Koen ME/LC
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helldogbe.bsky.social
Koen ME/LC
@helldogbe.bsky.social
210 followers 220 following 130 posts
2020 Longhauler
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helldogbe.bsky.social
Low spoonie version of the PEM study of cerebrospinal fluid alterations in #MECFS
Cerebrospinal Fluid Metabolic and Lipidomic Alterations in Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS) • This study investigated cerebrospinal fluid (CSF) metabolomics and lipidomics in ME/ CFS patients, comparing them to sedentary controls, both at baseline and after submaximal exercise to model post-exertional malaise (PEM). ME/CFS patients showed elevated serine and reduced 5-methyltetrahydrofolate (5MTHF) in their CSF, indicating disruptions in one-carbon pathways and serine metabolism. • Further analysis revealed elevated levels of sarcosine, creatine, purine intermediates, and transaconitate in ME/CFS patients, suggesting alterations in multiple metabolic pathways including the tricarboxylic acid (TCA) cycle. • Exercise led to lipid consumption in both ME/ CFS patients and controls, but metabolite consumption in ME/CFS patients contrasted with metabolite generation in controls. highlighting a differential metabolic response to • Pathway enrichment analysis revealed significant alterations in methionine phenylacetate, pantothenate, pyrimidine, glycine, serine, arginine, proline, riboflavin, and betaine metabolism, implicating dysfunction in several key metabolic processes. • Lipid analysis showed enrichment in nervous tissue components, suggesting potential myelin and white matter dysfunction in ME/ CFS, further supported by pathway analysis indicating involvement of oligodendrocyte specification and sphingolipid pathways. • Correlations between metabolite levels and questionnaire items revealed associations between elevated serine and fatigue, consistent with ME/CFS diagnostic criteria, while other metabolites showed links to exercise, gender, and age, emphasizing the complexity of metabolic dysregulation in this condition
March 3, 2025 at 9:20 PM
helldogbe.bsky.social
Gez Medinger's latest short clip (9min) on fasting for #LongCovid

TLDW: extended fasting (no solid food for 1-3 weeks) could help with inflammatory conditions
Extended Fasting: An Effective Intervention for Long Covid? | The Rationale and the Science
YouTube video by Gez Medinger
youtu.be
February 25, 2025 at 12:28 PM
helldogbe.bsky.social
Gez Medinger's latest video explains mitochondrial dysfunction's role in long covid and ME/CFS and outlines how damaged mitochondria in skeletal muscles lead to energy production issues.

Low spoonie version in images below.
TLDR: extended fasting might help and will be explained in the next video
Mitochondria are cell powerhouses Mitochondria convert food and oxygen into ATP, the energy currency of cells, crucial for bodily functions. Their proper function means adequate energy for physical and cognitive abilities Dysfunction linked to ME/CFS and long covid Recent studies suggest that mitochondrial dysfunction in skeletal muscles is at the core of ME/CFS and long covid, with visible mitochondrial damage observed in these patients' muscle tissue. Vicious cycle caused by poor blood flow In ME/CFS, inadequate blood flow leads to anaerobic metabolism, creating a buildup of sodium. This sodium overload, combined with calcium influx, results in mitochondrial damage and reduced energy production Acquired ischemic mitochondrial myopathy The condition may be termed acquired ischemic mitochondrial myopathy, highlighting how poor blood flow triggers mitochondrial issues in muscle cells, causing energy deficits even from slight exertion. Risk factors for long covid complications Factors like autoimmunity, genetic predispositions, and blood vessel conditions can explain why not all long covid patients develop severe ME/CFS symptoms, suggesting a need for targeted treatments. Potential treatment strategies Understanding the underlying mechanisms gives hope for treatments that enhance blood flow, target autoantibodies, and mitigate energy production issues, potentially breaking the cycle of dysfunction. Importance of energy management For individuals with ME/CFS and long covid, respecting energy limits is vital. Patients should pace themselves to avoid exacerbating mitochondrial damage facilitating recovery from symptoms
February 22, 2025 at 10:51 PM
Reposted by Koen ME/LC
sydneypf.bsky.social
Thanks #scishow for this great video explaining chronic fatigue syndrome /MECFS, it's post-viral occurrence, and PEM.

#ME/CFS #MECFS #Epstein-Barr #longcovid #PEM
youtu.be/wxSwYUennBA?...
Exercise Actually Makes Chronic Fatigue Syndrome Worse
YouTube video by SciShow
youtu.be
February 20, 2025 at 10:16 PM
helldogbe.bsky.social
Low spoonie summary of a new study finding reduced perfusion in the smallest blood vessels of the eyes of non-hospitalized #LongCovid patients with neurological symptoms.

Seems to confirm earlier findings of a correlation to postcovid fatigue, but now also to other neurological symptoms.
Reduced Retinal Capillary Perfusion in Non-Hospitalized Long COVID Patients • This prospective cohort study investigated the retinal microvasculature in non-hospitalized patients with long COVID and persistent neurological symptoms (Neuro-PASC) using optical coherence tomography angiography (OCT-A). • The study compared 30 Neuro-PASC patients (60 eyes) to 44 healthy controls (80 eyes), excluding those hospitalized for COVID-19. • OCT-A analysis focused on the foveal avascular zone (FAZ), vessel density (VD), and vessel length density (VLD) in the superficial and deep capillary plexuses. • Neuro-PASC patients showed a statistically significant reduction (p = 0.005) in deep capillary plexus VLD compared to controls suggesting potential involvement of the smallest blood vessels. • The study also assessed patient-reported outcomes using PROMIS and NIH Toolbox, revealing significant reductions in cognitive function, fatigue, sleep, anxiety, and depression in the Neuro-PASC group. While more Neuro-PASC patients were vaccinated than controls, this didn't affect the study's primary findings of reduced retinal perfusion. • This research provides evidence of retinal microvascular changes in non-hospitalized long COVID patients with neurological symptoms highlighting the potential systemic vascular impact of the disease
February 17, 2025 at 9:01 PM
Reposted by Koen ME/LC
terry-157.bsky.social
dailyinterlake.com/news/2025/fe...

These IDIOTS will kill their own people! And Long COVID will become a greater problem.
Bill to ban mRNA vaccines passes out of House committee
A bill that would ban the use of mRNA vaccines, including for Covid-19, is on its way to the House floor after passing out of committee in a party-line vote Wednesday.
dailyinterlake.com
February 17, 2025 at 2:56 PM
helldogbe.bsky.social
This hour-long German #MECFS documentary from 2021 can be watched with English subtitles for one more month. It also features the early findings of #LongCOVID .

Click on the settings icon in the lower right corner -> Untertitel -> Englisch

www.arte.tv/de/videos/09...
Die rätselhafte Krankheit - Leben mit ME/CFS - Die ganze Doku | ARTE
ME/CFS ist eine verheerende Krankheit, die allein in Deutschland ca. 300.000 Menschen betrifft. Für die Erkrankten gibt es bislang wenig Hilfe. Viele Ärzte sind mit dem Krankheitsbild nicht vertraut u...
www.arte.tv
February 16, 2025 at 9:35 PM
helldogbe.bsky.social
Low spoonie summary of the latest overview of neurological sequelae of #LongCovid:
Neurological Sequelae of Long COVID: A Comprehensive Review • Long COVID (LC), a lingering effect of SARS-CoV-2 infection, presents with persistent neurological symptoms affecting a substantial portion of survivors, including cognitive dysfunction, fatigue, mood dysregulation, and sleep disturbances. • Diagnostic imaging techniques like PET MRI, EEG, and ultrasonography reveal subtle neurological abnormalities potentially explaining the LC phenotype, while mechanistic hypotheses include CNS invasion neuroinflammation, blood-brain barrier disruption, and gut-brain axis dysregulation with a novel vascular disruption hypothesis emphasizing endothelial dysfunction and hypoperfusion. • A significant percentage of LC patients experience chronic insomnia and fatigue with COVID-19 patients showing a markedly increased risk of insomnia compared to influenza patients. • Mood dysregulation, including depression anxiety, and PTSD, is prevalent in LC, with studies showing increased risks of mood disorders and first-time diagnoses among COVID-19 survivors, particularly those hospitalized or in the ICU. "Brain fog,' characterized by cognitive impairments like memory loss, poor concentration, and slowed processing speed is another common symptom, resembling conditions like ME/CFS and the cognitive effects of chemotherapy • Long-term cognitive dysfunction in LC impacts daily living and work, leading to potential employment challenges; studies reveal difficulties in returning to work and increased risks of dementia, stroke, and Parkinsonism among hospitalized LC patients. • The review explores the current clinical treatment landscape for LC, examining the efficacy of various therapeutic strategies including antivirals and anti-inflammatory agents, in managing the diverse symptoms of this condition.
February 16, 2025 at 4:23 PM
helldogbe.bsky.social
Gez Medinger's latest #LongCovid video with Dr. Klaus Wirth on mitochondrial dysfunction: youtu.be/9gwMw69XCP0?...

It explains the role of damage to the mitochondria from calcium overload in fatigue and the cumulative damage it causes.

For those low on spoons there's a summary in the images below:
Distinction between Long Covid phenotypes. Professor Wirth describes two types of Long Covid, distinguished based on the timing of symptom onset post-exertion: one presenting symptoms a day later (similar to ME/CFS) and another that experiences symptoms within an hour. This distinction helps frame understanding the complexities of these conditions. Mitochondrial dysfunction is central to symptoms. The conversation emphasizes that mitochondrial dysfunction plays a pivotal role in the pathology of both ME/CFS and Long Covid. Damage to mitochondria in skeletal muscle leads to severe disturbances in energy production, contributing to fatigue, pain, and cognitive issues. Physical manifestations of fatigue. Wirth explains that patients experience both mental and muscle fatigue, which stem from disturbed blood flow and mitochondrial dysfunction. These physiological changes can lead to metabolic fatigue, evidenced by rising lactate levels and decreased oxygen consumption during exertion. Cyclic damage from physical exertion. The interview discusses how physical activity causes repeated damage to mitochondria, leading to persistent fatigue and recovery issues. With each exertion, patients may experience cumulative mitochondrial damage, which complicates their ability to recuperate. The role of vascular dysfunction. Wirth presents the idea that vascular dysfunction, including microvascular damage and reduced stroke volume, initiates a cascade of problems affecting energy metabolism and organ function. This vascular issue is further linked to autoimmunity and disautonomia in affected individuals. Consequences of sodium and calcium overload. The doctor outlines a cycle of sodium and calcium overload that further impairs mitochondrial function and cellular health, suggesting a vicious cycle of dysfunction that patients continue to face. Future implications for treatment. The discussion hints at upcoming research into potential therapeutic strategies, emphasizing the need for treatment methods targeting mitochondrial dysfunction to alleviate the pervasive symptoms of Long Covid and ME/CFS.
February 15, 2025 at 5:37 PM
Reposted by Koen ME/LC
topazstudioscom.bsky.social
For anyone who does not understand what post exertional malaise (#PEM) feels like... this was my day today. Not every day is like this, but you get the drift.

#longCovid #ESKD #immunocompromised #pericarditis
For anyone who does not understand what post exertional malaise (#PEM) feels like... this was my day today. Not every day is like this, but you get the drift. #longCovid #ESKD #immunocompromised #pericarditis
February 14, 2025 at 7:06 AM
helldogbe.bsky.social
More #LongCovid and #MECFS similarities in swollen left hippocampus.

Significant associations between hippocampal subfield volumes and severity of Pain, Duration of illness, Severity of fatigue, Impaired concentration, Unrefreshing sleep, and Physical function in both conditions.

AI summary:
February 11, 2025 at 3:16 AM
helldogbe.bsky.social
Viral persistence of spike protein unlikely to be the cause of #LongCovid as it's also found in 10% of healthy controls and there's no correlation to symptom severity in #mecfs type patients.

AI summary in the attached images beneath:
February 9, 2025 at 9:17 PM
Reposted by Koen ME/LC
atranscendedman.bsky.social
Belgium, 358 people: Long COVID patients with fatigue and post-exertional malaise showed shorter telomeres and higher troponin T, linking biological aging and heart involvement to persistent symptoms

bmcmedicine.biomedcentral.com/articles/10....
Exploring DNA methylation, telomere length, mitochondrial DNA, and immune function in patients with Long-COVID - BMC Medicine
Background Long-COVID is defined as the persistency or development of new symptoms 3 months after the initial SARS-CoV-2 infection, with these symptoms lasting for at least 2 months with no other expl...
bmcmedicine.biomedcentral.com
February 4, 2025 at 3:42 PM
Reposted by Koen ME/LC
susscrofa.bsky.social
🚨 Post-exertional malaise isn't just a setback—it can lead to devastating, lifelong consequences for those afflicted. 🚨

#LongCovid #MyalgicEncephalomyelitis #MedicalEducation #HealthcareAwareness #PatientCare
🚨 A Crucial Reminder on Long Covid and ME 🚨 During my recent talk for General Practitioners, I addressed a topic that cannot be overstressed: the importance of avoiding over-exertion in patients with Long Covid and Myalgic Encephalomyelitis (ME). One question that struck a chord was regarding my statement that post-exertional malaise (PEM) can be **irreversible**. When I clarified that this means “permanent, until death,” the shock on the attendee’s face reminded me just how vital it is to communicate the serious implications of a wrong treatment. This is not just a medical detail but a powerful reason for healthcare providers to be vigilant and educate their patients accordingly. 🚨 Post-exertional malaise isn't just a setback—it can lead to devastating, lifelong consequences for those afflicted. 🚨 It's crucial that we spread awareness about the repercussions of exertion intolerance and PEM associated with these conditions. Educating ourselves and each other can foster better understanding and care for our patients. Let's join together to advocate for a better understanding of these debilitating conditions. #LongCovid #MyalgicEncephalomyelitis #MedicalEducation #HealthcareAwareness #PatientCare
February 2, 2025 at 7:47 AM
Reposted by Koen ME/LC
vmatthiesboon.bsky.social
#LongCovid is not just a medical problem, but an ethical, societal and political one: it questions how we deal with the fragility and vulnerability of our existence. I was interviewed by @Radboud_Uni about our #Postviral #Ethics conference on Monday 3 Feb.

www.radboudrecharge.nl/en/article/l...
“Long COVID is not just a growing medical problem” | Radboud University
Long Covid and other postviral diseases pose not only medical but also ethical and sociopolitical issues.
www.radboudrecharge.nl
January 31, 2025 at 5:50 PM
Reposted by Koen ME/LC
chantzy.bsky.social
Something that keeps me up at night: The growing global number of people disabled by Covid & how they will be left further deserted as the climate crisis escalates
Line graph from FRED showing a steep increase in the number of labour force workers over 16 in the U.S. with a disability. There is a sharp increase from ~6 million in 2020 to close to 9 million in 2023
January 29, 2025 at 3:02 PM
Reposted by Koen ME/LC
longcovidcollect.bsky.social
The mental load of having a chronic illness is equal to the physical burden. Anyone else relate to this? #longcovid #cfsme #chronicillness
January 28, 2025 at 5:31 PM
Reposted by Koen ME/LC
atranscendedman.bsky.social
A team in Exeter has developed a finger-prick test to classify long Covid into three types: weak antibody response, excess immune response, and unclear patterns.

Early results suggest it could guide tailored treatments, but larger trials are needed.

www.bbc.com/news/article...
Exeter firm excited over long Covid test breakthrough
The firm says for some people it can confirm the existence of long Covid and help treatment.
www.bbc.com
January 24, 2025 at 1:06 PM
Reposted by Koen ME/LC
rorpreston.bsky.social
An overview of where clinical treatment trials are happening for Long Covid, ME/CFS and other IACCs - according to the @wecrunchme database 🌎

🥇 = USA
🥈 = Germany
🥉 = Canada & UK

Imo international gov discussion on funding is critical to encourage smaller nations!
January 18, 2025 at 4:44 PM
Reposted by Koen ME/LC
chantalbritt.bsky.social
If we were merely deconditioned and our bodies responded normally to exercise, we could motivate and train ourselves fit. Studies like PACE or RECOVER show that #longcovid and #myalgicencephalomyelitis #mecfs are physical diseases with somatic dysfunctions.

www.frontiersin.org/journals/hum...
Frontiers | CBT and graded exercise therapy studies have proven that ME/CFS and long Covid are physical diseases, yet no one is aware of that
The cognitive behavioral model (CBmodel) (1,2) has dominated the world of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) since the 1990s. Accord...
www.frontiersin.org
January 18, 2025 at 8:00 AM
Reposted by Koen ME/LC
tomkindlon.bsky.social
Well done to Mark Vink on getting another piece published: this one has the provocative title, "CBT and graded exercise therapy studies have proven that ME/CFS and long Covid are physical diseases, yet no one is aware of that"

www.frontiersin.org/journals/hum...

#MEcfs #CFS #PwME
Frontiers | CBT and graded exercise therapy studies have proven that ME/CFS and long Covid are physical diseases, yet no one is aware of that
The cognitive behavioral model (CBmodel) (1,2) has dominated the world of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) since the 1990s. Accord...
www.frontiersin.org
January 15, 2025 at 5:08 PM
Reposted by Koen ME/LC
bmhughes.bsky.social
Massive prospective study published today shows that 4.5% of people who had #COVID19 later met #MECFS diagnostic criteria, compared to just 0.6% of people who never were infected by the SARS-CoV-2 virus

88% of these new ME/CFS cases also met the criteria for a diagnosis of #LongCovid
NIH-funded study finds cases of ME/CFS increase following SARS-CoV-2
ME/CFS is a complex, serious, and chronic condition that often occurs following an infection.
www.nih.gov
January 13, 2025 at 9:55 PM
Reposted by Koen ME/LC
batemanhornecenter.bsky.social
Post-COVID #MECFS rates are 15x higher than pre-pandemic levels. New research highlights the urgent need for awareness and care. Explore the findings: loom.ly/wLycS1s
January 13, 2025 at 7:29 PM
Reposted by Koen ME/LC
daniellebeckman.bsky.social
Out today at www.nature.com/articles/s41...
These numbers are crazy. A generation of young people with dementia waits for us in the near future, and we are not prepared for that. #NeuroCovid
Neurological post-COVID syndrome is associated with substantial impairment of verbal short-term and working memory
January 12, 2025 at 1:06 AM
Reposted by Koen ME/LC
maosbot.bsky.social
The silence around Long Covid is deafening because speaking up requires

- Fighting waves of misinformation to understand your condition
- Accepting an incurable illness as your new reality
- Risking relationships, income & facing stigma, all for little hope of support.

Most simply suffer quietly.
January 8, 2025 at 12:27 PM