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Koen ME/LC @helldogbe.bsky.social · 03/03/2025

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

Koen ME/LC @helldogbe.bsky.social · 25/02/2025

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

youtu.be

Extended Fasting: An Effective Intervention for Long Covid? | The Rationale and the Science

YouTube video by Gez Medinger

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Koen ME/LC @helldogbe.bsky.social · 22/02/2025

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

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Sydney Poole Funk @sydneypf.bsky.social · 20/02/2025

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?...

youtu.be

Exercise Actually Makes Chronic Fatigue Syndrome Worse

YouTube video by SciShow

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Koen ME/LC @helldogbe.bsky.social · 17/02/2025

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

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Koen ME/LC @helldogbe.bsky.social · 16/02/2025

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...

arte.tv

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...

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Koen ME/LC @helldogbe.bsky.social · 16/02/2025

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.

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Koen ME/LC @helldogbe.bsky.social · 15/02/2025

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.

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KimK @kimk-research.bsky.social · 14/02/2025

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

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Koen ME/LC @helldogbe.bsky.social · 11/02/2025

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:

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Koen ME/LC @helldogbe.bsky.social · 09/02/2025

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:

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Sus Scrofa @susscrofa.bsky.social · 02/02/2025

🚨 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

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Prof. dr. Vivienne Matthies-Boon @vmatthiesboon.bsky.social · 31/01/2025

#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...

radboudrecharge.nl

“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.

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Chantzy @chantzy.bsky.social · 29/01/2025

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

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Long Covid Collective @longcovidcollect.bsky.social · 28/01/2025

The mental load of having a chronic illness is equal to the physical burden. Anyone else relate to this? #longcovid #cfsme #chronicillness

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Jon Douglas @atranscendedman.bsky.social · 24/01/2025

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...

bbc.com

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.

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Ror Preston @rorpreston.bsky.social · 18/01/2025

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!

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Chantal Britt @chantalbritt.bsky.social · 18/01/2025

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...

frontiersin.org

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...

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Tom Kindlon @tomkindlon.bsky.social · 15/01/2025

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

frontiersin.org

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...

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Brian Hughes @bmhughes.bsky.social · 13/01/2025

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.gov

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.

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Bateman Horne Center @batemanhornecenter.bsky.social · 13/01/2025

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

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Danielle Beckman @daniellebeckman.bsky.social · 12/01/2025

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

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Maike Osborne @maosbot.bsky.social · 08/01/2025

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.

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Danielle Beckman @daniellebeckman.bsky.social · 06/01/2025

The denialists can keep trying, but the science will keep coming. I know it is scary, but we won't stop talking about it. As @erturklab.bsky.social said, this is not just an individual health issue – it is a societal challenge. www.cell.com/cell-host-mi... #NeuroCovid #LongCovid

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The Psychologist @psychmag.bsky.social · 06/01/2025

Shifting the dial on Long Covid… @ebarratt.bsky.social with a personal and research-based tour. www.bps.org.uk/psychologist... #PsySciSky

bps.org.uk

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Tinkerbel_64 @anntinkerbel.bsky.social · 20/12/2024

In Huisarts Nu, het wetenschappelijk tijdschrift van Domus Medica, verscheen een artikel dat kort de belangrijkste info uit de ME/CVS-richtlijnen samenvat, zodat huisartsen de aandoening vroeger kunnen herkennen. t.co/gsvD6GuyuQ #mecvs #mecfs #mecfsawareness

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Didier @medidier.bsky.social · 10/12/2024

This thread is really something else. Probably best description of PEM and changes in severity #pwME I have read ✍️👏 thank you

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Science inside @leefbewust.bsky.social · 04/12/2024

Trial By Error: Yet Again BMJ Recommends CBT and Exercise for Long Covid | Virology Blog virology.ws/2024/12/03/t...

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Prof Danny Altmann @daltmann.bsky.social · 28/11/2024

Noteworthy that coverage somehow latched onto CBT and rehab sometimes being better than nothing (notwithstanding the potential to exacerbate). Surely the real take-home was that >4y on, we have nothing substantive to offer some 400 million people globally. We should be able to do better than this..

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Jo at MNB @joatmnb.bsky.social · 26/11/2024

With PEM back in the news because of long COVID, I’d like to draw people’s attention back to this fascinating study published in PNAS by Paul Hwang at the NIH. medicalnewsbulletin.com/nih-scientis... 🧪 #medsky 🩺 ⚕️

medicalnewsbulletin.com

NIH Scientists discover biological basis for ME/CFS symptoms | Medical News Bulletin

A study published in Proceedings of the National Academy of Science sheds some light on the role of a protein that may prevent ME/CFS patients from generating normal amounts of cellular energy.

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Jacqueline @keuningin.eurosky.social · 25/11/2024

Artikel over de stand van zaken v onderzoek naar #LongCovid, samengevat door C-support, met link naar het volledige artikel. www.c-support.nu/mechanismes-...

c-support.nu

Mechanismes van Long COVID en de weg naar mogelijke behandeling - C-support

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Bass #Antifa #EcoHumanist @bassjobsen.mastodon.nl.ap.brid.gy · 25/11/2024

#LongCovid onderzoek; 52% van de deelnemers geeft bij meting 2 aan niet meer in staat te zijn om voor zichzelf te zorgen zonder hulp van anderen. www.c-support.nu/wp-content/uploads…

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Agingdoc⭐David Barzilai🔔MD PhD, MS, MBA, DipABLM @agingdoc.bsky.social · 24/11/2024

Neurologic Manifestations of Long COVID Disproportionately Affect Young and Middle-Age Adults 👉“Although older age is a risk factor for severe COVID-19 pneumonia…the older PNP group comprised less than a third of all PNP patients in our study.” 🤔 onlinelibrary.wiley.com/doi/10.1002/...

onlinelibrary.wiley.com

Neurologic Manifestations of Long COVID Disproportionately Affect Young and Middle‐Age Adults

Objective To investigate neurologic manifestations of post-acute sequelae of SARS-CoV-2 infection (Neuro-PASC) in post-hospitalization Neuro-PASC (PNP) and non-hospitalized Neuro-PASC (NNP) patients...

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Helen Ward @profhelenward.bsky.social · 22/11/2024

Conclusion of Morgan Bomsel’s fascinating talk on viral reservoirs in megakaryocytes and platelets and potential mechanisms for long COVID. Need further work with appropriate controls #demystifyinglongcovid

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Scott Squires @scottsquires.bsky.social · 20/11/2024

Scientists Uncover Hidden Long COVID Cases, Tripling Previous Estimates 22.8% is equal to 75 million Americans with long COVID. Maybe we should try to do something to protect ourselves & children? Prevent long Covid?Solve long Covid? #covidisntover scitechdaily.com/scientists-u...

scitechdaily.com

Scientists Uncover Hidden Long COVID Cases, Tripling Previous Estimates

Researchers report that a new AI tool enhances the diagnostic process, potentially identifying more individuals who need care. Previous diagnostic studies estimated that 7 percent of the population su...

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Nuwuzoho @nuwuzoho.bsky.social · 16/11/2024

PEM can’t simply be worked around or outsmarted. Being a driven person is a detriment to your recovery when you have #longcovid. It is not like other things that can be pushed through.

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Billy Hanlon @bhanlon15.bsky.social · 20/11/2024

BBC: 'Long Fatigue: The exhaustion that lingers after an infection' 'Before Long Covid there was post-viral fatigue – a mysterious set of illnesses caused by other infections. Now scientists are starting to unravel their secrets' 'Putrino says it is vital..' www.bbc.com/future/artic...

bbc.com

Long Fatigue: The exhaustion that lingers after an infection

Before Long Covid there was post-viral fatigue – a mysterious set of illnesses caused by other infections. Now scientists are starting to unravel their secrets.

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Phil P @pprydderch.bsky.social · 18/11/2024

This is truly shocking from one of, if not the, leading UK #MECFS charity I’ve been a supporter of @MEAssociation since I became ill in 2018/2019. My wife and eldest son fund raised for them, raising £2k on a charity walk. This from their chairman is totally tone deaf… /1

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PolyBio Research Foundation @polybiorf.bsky.social · 18/11/2024

PolyBio is excited to begin sharing our #LongCovid, #MECFS and #Lyme+ research on #BlueSky! If you’re still getting to know us, we lead the #LongCovid Research Consortium: a global collaboration between top research teams to comprehensively study LC, focusing on SARS-CoV-2 persistence in tissue.

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Tatiana Prowell, MD @tmprowell.bsky.social · 16/11/2024

Researchers exposed skeletal muscle to serum of ppl w/ #MECFS or #LongCovid @48 hrs: contractile profile severely compromised, shift to glycolysis @ 96-144 hrs: high fatiguability, fragile tissue, fragmented mitochondria Postexertional malaise is very real. www.sciencedirect.com/science/arti...

sciencedirect.com

571P Muscular metabolic plasticity in 3D in vitro models against systemic stress factors in ME/CFS and long COVID-19

Myalgic encephalomyelities/ chronic fatigue syndrome and long COVID-19 are clinically challenging, multi-symptomatic conditions with multiple overlapp…

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ME/CFS Science @mecfsscience.org · 16/11/2024

Preprint from the Charité in Berlin found SARS-CoV-2 spike protein in 11% of healthy controls, 2% of Long Covid patients without ME/CFS and 14% of Long Covid patients with ME/CFS. There was no significant association with disease severity, symptoms, or laboratory markers.

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Sue @inkblue01.bsky.social · 15/11/2024

Low dose rapamycin for treatment in Long Covid. The literature suggests that this drug can work for T cell exhaustion, improving natural killer cells, interferon signaling and suppressing latent viruses. David Putrino ⬇️

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Paul Keeble ME/LC @paulkeeble.co.uk · 14/11/2024

They have done almost nothing for 5 years and they have given up on 400 million people already. The cost to the economy and in human decency is enormous I do not understand just accepting it. People still develop #longcovid in their millions.

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Dr Kevin Lee @dr-kevinlee.com · 15/11/2024

Do we need this in Australia? A bill that requires all doctors, NP, PA to learn about #MECFS, #dysautonomia #longcovid There are still patients across the globe encountering doctors who do not believe in LC, #MyalgicEncephalomyelitis We need to make sure that HCPs are educated in Aus.

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