Carl
@carlf.bsky.social
ME secondary to Covid vaccination. Provax/vax injured. Research and support those harmed. Current safety monitoring is not effective for these chronic conditions.
Pinned
Carl
@carlf.bsky.social
· Aug 5
Between two crises: Living with Post-COVID Vaccine Syndrome in a Long COVID world - The Sick Times
What I thought was a minor reaction became Post-COVID Vaccine Syndrome (PCVS), a condition I now live with alongside thousands of others. PCVS shares symptoms with Long COVID, including nerve pain, dy...
thesicktimes.org
“I am not anti-vaccine. I am pro-truth, and pro-compassion. I want to see a world where those harmed by both COVID-19 and its countermeasures are acknowledged, studied, and cared for.”
#PCVS #LongVax #LongCovid
thesicktimes.org/2025/07/25/b...
#PCVS #LongVax #LongCovid
thesicktimes.org/2025/07/25/b...
Reposted by Carl
Medicine: "We wish patients were more engaged in care."
Patient: Comes organized with top 3 symptoms, conditions already ruled out, relevant imaging and testing conducted,...
Medicine: "It appears that you are hyperfixated on your symptoms and spend too much time on Google. Dx: psychosomatic."
🙃
Patient: Comes organized with top 3 symptoms, conditions already ruled out, relevant imaging and testing conducted,...
Medicine: "It appears that you are hyperfixated on your symptoms and spend too much time on Google. Dx: psychosomatic."
🙃
November 14, 2025 at 8:50 AM
Medicine: "We wish patients were more engaged in care."
Patient: Comes organized with top 3 symptoms, conditions already ruled out, relevant imaging and testing conducted,...
Medicine: "It appears that you are hyperfixated on your symptoms and spend too much time on Google. Dx: psychosomatic."
🙃
Patient: Comes organized with top 3 symptoms, conditions already ruled out, relevant imaging and testing conducted,...
Medicine: "It appears that you are hyperfixated on your symptoms and spend too much time on Google. Dx: psychosomatic."
🙃
Reposted by Carl
New from the Maureen Hanson team in the US
Temporal dynamics of the plasma proteomic landscape reveals maladaptation in ME/CFS following exertion
www.mcponline.org/article/S153...
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
1/
Temporal dynamics of the plasma proteomic landscape reveals maladaptation in ME/CFS following exertion
www.mcponline.org/article/S153...
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
1/
November 14, 2025 at 12:47 PM
New from the Maureen Hanson team in the US
Temporal dynamics of the plasma proteomic landscape reveals maladaptation in ME/CFS following exertion
www.mcponline.org/article/S153...
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
1/
Temporal dynamics of the plasma proteomic landscape reveals maladaptation in ME/CFS following exertion
www.mcponline.org/article/S153...
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
1/
Reposted by Carl
Science Alert: “Scientists Trace Lupus to One of The World's Most Common Viruses”
‘Going forward, the findings may even be relevant to other autoimmune conditions linked to EBV, such as multiple sclerosis, long COVID, and myalgic encephalomyelitis…’
www.sciencealert.com/scientists-t...
‘Going forward, the findings may even be relevant to other autoimmune conditions linked to EBV, such as multiple sclerosis, long COVID, and myalgic encephalomyelitis…’
www.sciencealert.com/scientists-t...
Scientists Trace Lupus to One of The World's Most Common Viruses
One of the world's most common viral infections could underlie virtually every case of lupus, according to a recent study providing the strongest evidence yet for a link.
www.sciencealert.com
November 14, 2025 at 4:08 AM
Science Alert: “Scientists Trace Lupus to One of The World's Most Common Viruses”
‘Going forward, the findings may even be relevant to other autoimmune conditions linked to EBV, such as multiple sclerosis, long COVID, and myalgic encephalomyelitis…’
www.sciencealert.com/scientists-t...
‘Going forward, the findings may even be relevant to other autoimmune conditions linked to EBV, such as multiple sclerosis, long COVID, and myalgic encephalomyelitis…’
www.sciencealert.com/scientists-t...
Reposted by Carl
Delighted that I’ve secured a debate in Parliament on ‘Government support for ME’ next Wednesday 19 November. This provides a valuable opportunity for MPs to share views - the first in years. I hope that many MPs will join me. Do encourage yours! #pwME
November 13, 2025 at 5:59 PM
Delighted that I’ve secured a debate in Parliament on ‘Government support for ME’ next Wednesday 19 November. This provides a valuable opportunity for MPs to share views - the first in years. I hope that many MPs will join me. Do encourage yours! #pwME
Reposted by Carl
Today is my 78th birthday. When I first became ill in 1983, I was 33. I was 38 when I was diagnosed and attended my first support group meeting. Since then, I have worked with many wonderful people in the fight to make ME/CFS respected, funded, researched, understood, treated and, we hope, cured.
November 12, 2025 at 8:38 PM
Today is my 78th birthday. When I first became ill in 1983, I was 33. I was 38 when I was diagnosed and attended my first support group meeting. Since then, I have worked with many wonderful people in the fight to make ME/CFS respected, funded, researched, understood, treated and, we hope, cured.
Reposted by Carl
Autoimmunity, here we come at last! 👏👏💪💪
I will never understand how medicine decided to bury this exceptionnally fascinating and timely challenge for the sake of saving money, keeping power status, and maintaining a centuries-long abusive psychologising paradigm.
#GreatestMEdicalScandal
I will never understand how medicine decided to bury this exceptionnally fascinating and timely challenge for the sake of saving money, keeping power status, and maintaining a centuries-long abusive psychologising paradigm.
#GreatestMEdicalScandal
This research goes so deep the headline doesn't do it justice. Very big moment in medicine: shines a bright light on how ebv affects b-cells. Plenty of that light is spilling over to multiple sclerosis too. Perhaps can even illuminate rheumatoid arthritis and #mecfs.
Epstein-Barr virus appears to be trigger of lupus disease, say scientists
November 13, 2025 at 10:24 AM
Autoimmunity, here we come at last! 👏👏💪💪
I will never understand how medicine decided to bury this exceptionnally fascinating and timely challenge for the sake of saving money, keeping power status, and maintaining a centuries-long abusive psychologising paradigm.
#GreatestMEdicalScandal
I will never understand how medicine decided to bury this exceptionnally fascinating and timely challenge for the sake of saving money, keeping power status, and maintaining a centuries-long abusive psychologising paradigm.
#GreatestMEdicalScandal
Reposted by Carl
1) In-depth Canadian study on 78 Long Covid patients with ME/CFS. They compared these to 62 controls who were infected by SARS-CoV-2 but did not develop complications.
Too many findings to mention them all, but here are some interesting results...
Too many findings to mention them all, but here are some interesting results...
November 12, 2025 at 10:07 AM
1) In-depth Canadian study on 78 Long Covid patients with ME/CFS. They compared these to 62 controls who were infected by SARS-CoV-2 but did not develop complications.
Too many findings to mention them all, but here are some interesting results...
Too many findings to mention them all, but here are some interesting results...
Reposted by Carl
1995
‘Myalgic Encephalomyelitis also known as Chronic or Post Viral Fatigue Syndrome [ME/CFS]..can be triggered if the bodies immune system reacts abnormally to a virus, major trauma or medications…They have to learn to pace themselves, avoid general anaesthetics, antibiotics & vaccinations..’
‘Myalgic Encephalomyelitis also known as Chronic or Post Viral Fatigue Syndrome [ME/CFS]..can be triggered if the bodies immune system reacts abnormally to a virus, major trauma or medications…They have to learn to pace themselves, avoid general anaesthetics, antibiotics & vaccinations..’
The Chester Chronicle, England. 10th November 1995.
"Misdiagnosis can lead to setbacks if sufferers are encouraged to exercise to 'shake off' their illness".
#mecfs #myalgice #myalgicencephalomyelitis #cfsme
"Misdiagnosis can lead to setbacks if sufferers are encouraged to exercise to 'shake off' their illness".
#mecfs #myalgice #myalgicencephalomyelitis #cfsme
November 10, 2025 at 7:25 AM
1995
‘Myalgic Encephalomyelitis also known as Chronic or Post Viral Fatigue Syndrome [ME/CFS]..can be triggered if the bodies immune system reacts abnormally to a virus, major trauma or medications…They have to learn to pace themselves, avoid general anaesthetics, antibiotics & vaccinations..’
‘Myalgic Encephalomyelitis also known as Chronic or Post Viral Fatigue Syndrome [ME/CFS]..can be triggered if the bodies immune system reacts abnormally to a virus, major trauma or medications…They have to learn to pace themselves, avoid general anaesthetics, antibiotics & vaccinations..’
Reposted by Carl
4) A previous study by Lipkin's group also found "no consistent group-specific differences" in viral particles in blood, feces, and saliva and suggested that future investigations should focus on adaptive immune responses rather than surveillance for viral gene products.
November 8, 2025 at 3:06 PM
4) A previous study by Lipkin's group also found "no consistent group-specific differences" in viral particles in blood, feces, and saliva and suggested that future investigations should focus on adaptive immune responses rather than surveillance for viral gene products.
Reposted by Carl
Many with excessive thirst get the "psychogenic polydipsia" label slapped on them. Yet experiments in the early 1800s showed excessive thirst can be relieved with IV water or saline – seems medicine has regressed!
Tune in tomorrow for more chat about thirst regulation 👇
Tune in tomorrow for more chat about thirst regulation 👇
Ep26 | Long COVID Clinic Fireside Chat
with @binitakane.bsky.social & @helenoakleigh.bsky.social
Hydration, Appetite & Blood Sugar in POTS
🗓️ Wed 5 Nov 18:00 GMT | 📺 YouTube
Dr Binita Kane & @angryhacademic.bsky.social unpack low blood volume, thirst, “low blood sugar” sensations & hunger in POTS.
with @binitakane.bsky.social & @helenoakleigh.bsky.social
Hydration, Appetite & Blood Sugar in POTS
🗓️ Wed 5 Nov 18:00 GMT | 📺 YouTube
Dr Binita Kane & @angryhacademic.bsky.social unpack low blood volume, thirst, “low blood sugar” sensations & hunger in POTS.
November 4, 2025 at 9:39 PM
Many with excessive thirst get the "psychogenic polydipsia" label slapped on them. Yet experiments in the early 1800s showed excessive thirst can be relieved with IV water or saline – seems medicine has regressed!
Tune in tomorrow for more chat about thirst regulation 👇
Tune in tomorrow for more chat about thirst regulation 👇
Reposted by Carl
Given all talk re: Post Exertional Malaise/Post Exertional Symptom Exacerbation in #LongCovid:
Here is "Symptoms made worse due to physical or cognitive exertion" in #MyalgicEncephalomyelitis & #ChronicFatigueSyndrome
Also shows all the range of ME/#CFS symptoms
#MECFS
1/
Here is "Symptoms made worse due to physical or cognitive exertion" in #MyalgicEncephalomyelitis & #ChronicFatigueSyndrome
Also shows all the range of ME/#CFS symptoms
#MECFS
1/
November 2, 2025 at 6:41 PM
Given all talk re: Post Exertional Malaise/Post Exertional Symptom Exacerbation in #LongCovid:
Here is "Symptoms made worse due to physical or cognitive exertion" in #MyalgicEncephalomyelitis & #ChronicFatigueSyndrome
Also shows all the range of ME/#CFS symptoms
#MECFS
1/
Here is "Symptoms made worse due to physical or cognitive exertion" in #MyalgicEncephalomyelitis & #ChronicFatigueSyndrome
Also shows all the range of ME/#CFS symptoms
#MECFS
1/
Reposted by Carl
The healthy vaccinee effect runs deeper than we may think
What this full national Danish study shows is that a huge effect remains even after correcting for age, sex, comorbidity, medical visits and place of residence
The "unvaccinated by choice" test less (and die earlier)
1/
What this full national Danish study shows is that a huge effect remains even after correcting for age, sex, comorbidity, medical visits and place of residence
The "unvaccinated by choice" test less (and die earlier)
1/
November 2, 2025 at 9:47 AM
The healthy vaccinee effect runs deeper than we may think
What this full national Danish study shows is that a huge effect remains even after correcting for age, sex, comorbidity, medical visits and place of residence
The "unvaccinated by choice" test less (and die earlier)
1/
What this full national Danish study shows is that a huge effect remains even after correcting for age, sex, comorbidity, medical visits and place of residence
The "unvaccinated by choice" test less (and die earlier)
1/
This is an incredibly insightful episode that ties together lots of the threads of these conditions. I’m going to share it with all the psychologists that run the local “complex conditions unit”…
Another info-packed episode on EDS & Orthostatic Intolerance;
podcasts.apple.com/ca/podcast/2...
I hope the person at NHS who is pulling together the held knowledge is using this as a resource and contacting these experts to inform policy. cc @actionforme.bsky.social
#MECFS #LongCovid #EDS #IACC
podcasts.apple.com/ca/podcast/2...
I hope the person at NHS who is pulling together the held knowledge is using this as a resource and contacting these experts to inform policy. cc @actionforme.bsky.social
#MECFS #LongCovid #EDS #IACC
#24 Ehlers Danlos Syndrome & Orthostatic Intolerance in Chronic Fatigue conditions with Dr Peter Rowe
Podcast Episode · Make Visible: Complex Chronic Illness Explored · 2025-10-31 · 46m
podcasts.apple.com
November 1, 2025 at 12:39 PM
This is an incredibly insightful episode that ties together lots of the threads of these conditions. I’m going to share it with all the psychologists that run the local “complex conditions unit”…
Reposted by Carl
Another info-packed episode on EDS & Orthostatic Intolerance;
podcasts.apple.com/ca/podcast/2...
I hope the person at NHS who is pulling together the held knowledge is using this as a resource and contacting these experts to inform policy. cc @actionforme.bsky.social
#MECFS #LongCovid #EDS #IACC
podcasts.apple.com/ca/podcast/2...
I hope the person at NHS who is pulling together the held knowledge is using this as a resource and contacting these experts to inform policy. cc @actionforme.bsky.social
#MECFS #LongCovid #EDS #IACC
#24 Ehlers Danlos Syndrome & Orthostatic Intolerance in Chronic Fatigue conditions with Dr Peter Rowe
Podcast Episode · Make Visible: Complex Chronic Illness Explored · 2025-10-31 · 46m
podcasts.apple.com
November 1, 2025 at 8:49 AM
Another info-packed episode on EDS & Orthostatic Intolerance;
podcasts.apple.com/ca/podcast/2...
I hope the person at NHS who is pulling together the held knowledge is using this as a resource and contacting these experts to inform policy. cc @actionforme.bsky.social
#MECFS #LongCovid #EDS #IACC
podcasts.apple.com/ca/podcast/2...
I hope the person at NHS who is pulling together the held knowledge is using this as a resource and contacting these experts to inform policy. cc @actionforme.bsky.social
#MECFS #LongCovid #EDS #IACC
Reposted by Carl
1) Researchers tested an new in-ear device to estimate blood flow to the brain.
In an ME/CFS patient blood flow decreased by 23% after an exercise test compared to only 5% in the healthy control participant.
In an ME/CFS patient blood flow decreased by 23% after an exercise test compared to only 5% in the healthy control participant.
October 31, 2025 at 3:01 PM
1) Researchers tested an new in-ear device to estimate blood flow to the brain.
In an ME/CFS patient blood flow decreased by 23% after an exercise test compared to only 5% in the healthy control participant.
In an ME/CFS patient blood flow decreased by 23% after an exercise test compared to only 5% in the healthy control participant.
Great thread, but this especially. Pro vaccine should look at the way vaccine harmed are treated and be horrified.
If a plane crashes investigators hunt until they find the cause, then make changes so it doesn’t happen again, they don’t just avoid talking about plane crashes.
If a plane crashes investigators hunt until they find the cause, then make changes so it doesn’t happen again, they don’t just avoid talking about plane crashes.
Currently, evidence is growing for long covid-like vaccine reactions
And if you're truly pro-vaccine, you should be more invested than anyone in making sure we understand risks, as this leads to even safer vaccines AND understanding pathophysiological mechanisms in general
And if you're truly pro-vaccine, you should be more invested than anyone in making sure we understand risks, as this leads to even safer vaccines AND understanding pathophysiological mechanisms in general
October 30, 2025 at 10:58 PM
Great thread, but this especially. Pro vaccine should look at the way vaccine harmed are treated and be horrified.
If a plane crashes investigators hunt until they find the cause, then make changes so it doesn’t happen again, they don’t just avoid talking about plane crashes.
If a plane crashes investigators hunt until they find the cause, then make changes so it doesn’t happen again, they don’t just avoid talking about plane crashes.
Reposted by Carl
Don't be me: learn from my mistakes. If you haven't been injured by vaccines, don't automatically dismiss what hasn't properly been researched. Remember things are true regardless of whether they've got the peer-reviewed stamp of approval.
October 30, 2025 at 9:40 PM
Don't be me: learn from my mistakes. If you haven't been injured by vaccines, don't automatically dismiss what hasn't properly been researched. Remember things are true regardless of whether they've got the peer-reviewed stamp of approval.
Reposted by Carl
Secondly, participants didn't seem to be put off vaccination BECAUSE there was (even unrecognised) risks. They were put off because of how everyone, especially healthcare professionals, responded
October 30, 2025 at 9:40 PM
Secondly, participants didn't seem to be put off vaccination BECAUSE there was (even unrecognised) risks. They were put off because of how everyone, especially healthcare professionals, responded
Reposted by Carl
Trust in Transition: Exploring Changing Trust in Vaccination in the Context of Long Covid in the United Kingdom
onlinelibrary.wiley.com/doi/10.1111/...
This paper explores experiences of COVID vaccines in relation to changing or causing long COVID symptoms 🧵
onlinelibrary.wiley.com/doi/10.1111/...
This paper explores experiences of COVID vaccines in relation to changing or causing long COVID symptoms 🧵
Trust in Transition: Exploring Changing Trust in Vaccination in the Context of Long Covid in the United Kingdom
Background New drugs and vaccines usually come with the promise and hope of benefit. We explore stories about the variable and sometimes disappointing effects of Covid-19 vaccines in the context of ...
onlinelibrary.wiley.com
October 30, 2025 at 9:40 PM
Trust in Transition: Exploring Changing Trust in Vaccination in the Context of Long Covid in the United Kingdom
onlinelibrary.wiley.com/doi/10.1111/...
This paper explores experiences of COVID vaccines in relation to changing or causing long COVID symptoms 🧵
onlinelibrary.wiley.com/doi/10.1111/...
This paper explores experiences of COVID vaccines in relation to changing or causing long COVID symptoms 🧵
Reposted by Carl
Proteomic discoveries in hypermobile Ehlers–Danlos syndrome reveal insights into disease pathophysiology October 2025 Griggs, Daylor, Petrucci et al
academic.oup.com/immunohorizo...
#EDS #hEDS #Hypermobility #HSD #Research #Science #Proteomics #Zebras #NEISvoid #Immunology
academic.oup.com/immunohorizo...
#EDS #hEDS #Hypermobility #HSD #Research #Science #Proteomics #Zebras #NEISvoid #Immunology
Proteomic discoveries in hypermobile Ehlers–Danlos syndrome reveal insights into disease pathophysiology
Abstract. Hypermobile Ehlers–Danlos Syndrome (hEDS) is a poorly understood connective tissue disorder that lacks molecular diagnostic markers. This study a
academic.oup.com
October 26, 2025 at 2:10 AM
Proteomic discoveries in hypermobile Ehlers–Danlos syndrome reveal insights into disease pathophysiology October 2025 Griggs, Daylor, Petrucci et al
academic.oup.com/immunohorizo...
#EDS #hEDS #Hypermobility #HSD #Research #Science #Proteomics #Zebras #NEISvoid #Immunology
academic.oup.com/immunohorizo...
#EDS #hEDS #Hypermobility #HSD #Research #Science #Proteomics #Zebras #NEISvoid #Immunology
Reposted by Carl
Interesting study & technology.
Hopefully it becomes widely available for clinical practice.
Blood Flow to the Head in a Person With Myalgic Encephalomyelitis Experiencing Postexertional Malaise: A Case Report
journals.lww.com/cptj/abstrac...
#MyalgicEncephalomyelitis #PwME #MEcfs #CFS
Hopefully it becomes widely available for clinical practice.
Blood Flow to the Head in a Person With Myalgic Encephalomyelitis Experiencing Postexertional Malaise: A Case Report
journals.lww.com/cptj/abstrac...
#MyalgicEncephalomyelitis #PwME #MEcfs #CFS
October 30, 2025 at 1:46 AM
Interesting study & technology.
Hopefully it becomes widely available for clinical practice.
Blood Flow to the Head in a Person With Myalgic Encephalomyelitis Experiencing Postexertional Malaise: A Case Report
journals.lww.com/cptj/abstrac...
#MyalgicEncephalomyelitis #PwME #MEcfs #CFS
Hopefully it becomes widely available for clinical practice.
Blood Flow to the Head in a Person With Myalgic Encephalomyelitis Experiencing Postexertional Malaise: A Case Report
journals.lww.com/cptj/abstrac...
#MyalgicEncephalomyelitis #PwME #MEcfs #CFS
Reposted by Carl
Saying “post-exertional malaise is a hallmark of #LongCovid” can be harmful to both patients with LC and #MECFS
First it may confuse providers or the public into thinking PEM is a required symptom of LC. It’s not.
It is however in every modern diagnostic criteria for ME.
First it may confuse providers or the public into thinking PEM is a required symptom of LC. It’s not.
It is however in every modern diagnostic criteria for ME.
October 30, 2025 at 2:10 AM
Saying “post-exertional malaise is a hallmark of #LongCovid” can be harmful to both patients with LC and #MECFS
First it may confuse providers or the public into thinking PEM is a required symptom of LC. It’s not.
It is however in every modern diagnostic criteria for ME.
First it may confuse providers or the public into thinking PEM is a required symptom of LC. It’s not.
It is however in every modern diagnostic criteria for ME.
Reposted by Carl
1) Interesting study in the New England Journal of Medicine.
1% to 3% of patients with multiple sclerosis and inflammatory bowel disease were likely misdiagnosed as they actually had a monogenic rare disease.
1% to 3% of patients with multiple sclerosis and inflammatory bowel disease were likely misdiagnosed as they actually had a monogenic rare disease.
October 28, 2025 at 8:27 AM
1) Interesting study in the New England Journal of Medicine.
1% to 3% of patients with multiple sclerosis and inflammatory bowel disease were likely misdiagnosed as they actually had a monogenic rare disease.
1% to 3% of patients with multiple sclerosis and inflammatory bowel disease were likely misdiagnosed as they actually had a monogenic rare disease.
Reposted by Carl
I didn't like how I'd get angry quickly, frustrated and anxious, unkind in the things I'd think or say.
Turns out, this is very likely a symptom of ME/CFS. Such fun!
www.youtube.com/watch?v=Sg5q...
#MECFS #pwME #LongCovid #MentalHealth
Turns out, this is very likely a symptom of ME/CFS. Such fun!
www.youtube.com/watch?v=Sg5q...
#MECFS #pwME #LongCovid #MentalHealth
076 - How brain inflammation causes anxiety
YouTube video by Jarred Younger, PhD
www.youtube.com
October 28, 2025 at 9:30 AM
I didn't like how I'd get angry quickly, frustrated and anxious, unkind in the things I'd think or say.
Turns out, this is very likely a symptom of ME/CFS. Such fun!
www.youtube.com/watch?v=Sg5q...
#MECFS #pwME #LongCovid #MentalHealth
Turns out, this is very likely a symptom of ME/CFS. Such fun!
www.youtube.com/watch?v=Sg5q...
#MECFS #pwME #LongCovid #MentalHealth
Reposted by Carl
“hypermobile EDS isn’t real, your bloodwork is fine, shut up hypochondriac”
who would’ve guessed that turned out to be incredibly wrong once a few researchers started looking?
👉 academic.oup.com/immunohorizo...
who would’ve guessed that turned out to be incredibly wrong once a few researchers started looking?
👉 academic.oup.com/immunohorizo...
September 18, 2025 at 2:06 AM
“hypermobile EDS isn’t real, your bloodwork is fine, shut up hypochondriac”
who would’ve guessed that turned out to be incredibly wrong once a few researchers started looking?
👉 academic.oup.com/immunohorizo...
who would’ve guessed that turned out to be incredibly wrong once a few researchers started looking?
👉 academic.oup.com/immunohorizo...