@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
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
Reposted
News: I was accepted into Harvard’s Global Public Health Leadership Program. (A remote program, while still working here in Canada).
In the context of decreased vaccination rates globally, misinformation, and the loss of science literacy, family docs are needed to lead in public health.
Let’s go!
In the context of decreased vaccination rates globally, misinformation, and the loss of science literacy, family docs are needed to lead in public health.
Let’s go!
November 20, 2025 at 5:25 PM
News: I was accepted into Harvard’s Global Public Health Leadership Program. (A remote program, while still working here in Canada).
In the context of decreased vaccination rates globally, misinformation, and the loss of science literacy, family docs are needed to lead in public health.
Let’s go!
In the context of decreased vaccination rates globally, misinformation, and the loss of science literacy, family docs are needed to lead in public health.
Let’s go!
Reposted
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 4:35 PM
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.
Reposted
Gonna pin the most recent of my #HalloweenTombsones here for the year because it’s at lot easier to scroll thru them from the bottom up!
I’m already collecting more for 2026.
I’m already collecting more for 2026.
November 12, 2025 at 4:18 PM
Gonna pin the most recent of my #HalloweenTombsones here for the year because it’s at lot easier to scroll thru them from the bottom up!
I’m already collecting more for 2026.
I’m already collecting more for 2026.
The sensitising effect of IgG in fibromyalgia syndrome is mediated by Mrgprb2 in mast cells
Karla R. Sanchez, Jamie Burgess, Qin Zheng, Uazman Alam, Harvey Neiland, Richard Berwick, David Andersson, Samantha Korver, Anne Marshall, Andreas Goebel, Xinzhong Dong
#Fibromyalgia #MastCells
Karla R. Sanchez, Jamie Burgess, Qin Zheng, Uazman Alam, Harvey Neiland, Richard Berwick, David Andersson, Samantha Korver, Anne Marshall, Andreas Goebel, Xinzhong Dong
#Fibromyalgia #MastCells
The sensitising effect of IgG in fibromyalgia syndrome is mediated by Mrgprb2 in mast cells
Fibromyalgia syndrome (FMS) is characterized by elevated levels of immunoglobulin G (IgG), altered bowel habits, and increased pain sensitivity, suggesting immune dysregulation, but the exact mechanis...
www.biorxiv.org
November 25, 2025 at 5:27 PM
The sensitising effect of IgG in fibromyalgia syndrome is mediated by Mrgprb2 in mast cells
Karla R. Sanchez, Jamie Burgess, Qin Zheng, Uazman Alam, Harvey Neiland, Richard Berwick, David Andersson, Samantha Korver, Anne Marshall, Andreas Goebel, Xinzhong Dong
#Fibromyalgia #MastCells
Karla R. Sanchez, Jamie Burgess, Qin Zheng, Uazman Alam, Harvey Neiland, Richard Berwick, David Andersson, Samantha Korver, Anne Marshall, Andreas Goebel, Xinzhong Dong
#Fibromyalgia #MastCells
Reposted
Whether autoimmunity is involved in ME/CFS has often been asked and produced mixed results, Prof. Dr Carmen Scheibenbogen, former ME Research UK-funded researcher, gave a fascinating talk providing evidence for autoimmunity in ME/CFS and long COVID. tinyurl.com/mx86crua
#MEcfs #LongCovid #CFS #PwME
#MEcfs #LongCovid #CFS #PwME
![AUTOIMMUNITY IN ME/CFS AND LONG COVID
Autoimmunity = the immune system mistakenly targeting the body's own cells/tissues with the help of autoantibodies. This may play a role in a subset of individuals with ME/CFS and/or long COVID. Prof. Dr Scheibenbogen described:
AUTOANTIBODIES IN ME/CFS AND LONG COVID
• Higher levels of GPCR autoantibodies, which correlate with symptom severity • Autoantibodies against nerves • Some autoantibodies correlate with brain changes and pain
EBV MAY TRIGGER AUTOANTIBODIES
• The immune system may accidentally target human proteins that look similar to EBV proteins
ANTIBODY-RELATED TREATMENTS SHOWING PROMISE
• Rituximab (reduces antibody-producing cells) • IgG antibody therapy • Immunoadsorption (removes antibodies) • Daratumumab (reduces antibody-producing cells)
• Not all patients respond to treatment; autoimmunity appears to affect only a subset • Research is ongoing and study sizes are small, but early results fuel hope for targeted therapies
Scheibenbogen, C. (2025, November 13). Autoantibody treatments for ME/CFS and long COVID [Conference presentation]. 2nd International Conference on Clinical and Scientific Advances in ME/CFS and Long COVID, Porto, Portugal. INFORM. INFLUENCE. INVEST. SCO36942](https://cdn.bsky.app/img/feed_thumbnail/plain/did:plc:43rudsv62fuwsmnk7oppgtdy/bafkreie5hwdwftcscrkil4yhjnlvuyi73no24aajo522btjddswd6upchu@jpeg)
November 25, 2025 at 3:08 PM
Whether autoimmunity is involved in ME/CFS has often been asked and produced mixed results, Prof. Dr Carmen Scheibenbogen, former ME Research UK-funded researcher, gave a fascinating talk providing evidence for autoimmunity in ME/CFS and long COVID. tinyurl.com/mx86crua
#MEcfs #LongCovid #CFS #PwME
#MEcfs #LongCovid #CFS #PwME
Reposted
ME Research UK:
Details from last week's Westminster Hall debate on ME in quotes covering research funding, support for those with severe ME and the government's response - tinyurl.com/mw5nek48
#MECFS #PwME #CFS
Details from last week's Westminster Hall debate on ME in quotes covering research funding, support for those with severe ME and the government's response - tinyurl.com/mw5nek48
#MECFS #PwME #CFS
November 25, 2025 at 3:13 PM
ME Research UK:
Details from last week's Westminster Hall debate on ME in quotes covering research funding, support for those with severe ME and the government's response - tinyurl.com/mw5nek48
#MECFS #PwME #CFS
Details from last week's Westminster Hall debate on ME in quotes covering research funding, support for those with severe ME and the government's response - tinyurl.com/mw5nek48
#MECFS #PwME #CFS
Reposted
ME Research UK is pleased to announce an open call for applications for PhD-level research funding, and we welcome proposals from researchers wishing to investigate the causes, consequences and treatment of ME/CFS. meres.uk/apply
#MEcfs #CFS #PwME
#MEcfs #CFS #PwME
November 25, 2025 at 3:24 PM
ME Research UK is pleased to announce an open call for applications for PhD-level research funding, and we welcome proposals from researchers wishing to investigate the causes, consequences and treatment of ME/CFS. meres.uk/apply
#MEcfs #CFS #PwME
#MEcfs #CFS #PwME
Reposted
💡Converging Computation with Clinical Evidence: Dr. Chris Armstrong and Dr. Wenzhong Xiao talk about what they think is going on in #MECFS, including differences in producing energy and the immune and central nervous systems being out of balance.
🔗 ow.ly/OAiK50XxzxY
#precisionmedicine #pwME #pwLC
🔗 ow.ly/OAiK50XxzxY
#precisionmedicine #pwME #pwLC
November 25, 2025 at 4:42 PM
💡Converging Computation with Clinical Evidence: Dr. Chris Armstrong and Dr. Wenzhong Xiao talk about what they think is going on in #MECFS, including differences in producing energy and the immune and central nervous systems being out of balance.
🔗 ow.ly/OAiK50XxzxY
#precisionmedicine #pwME #pwLC
🔗 ow.ly/OAiK50XxzxY
#precisionmedicine #pwME #pwLC
Introducing “Energy Limiting
Conditions”
The Emergence and Evolution of a New Impairment
Concept
Catherine Hale
Independent Researcher, UK
Dr Anna Ruddock
Independent Researcher, UK
Ana Bê
Senior Lecturer in Disability Studies, Liverpool Hope University, Liverpool, UK
#ME/CFS #LongCOVID
Conditions”
The Emergence and Evolution of a New Impairment
Concept
Catherine Hale
Independent Researcher, UK
Dr Anna Ruddock
Independent Researcher, UK
Ana Bê
Senior Lecturer in Disability Studies, Liverpool Hope University, Liverpool, UK
#ME/CFS #LongCOVID
www.scienceopen.com
November 24, 2025 at 6:15 PM
Introducing “Energy Limiting
Conditions”
The Emergence and Evolution of a New Impairment
Concept
Catherine Hale
Independent Researcher, UK
Dr Anna Ruddock
Independent Researcher, UK
Ana Bê
Senior Lecturer in Disability Studies, Liverpool Hope University, Liverpool, UK
#ME/CFS #LongCOVID
Conditions”
The Emergence and Evolution of a New Impairment
Concept
Catherine Hale
Independent Researcher, UK
Dr Anna Ruddock
Independent Researcher, UK
Ana Bê
Senior Lecturer in Disability Studies, Liverpool Hope University, Liverpool, UK
#ME/CFS #LongCOVID
Reposted
Sorry, that link doesn't work.
Full paper: www.scienceopen.com/hosted-docum...
Plain english version: ijdsj.online/wp-content/u...
Full paper: www.scienceopen.com/hosted-docum...
Plain english version: ijdsj.online/wp-content/u...
November 24, 2025 at 6:01 PM
Sorry, that link doesn't work.
Full paper: www.scienceopen.com/hosted-docum...
Plain english version: ijdsj.online/wp-content/u...
Full paper: www.scienceopen.com/hosted-docum...
Plain english version: ijdsj.online/wp-content/u...
Reposted
This is a great piece and it's by a journalism school classmate so have to share. missionlocal.org/2025/11/sf-w...
S.F. has zero electric-wheelchair charging stations. Users are frustrated.
Electric wheelchair users are used to keeping a mental map of where to charge their chairs. The city hasn't done enough to help, they say.
missionlocal.org
November 24, 2025 at 5:52 PM
This is a great piece and it's by a journalism school classmate so have to share. missionlocal.org/2025/11/sf-w...
Reposted
“Public health has been turned inside out by the second administration of Donald Trump… and it is in this landscape that the comeback of Andrew Wakefield no longer feels impossible—it is underway.”
READ MORE by @brandyzadrozny.bsky.social:
www.ms.now/news/the-ret...
READ MORE by @brandyzadrozny.bsky.social:
www.ms.now/news/the-ret...
The doctor who falsely tied vaccines to autism is enjoying a comeback
Andrew Wakefield, who was once cast out for his retracted study tying autism to the MMR vaccine, is making a comeback in the second term of President Donald Trump as an ally of Health and Human Servic...
www.ms.now
November 24, 2025 at 1:17 PM
“Public health has been turned inside out by the second administration of Donald Trump… and it is in this landscape that the comeback of Andrew Wakefield no longer feels impossible—it is underway.”
READ MORE by @brandyzadrozny.bsky.social:
www.ms.now/news/the-ret...
READ MORE by @brandyzadrozny.bsky.social:
www.ms.now/news/the-ret...
Reposted
Andrew Wakefield is a con artist, and our autism community members are his victims. Avoid his dangerous pseudoscience messages at all cost. From @brandyzadrozny.bsky.social:
www.ms.now/news/the-ret... #VaccinesWork #autism #neurodiversity
www.ms.now/news/the-ret... #VaccinesWork #autism #neurodiversity
The doctor who falsely tied vaccines to autism is enjoying a comeback
Andrew Wakefield, who was once cast out for his retracted study tying autism to the MMR vaccine, is making a comeback in the second term of President Donald Trump as an ally of Health and Human Servic...
www.ms.now
November 24, 2025 at 5:52 PM
Andrew Wakefield is a con artist, and our autism community members are his victims. Avoid his dangerous pseudoscience messages at all cost. From @brandyzadrozny.bsky.social:
www.ms.now/news/the-ret... #VaccinesWork #autism #neurodiversity
www.ms.now/news/the-ret... #VaccinesWork #autism #neurodiversity
Reposted
Forty-nine years ago today - 23rd November 1976 - a feature on "Iceland Disease" was broadcast on BBC Radio Four's 'Woman's Hour'.
A questionnaire was referred to in the show.
These are pages 1 & 2 of the draft questionnaire.
#myalgicencephalomyelitis #myalgice #mecfs
A questionnaire was referred to in the show.
These are pages 1 & 2 of the draft questionnaire.
#myalgicencephalomyelitis #myalgice #mecfs
November 23, 2025 at 9:21 AM
Forty-nine years ago today - 23rd November 1976 - a feature on "Iceland Disease" was broadcast on BBC Radio Four's 'Woman's Hour'.
A questionnaire was referred to in the show.
These are pages 1 & 2 of the draft questionnaire.
#myalgicencephalomyelitis #myalgice #mecfs
A questionnaire was referred to in the show.
These are pages 1 & 2 of the draft questionnaire.
#myalgicencephalomyelitis #myalgice #mecfs
Reposted
Segment from WELT (German TV) featuring Federal Research Minister Dorothee Bär discussing Germany’s National Decade Against Post-Infectious Diseases - €500 million for research including #MECFS and #LongCOVID. (English Subtitles - 3 mins)
youtu.be/f84TAp3D_Ng?...
youtu.be/f84TAp3D_Ng?...
Germany’s National Decade Against Post-Infectious Diseases (€500m Research Plan)
YouTube video by Broken Battery
youtu.be
November 24, 2025 at 10:09 AM
Segment from WELT (German TV) featuring Federal Research Minister Dorothee Bär discussing Germany’s National Decade Against Post-Infectious Diseases - €500 million for research including #MECFS and #LongCOVID. (English Subtitles - 3 mins)
youtu.be/f84TAp3D_Ng?...
youtu.be/f84TAp3D_Ng?...
Reposted
“Genetics pioneer Ron Davis says he’s hopeful that revelations from his and other scientists’ research on myalgic encephalomyelitis, or ME/CFS, will move treatments beyond trial-and-error solutions that manage symptoms to instead address the root cause.”
👉 ow.ly/igzM50XwzH2.
👉 ow.ly/igzM50XwzH2.
November 24, 2025 at 3:53 PM
“Genetics pioneer Ron Davis says he’s hopeful that revelations from his and other scientists’ research on myalgic encephalomyelitis, or ME/CFS, will move treatments beyond trial-and-error solutions that manage symptoms to instead address the root cause.”
👉 ow.ly/igzM50XwzH2.
👉 ow.ly/igzM50XwzH2.
Reposted
And if, like me, you struggle with long form reading I recommend the Plain English summary. Gets straight to the point with all the theory stripped out!
Go to Plain English 1 ijdsj.online/current-issue/
#EnergyLimitingConditions #DisabilityInclusion
Go to Plain English 1 ijdsj.online/current-issue/
#EnergyLimitingConditions #DisabilityInclusion
Current Issue – I J D S J
ijdsj.online
November 19, 2025 at 9:46 PM
And if, like me, you struggle with long form reading I recommend the Plain English summary. Gets straight to the point with all the theory stripped out!
Go to Plain English 1 ijdsj.online/current-issue/
#EnergyLimitingConditions #DisabilityInclusion
Go to Plain English 1 ijdsj.online/current-issue/
#EnergyLimitingConditions #DisabilityInclusion
Reposted
So excited to share our new article on energy limiting conditions (ELC) and energy impairment in @ijdsj.bsky.social with Anna Ruddock and Ana Be. Open access www.scienceopen.com/hosted-docum...
It discusses the emancipatory research process that gave rise to these terms >>
It discusses the emancipatory research process that gave rise to these terms >>
November 19, 2025 at 9:46 PM
So excited to share our new article on energy limiting conditions (ELC) and energy impairment in @ijdsj.bsky.social with Anna Ruddock and Ana Be. Open access www.scienceopen.com/hosted-docum...
It discusses the emancipatory research process that gave rise to these terms >>
It discusses the emancipatory research process that gave rise to these terms >>
These findings indicate that booster vaccination can provide additional protection against long COVID, highlighting the importance of seasonal 💉💉💉 against new SARS-CoV-2 variants. They should, however, be interpreted cautiously, given the small number of studies and the low quality of evidence.
A systematic review and meta-analysis of the impact of vaccination on prevention of long COVID - Nature Communications
This meta-analysis demonstrates that people who received COVID-19 vaccination had a lower risk of long COVID compared with those who were unvaccinated during the Omicron era, with booster doses provid...
www.nature.com
November 24, 2025 at 5:02 PM
These findings indicate that booster vaccination can provide additional protection against long COVID, highlighting the importance of seasonal 💉💉💉 against new SARS-CoV-2 variants. They should, however, be interpreted cautiously, given the small number of studies and the low quality of evidence.