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@valebodi.bsky.social

1.5K followers 1.2K following 3.5K posts

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

www.tandfonline.com

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valebodi.bsky.social @valebodi.bsky.social · Jan 7

#MECFS is such a punishing & invisible illness which has nothing to do with fatigue. It’s a neuro-immuno-MEtabolic systemic dysfunction. It takes so much fortitude, endurance and courage to survive 24/7 on the edge of an abyss. We #PwME are reverse marathoners.

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Carolyn Barber, MD @cbarbermd.bsky.social · 10h

Measles cases hit their highest level in 30 years.

⭐️150+ unvaccinated kids in SC quarantined for 3 wks
⭐️118 students quarantined in Minneapolis
⭐️100+ cases along the Utah–AZ border
⭐️1,500+ U.S. cases so far this year

💉 Experts warn it’s only going to get worse #BlueSky #MedSky #NewsSky #SciSky

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valebodi.bsky.social @valebodi.bsky.social · 8h

treatment is needed.
#CBF #OI #ME/CFS #POTS #OH #Dysautonomias #LongCOVID

valebodi.bsky.social @valebodi.bsky.social · 8h

myalgic encephalomyelitis/chronic fatigue syndrome #ME/CFS and long COVID, heart rate and blood pressure are frequently normal despite significant drops in CBF. This often leads to the incorrect conclusion that there is nothing hemodynamically abnormal in these patients and thus no explanation or

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valebodi.bsky.social @valebodi.bsky.social · 8h

decrease quality of life. Because CBF is not easy to measure, rises in heart rate or drops in blood pressure are used as proxies for abnormal CBF. These result in diagnoses such as postural orthostatic tachycardia syndrome and orthostatic hypotension. However, in many other OI syndromes such as

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valebodi.bsky.social @valebodi.bsky.social · 8h

VIP Review paper on Cerebral Blood Flow in Orthostatic Intolerance

Cerebral blood flow (CBF) is vital for delivering oxygen and nutrients to the brain. Many forms of orthostatic intolerance (OI) involve impaired regulation of CBF in the upright posture, which results in disabling symptoms that

www.ahajournals.org

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MedPage Today @medpagetoday.com · 6d

"There is nothing beautiful about shifting the burden onto those least able to bear it. But this is precisely what our nation is now poised to do."

ME/CFS and long COVID advocate Laurie Jones writes on Medicaid work requirements. https://www.medpagetoday.com/opinion/second-opinions/117839?trw=no

Opinion | Medicaid Work Requirements Will Devastate People With Invisible Disabilities

ME/CFS and long COVID patients must qualify as 'medically frail'

www.medpagetoday.com

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Dr Elisa Perego @elisaperego78.bsky.social · 8h

"HIV/AIDS and COVID-19 are preventable infectious diseases with chronic systemic impacts including immune system dysfunction."

#LongCovid

www.ajpmfocus.org/article/S277...

COVID-19 is “Airborne AIDS”: provocative oversimplification, emerging science, or something in between?

COVID-19 caused by SARS-CoV-2 is often compared to other pandemics for its societal and global health impact, with some commentators drawing parallels to HIV/AIDS due to the immune dysfunction caused ...

www.ajpmfocus.org

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Go Green @ecowarriorss.bsky.social · 4d

Humans causing climate to change 170 times faster than natural forces
“The human magnitude of climate change looks more like a meteorite strike than a gradual change.”

According to Professor Will Steffen who sadly is no longer with us but his worlds live on
www.theguardian.com/environment/...

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Prof Brendan Crabb AC @brendancrabb.bsky.social · 4d

"Policymakers should consider the consequences for workers, including the value of policies and actions that mitigate the spread of COVID-19 in the workplace."

Indeed, they’re mad not to. Improving indoor air quality is key, with other benefits too.

Dick Zoutman @dickzoutman.bsky.social · 4d

Enduring Outcomes of COVID-19 Work Absences on the US Labor Market url: jamanetwork.com/journals/jam...

Enduring Outcomes of COVID-19 Work Absences on the US Labor Market

This cohort study examines the extent to which COVID-19 continues to generate work absences and decrease labor force participation beyond the pandemic period in the US.

jamanetwork.com

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Burnet Institute @burnetinstitute.bsky.social · 1d

"It really can only take one traveller to start an outbreak like we've seen in WA," said Burnet Institute public health researcher Milena Dalton.

She urged anyone born during or after 1966 to ensure they have two documented doses of the measles vaccine.

www.abc.net.au/news/2025-10...

Measles cases from unknown source climbing in WA

Health authorities say they are not able to trace WA's latest measles cases to a source, meaning they cannot tell how far the virus has spread.

www.abc.net.au

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valebodi.bsky.social @valebodi.bsky.social · 8h

those with severe #ME/CFS. Respondents mentioned that there are controversies surrounding graded exercise therapy, noting that due to #PEM, pacing and staying within an ‘energy envelope’ was important to avoid overexertion and symptom exacerbation.
@emergeaustralia.bsky.social

valebodi.bsky.social @valebodi.bsky.social · 8h

should move away from outdated perspectives that the condition is psychological. Instead, respondents would like the new guidelines to acknowledge that ME/CFS has a biomedical basis and that the suggested cardinal symptom, post-exertional malaise (PEM), requires careful management, especially for

valebodi.bsky.social @valebodi.bsky.social · 8h

criteria. Ideally these consistent diagnostic criteria would be used universally by primary care clinicians across Australia. Respondents were clear that new guidelines should move away from outdated perspectives that the condition is psychological. Instead, respondents would like the new guidelines

valebodi.bsky.social @valebodi.bsky.social · 8h

Respondents highlighted that #ME/CFS is an under-represented condition and that they often felt dismissed when seeking support. Respondents were keen to have clearer information about diagnosis in the new guidelines, including consistent diagnostic criteria. Ideally these consistent diagnostic

Emerge Australia @emergeaustralia.bsky.social · 2d

The @nhmrcgovau scoping survey for the new #MECFS clinical guidelines received 1,000+ responses — mostly from people with lived experience

📄 Read more 👉 zurl.co/LrdDJ
#LongCOVID #NHMRC

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Emerge Australia @emergeaustralia.bsky.social · 2d

The @nhmrcgovau scoping survey for the new #MECFS clinical guidelines received 1,000+ responses — mostly from people with lived experience

📄 Read more 👉 zurl.co/LrdDJ
#LongCOVID #NHMRC

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Bateman Horne Center @batemanhornecenter.bsky.social · 10h

Milestone moment for ME/CFS awareness!
The American College of Sports Medicine has added a section on ME/CFS to its Exercise Guidelines for the first time ever, thanks to @workwellfoundation.bsky.social and collaborators.

Read more: https://bit.ly/46P31vP
#MECFS #ACSM @acsm1954.bsky.social

"History Made! The American College of Sports Medicine includes ME/CFS in global exercise guidelines for the first time."

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valebodi.bsky.social @valebodi.bsky.social · 8h

investment and interest in solutions for patients with ME/CFS. ⚠️⚠️⚠️

valebodi.bsky.social @valebodi.bsky.social · 8h

ME/CFS , in contrast to the impressive achievements seen in HIV/AIDS. It explores the obstruction of mind-body dualism in a historical context, and examines some of the possible obstacles to pharmaceutical enquiry. ⚠️⚠️⚠️ Nothing of real substance is identified that would justify the lack of

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valebodi.bsky.social @valebodi.bsky.social · 8h

AIDS & ME/CFS: a tale of two syndromes
By AJ Pinching (2003)

Both HIV/AIDS myalgic encephalomyelitis aka #ME/CFS presentedmajor challenges for medicine, science and society. This article explores what could have impeded investigation of - and specifically pharmaceutical engagement with -

AIDS and CFS/ME: a tale of two syndromes

Both HIV/AIDS and chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) presented major challenges for medicine, science and society. This article explores what could have impeded investigation ...

pmc.ncbi.nlm.nih.gov

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ME/CFS Science @mecfsskeptic.bsky.social · 12h

By pointing to neurons in the brain, DecodeME provided another piece of the puzzle in understanding ME/CFS.

The big challenge is how to connect this to an immune trigger, as ME/CFS often follows an infection such as EBV or COVID-19.

ME/CFS Science @mecfsskeptic.bsky.social · 1d

1) We’ve just published our second instalment on the DecodeME results, this timing zooming in on the genes associated with ME/CFS.

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paris martineau @paris.nyc · 13h

lastly, a common rebuttal to contaminant reporting is that there are unavoidable levels of lead in lots of foods. some context:

taking just one serving of one of the powders we tested would expose you to 45% more lead than the average american gets from everything they eat/drink in a day combined

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paris martineau @paris.nyc · 13h

nearly all the plant-based products we tested had elevated lead levels: vegan powders had 9x as much lead as dairy and 2x as much as beef

though dairy-based powders had the lowest levels, half were still too contaminated for safe daily use

you may be asking: how could this be? well...

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paris martineau @paris.nyc · 14h

my latest investigation for @consumerreports.org is based on months of reporting and 60+ lab tests of leading protein supplements

we found that most protein powders and shakes have more lead in one serving than our experts say is safe to have in a day (🧵)

www.consumerreports.org/lead/protein...

Protein Powders and Shakes Contain High Levels of Lead - Consumer Reports

CR tests of 23 popular protein powders and shakes found that most contain high levels of lead.

www.consumerreports.org

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valebodi.bsky.social @valebodi.bsky.social · 10h

An excerpt about endometriosis adapted from Doing Harm: The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick by Maya Dusenbery.
Via @teenvogue.com
@mayadusenbery.bsky.social
#Pain #Endometriosis #MedicalEpistemicInjustice

Why We Need to Stop Normalizing Menstrual Pain

Endometriosis is going undiagnosed in millions of women.

www.teenvogue.com

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valebodi.bsky.social @valebodi.bsky.social · 10h

Ask Me About My Uterus: Read an Exclusive Excerpt from Abby Norman's 2018 book

www.endofound.org/ask-me-about...

#Pain #Endometriosis

@abbynormanwriter.com

Ask Me About My Uterus: Read an Exclusive Excerpt from Abby Norman's New Book

It all started when I took what I now consider to be the worst shower of my life, writes author Abby Norman in the book.