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
Don't forget neuroSPECT scans! Mine looks like this - = hypoperfusion, + = hyperperfusion

orbi.uliege.be/bitstream/22...
May 8, 2025 at 10:46 PM
helldogbe.bsky.social
Here's what my SPECT looks like (- = hypoperfusion, + = hyperperfusion)! No help offered but to "live with it".
May 1, 2025 at 10:55 PM
helldogbe.bsky.social
How about a SPECT scan?

Mine shows clear problems with brain hypo- and hyperperfusion

orbi.uliege.be/bitstream/22...
April 17, 2025 at 12:53 AM
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
One of my last fun trips in 2020.

Wish I kept more pictures of 2021 when I was still able to go on small walks with #LongCOVID as well as my temporary remission on Meloxicam (NSAID which allowed me to exercise and go back to work for a few months).

Now I can't even stand YouTube rollercoasters.
Picture on a rollercoaster theme park ride of me with 3 friends
February 28, 2025 at 11:47 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
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
helldogbe.bsky.social
There's an exemption for (future) cancer mRNA vaccines, as if those will have 0,000% chance of side effects.

What do these people have against fighting infectious disease?!
The bill was amended to specify that the legislation would ban mRNA vaccines "for infectious diseases" and not "gene therapy products used to treat cancers or genetic disorders." Supporters had previously testified that the vaccines caused more harm than good. "[mRNA vaccines are] the most destructive and lethal medical products that have ever been used in medical history," Dr. Christine Drivdahl-Smith, a family physician in Miles City, told the committee earlier this month.
February 17, 2025 at 8:48 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
helldogbe.bsky.social
Judging from this AI summary I'd say it's very problematic:

"Kallen discusses the development of a self-action energy and recovery management program designed to address the root causes of chronic complaints." 1/2
February 14, 2025 at 8:40 PM
helldogbe.bsky.social
Meme says we've tried nothing and we're all out of ideas.
February 13, 2025 at 7:46 PM
helldogbe.bsky.social
Not to mention the microclot (amyloid deposit) findings of Resia Pretorius et al that might also be connected to viral replication and found as a biomarker in several studies such as the famous Rob Wüst muscle biopsies:

www.nature.com/articles/s41...
February 11, 2025 at 7:47 PM
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
Idem, covid is een eenmalige kans om virale persistie aan te tonen voor ME.

Deze (Belgische) studie wijst wel naar virale persistie. Daarbij is er correlatie tussen de virale lading in de vorm van Antisense RNA (ORF1ab) en een verlaagd immunometabolisme.

www.thelancet.com/journals/lan...
February 10, 2025 at 5:06 PM
helldogbe.bsky.social
Nog niet gerustgesteld mbt viral persistence hypothese nee!

Vindt zij alleen de stukjes spike protein die niet dmv microclots gedegradeerd zijn?

Deze onderzoekers vonden wel opvallend meer virusdeeltjes bij LC, maar ook geen causatie:
www.massgeneralbrigham.org/en/about/new...
February 9, 2025 at 11:21 PM
helldogbe.bsky.social
Don't forget there is a correlation between the amyloid deposits (which may be related to spike protein in the blood) in the muscles after exercise.

As established by Rob Wüst et al in this study: Muscle abnormalities worsen after post-exertional malaise in #LongCOVID
www.nature.com/articles/s41...
February 9, 2025 at 9:26 PM
helldogbe.bsky.social
The small correlation of spike protein found (in 14% of postcovid meeting MECFS-criteria vs 11% in healthy recovered controls) could be down to the study size of 121.
February 9, 2025 at 9:21 PM
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
helldogbe.bsky.social
This mind-body approach of unlearning bad reactions does not in any way fit the current research on #LongCovid or #MECFS.

Let's please stick to the science that this is a multisystemic physiological disease with autoimmune and viral persistence as potential drivers:
www.nature.com/articles/s41...
February 9, 2025 at 1:36 AM
helldogbe.bsky.social
Interesting finding on telomere shortening in #LongCovid :
www.meresearch.org.uk/telomere-sho...

AI summary of the study in the images
February 5, 2025 at 1:00 AM