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#me

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Juchti

Heute ist der internationale #MEAwarenessDay. Heute wird überall auf die schwere Multisystemerkrankung #ME, viele sagen auch #MECFS, aufmerksam gemacht.

#ME steht für "Myalgische Enzephalomyelitis", das "CFS" für "Chronisches Fatigue Syndrom". Betroffene bevorzugen häufig den Begriff ME, weil "CFS" die schwere Erkrankung verharmlost.

Betroffene sind nicht "müde". Ihr Körper produziert auf zellulärer Ebene nicht ausreichend Energie. 25% der Betroffenen sind hausgebunden oder bettlägerig.

Continued thread
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knizer

#BostonWeekend 4/x
This week’s curated list comes from my reviewing various listservs, social media feeds, and bulletin boards.

Here’s some of the web sites i reviewed this week to bring you this thread:
bostonshows.org
cambridgeday.com/events-ahead/
calendar.mit.edu/group/wmbr_ra
wumb.org/calendar/
timeout.com/boston/things-to-d
bostonbikeevents.net
bostonmagazine.com/things-to-d
linktr.ee/bostonimprovcalendar
bostonglobe.com/2025/05/08/art
reddit.com/r/boston/comments/1
thebostoncalendar.com/events/8
thebostoncalendar.com/events/7
mailchi.mp/bostonartreview/wee
mailchi.mp/pleasurepie/may2025
Pride events: docs.google.com/spreadsheets/d

bostonshows.orgBoston Shows: Live Music ListingsConcert calendar for Greater Boston
#Boston#Massachusetts#MA
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Brian Hawthorne

I just had a tiring and stressful day navigating the outside world. I bought a car, went grocery shopping, picked up my wife, went out for outdoor bbq, and ran into old colleagues and friends and townspeople who all had to be talked with.
I nearly shutdown at one point, but I powered through. This is more than I have attempted in one day since getting long covid.
I am now at home, sitting on the porch and listening to the evening birds and the Jimi Hendrix Experience, taking a 150 mg dose of dried Cannabis vaporized at 165°C, and eating dark chocolate malt balls. I hope I don’t crash tomorrow. Oh, and I’m on a new medication trial so there’s that added flux. I am just realizing how stupid this was. I hope I don’t regret it.

#ActuallyAutistic#LongCovid#ME
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Bass #AlleBurgers #EcoHumanist

#PeeNee2 on X wrote:

New preprint #RobWust + team

"our observations suggest intrinsic skeletal muscle abnormalities contribute to limited exercise capacity, including reduced capillary supply relative to muscle fiber size and mitochondrial impairments."

medrxiv.org/content/10.1101/20

#LongCovid #ME #MEcfs @longcovid

medRxiv · Skeletal muscle properties in long COVID and ME/CFS differ from those induced by bed restPatients with long COVID and myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) suffer from a reduced exercise capacity, skeletal muscle abnormalities and post-exertional malaise (PEM), where symptoms worsen with cognitive or physical exertion. PEM often results in avoidance of physical activity, resulting in a lower aerobic fitness, which may contribute to skeletal muscle abnormalities. Here, we compared whole-body exercise responses and skeletal muscle adaptations after strict 60-day bed rest in healthy people with those in patients with long COVID and ME/CFS, and healthy age- and sex-matched controls. Bed rest altered the respiratory and cardiovascular responses to (sub)maximal exercise, while patients exhibited respiratory alterations only at submaximal exercise. Bed rest caused muscle atrophy, and the reduced oxidative phosphorylation related to reductions in maximal oxygen uptake. Patients with long COVID and ME/CFS did not have muscle atrophy, but had less capillaries and a more glycolytic fibers, none of which were associated with maximal oxygen uptake. While the whole-body aerobic capacity is similar following bed rest compared to patients, the skeletal muscle characteristics differed, suggesting that physical inactivity alone does not explain the lower exercise capacity in long COVID and ME/CFS ### Competing Interest Statement The authors have declared no competing interest. ### Funding Statement This study was supported the Patient-Led Research Collaborative for Long COVID, the AMC and VU foundation, ZonMw Onderzoeksprogramma for ME/CVS, the Solve ME 2022 Ramsay Grant Program, ME Research UK, ME Stars of Tomorrow Scholarship award from the ICanCME Research Network (to B.T.C.), and Stichting Long COVID Nederland. ### Author Declarations I confirm all relevant ethical guidelines have been followed, and any necessary IRB and/or ethics committee approvals have been obtained. Yes The details of the IRB/oversight body that provided approval or exemption for the research described are given below: Ethics committee of Amsterdam UMC, Medical Association North Rhine (number 2018143) and NASA (Johnson Space Center, Houston, United States) gave ethical approval for this work. I confirm that all necessary patient/participant consent has been obtained and the appropriate institutional forms have been archived, and that any patient/participant/sample identifiers included were not known to anyone (e.g., hospital staff, patients or participants themselves) outside the research group so cannot be used to identify individuals. Yes I understand that all clinical trials and any other prospective interventional studies must be registered with an ICMJE-approved registry, such as ClinicalTrials.gov. I confirm that any such study reported in the manuscript has been registered and the trial registration ID is provided (note: if posting a prospective study registered retrospectively, please provide a statement in the trial ID field explaining why the study was not registered in advance). Yes I have followed all appropriate research reporting guidelines, such as any relevant EQUATOR Network research reporting checklist(s) and other pertinent material, if applicable. Yes All data produced in the present study are available upon reasonable request to the authors
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bananamangodog

Watching this now.

From the description: "In this film, five medical doctors open up about living with #PAIS/#IACC conditions like #me #longCOVID, and chronic #Lyme. It’s a format that I believe has never been shown before, not just in the Netherlands but possibly worldwide!

They speak candidly about their experiences with #illness, what they were taught (or not taught) in medical school, and how that shaped their own treatment decisions—sometimes even leading to harm. They reflect on how becoming patients themselves radically changed their views on #medicine, #science, and what needs to change in #healthcare. It’s raw, honest, and incredibly insightful—for medical professionals, researchers, politicians, and #patients alike.

This project was a true labor of love. We had zero budget. Three amazing cameramen, a few behind-the-scenes heroes, the MDs themselves, and those from the community who shared material for the film—all volunteered their time and energy. It wasn’t easy: illness and #PEM often got in the way, but we somehow made it."

youtube.com/watch?v=J0ywwLIfH_w

YouTubeDoctors as Patients (with subtitles)By Anil about ME
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Nando161

"Look at him, he wants nothing to do with anyone now, whatever you did to him fix him!" - Assumptions about some people discussing shit about me and I'm happy to be completely wrong but yeah I withdraw myself from everyone its common and for good reason.

#aboutme#meirl#me
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Jay Baker

I can confirm that my partner's Long Covid and ME symptoms worsened after this test, also being told by a member of staff "See? You could do it!" when clearly "could" does not at all always mean "should," not by a long shot. thesicktimes.org/2025/04/08/it #ME #MECFS #LongCovid

The Sick Times - Chronicling the Long Covid crisis · “It’s like torture”: The tilt table test could be risky for many people with Long COVID - The Sick Times“The tilt table test is likely to be contraindicated in people with severe ME/CFS and related conditions,” Harvey said. Studies show about half of all Long COVID patients meet the diagnostic criteria for ME, a disease marked by debilitating post-exertional malaise (PEM). Harvey is not alone. A dozen people with ME and Long COVID interviewed for this article shared stories of harmful TTT experiences, and many more have shared the same on social media.
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