing ATP (energy), but this isn’t only about mitochondria (the engines), but also about the fuel they get...
Reposted
⏳ The #YEVienna2025 workshop is happening next week!
Next up in our speaker highlights is Dr Sussane Meyer ✨
Her talk, “Health economic perspective on Long COVID”, will look at how Long COVID affects healthcare systems and why its economic impact matters.
Next up in our speaker highlights is Dr Sussane Meyer ✨
Her talk, “Health economic perspective on Long COVID”, will look at how Long COVID affects healthcare systems and why its economic impact matters.
November 19, 2025 at 12:17 PM
⏳ The #YEVienna2025 workshop is happening next week!
Next up in our speaker highlights is Dr Sussane Meyer ✨
Her talk, “Health economic perspective on Long COVID”, will look at how Long COVID affects healthcare systems and why its economic impact matters.
Next up in our speaker highlights is Dr Sussane Meyer ✨
Her talk, “Health economic perspective on Long COVID”, will look at how Long COVID affects healthcare systems and why its economic impact matters.
Reposted
⏳ The #YEVienna2025 workshop is happening next week!
We’re kicking off our speaker highlights with Dr Kathryn Hoffmann ✨
Her talk, “ME/CFS in Social Sciences”, will explore ME/CFS in primary care and public health through the lens of social sciences — and why this approach is so important.
We’re kicking off our speaker highlights with Dr Kathryn Hoffmann ✨
Her talk, “ME/CFS in Social Sciences”, will explore ME/CFS in primary care and public health through the lens of social sciences — and why this approach is so important.
November 18, 2025 at 9:39 AM
⏳ The #YEVienna2025 workshop is happening next week!
We’re kicking off our speaker highlights with Dr Kathryn Hoffmann ✨
Her talk, “ME/CFS in Social Sciences”, will explore ME/CFS in primary care and public health through the lens of social sciences — and why this approach is so important.
We’re kicking off our speaker highlights with Dr Kathryn Hoffmann ✨
Her talk, “ME/CFS in Social Sciences”, will explore ME/CFS in primary care and public health through the lens of social sciences — and why this approach is so important.
Reposted
⏳ Just one week to go until #YEVienna2025!
Today’s speaker highlight: Dr Ana Weidenauer ✨
She’ll present on innovative therapies for Long Covid and ME/CFS, drawing on her clinical work at Vienna General Hospital.
Today’s speaker highlight: Dr Ana Weidenauer ✨
She’ll present on innovative therapies for Long Covid and ME/CFS, drawing on her clinical work at Vienna General Hospital.
November 20, 2025 at 8:11 AM
⏳ Just one week to go until #YEVienna2025!
Today’s speaker highlight: Dr Ana Weidenauer ✨
She’ll present on innovative therapies for Long Covid and ME/CFS, drawing on her clinical work at Vienna General Hospital.
Today’s speaker highlight: Dr Ana Weidenauer ✨
She’ll present on innovative therapies for Long Covid and ME/CFS, drawing on her clinical work at Vienna General Hospital.
Reposted
⏳ The #YEVienna2025 workshop is happening next week!
Next up in our speaker highlights is Dr Eva Untersmayer-Eisenhuber ✨
She’ll present “From basic research to clinical application: translation of interdisciplinary research in ME/CFS”.
Next up in our speaker highlights is Dr Eva Untersmayer-Eisenhuber ✨
She’ll present “From basic research to clinical application: translation of interdisciplinary research in ME/CFS”.
November 21, 2025 at 9:48 AM
⏳ The #YEVienna2025 workshop is happening next week!
Next up in our speaker highlights is Dr Eva Untersmayer-Eisenhuber ✨
She’ll present “From basic research to clinical application: translation of interdisciplinary research in ME/CFS”.
Next up in our speaker highlights is Dr Eva Untersmayer-Eisenhuber ✨
She’ll present “From basic research to clinical application: translation of interdisciplinary research in ME/CFS”.
Reposted
⏳ Just 1 day to go until #YEVienna2025!
Today we’re highlighting Dr Esra Güç ✨
She’ll speak on “Unraveling T Cell Dysfunction in ME/CFS: Science and Career Insights”, sharing both scientific perspectives and her career journey.
Today we’re highlighting Dr Esra Güç ✨
She’ll speak on “Unraveling T Cell Dysfunction in ME/CFS: Science and Career Insights”, sharing both scientific perspectives and her career journey.
November 26, 2025 at 1:03 PM
⏳ Just 1 day to go until #YEVienna2025!
Today we’re highlighting Dr Esra Güç ✨
She’ll speak on “Unraveling T Cell Dysfunction in ME/CFS: Science and Career Insights”, sharing both scientific perspectives and her career journey.
Today we’re highlighting Dr Esra Güç ✨
She’ll speak on “Unraveling T Cell Dysfunction in ME/CFS: Science and Career Insights”, sharing both scientific perspectives and her career journey.
Reposted
⏳ #YEVienna2025 starts tomorrow!
Today we’re highlighting the ME/CFS Lab Rotation Programme with Dr Grace Liu ✨
She’ll introduce funding and rotation opportunities for young ME/CFS researchers — and attendees will also have the chance to speak directly with potential host PIs during the workshop.
Today we’re highlighting the ME/CFS Lab Rotation Programme with Dr Grace Liu ✨
She’ll introduce funding and rotation opportunities for young ME/CFS researchers — and attendees will also have the chance to speak directly with potential host PIs during the workshop.
November 26, 2025 at 1:12 PM
⏳ #YEVienna2025 starts tomorrow!
Today we’re highlighting the ME/CFS Lab Rotation Programme with Dr Grace Liu ✨
She’ll introduce funding and rotation opportunities for young ME/CFS researchers — and attendees will also have the chance to speak directly with potential host PIs during the workshop.
Today we’re highlighting the ME/CFS Lab Rotation Programme with Dr Grace Liu ✨
She’ll introduce funding and rotation opportunities for young ME/CFS researchers — and attendees will also have the chance to speak directly with potential host PIs during the workshop.
Reposted
⏳There’s only ONE WEEK LEFT to triple your impact. Every dollar you donate to OMF will be TRIPLED—up to $1 million—through December 2, 2025!
Act now before the match runs out! Donate hope 👉 www.omf.ngo?form=donate-....
Act now before the match runs out! Donate hope 👉 www.omf.ngo?form=donate-....
November 25, 2025 at 7:19 PM
⏳There’s only ONE WEEK LEFT to triple your impact. Every dollar you donate to OMF will be TRIPLED—up to $1 million—through December 2, 2025!
Act now before the match runs out! Donate hope 👉 www.omf.ngo?form=donate-....
Act now before the match runs out! Donate hope 👉 www.omf.ngo?form=donate-....
Reposted
We've had another study published 🥳
"Pacing with a heart rate monitor for people with myalgic encephalomyelitis/chronic fatigue syndrome and long COVID: a feasibility study"
Open access link here. Summary below (1)
www.tandfonline.com/doi/full/10....
"Pacing with a heart rate monitor for people with myalgic encephalomyelitis/chronic fatigue syndrome and long COVID: a feasibility study"
Open access link here. Summary below (1)
www.tandfonline.com/doi/full/10....
Taylor & Francis Online: Peer-reviewed Journals
Search and explore the millions of quality, peer-reviewed journal articles published under the Taylor & Francis, Routledge and Dove Medical Press imprints.
tandfonline.com
October 15, 2025 at 11:46 AM
We've had another study published 🥳
"Pacing with a heart rate monitor for people with myalgic encephalomyelitis/chronic fatigue syndrome and long COVID: a feasibility study"
Open access link here. Summary below (1)
www.tandfonline.com/doi/full/10....
"Pacing with a heart rate monitor for people with myalgic encephalomyelitis/chronic fatigue syndrome and long COVID: a feasibility study"
Open access link here. Summary below (1)
www.tandfonline.com/doi/full/10....
Reposted
Physios for ME: An international survey exploring the experiences of healthcare professionals living with Long COVID (with post-exertional malaise) and ME/CFS - closes 31st December at 6pm
www.physiosforme.com/hcpwithmesur...
#MECFS #LongCovid #HealthcareProfessionals
www.physiosforme.com/hcpwithmesur...
#MECFS #LongCovid #HealthcareProfessionals
November 21, 2025 at 9:31 AM
Physios for ME: An international survey exploring the experiences of healthcare professionals living with Long COVID (with post-exertional malaise) and ME/CFS - closes 31st December at 6pm
www.physiosforme.com/hcpwithmesur...
#MECFS #LongCovid #HealthcareProfessionals
www.physiosforme.com/hcpwithmesur...
#MECFS #LongCovid #HealthcareProfessionals
Whilst it is not surprising to find that some people in this survey have gone on to develop type 2 diabetes after being diagnosed with #ME/CFS it was interesting to note that 16% in this sample developed type 1 (insulin requiring) diabetes.
In relation to metformin, a diabetic control drug that is
In relation to metformin, a diabetic control drug that is
Recently, we conducted two surveys; one to cover Diabetes, and the other to collect data on whether Metformin had any notable effect on your ME/CFS symptoms.
Please see the results on the blog: https://meassociation.org.uk/aavw
#pwME #MyalgicE #MECFS #Diabetes #Metformin
Please see the results on the blog: https://meassociation.org.uk/aavw
#pwME #MyalgicE #MECFS #Diabetes #Metformin
Website Survey: Diabetes Survey Results - The ME Association
Recently, we conducted two surveys; one to cover Diabetes, and […]
meassociation.org.uk
November 25, 2025 at 5:56 PM
Whilst it is not surprising to find that some people in this survey have gone on to develop type 2 diabetes after being diagnosed with #ME/CFS it was interesting to note that 16% in this sample developed type 1 (insulin requiring) diabetes.
In relation to metformin, a diabetic control drug that is
In relation to metformin, a diabetic control drug that is
“Because #ME/CFS doesn't belong in psychiatry, psychosomatic or rehab medicine,
it must be discussed
at the #DGPPN congress during the symposium, together with
@scheibenbogen.bsky.social
@buechnerronja.bsky.social
and Jana Schweiger,
November 27th in Berlin.”
@bettinagrande.bsky.social
#PEM
it must be discussed
at the #DGPPN congress during the symposium, together with
@scheibenbogen.bsky.social
@buechnerronja.bsky.social
and Jana Schweiger,
November 27th in Berlin.”
@bettinagrande.bsky.social
#PEM
November 25, 2025 at 5:44 PM
“Because #ME/CFS doesn't belong in psychiatry, psychosomatic or rehab medicine,
it must be discussed
at the #DGPPN congress during the symposium, together with
@scheibenbogen.bsky.social
@buechnerronja.bsky.social
and Jana Schweiger,
November 27th in Berlin.”
@bettinagrande.bsky.social
#PEM
it must be discussed
at the #DGPPN congress during the symposium, together with
@scheibenbogen.bsky.social
@buechnerronja.bsky.social
and Jana Schweiger,
November 27th in Berlin.”
@bettinagrande.bsky.social
#PEM
Reposted
COVID outbreak risk remains in #ONhealth hospitals without layers of protection.
Universal masking in ALL areas of #Ontario hospitals is essential for safe healthcare access.
Let regional decision-makers know this is a priority.
@safecare.initiative.works
Take action:
safecare.initiative.works
Universal masking in ALL areas of #Ontario hospitals is essential for safe healthcare access.
Let regional decision-makers know this is a priority.
@safecare.initiative.works
Take action:
safecare.initiative.works
Safe Care Ontario
Advocating for universal masking protections in healthcare and other mitigation tools. Airborne pathogens like SARS-CoV-2, the virus that causes the COVID-19 disease, pose a risk to EVERYONE's health ...
safecare.initiative.works
November 25, 2025 at 2:22 AM
COVID outbreak risk remains in #ONhealth hospitals without layers of protection.
Universal masking in ALL areas of #Ontario hospitals is essential for safe healthcare access.
Let regional decision-makers know this is a priority.
@safecare.initiative.works
Take action:
safecare.initiative.works
Universal masking in ALL areas of #Ontario hospitals is essential for safe healthcare access.
Let regional decision-makers know this is a priority.
@safecare.initiative.works
Take action:
safecare.initiative.works
Reposted
We need masks in healthcare...ALWAYS
Patient came in with sore throat. While waiting for rapid Strep test result we glanced back at the Covid-19 RAT result: positive. Reminder that masking in health care makes sense, if you don’t want everyone in your waiting room to go home sick, your staff to get sick, and physicians to get sick.
November 25, 2025 at 5:10 PM
We need masks in healthcare...ALWAYS