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valebodi.bsky.social

@valebodi.bsky.social

Surviving MyalgicE & AAG to tell the story, patient & advocate w/ a JD. Into MEdical, Social & Climate Justice & Arts. Human neutrino/MEdical apolide/Gnarled pacer. MEssLand Worldwide https://www.tandfonline.com/doi/pdf/10.2217/fmb-2022-0031

created October 7, 2023

1,449 followers 1,130 following 3,056 posts

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Profile picture valebodi.bsky.social (@valebodi.bsky.social)

Neurovascular Dysregulation During Exercise in #ME/CFS & #LongCOVID David M. Systrom, M.D. Pulmonary and Critical Care Medicine Brigham & Women’s Hospital CDC SEC Call Presentation www.cdc.gov/me-cfs/pdfs/...

3/9/2025, 3:04:25 AM | 2 0 | View on Bluesky | view

Profile picture valebodi.bsky.social (@valebodi.bsky.social) reply parent

Neurovascular Dysregulation During Exercise in #ME/CFS & #LongCOVID David M. Systrom, M.D. Pulmonary and Critical Care Medicine Brigham & Women’s Hospital CDC SEC Call Presentation (2023) www.cdc.gov/me-cfs/pdfs/...

3/9/2025, 3:03:10 AM | 1 0 | View on Bluesky | view

Profile picture valebodi.bsky.social (@valebodi.bsky.social)

Heart Preload Failure in patients w/ #ME/CFS #pwME and some #pwLC Original ongoing research conducted by Dr. D. Systrom @openmedf.bsky.social www.openmedicinefoundation.ngo/heart-preloa...

3/9/2025, 2:12:36 AM | 8 4 | View on Bluesky | view

Profile picture valebodi.bsky.social (@valebodi.bsky.social) reply parent

www.openmedicinefoundation.ngo/heart-preloa...

3/9/2025, 2:10:37 AM | 3 0 | View on Bluesky | view

Profile picture valebodi.bsky.social (@valebodi.bsky.social)

Heart Preliad Failure in #ME/CFS #pwME Ongoing research conducted by Dr. David Systrom @openmedf.bsky.social www.openmedicinefoundation.ngo/heart-preloa...

3/9/2025, 2:10:05 AM | 3 1 | View on Bluesky | view

Profile picture valebodi.bsky.social (@valebodi.bsky.social) reply parent

capillaries in the muscles, bypassing the muscle cells where oxygen should be taken up. • Autonomic Dysregulation: The autonomic nervous system, which controls involuntary body functions like heart rate and blood pressure, may be dysregulated, impacting blood flow and venous volume. #ME/CFS

3/9/2025, 2:07:14 AM | 3 0 | View on Bluesky | view

Profile picture valebodi.bsky.social (@valebodi.bsky.social) reply parent

Besides preload failure, other factors can lead to poor oxygen extraction: • Mitochondrial Dysfunction: The mitochondria in the cells may not be able to utilize the oxygen delivered to them, even if enough oxygenated blood is reaching them. • Peripheral Shunting: Blood may be shunted past the

3/9/2025, 2:07:14 AM | 3 0 | View on Bluesky | view

Profile picture valebodi.bsky.social (@valebodi.bsky.social) reply parent

preload failure, where the heart doesn't receive enough blood to efficiently pump to the muscles, or it can stem from issues like mitochondrial dysfunction or peripheral blood shunting that prevent oxygen from reaching the cells.

3/9/2025, 2:05:09 AM | 3 0 | View on Bluesky | view

Profile picture valebodi.bsky.social (@valebodi.bsky.social) reply parent

Poor Oxygen Extraction is Contributing to Exercise Intolerance in #ME/CFS, "oxygen extraction failure" refers to the body's inability to effectively extract oxygen from the blood during activity, leading to reduced energy production and post-exertional malaise #PEM. This can be a consequence of

3/9/2025, 2:05:09 AM | 3 0 | View on Bluesky | view

Profile picture valebodi.bsky.social (@valebodi.bsky.social)

Normally hard science & objective findings like these would bring all hands on deck and serious research fundings, but when it’s in #pwME, it’s just a meh & barely get noticed #ME/CFS = medicine pariah • Oxygen extraction issues • Preload failure • Reduced V̇O2peak • Skeletal muscle O2 diffusion

3/9/2025, 2:02:33 AM | 14 5 | View on Bluesky | view

Profile picture valebodi.bsky.social (@valebodi.bsky.social)

Post-COVID exercise intolerance is associated with capillary alterations and immune dysregulations in skeletal muscles (2023) actaneurocomms.biomedcentral.com/articles/10.... @scheibenbogen.bsky.social among the authors

3/9/2025, 1:52:51 AM | 5 1 | View on Bluesky | view

Profile picture valebodi.bsky.social (@valebodi.bsky.social) reply parent

compartment and lower levels of anti-RBD IgG and IgA. This correlated with reduced neutralizing capacity against SARS-CoV-2. #LongCOVIDKids #PediatricLongCOVID 🏷️ @buonsenso.bsky.social

3/9/2025, 1:44:54 AM | 0 0 | View on Bluesky | view

Profile picture valebodi.bsky.social (@valebodi.bsky.social)

🇪🇸 Our findings indicate that pediatric long COVID is associated with a dysregulated immune response characterized by altered innate immunity and overactivated T-, B- and NK-cell responses. Furthermore, CYP with long COVID had an impaired humoral response to SARS-CoV-2 marked by a dysregulated B-cell

3/9/2025, 1:44:54 AM | 0 0 | View on Bluesky | view

Profile picture valebodi.bsky.social (@valebodi.bsky.social)

What is that thing that shall not be named that is still airborne, still circulating, still non seasonal, still mutating, still infecting, still killing and still disabling? PS One way masking KN95/N95 is still highly effective to prevent 🦠⬆️ the thing/s ⬆️ 🦠 pmc.ncbi.nlm.nih.gov/articles/PMC...

3/9/2025, 12:46:30 AM | 1 0 | View on Bluesky | view

Profile picture valebodi.bsky.social (@valebodi.bsky.social) reply parent

represent a therapeutic target. However, our findings are limited by small sample size. #iCPET #ME/CFS #LongCOVID

3/9/2025, 12:12:50 AM | 0 0 | View on Bluesky | view

Profile picture valebodi.bsky.social (@valebodi.bsky.social) reply parent

Correcting DM alone improved V̇O2 by 66% in PASC (p = 0.008) and 34.7% in CFS/ME (p = 0.06), suggesting a dominant role for peripheral O2 extraction in exercise limitation. Impaired skeletal muscle oxygen diffusion (DM ) is a shared mechanism of exercise intolerance in PASC and CFS/ME and may

3/9/2025, 12:12:50 AM | 0 0 | View on Bluesky | view

Profile picture valebodi.bsky.social (@valebodi.bsky.social)

To simulate targeted interventions, each variable was sequentially normalized to assess its impact on V̇O2peak. V̇O2peak was significantly reduced in both PASC and #ME/CFS compared to controls. ⚠️ Skeletal muscle O2 diffusion (DM ) was the most impaired parameter in both patient groups (p = 0.01). ⚠️

3/9/2025, 12:12:50 AM | 9 3 | View on Bluesky | view

Profile picture Mark Ungrin (@mark-ungrin.bsky.social) reposted reply parent

A follow-up report was sparked by the unwillingness of public health leaders - deeply mired in conflicts of interest, around their responsibility for downplaying the significance of COVID and allowing it to spread out of control - to educate the public about long COVID. science.gc.ca/site/science...

25/11/2024, 8:11:49 PM | 67 31 | View on Bluesky | view

Profile picture Mark Ungrin (@mark-ungrin.bsky.social) reposted reply parent

The Office of the Chief Science Advisor of Canada released a report in December 2022 highlighting that while COVID is transmitted via respiratory aerosols, that doesn't mean it's just a respiratory virus - it gets into (and damages) almost every tissue in the body. science.gc.ca/site/science...

25/11/2024, 8:11:49 PM | 86 42 | View on Bluesky | view

Profile picture Mark Ungrin (@mark-ungrin.bsky.social) reposted reply parent

The entire report is valuable,but in particular Chapter 3 provides an overview of just how widespread and devastating long COVID can be, including impacts throughout the body. nap.nationalacademies.org/read/27756/c....

25/11/2024, 8:11:49 PM | 111 40 | View on Bluesky | view

Profile picture Mark Ungrin (@mark-ungrin.bsky.social) reposted reply parent

The US National Academies of Science, Engineering and Medicine have released a comprehensive report on long COVID - this one is often particularly useful when faced with attempts by public health leaders to erase the damage their poor choices have caused. nap.nationalacademies.org/read/27756/c...

25/11/2024, 8:11:49 PM | 128 44 | View on Bluesky | view

Profile picture Mark Ungrin (@mark-ungrin.bsky.social) reposted

From populists on the right, but also from establishment figures desperate to bury their responsibility, there's an ongoing push to bury the harms of COVID. Long COVID alone costs 7M life-years (QALYs) and on the order of a trillion dollars a year in the OECD. www.oecd-ilibrary.org/social-issue...

1. While a precise estimate of long COVID prevalence is still emerging, current research suggests that up to 10-30% of people who contracted COVID-19 exhibit symptoms corresponding to long COVID in the weeks and months following acute infection. Across OECD countries at a minimum, this would represent upwards of 39 million people who had or are currently living with long COVID. Sustainable investment in long COVID research is crucial to inform health and social care resource allocation. As the evidence base grows, developing standardised measures of symptoms and functional impact to support a more precise definition that enables the disaggregation of levels of long COVID severity could be useful to better understand the condition, assess its impact, and to tailor care and support. 3. Long COVID can severely limit people’s ability to undertake basic activities of daily life and can dramatically hamper quality of life. More than 7 million quality-adjusted life years may be lost annually across OECD countries due to the condition. Studies from across a range of OECD countries suggest that one sixth to more than one-third of people may have persistent cognitive symptoms, often lasting more than 12 weeks, after a COVID-19 infection. 4. Even conservative estimates of long COVID prevalence would indicate that long COVID may be reducing the workforce by nearly 3 million workers across OECD countries, amounting to an economic cost of at least $141 billion USD from lost wages alone. Moreover, even among those who were able to return to the labour force, a significant proportion reported needing to reduce the number of hours they worked, compared to before their infection. 5. The economic and social welfare costs of long COVID are dramatic: Even excluding the direct costs of health care, long COVID is likely costing OECD countries as much as $864 billion $1.04 trillion USD per year due to reductions in quality of life and labour force participation. The limitations in activities experienced by long COVID patients, including dropping out or reducing their participation in the labour force, as well as direct medical care costs, can have dramatic implications on their financial well-being. Costs to health and social protection systems may also be high over time. 6. Long COVID could further exacerbate inequalities: The COVID-19 pandemic brought attention to longstanding socioeconomic and demographic inequalities in health. Evidence from some countries suggests that certain groups – including populations with lower education attainment, and those living in more deprived areas – may be at risk of developing long COVID, and of experiencing more severe symptoms. 7. Patients have played a critical role in bringing attention and action to long COVID: Throughout the pandemic, countries deprioritized many key aspects of person-centred care in exchange for rapidly implementing policies intended to contain the virus. While the need for rapid action was clear, the lack of patient voice in the process was notable. In contrast, patients and patient groups have been at the forefront of advocating for both a recognition of long COVID as a legitimate condition, in articulating their care and support needs, and in spearheading research into the condition. In many cases, countries have responded by actively working together with patient groups to disseminate information and develop patient-centred support services.
25/11/2024, 8:11:49 PM | 420 201 | View on Bluesky | view

Profile picture LET'S AIR (@nousaerons.bsky.social) reposted

The list is long: many diseases are transmitted through the air we breathe. Good indoor air renewal reduces the risk of contamination, particularly in hospitals, schools, and nursing homes. For more information, visit our website or read our 25-page guide: letsair.org#mediation

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25/8/2025, 9:29:30 AM | 40 26 | View on Bluesky | view

Profile picture Trish Greenhalgh (@trishgreenhalgh.bsky.social) reposted

www.science.org/doi/full/10.... Mandating Indoor Air Quality in Public Buildings. Our paper in Science. 🧪 #healthpolicy

2/9/2025, 1:32:22 PM | 188 86 | View on Bluesky | view

Profile picture Linsey Marr (@linseymarr.bsky.social) reposted

We have policies/laws/regulations to ensure that our food and water are clean and safe. Why not for air, too? Typical amounts taken in per day: food = 4 lb water = 3 lb air = 30 lb

2/9/2025, 9:28:56 PM | 221 63 | View on Bluesky | view

Profile picture Eric Topol (@erictopol.bsky.social) reposted

A nasal spray reduced the risk of Covid infections in a double blind, placebo controlled randomized trial jamanetwork.com/journals/jam...

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2/9/2025, 3:16:51 PM | 535 146 | View on Bluesky | view

Profile picture valebodi.bsky.social (@valebodi.bsky.social) reply parent

and in some cases, may progress to severe disease.7-12 Even patients with mild COVID-19 may experience worsening of preexisting chronic conditions.13-17

2/9/2025, 6:20:08 PM | 1 0 | View on Bluesky | view

Profile picture valebodi.bsky.social (@valebodi.bsky.social)

SARS-CoV-2 remains highly transmissible and up to half of people living with an infected individual may develop COVID-19.3,4 The virus is constantly evolving, with novel symptoms reported.5,6 COVID-19 continues to impact daily life and may lead to absence from school and work, may cause long COVID,

2/9/2025, 6:20:08 PM | 4 0 | View on Bluesky | view

Profile picture valebodi.bsky.social (@valebodi.bsky.social) reply parent

Surprise ME not!

2/9/2025, 6:13:10 PM | 1 0 | View on Bluesky | view

Profile picture valebodi.bsky.social (@valebodi.bsky.social)

International Declaration spearheaded by the #ME/CFS Research Foundation, stating the moral, medical, economic and scientific imperative to invest robustly in international and collaborative research into the pathophysiology… @mecfsresearch.bsky.social declaration.mecfs-research.org/en/declaration

2/9/2025, 2:50:04 PM | 8 1 | View on Bluesky | view

Profile picture Saloni (@scientificdiscovery.dev) reposted reply parent

Reminder that there are multiple vaccines already out there that reduce your kids' chances of multiple types of cancers (and some people want you to believe this is bad!) www.scientificdiscovery.dev/p/6-vaccines...

1/9/2025, 7:50:01 PM | 80 39 | View on Bluesky | view

Profile picture Saloni (@scientificdiscovery.dev) reposted

The long term data on hepatitis B vaccination shows it reduces the incidence of liver cancer by 84% and death from liver disease by 70%. This comes from a large cluster RCT in which entire towns were randomly selected to give the hepatitis B vaccine to all newborns.

Cumulative incidence or primary liver cancer and liver diseases, years after hepatitis B vaccination
1/9/2025, 7:43:40 PM | 434 142 | View on Bluesky | view

Profile picture Adam Kucharski (@adamjkucharski.bsky.social) reposted

Results so stunningly clear they inspired this classic xkcd (xkcd.com/2400/):

1/9/2025, 7:32:03 PM | 3955 1338 | View on Bluesky | view

Profile picture Brian Wasik (@brianrwasik.bsky.social) reposted

These vaccines are... good?

1/9/2025, 7:55:10 PM | 7 1 | View on Bluesky | view

Profile picture valebodi.bsky.social (@valebodi.bsky.social) reply parent

Heightened innate immunity may trigger chronic inflammation, fatigue and post-exertional malaise in #ME/CFS pmc.ncbi.nlm.nih.gov/articles/PMC...

1/9/2025, 3:35:50 PM | 2 1 | View on Bluesky | view

Profile picture valebodi.bsky.social (@valebodi.bsky.social)

Study Reveals Details of Overactive Immune System in Patients with Chronic Fatigue Syndrome (ME/CFS) Peer-Reviewed Publication COLUMBIA UNIVERSITY'S MAILMAN SCHOOL OF PUBLIC HEALTH I. Lipkin et al.

1/9/2025, 3:35:50 PM | 3 1 | View on Bluesky | view

Profile picture valebodi.bsky.social (@valebodi.bsky.social) reply parent

Exactly, it was lack of good will, empathy and equality.

1/9/2025, 2:54:34 AM | 1 0 | View on Bluesky | view

Profile picture valebodi.bsky.social (@valebodi.bsky.social)

Virginia Woolf: A Night’s Darkness, A Day’s Sail Documentary #VirginiaWoolf

1/9/2025, 12:05:38 AM | 0 0 | View on Bluesky | view

Profile picture Ootlier (@ootlier.com) reposted

Bealach an t-Suidhe // Bellochantuy #beach #coast #sea #blue #kintyre #argyll #landscape #seascape

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24/7/2025, 6:01:50 PM | 10 2 | View on Bluesky | view

Profile picture valebodi.bsky.social (@valebodi.bsky.social)

1993!!! Just imagine if we had been listened to, believed and our disease properly researched! Instead we had decades of stigma, gaslighting, neglect, mistreatments and no specialized care, unlike all other major chronic diseases. Medical-made suffering on top of the illness. #ME/CFS #pwME

31/8/2025, 11:56:53 PM | 13 5 | View on Bluesky | view

Profile picture valebodi.bsky.social (@valebodi.bsky.social) reply parent

FYI ouraring.com/blog/oura-us... www.reddit.com/r/ouraring/c...

31/8/2025, 11:46:43 PM | 0 0 | View on Bluesky | view

Profile picture valebodi.bsky.social (@valebodi.bsky.social) reply parent

“The patients told them and that was the best they could do. That is still going to be the case." 19🤬93!!! They knew already from brain scans that #pwME have hypo-perfusion in the brain and yet here we are in 2025 still having to fight for research, care and proper support! @rfh1955.bsky.social 🙏🏻

31/8/2025, 11:40:50 PM | 5 0 | View on Bluesky | view

Profile picture valebodi.bsky.social (@valebodi.bsky.social) reply parent

treat the illness because there had been no proven medical test for diagnosing it and that, despite the latest breakthrough, that was unlikely to change. "The trouble is the GP has never been able to have or test or see anything that showed what was wrong, he said on BBC1 Breakfast News today.

31/8/2025, 11:35:38 PM | 3 0 | View on Bluesky | view

Profile picture valebodi.bsky.social (@valebodi.bsky.social) reply parent

infection, including vaccination, life trauma accident and possibly envi ronmental poisons - all of which are stresses to the immune system," he said. But Professor James Mowbray. consultant immunopathologist at St Mary's Hospital, London, said that in the past doctors have often been reluctant to

31/8/2025, 11:35:38 PM | 2 0 | View on Bluesky | view

Profile picture valebodi.bsky.social (@valebodi.bsky.social) reply parent

controls in terms of reduced blood flow to the brain." Consultant immunologist Dr Jonathan Brostofi, also of UCL, who has been working with 500 patients believes the illness need not be triggered only by a virus. "It is a clinical observation that there are many triggers for ME, apart from viral

31/8/2025, 11:35:38 PM | 3 0 | View on Bluesky | view

Profile picture valebodi.bsky.social (@valebodi.bsky.social) reply parent

action to draw attention to the plight of the 150,000 sufferers in Britain of ME - myalgic encephalomyelitis. Dr Durval Costa, a nuclear medicine physician at University College London, said: "Initial published results from brain scans found significant differences between ME patients and healthy

31/8/2025, 11:35:38 PM | 3 0 | View on Bluesky | view

Profile picture valebodi.bsky.social (@valebodi.bsky.social)

#ME/CFS 1993! WEDNESDAY, 1 SEPTEMBER, 1993 - Yuppie flu link to slower blood flow to the brain BRAIN scans have shown reduced blood flow in sufferers from the illness ME — once dismissed as yuppie flu. Results published today of the latest research into the illness come at the start of a month of

B&W cutout of a newspaper article dated WEDNESDAY, 1 SEPTEMBER, 1993 - 17 Yuppie flu link to slower blood flow to the brain BRAIN scans have shown reduced blood flow in sufferers from the illness ME — once dismissed as yuppie flu. Results published today of the latest research into the illness come at the start of a month of action to draw attention to the plight of the 150,000 sufferers in Britain of ME - myalgic encephalomyelitis. Dr Durval Costa, a nuclear medicine physi cian at University College London, said:
31/8/2025, 11:35:38 PM | 12 3 | View on Bluesky | view

Profile picture valebodi.bsky.social (@valebodi.bsky.social)

Nearly 29% of post-acute COVID-19 patients developed long COVID-19 in this Middle Eastern cohort. Female sex, diabetes, reinfection, and hospitalization predicted delayed recovery. Persistent symptoms and impaired HRQoL highlight the need for early risk stratification and structured post-COVID care.

31/8/2025, 10:29:18 PM | 16 5 | View on Bluesky | view

Profile picture valebodi.bsky.social (@valebodi.bsky.social)

From the # When you/we wake up aka Groundhog Day ME/CFS community on Reddit www.reddit.com/r/cfs/commen...

31/8/2025, 9:12:10 PM | 2 0 | View on Bluesky | view

Profile picture Adam Sharp (@adamcsharp.bsky.social) reposted

A colloquial Swedish word for giving a confident answer to something you know nothing about is killgissa, or “guy-guessing.” Conversely, the lesser-known word tjejveta (meaning “girl-knowing”) can describe elucidating (shelucidating?) on a topic you have expertise in.

31/8/2025, 5:34:20 PM | 666 152 | View on Bluesky | view

Profile picture valebodi.bsky.social (@valebodi.bsky.social)

Dreaming of the day when all clinicians, researchers, PTs/OTs/RNs, in every medical specialty will get what #PEM is. (Pun intended!) To get there we need properly educated medical students and compulsory CME to undo the damages of the dogmatic past. #ME/CFS #ICD-10G93.3 #ICD-10G93.32 #ICD-11-8E49

31/8/2025, 6:12:02 PM | 2 1 | View on Bluesky | view

Profile picture valebodi.bsky.social (@valebodi.bsky.social) reply parent

and KIR3DL2*010 (OR = 0.46, 95 %CI (0.30–0.71), p = 0.0005). Our data support an involvement of NK cells in ME/CFS. #ME/CFS #KIR #NKcells

31/8/2025, 4:53:59 PM | 1 0 | View on Bluesky | view

Profile picture valebodi.bsky.social (@valebodi.bsky.social) reply parent

in patients, i.e. KIR3DL3*002 (OR = 1.43, 95 %CI (1.09–1.86), p = 0.009), KIR3DL1*020 (OR = 2.20, 95 %CI (1.19–4.06), p = 0.01) and KIR3DL2*009 (OR = 1.56, 95 %CI (1.09–2.23), p = 0.01), while two alleles had a reduced patient frequency, i.e. KIR3DL3*013 (OR = 0.60, 95 %CI (0.42–0.86), p = 0.005)

31/8/2025, 4:53:59 PM | 1 0 | View on Bluesky | view

Profile picture valebodi.bsky.social (@valebodi.bsky.social)

We found no association between ME/CFS and KIR gene content or copy number variations. However, our data suggested that specific KIR alleles at loci encoding inhibitory receptors were associated with #ME/CFS, which was further supported by allelic haplotype analyses. Three alleles were more frequent

31/8/2025, 4:53:59 PM | 4 1 | View on Bluesky | view

Profile picture valebodi.bsky.social (@valebodi.bsky.social) reply parent

and so much you want and need to do, but have to pay dearly for everything you try to give. @HEALMECFS Mein Blog: healmecfs.wordpress.com

31/8/2025, 4:12:03 PM | 1 0 | View on Bluesky | view

Profile picture valebodi.bsky.social (@valebodi.bsky.social) reply parent

The deterioration often occurs with a time delay (12 - 72 hours after the overloading activity) and lasts for days, weeks or even months. So in summary any activity, no matter how nice it may be, can worsen the condition. This feature is absolutely cruel when you have so much to give to the world,

31/8/2025, 4:12:03 PM | 1 0 | View on Bluesky | view

Profile picture valebodi.bsky.social (@valebodi.bsky.social) reply parent

the central feature of myalgic encephalomyelitis (ME), the so-called Post-Exertional Malaise #P aka Post Exertional Neuroimmune Exhaustion (PENE). Having PENE means a significant worsening of the typical ME symptoms after physical, cognitive, emotional and sensory overload.

31/8/2025, 4:12:03 PM | 1 0 | View on Bluesky | view

Profile picture valebodi.bsky.social (@valebodi.bsky.social)

ME sufferers #pwME are like butterflies tied to a stone. The butterfly represents the beauty and potential of every single ME sufferer who had dreams, wishes and plans for their life, but who can no longer fully develop their own potential because of the illness. Responsible for this is

31/8/2025, 4:12:03 PM | 5 2 | View on Bluesky | view

Profile picture valebodi.bsky.social (@valebodi.bsky.social) reply parent

ME sufferers are like butterflies tied to a stone. The butterfly represents the beauty and potential of every single ME sufferer who had dreams, wishes and plans for their life, but who can no longer fully develop their own potential because of the illness.

M.E. IS LIKE BEING A BUTTERFLY TIED TO A STONE. *QUOTE FROM A 9 YEAR OLD GIRL WITH M.E. @HEALMECFS Mein Blog: healmecfs.wordpress.com ME sufferers are like butterflies tied to a stone. The butterfly represents the beauty and potential of every single ME sufferer who had dreams, wishes and plans for their life, but who can no longer fully develop their own potential because of the illness. Responsible for this is the central feature of myalgic encephalomyelitis (ME), the so-called Post-Exertional Neuroimmune Exhaustion (PENE). Having PENE means a significant worsening of the typical ME symptoms after physical, cognitive, emotional and sensory overload. The deterioration often occurs with a time delay (12 - 72 hours after the overloading activity) and lasts for days, weeks or even months. So in summary any activity, no matter how nice it may be, can worsen the condition. This feature is absolutely cruel when you have so much to give to the world, but have to pay dearly for everything you try to give. @HEALMECFS Mein Blog: healmecfs.wordpress.com
31/8/2025, 4:07:34 PM | 2 0 | View on Bluesky | view

Profile picture valebodi.bsky.social (@valebodi.bsky.social) reply parent

They definitely represent freedom, lightness and transformation. None of which are present in pwME’s lives.

31/8/2025, 3:58:08 PM | 2 0 | View on Bluesky | view

Profile picture valebodi.bsky.social (@valebodi.bsky.social) reply parent

Oh interesting facts

31/8/2025, 3:56:09 PM | 1 0 | View on Bluesky | view

Profile picture Andrew Gifford (@andrewgiffordphoto.bsky.social) reposted

Totally stuck - from my ME/CFS photo project glass.photo/andrewgiffor... ALT: colour photo of a beautiful black and silver butterfly, trapped inside a class paperweight, on a drab blue background #MECFS #pwME #LongCovid #Photography

30/8/2025, 4:11:38 PM | 22 11 | View on Bluesky | view

Profile picture valebodi.bsky.social (@valebodi.bsky.social) reply parent

diseases

31/8/2025, 3:39:55 PM | 0 0 | View on Bluesky | view

Profile picture valebodi.bsky.social (@valebodi.bsky.social)

Today’s Quotation is care of Bertolt Brecht. Listen in! Subscribe to Quotomania on quotomania.com or search for Quotomania on your favorite podcast app! Bertolt Brecht, orig. Eugen Berthold Friedrich Brecht, (born Feb. 10, 1898, Augsburg, Ger.—died Aug. 14, 1956, East Berlin, E.Ger.)

31/8/2025, 3:39:13 PM | 0 0 | View on Bluesky | view

Profile picture QueenCityJamz (@queencityjamz.bsky.social) reposted

Imagine hearing Bob Dylan play an unreleased "Desolation Row" for the first time at the Forest Hills Music Festival in Queens, New York OTD in 1965. He only recorded it 24 days earlier, for Highway 61 Revisited, which would be released 2 days after this concert. UNREAL [📷 Ken Regan]

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28/8/2025, 2:11:50 PM | 31 5 | View on Bluesky | view

Profile picture valebodi.bsky.social (@valebodi.bsky.social) reply parent

There is a before Highway 61 and an after HW61 and yes, it must have been 🤯 in so many amazing and good ways. #BlueSkyDylan

31/8/2025, 3:19:58 PM | 0 0 | View on Bluesky | view

Profile picture Dr Satoshi Akima, FRACP (@toshiakima.bsky.social) reposted

The Central Error of the Pandemic… Is that of running pandemic management by laissez-faire socioeconomic principles. If you grasp this, all the other errors fall into place as the inevitable consequence of following that line of thought. 🧵 1/x

4/11/2023, 11:33:07 AM | 430 149 | View on Bluesky | view

Profile picture valebodi.bsky.social (@valebodi.bsky.social) reply parent

✌️☮️ & 🚲🚴🚴‍♀️🚴‍♂️

31/8/2025, 2:45:21 PM | 0 0 | View on Bluesky | view

Profile picture valebodi.bsky.social (@valebodi.bsky.social) reply parent

Sending all my love & solidarity to you Sarah and a happy belated & posthumous birthday to our Maeve 💙💙💙🫂💙💙💙

31/8/2025, 2:43:41 PM | 1 0 | View on Bluesky | view

Profile picture The Sick Times (@thesicktimes.org) reposted

The U.S.’s summer COVID-19 surge continues, with cases increasing across all regions through early August, driven by travel and gatherings as well as the variant XFG. This week's full COVID-19 trends by @betsyladyzhets.bsky.social: bit.ly/4mWEUk9

ID: 1) An orange background and a meter indicating moderate wastewater levels of SARS-CoV-2. The text reads: The U.S.’s summer COVID-19 surge continues, with cases increasing across all regions through early August, driven by travel and gatherings as well as the variant XFG. Despite the obvious increases in COVID-19 spread, the CDC’s wastewater dashboard — which recently updated its methodology — downplays current viral activity levels as “low.” Wastewater data from the CDC, WastewaterSCAN, and Biobot Analytics all show continued increases in SARS-CoV-2 levels at wastewater testing sites nationwide. Recent levels are much lower than the peaks of summer surges in 2023 and 2024, but this year’s summer wave started later than in prior years and now coincides directly with children starting their school years.  2) Screenshot from the CDC NWSS dashboard. Text reads: D: 1) An orange background and a meter indicating moderate wastewater levels of SARS-CoV-2. The text reads: The CDC reported a 55% increase in its national wastewater viral activity level between August 2 and August 9, yet surprisingly classifies SARS-CoV-2 activity as “low.” That’s because the agency revised its wastewater categories on Friday — and continued a long-running pattern in which the agency minimizes COVID-19’s continued risk in its data presentation. Adding confusion, the top of the dashboard claims the current national activity level is “low” even though the latest data point in the CDC’s chart, 3.7, meets the threshold for “moderate. ) A line chart from the CDC, titled
19/8/2025, 9:38:09 PM | 70 44 | View on Bluesky | view

Profile picture valebodi.bsky.social (@valebodi.bsky.social) reply parent

Remember the pastel-washing of the COV-19 levels’ map back in 2022/2023? Well now there isn’t even a pastel shaded map…

31/8/2025, 2:34:46 PM | 0 0 | View on Bluesky | view

Profile picture Miles W. Griffis (@mileswgriffis.bsky.social) reposted

“Long COVID researchers have proven, to an irrefutable degree, the scale and urgency of this global public health crisis...we are beginning a new era of incredible advancement in the field." @betsyladyzhets.bsky.social and I reported on the Keystone Symposia. thesicktimes.org/2025/08/19/t...

20/8/2025, 5:12:21 PM | 208 73 | View on Bluesky | view

Profile picture Prof Gavin Yamey (@gavinyamey.bsky.social) reposted

YES! Boys should get HPV vaccine for at least 6 reasons, including to protect themselves from head & neck cancers & other HPV-related cancers 5 reasons are summarized here, and in the rest of the thread I'll discuss herd immunity www.mskcc.org/news/5-reaso... 1/n

26/8/2025, 4:00:51 PM | 142 53 | View on Bluesky | view

Profile picture C.H. Romatowski (@romatowski.bsky.social) reposted reply parent

Some reading on that if you’re curious. “‘The research shows that any mask is much better than no mask, and an N95 is significantly better than the other options. That’s the No. 1 message,’ says the study’s senior author, Donald Milton, a professor of environmental health.”

29/8/2025, 11:48:25 PM | 36 25 | View on Bluesky | view

Profile picture valebodi.bsky.social (@valebodi.bsky.social) reply parent

Thank you for reposting this @coolbikeart1.bsky.social. It’s so good to re discover mutuals or people that we used to follow on other soc media. Even if I am disabled and cannot ride my bike anymore, seeing this kind of realities and other people doing it, fills ME with joy.

31/8/2025, 2:11:21 PM | 1 0 | View on Bluesky | view

Profile picture BK. Titanji (@boghuma.bsky.social) reposted reply parent

I hope the COVID vaccines would at least be available through employee health for healthy HCWs this winter: 1. A vaccinated health workforce reduces nosocomial spread of respiratory viruses 2. No hospital wants Drs and nurses out sick with COVID during peak utilization healthcare months.

27/8/2025, 6:53:48 PM | 41 12 | View on Bluesky | view

Profile picture valebodi.bsky.social (@valebodi.bsky.social) reply parent

Medical students need them too! 🙏🏽

31/8/2025, 1:37:00 PM | 0 0 | View on Bluesky | view

Profile picture valebodi.bsky.social (@valebodi.bsky.social) reply parent

Thank you Dr. Crystal 🙏🏻

31/8/2025, 1:27:49 PM | 1 0 | View on Bluesky | view

Profile picture Ruth Ann Crystal (@drruth.bsky.social) reposted

COVID VACCINE INFO: List of states requiring a prescription for a COVID vaccine at CVS or Walgreens t.co/ZqCZwxwa57 COVID vaccine availability at CVS buff.ly/JHG5vml 💉COVID vaccines are no longer available at CVS in Massachusetts, Nevada or New Mexico. Vaccines.gov is still down. #medsky 🛟😷🧪

Text showing states that require a prescription at CVS or Walgreens pharmacies. Map in purples and yellow showing COVID vaccine availability at CVS pharmacies. COVID vaccines are no longer available at CVS in Massachusetts, Nevada or New Mexico.
30/8/2025, 6:02:10 PM | 203 154 | View on Bluesky | view

Profile picture valebodi.bsky.social (@valebodi.bsky.social) reply parent

The only difference between us pwME and butterflies being that they only live for a few days, while we can last and do survive rotting away for decades, with these horrible disease. Mind you that to a butterfly a few days may feel like an eternity…

31/8/2025, 1:08:54 PM | 1 0 | View on Bluesky | view

Profile picture valebodi.bsky.social (@valebodi.bsky.social) reply parent

during T-cell recruitment. From Dr. Selina R Shaw GP rapid response in the BMJ Research must consider Post Exertional Malaise #PEM as a neurological event underpinning fluctuating cognitive dysfunction in Long Covid/ #ME/CFS www.bmj.com/content/390/...

31/8/2025, 12:45:08 PM | 5 1 | View on Bluesky | view

Profile picture valebodi.bsky.social (@valebodi.bsky.social) reply parent

powerful immune stimulus, yet the link between peripheral tissue injury and delayed onset neurological deterioration remains unexplored. Similarly, the unexplained 48 hr lag between exertion and symptom onset invites parallels with type IV hypersensitivity, in which delayed immune responses arise

31/8/2025, 12:45:08 PM | 3 0 | View on Bluesky | view

Profile picture valebodi.bsky.social (@valebodi.bsky.social)

Recent work demonstrates that exercise exceeding the aerobic threshold causes skeletal muscle damage and necrosis in LC patients with #PEM (3). Since the aerobic threshold is pathologically lowered in this group, even minimal daily movements may induce metabolic tissue damage. Necrosis is a

31/8/2025, 12:45:08 PM | 6 3 | View on Bluesky | view

Profile picture valebodi.bsky.social (@valebodi.bsky.social)

Decode ME #GWAS Initial DNA results webinar 14 August, 2025 Prof. Chris Ponting PI @cgatist.bsky.social @decodemestudy.bsky.social @actionforme.bsky.social @ukbiobank.bsky.social youtube.com/watch?v=rsvr...

30/8/2025, 11:24:25 PM | 0 1 | View on Bluesky | view

Profile picture Michael Olesen (@molesen.bsky.social) reposted

I'll make it easy to determine if you are at high risk from COVID. Are you alive? If you answer YES, then you are at high risk. If asked at a pharmacy if you have a high-risk condition, say yes. There's no need to tell them which condition you have.

30/8/2025, 9:05:49 PM | 548 141 | View on Bluesky | view

Profile picture Pulitzer Center (@pulitzercenter.org) reposted

Measles outbreaks throughout the United States in 2025 have reignited concerns over vaccination. The reporting series "Tragedy in Paradise" by AndyPierrotti, for @atlantanewsfirst.com, sheds light on the potential consequences of declining vaccination rates. 👉 bit.ly/4mE6D9d

29/8/2025, 9:37:29 PM | 2 1 | View on Bluesky | view

Profile picture Madhu Pai, MD, PhD (@madhupai.bsky.social) reposted

This is a great time to watch this @pulitzercenter.org documentary on why “doctors and parents in Samoa blame influential vaccine skeptic Robert F. Kennedy Jr. and his associates for bolstering anti-vax sentiment” pulitzercenter.org/blog/explori...

30/8/2025, 9:05:54 PM | 63 34 | View on Bluesky | view

Profile picture Dr. Jeroen den Dunnen (@drdendunnen.bsky.social) reposted

Long COVID patients show immunological imprinting and impaired antibody class switching: fewer IgG/IgA antibodies against SARS-CoV-2 spike, but more against seasonal coronaviruses. Interesting finding by my PhD student Ashwin Mak in J Med Virol: onlinelibrary.wiley.com/doi/10.1002/... 1/6

30/8/2025, 8:06:46 PM | 32 11 | View on Bluesky | view

Profile picture Comfortably Numb (@numb.comfortab.ly) reposted

Those 1920s - 1940s NYT headlines about Hitler is a sight to behold www.nytimes.com/search?dropm...

NYT 1924: HITLER TAMED BY PRISON.; Released on Parole, He Is Expected to Return to Austria.
13/3/2025, 1:01:21 PM | 221 48 | View on Bluesky | view

Profile picture valebodi.bsky.social (@valebodi.bsky.social) reply parent

spirit is truly important. The ancient injunction to love thy neighbor as thyself is still the force that animates our faith—a faith that we are determined shall live and conquer in a world poisoned by hatred and ravaged by war.”

30/8/2025, 6:36:57 PM | 0 0 | View on Bluesky | view

Profile picture valebodi.bsky.social (@valebodi.bsky.social)

In a radio address for the Mobilization for Human Needs on October 13, 1940, then President FDR said: “Human kindness has never weakened the stamina or softened the fiber of a free people. A nation does not have to be cruel in order to be tough. The vigorous expression of our American community

30/8/2025, 6:36:57 PM | 2 0 | View on Bluesky | view

Profile picture Paul Graf (@paulginva.bsky.social) reposted reply parent

This is something else you don't see in Japan because people believe in science. Japan has an effective (adjusted) COVID-19 rate for five years of only 5-6% of the USA, with death rates also that comparatively low. Parties from left-to-right accepted mRNA vaccines, masks, and social distance.

Florian Krammer @florian_krammer 12h A colleague of mine, an ID physician, dropped by today to say goodbye. Не is leaving medicine. I asked him, half jokingly, 'you don't want to help people anymore?'. His answer was serious: 'I learned during the pandemic that people don't want to be helped.'
6/8/2025, 11:48:28 AM | 6 4 | View on Bluesky | view

Profile picture Paul Graf (@paulginva.bsky.social) reposted

This what you get when you have a culture that prizes cooperation and mutual respect instead of individualism.

Brian Krassenstein K @krassenstein Subscribe I just returned from two weeks in Japan, and I have to be honest, it really opened my eyes to how far behind the U.S. is falling in so many basic ways. Some things that stood out: In two weeks across some of Japan's most densely populated cities, I saw only two visibly homeless people. I saw one person who appeared to be struggling with addiction. High-speed rail made affordable, clean, efficient transportation the norm, not a fantasy. I never once felt unsafe letting my kids walk freely beside me in public. Despite having far fewer public trash cans, Japan's streets had a fraction of the litter. The country's reduced income inequality was visible everywhere, from housing to public services. I already know what some right-wing folks will say:
6/8/2025, 11:41:45 AM | 4 1 | View on Bluesky | view

Profile picture valebodi.bsky.social (@valebodi.bsky.social) reply parent

individuals exhibited broader cross-neutralizing responses than those w/hybrid immunity, suggesting that infection history may narrow antibody responses through immune imprinting. These findings highlight the ongoing challenge of maintaining vaccine effectiveness against evolving SARS-CoV-2 variants

30/8/2025, 6:24:31 PM | 0 0 | View on Bluesky | view

Profile picture valebodi.bsky.social (@valebodi.bsky.social)

In Brief SARS-CoV-2 continues to evolve, producing variants that escape vaccine-induced immunity. Abbad et al. show that KP.2 monovalent vaccination provides limited protection against antigenically distant FLiRT variants (LP.8.1, LF.7.1, NB.1.8.1, XFG) and BA.3.2. Surprisingly, vaccination-only

30/8/2025, 6:24:31 PM | 2 1 | View on Bluesky | view

Profile picture Julia Doubleday (@juliadoubleday.bsky.social) reposted reply parent

As always, if you're enjoying The Gauntlet, please consider becoming a paid subscriber for $7/month (or $70 annual!) I never paywall critical public health info, but paid subscribers do get access to additional personal essays. Thanks all for the support! www.thegauntlet.news/subscribe

17/9/2024, 8:57:45 PM | 7 2 | View on Bluesky | view

Profile picture Julia Doubleday (@juliadoubleday.bsky.social) reposted

Why is the public learning potentially life-altering information about a virus they’ve almost certainly contracted multiple times now from the Economics section of Bloomberg? (Or from The Gauntlet, for that matter?) Read my latest: www.thegauntlet.news/p/people-can...

17/9/2024, 8:55:51 PM | 142 79 | View on Bluesky | view

Profile picture valebodi.bsky.social (@valebodi.bsky.social) reply parent

We are literally living or shall we say, surviving, on a tight rope. 💙💙💙🫂💙💙💙

30/8/2025, 5:47:50 PM | 1 0 | View on Bluesky | view

Profile picture valebodi.bsky.social (@valebodi.bsky.social) reply parent

Sorry for eventually putting the MTAF bad ear worm and intruding in your Saturday plans.

30/8/2025, 5:37:00 PM | 1 0 | View on Bluesky | view

Profile picture valebodi.bsky.social (@valebodi.bsky.social) reply parent

More than a whiff, to the tune of More Than a Feeling…

30/8/2025, 5:35:04 PM | 2 0 | View on Bluesky | view