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valebodi.bsky.social

@valebodi.bsky.social
1.9K followers 1.6K following 6K posts

Surviving MyalgicE aka ME/CFS & AAG to tell the story, pwME & advocate w/ a JD. Into MEdical, Social, Climate Justice & Arts. ME-dical apolide, Human Neutrino, Gnarled pacer MEssland Worldwide www.tandfonline.com/doi/pdf/10.2217…

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valebodi.bsky.social @valebodi.bsky.social · 10h
inherent within itself. The numbers at play baffle the mind.
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valebodi.bsky.social @valebodi.bsky.social · 10h
So much happens in 1 minute, at both the macro level (the Universe) and the micro level (within the human body). The fact that all this happens in 1 minute is nothing short of a miracle. The Earth moves around without any commotion. The human body works far too quietly for all the complexities
pmc.ncbi.nlm.nih.gov
Just a minute: incredible numbers at play at the macro and micro level
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ME/CFS Science @mecfsscience.org · 06/10/2026
8) Here's the link to the paper, it's open access and includes quotes from many prominent advocates from the ME/CFS community: Canson 2026. Patient's knowledge, doctor's ignorance: The production of knowledge about myalgic encephalomyelitis.
sciencedirect.com
Patient's knowledge, doctor's ignorance: The production of knowledge about myalgic encephalomyelitis
It is usually assumed that patient and doctor know strictly different things: the patient knows the phenomenological aspects of their illness, and the…
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ME/CFS Science @mecfsscience.org · 06/10/2026
1) "... the medical aspects of the illness are on the whole better understood by sick people than by their doctors..." In this new paper, philosopher Chloé De Canson details how the ME/CFS community shares and produces scientific knowledge.
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The Sick Times @thesicktimes.org · 05/10/2026
Newly knighted ME advocate Anil van der Zee discusses his royal honor with @davetuller1.bsky.social: thesicktimes.org/2026/10/02/a...
ME advocate Anil van der Zee holds the Knight in the Order of Orange-Nassau medal in his home. He poses with Amsterdam mayor Femke Halsema in a darkened room. The text reads, “Virology Blog x The Sick Times. Anil van der Zee receives Dutch royal distinction. The newly knighted ME advocate discusses his royal honor with David Tuller. Interview.”  I don’t especially care for awards in general, nor do I enjoy doing this “work.” It’s not a new calling in life. I’m not an activist or patient advocate, although I realize others might label me that way. I have better things to do than having to fight for basic healthcare, debunking shoddy science and so on. It’s borne out of sheer desperation as a patient in the hope of getting better or at least being sick with proper care. Just being sick without having to fight for other things we’re currently dealing with as patients would already be amazing.
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betsy ladyzhets 😷 @betsyladyzhets.bsky.social · 05/10/2026
Today @thesicktimes.org: @heatherhogan.bsky.social reviews a new comic book developed by children with Long COVID. "These superheroes showcase bravery by asking for help, resting, and being compassionate with themselves and others."
thesicktimes.org
Kids with Long COVID co-created their own superhero comic book - The Sick Times
Long Covid Superheroes showcases the bravery of asking for help, resting, and being compassionate with yourself and others.
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valebodi.bsky.social @valebodi.bsky.social · 05/10/2026
Photograph 49 is the Key to Understanding the History of Rosalind Franklin’s DNA Photograph 51 🧬 link.springer.com/article/10.1...
link.springer.com
Photograph 49 is the Key to Understanding the History of Rosalind Franklin’s DNA Photograph 51 - Journal of the History of Biology
This essay, co-authored by a historian of science and an X-ray crystallographer, sheds new light on Rosalind Franklin’s Photograph 51. We refute the infamous claim that, unlike James Watson, Franklin ...
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valebodi.bsky.social @valebodi.bsky.social · 05/10/2026
How did Rosalind Franklin miss the helix in her iconic DNA image? She didn’t 🧬
science.org
How did Rosalind Franklin miss the helix in her iconic DNA image? She didn’t
New analysis refutes James Watson’s claim he was first to recognize significance of famed photograph 51
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valebodi.bsky.social @valebodi.bsky.social · 05/10/2026
Self-management support needs for individuals with Myalgic Encephalomyelitis and their next of kin – a qualitative study 🇳🇴 #ME/CFS #pwME
link.springer.com
Self-management support needs for individuals with Myalgic Encephalomyelitis and their next of kin – a qualitative study - BMC Health Services Research
Background Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a complex, disabling condition with limited evidence-based treatment options. Self-management support is recommended to improv...
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valebodi.bsky.social @valebodi.bsky.social · 05/10/2026
Thank you Chloé, looks like a very important paper which I’ll read asap (able). 💙💙💙🫂💙💙💙
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Chloé de Canson @chloedecanson.bsky.social · 05/10/2026
You can read the paper (open access) here: www.sciencedirect.com/science/arti...
sciencedirect.com
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Chloé de Canson @chloedecanson.bsky.social · 05/10/2026
Why do people with ME claim to know more about the medical aspects of their disease than their doctors? Because the mechanisms that usually ensure doctors' knowledge fail in the case of ME, and sick people have created mechanisms of knowledge production and dissemination to pick up the slack.
Screenshot of the header of a published paper: 

Studies in History and Philosophy of Science

Patient's knowledge, doctor's ignorance: The production of knowledge about myalgic encephalomyelitis

Chloé de Canson

Department of of Theoretical Philosophy, University of Groningen, Oude Boteringestraat 52, Groningen, 9712 GL, the Netherlands
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valebodi.bsky.social @valebodi.bsky.social · 05/10/2026
have been shared with Dr Francisco Westermeier (Austria) to support further international collaboration.
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valebodi.bsky.social @valebodi.bsky.social · 05/10/2026
provided to Sophie Hicks at the UK Dementia Research Institute, University College London (UCL), Dr Sarah Annesley at La Trobe University, Melbourne, Australia, Dr Robert Baldock, Professor Kempuraj Duraisamy (USA), and Dr Dmitry Pzhezhetskiy(UEA). In addition, more than 100,000 clinical data points
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valebodi.bsky.social @valebodi.bsky.social · 05/10/2026
UK #ME/CFS Biobank Continues to Drive International Research Over the past six months, the UK ME/CFS Biobank has distributed more than 1,300 biological samples to research groups across the world, supporting a diverse range of studies aimed at improving our understanding of ME/CFS. Samples have been
us7.campaign-archive.com
https://us7.campaign-archive.com/?u=d5cd5b59c73011a4ce28bf62f
____ / ___M ]__ C{ ( o o )} { •• \___ ––––´ You probably found this page because one of our subscribers used Mailchimp to send you an email campaign and you traced a link in th...
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Jon Douglas @atranscendedman.bsky.social · 06/02/2026
Würzburg researchers analyzed IgG from 106 people and found that antibodies from post-infectious ME/CFS patients, including post-COVID cases, disrupt mitochondrial structure in cells and alter inflammation signaling, even without lowering ATP production. www.sciencedirect.com/science/arti...
sciencedirect.com
Immunoglobulin G Complexes from Post-infectious ME/CFS, including post-COVID ME/CFS Disrupt Cellular Energetics and Alter Inflammatory Marker Secretion
Autoimmunity is a key clinical feature in both post-infectious Myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS) and Post-Acute Sequelae o…
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valebodi.bsky.social @valebodi.bsky.social · 04/10/2026
multiple different ways that psychologists can potentially give that support and help people with ME/CFS: meassociation.org.uk/wp-content/u...
meassociation.org.uk
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valebodi.bsky.social @valebodi.bsky.social · 04/10/2026
psychologists to know to support both the guidelines and a planned research paper. Participants have said very clearly that the guidelines must recognise ME/CFS is a biological illness that cannot be cured by psychological methods. The role of psychology is support. The survey has identified
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valebodi.bsky.social @valebodi.bsky.social · 04/10/2026
British Psychological Society #ME/CFS Guidelines September 2026 Update by volunteer Katherine Langford Welcome to the third British Psychological Society ME/CFS Guidelines update. We have been carrying out further analysis of the responses to our survey about what people with ME/CFS want
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Science for ME (S4ME) @s4me.info · 04/10/2026
Our latest News in Brief summary has headlines and links to further reading about ME/CFS, Long Covid, and related news for the week of Sept. 28 - Oct 4: s4me.info/threads/news... #MEcfs #PwME #LongCovid #PwLC
s4me.info
News in Brief - September 2026
This thread has a Science for ME 'News in Brief' post for each week in September 2026 by a team including @Trish, @Kalliope, @ahimsa and @SNT Gatchaman. Scroll down to see this week's news.
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valebodi.bsky.social @valebodi.bsky.social · 04/10/2026
The fact that we have to keep on repeating this, makes pwME’s lives beyond difficult Reframing beliefs about their illness does not lead to recovery of tube-fed patients with very severe #ME/CFS. Analysis of the BMJ article by Miller et al. Mark Vink F. Vink-Niese Date Written: June 06, 2025
papers.ssrn.com
Reframing beliefs about their illness does not lead to recovery of tube-fed patients with very severe ME/CFS. Analysis of the BMJ article by Miller et al.
<p><span>The narrative which is presented by Miller et al. as new, has dominated the field of ME/CFS for the last 35 years. It has been tested by numerous studi
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Astrid Meyer-Knutsen @astridmeyerknutsen.bsky.social · 04/10/2026
- The authors emphasised the potential public health burden and the importance of monitoring for allergic conditions after infection to support prompt intervention. They also suggested a possible mechanistic link between COVID-19 and type two inflammation. www.emjreviews.com/allergy-immu...
emjreviews.com
COVID-19 Linked to Increased Risk of Six Allergic Conditions
COVID-19 was associated with increased allergic disease risk over 18 months, with differing findings in children and service members.
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valebodi.bsky.social @valebodi.bsky.social · 04/10/2026
All the Tired Horses Bob Dylan Self Portrait
youtube.com
All the Tired Horses
YouTube video by Bob Dylan - Topic
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valebodi.bsky.social @valebodi.bsky.social · 04/10/2026
of the disease – and he has a remarkable message for those suffering from it. @cgatist.bsky.social @decodemestudy.bsky.social #pwME #ME/CFS #Genetics
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valebodi.bsky.social @valebodi.bsky.social · 04/10/2026
People with #ME/CFS have been misunderstood for decades: reputable researcher offers surprising advice to those struggling with the illness Myalgic Encephalomyelitis aka ME/CFS has often been overlooked by doctors and researchers. Geneticist Chris Ponting has revolutionised our understanding
scienceillustrated.com
People with chronic fatigue have been misunderstood for decades: reputable researcher offers surprising advice to those struggling with the illness
Chronic fatigue syndrome has often been overlooked by doctors and researchers. Geneticist Chris Ponting has revolutionised our understanding of the disease – and he has a remarkable message for those ...
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Elke Hausmann @drelke.bsky.social · 04/10/2026
Yes - we‘ve gone from only a tiny minority of HCPs having heard of the term PEM, to many more referencing it - but without really understanding what it is and what it means to live with PEM. I don’t know what’s worse… #LongCovid #ME
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valebodi.bsky.social @valebodi.bsky.social · 04/10/2026
www.ama-assn.org/amaone/vacci...
ama-assn.org
Vaccine recommendations
Find the latest respiratory virus season immunization recommendations and resources from leading medical organizations.
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David Tuller @davetuller1.bsky.social · 02/10/2026
This interview with @georgemonbiot.bsky.social has had almost 5,000 views since I posted it yesterday: www.youtube.com/watch?v=Maae...
youtube.com
Interview with George Monbiot about Guardian column on ME/CFS
YouTube video by David M Tuller
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CIDRAP @cidrap.bsky.social · 02/10/2026
Measles outbreaks could leave thousands vulnerable to infectious diseases for years The measles virus kills crucial immune cells, putting survivors at risk of being reinfected with diseases they’ve already had. Read more: bit.ly/4diczSQ
Hospital staff give oxygen to a sick girl.
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Dorit Reiss @doritreiss.bsky.social · 03/10/2026
The 5th Measles Death Was a 20-Year-Old Newly Wed With Leukemia who could not get the vaccine becuase of cancer treatment. open.substack.com/pub/stopanti... via @aboutpediatrics.bsky.social
open.substack.com
The 5th Measles Death Was a 20-Year-Old Newly Wed With Leukemia
The 5th measles death was an unvaccinated 20-year-old with leukemia who had just gotten married last year.
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valebodi.bsky.social @valebodi.bsky.social · 03/10/2026
barriers causing underdeveloped therapeutics in this field.
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valebodi.bsky.social @valebodi.bsky.social · 03/10/2026
Furthermore, we discuss the role of endothelial dysfunction as a pathogenic mechanism in muscular dystrophies, diabetes, peripheral artery disease (PAD), and sarcopenia. We also overview current therapeutic approaches targeting endothelial cells in the muscle and highlight biological and research
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valebodi.bsky.social @valebodi.bsky.social · 03/10/2026
regeneration and growth. The current review article provides a broad overview of the crucial role of the endothelial cells during muscle health and growth, their expansion and interaction with key muscle cell types, governing signaling pathways, and their role in metabolism.
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valebodi.bsky.social @valebodi.bsky.social · 03/10/2026
cells play a central role not only by regulating blood and nutrient flow to support metabolic and regenerative needs, but also by directly interacting with muscle stem cells and fibro-adipogenic progenitors to regulate stem cell quiescence or activation, and muscle tissue remodeling during its
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valebodi.bsky.social @valebodi.bsky.social · 03/10/2026
Myovascular Niche: The Role of Endothelial Cells in Skeletal Muscle Health and Disease Abstract Skeletal muscle health and regeneration is a highly orchestrated process governed by a complex interplay of muscle stem cells (MuSCs), fibro-adipogenic progenitors (FAPs), immune cells, and endothelial
pmc.ncbi.nlm.nih.gov
Preparing to download ...
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valebodi.bsky.social @valebodi.bsky.social · 03/10/2026
Neuromuscular Disorders Volume 67, Supplement 1, October 2026, 106984 3.14P Evidence for transcriptomic changes impacting muscle contraction in patients with post-acute COVID-19 #ME/CFS #PEM www.sciencedirect.com/science/arti...
sciencedirect.com
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valebodi.bsky.social @valebodi.bsky.social · 03/10/2026
in patients with post-acute COVID-19 syndrome www.sciencedirect.com/science/arti...
sciencedirect.com
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valebodi.bsky.social @valebodi.bsky.social · 03/10/2026
But the phenotype is unusually clear: these are rigorously defined #ME/CFS post COVID-19 patients whose standard neuromuscular tests largely say "normal," while molecular profiling says the contractile system itself may not be. 3.14P Evidence for transcriptomic changes impacting muscle contraction
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valebodi.bsky.social @valebodi.bsky.social · 03/10/2026
The work is still forthcoming, and the conference abstract does not yet disclose the exact transcriptomic sample size or individual genes. Those are the things to watch when the full data appear, along with whether these changes replicate after exertion and track #PEM severity.
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valebodi.bsky.social @valebodi.bsky.social · 03/10/2026
force. So this is not simply "inflammation in muscle." It points toward remodeling of the machinery by which muscle senses load, organizes itself and contracts.
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valebodi.bsky.social @valebodi.bsky.social · 03/10/2026
tropomyosin complex were upregulated, while genes involved in actin-bundle formation, Z-disc stabilization and mechanical signaling were downregulated. Troponin and tropomyosin control whether calcium allows myosin to pull on actin, while the Z-disc anchors the contractile apparatus and transmits
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valebodi.bsky.social @valebodi.bsky.social · 03/10/2026
The deeper measurements looked different. Brain FDG-PET/MRI showed posterior hypometabolism in 8/14. Muscle biopsy found moderate dysimmune changes in only 2/7, but exploratory transcriptomics picked up altered cytokine and autophagy pathways plus something more intriguing: genes of the troponin-
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valebodi.bsky.social @valebodi.bsky.social · 03/10/2026
Henri Mondor neuromuscular group report 27 Long COVID patients with >6 of PEM and cognitive impairment, and all 27 met CDC, ICC, IOM and NICE ME/CFS criteria. CK, neurological examination and electrophysiology were normal. Yet 18/27 were unable to work. www.sciencedirect.com/science/arti...
sciencedirect.com
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valebodi.bsky.social @valebodi.bsky.social · 03/10/2026
What if the muscles of people with #PEM can look normal on routine testing while the machinery that actually produces force is being transcriptionally rewritten? At the 2026 World Muscle Society congress, Guillaume Severa, François-Jérôme Authier and colleagues from the Paris Est Créteil/
x.com
Lawrence (@Deep_Chora) on X
What if the muscles of people with PEM can look normal on routine testing while the machinery that actually produces force is being transcriptionally rewritten? At the 2026 World Muscle Society congr...
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Darren Parkinson @greendarrenshipley.bsky.social · 01/10/2026
I am no longer a registered nurse. Not through any choice, but because I got #LongCovid. 2 years ago I lost my nursing job because I'm too ill too work. Today my nursing registration expired. 20+ yrs given to the NHS. Ended by getting a disease without a cure.
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Eric Topol @erictopol.bsky.social · 01/10/2026
In the new @science.org special issue on women's health, a 5★ review of menopause hormone therapy to promote healthy aging science.org/doi/10.1126/...
science.org
Reframing menopause and menopause hormone therapy as opportunities for healthy aging
Menopause is an important biological transition with up to 72 symptoms that shapes aging trajectories across organs and encompasses ~40% of the female lifespan. Although menopause awareness is increas...
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valebodi.bsky.social @valebodi.bsky.social · 02/10/2026
I wish that they also got the COV 2026-2027 vaccine, at the same time. Then it would have really been mind blowing.
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Eurosurveillance journal @eurosurveillance.org · 02/10/2026
#SARSCoV2 is, currently, not a winter virus - based on the findings from a comprehensive atlas of the 18 main respiratory viruses circulating in Catalonia Thanks to @oriolguell.bsky.social for picking up on the recently published paper ⤵️ www.eurosurveillance.org/content/10.2... #MedSky #IDsky 🛟🧪
english.elpais.com
New ‘atlas’ of respiratory infections suggests Covid is no longer just a winter virus
A comprehensive study of the circulation of 18 pathogens, conducted in Spain’s Catalonia region, shows clear peaks during the spring and summer
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valebodi.bsky.social @valebodi.bsky.social · 02/10/2026
🏷️ @alemmatthees.bsky.social
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valebodi.bsky.social @valebodi.bsky.social · 02/10/2026
clearing the debris and ashes On the subject please see @marydimmock.bsky.social @mfairma.bsky.social Thirty Years of Disdain me-pedia.org/wiki/Thirty_... As well as M. Hooper & M. Williams www.investinme.org/Article400%2...
me-pedia.org
Thirty Years of Disdain
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