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Carl

@carlf.bsky.social

230 followers 200 following 840 posts

ME secondary to Covid vaccination. Provax/vax injured. Research and support those harmed. Current safety monitoring is not effective for these chronic conditions.

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Carl @carlf.bsky.social · Aug 5

“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...

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

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Reposted by Carl

ME/CFS Science @mecfsskeptic.bsky.social · 3h

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.

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Carl @carlf.bsky.social · 4h

Ah, wasn’t aware of those links. Even the other more recent name IACC fails to include non infectious triggers though. We need an inclusive name that includes all.

Carl @carlf.bsky.social · 9h

Not a fan of “PIFS” as it excludes a bunch of us with the same prolonged immune activation following non infectious immune stimulus.

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Carl @carlf.bsky.social · 19h

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.

Harriet Carroll: Long Covid Scientific Consultancy @angryhacademic.bsky.social · 21h

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

Michaela argued against this point, reflecting that discussing vaccine impacts contributed to a vision of improved vaccine science as a whole.
There's a … a fear of being labelled antivaxx if you … if you talk about the negative vaccine side effects, and to be honest I think it's the most pro-vaxx thing you can do because if we acknowledge the side effects we can help patients, we can improve trust, we can build safer vaccines, so if you want to be truly pro-vaccine, you need to understand why people are reacting like this. So, I think it is the most beneficial thing we can do for vaccines is to talk about these side effects, but counterintuitively, society thinks that the worst thing we can do is talk about vaccine side effects.

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Reposted by Carl

Harriet Carroll: Long Covid Scientific Consultancy @angryhacademic.bsky.social · 21h

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.

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Reposted by Carl

Harriet Carroll: Long Covid Scientific Consultancy @angryhacademic.bsky.social · 21h

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

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Reposted by Carl

Harriet Carroll: Long Covid Scientific Consultancy @angryhacademic.bsky.social · 21h

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 🧵

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

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Reposted by Carl

OhTWIST @ohtwist.bsky.social · 5d

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

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

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Carl @carlf.bsky.social · 1d

On their days off they are the ones putting up the flags.

Reposted by Carl

Tom Kindlon @tomkindlon.bsky.social · 1d

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

Purpose:
Reduced cerebral blood flow (CBF) may play a role in the pathophysiology of postexertional malaise (PEM) in myalgic encephalomyelitis (ME). This case report aimed to determine the feasibility of measuring differences in blood flow to the head occur during PEM induced by 2-day cardiopulmonary exercise testing (CPET).

Methods:
One individual with ME and 1 nondisabled individual underwent a 2-day CPET to induce PEM. Blood flow was assessed using a novel in-ear device (Lumia Health), using photoplethysmography to estimate a relative flow index while participants were supine and during a 10-minute standing test before CPET. The person with ME showed a 34% decrease in work at the ventilatory anaerobic threshold (VAT), confirming PEM on day 2. During PEM, flow index decreased by 17% while supine and 23% during orthostasis compared to day 1. The nondisabled individual did not exhibit subjective or objective PEM (1% reduction in work at VAT) and experienced less than a 5% reduction in flow index while supine.

Results and Conclusions:
Reduced blood flow to the head during PEM may partially explain ME symptomatology. The novel in-ear device shows promise as a diagnostic and biofeedback tool, warranting further research in larger studies.

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Reposted by Carl

The Real McCoy @rippermd41.bsky.social · 1d

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.

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Carl @carlf.bsky.social · 3d

Do you have any thoughts on why Putrino had a study on patient reported long Covid published, but identical study on PVS has been left in peer review? Putrino has raised this issue himself. There Is a huge issue with lack of research into these complex post vaccination issues.

Carl @carlf.bsky.social · 3d

Vaccination is great. But as with any medical intervention there can be risk of harm. Studying these groups could lead to mitigations to make vaccines even safer. Language is important, hence my frustration at acronyms that exclude this group of patients.

Carl @carlf.bsky.social · 3d

Of course, and I do say reactivation of latent viruses may play a part, but it seems there is an immune event that acts as a trigger - (my case appears to be vaccination). Doesn't mean the trigger is inherently “bad” just that it had the effect of triggering the cascade into illness.

Carl @carlf.bsky.social · 3d

Calming the nervous system at the moment of onset of PEM has been very helpful for me. I had that just a couple of days ago after a day of travel. I stopped and did yoga nidra for about 4 hours. By late afternoon I was feeling significantly better. In the past I would have spiralled for days.

Carl @carlf.bsky.social · 3d

Widely reported in patient groups - overtraining, stress, car accidents, vaccines etc. Any immune event seems to be capable. Maybe possible for “reactivation” of latent viruses, but that doesn’t seem to be what this study means. We’d know more if this group was studied more.

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Reposted by Carl

ME/CFS Science @mecfsskeptic.bsky.social · 3d

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.

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Carl @carlf.bsky.social · 3d

Said to my GP since day 1 that anxiety was a symptom not a cause of the illness. Doctors are so dismissive and ignorant of this. There is a wealth of evidence that they continue to ignore on the role of brain inflammation in “mental health” issues.

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Reposted by Carl

Andrew Gifford @andrewgiffordphoto.bsky.social · 3d

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

076 - How brain inflammation causes anxiety

YouTube video by Jarred Younger, PhD

www.youtube.com

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Carl @carlf.bsky.social · 3d

PIFS is another acronym that doesn’t include those of us in this boat from non infectious triggers. Why does this group get ignored so often? Surely we are the evidence that it may not be the trigger, more the response that is the issue?

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Reposted by Carl

Amytiville Hoyrror @amyhoy.bsky.social · Sep 18

“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...

Proteomic analysis revealed 35 differentially expressed proteins in hEDS, with 43% involved in the complement cascade and 80% linked to immune, coagulation, or inflammatory pathways.
Pathway analyses confirmed enrichment in complement activation, coagulation, and stress responses. ELISA validation showed significant reductions in CIQA, C3, C8A, C8B, and C9 in hEDS patients, consistent across age and sex. Cytokine profiling revealed alterations in nodal immune cell mediators in hEDS patients, supporting a model of dysregulated inflammatory response. Our findings indicate a systemic immune dysregulation, particularly involving the complement system and profibrotic cytokines, as a common feature in hEDS pathophysiology. These findings challenge the traditional view of hEDS as solely a connective tissue disorder and

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Reposted by Carl

PH 🕊️🌱😷 @ph-ph-ph.bsky.social · 4d

hEDS

‘Our findings indicate a systemic immune dysregulation, particularly involving the complement system & profibrotic cytokines..
These findings challenge the traditional view of hEDS as solely a connective tissue disorder & support
⬇️
a revised paradigm
that includes innate immune dysfunction.’

OhTWIST @ohtwist.bsky.social · 5d

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

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Carl @carlf.bsky.social · 12d

Cause or effect?

Reposted by Carl

Alexandria Ocasio-Cortez @aoc.bsky.social · 14d

Swearing in isn’t some ceremony. You aren’t a member of Congress until it happens. He knows that.

No phones, no staff, nothing.

I had to escort her into the Capitol on Wed bc Capitol police must treat her as a public visitor until she’s sworn in. And solo visitors aren’t allowed during shutdown!

Aaron Rupar @atrupar.com · 14d

Johnson: "Grijalva should be working for her constituents right now. I don't know what she's doing. I keep seeing their political stunt videos. She should be in her office. She should be working or in the district for her constituents" (Grijalva is not in fact a Rep. b/c Johnson refuses to seat her)

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Carl @carlf.bsky.social · 16d

Maybe VDPS could take note.