@ahimsa_pdx@disabled.social cover
@ahimsa_pdx@disabled.social avatar

ahimsa_pdx

@ahimsa_pdx@disabled.social

Vegetarian, book lover📚 Living with ME/CFS and Dysautonomia since 1990 ♿️ She/Her

Please use #AltText on images/GIFs❤️

Yes, I'd love to see a photo of your cat😻

Avatar photo: Old photo of my cat, tabby with white chest & paws. Banner photo: Trees in a park with green leaves.

Just my posts, no boosts = https://justmytoots.com/@ahimsa_pdx?public_only=true

#MEcfs #PwME #Dysautonomia #POTS #LongCovid #Disability #Accessibility

This profile is from a federated server and may be incomplete. For a complete list of posts, browse on the original instance.

ElleGray , to random
@ElleGray@mstdn.social avatar

[Thread, post or comment was deleted by the author]

    •
    ahimsa_pdx ,
    @ahimsa_pdx@disabled.social avatar

    @ElleGray
    For some reason their fighting pose reminded me of this old toy 😂

    nathanlovestrees , to random
    @nathanlovestrees@disabled.social avatar

    Video of a great blue heron flying from a tree branch and over a stream, landing on some rocks near a waterfall. The stream is lined with hardwood trees and there are several large boulders in the stream.

    ahimsa_pdx ,
    @ahimsa_pdx@disabled.social avatar

    @nathanlovestrees Wow, love this short video! So cool to watch it fly!

    ahimsa_pdx , to ChronicIllness group
    @ahimsa_pdx@disabled.social avatar

    "Long Covid feels like a gun to my head"

    https://www.statnews.com/2024/06/18/long-covid-infectious-disease-expert-personal-story-life-with-no-cure/

    "I have spent my career studying infectious diseases that fall under the heading of neglected tropical diseases. Now I have a neglected disease — long Covid — an incurable (for now and for me) disease."

    @longcovid @mecfs
    @chronicillness

    ahimsa_pdx OP ,
    @ahimsa_pdx@disabled.social avatar

    @longcovid @mecfs @chronicillness

    Every time I read these personal stories about Long Covid there is a lot that matches my own illness onset in January 1990 - chest pains, orthostatic intolerance, shortness of breath, exhaustion, etc.

    I have ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome), not Long Covid, but there is a tremendous amount of overlap. About half of Long Covid patients match ME/CFS criteria.

    loren , to random
    @loren@flipping.rocks avatar

    Looks like the whole court is out today. Kingfishers and kingbirds. Just need some kinglets to round things out

    ahimsa_pdx ,
    @ahimsa_pdx@disabled.social avatar

    @loren @nathanlovestrees 😂

    Thank you for your service!

    ahimsa_pdx , to MECFS group
    @ahimsa_pdx@disabled.social avatar

    From Medscape:

    MDs' One-Word Summary of Long COVID Progress: 'Frustration'

    https://www.medscape.com/viewarticle/mds-one-word-summary-long-covid-progress-frustration-2024a1000axc

    "For long COVID doctors and patients, there has been little to no progress addressing the challenges, leaving many discouraged."

    Reminder that roughly half of all Long Covid patients meet ME/CFS diagnostic criteria.

    @longcovid @mecfs

    The latest Centers for Disease Control and Prevention Household Pulse Survey, taken between March 5 and April 1, 2024, estimated that nearly 7% of the adult population — more than 18 million people — currently have long COVID. Data from other countries also suggest that millions have been living with long COVID for years now, and hundreds of thousands have seen their day-to-day activities significantly affected. There is an urgent need for more funding, long COVID clinicians, multidisciplinary clinics, and education for non–long COVID physicians and specialists, doctors said. Instead, funding remains limited, clinics are closing, wait times are "horrendously long," patients are left in limbo, and physicians are burning out.
    ALT
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    • ahimsa_pdx OP ,
    @ahimsa_pdx@disabled.social avatar

    Link for resources and more information from

    https://www.meaction.net/stoprestpace/

    @longcovid @mecfs

    loren , to random
    @loren@flipping.rocks avatar

    lack a daisy? i sure do

    ahimsa_pdx ,
    @ahimsa_pdx@disabled.social avatar

    @loren
    😂

    Will a photo help? 😁

    DemocracyMattersALot , to random
    @DemocracyMattersALot@mstdn.social avatar

    Poor White people. Help them to feel welcome.

    Four panel comic strip by Jen Sorensen: 1: "Many white Americans fail to assimilate. Some self-segregate in homogenous neighborhoods" Houses in gated community with the sign "Caucasian Pointe - No trespassing." 2. "Others fly the flag of a foreign country" A large truck drives by, flying the confederate battle flag and playing the song "Free Bird" loudly (which is labeled "traditional folk music") 3. "Many refuse to speak contemporary English" An angry looking white woman says, "Seems like the Homos and Orientals are everywhere!" 4. "Will these stubborn holdouts ever integrate into our multiracial society?" A white man wears a red MAGA hat and a Trump t-shirt. A brown skinned person points toward him and says, "It might help if they stopped wearing those funny hats."
    ALT
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    • + pluralistic, Npars01
    ahimsa_pdx ,
    @ahimsa_pdx@disabled.social avatar

    @DemocracyMattersALot

    This is a four panel comic by @jensorensen

    The image description that I came up with was too long for the text that's allowed on my server.

    So I've attached the image and included the description in the alt text (which has a greater character limit)

    Four panel comic strip by Jen Sorensen: 1: "Many white Americans fail to assimilate. Some self-segregate in homogenous neighborhoods" Houses in gated community with the sign "Caucasian Pointe - No trespassing." 2. "Others fly the flag of a foreign country" A large truck drives by, flying the confederate battle flag and playing the song "Free Bird" loudly (which is labeled "traditional folk music") 3. "Many refuse to speak contemporary English" An angry looking white woman says, "Seems like the Homos and Orientals are everywhere!" 4. "Will these stubborn holdouts ever integrate into our multiracial society?" A white man wears a red MAGA hat and a Trump t-shirt. A brown skinned person points toward him and says, "It might help if they stopped wearing those funny hats."
    ALT
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    • + DemocracyMattersALot
    tomkindlon , to MECFS group
    @tomkindlon@disabled.social avatar

    BMJ e-letter:
    "Why I’d rather have a well-researched and well-informed doctor"

    Free:
    https://www.bmj.com/content/376/bmj.n3102/rr-0

    "the NHS simply does not offer any kind of useful care" for ME and []


    @mecfs
    @longcovid

    How can you help me integrate my long covid care? BMJ 2022; 376 doi: https://doi.org/10.1136/bmj.n3102 (Published 27 January 2022) Cite this as: BMJ 2022;376:n3102 Article Related content Article metrics Rapid responses Response Rapid Response: Why I’d rather have a well-researched and well-informed doctor Dear Editor, I developed Long Covid in March 2020. Four years later I still haven’t fully recovered. These days I am more functional, but still limited in how much exertion I can manage before triggering a relapse. Two years ago, just as my condition started to improve, my husband developed Long Covid as well. He deteriorated rapidly, to the point that he is now reliant on full-time care. We have both been diagnosed with ME as a result of Long Covid. There is much I can relate to in Carl Jreidini’s account. Like him, I have spent countless hours reading research papers and online support groups about Long Covid and ME to find solutions for our chronic, debilitating symptoms. But my question is this: why should patients like us, suffering from an energy-limiting condition, need to become our own physicians to access relevant and evidence-based care? 02 June 2024 Karen L Hargrave Freelance researcher and policy analyst UK @karenlhargrave
    ALT
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    • ahimsa_pdx ,
    @ahimsa_pdx@disabled.social avatar

    @tomkindlon

    Thanks for the link, Tom. We definitely need more doctor education!

    Anyone reading this can share the Mayo ME/CFS CME (continuing medical education) with their doctor(s):

    https://millionsmissing.meaction.net/treatme/

    Half of Long Covid patients meet ME/CFS diagnosis.

    The link above is for folks in the USA, but also did outreach in May in some other countries:

    https://www.meaction.net/2024/05/17/teachmetreatme-celebrating-an-impactful-campaign/

    @mecfs @longcovid

    ahimsa_pdx ,
    @ahimsa_pdx@disabled.social avatar

    Short quote from the letter linked in Tom's post:

    "I have sat through countless GP appointments where I have had to explain the basics of Post Exertional Malaise [PEM], the cardinal symptom of ME, before going on to discuss treatment."

    I've had similar doctor visits.

    It's frightening that so many doctors know so little about ME/CFS.

    @mecfs @longcovid

    tomkindlon , to longcovid group
    @tomkindlon@disabled.social avatar

    autonomic syndrome in working age & work ability impairment

    https://www.nature.com/articles/s41598-024-61455-y

    “1/3 working-age people developed a new autonomic syndrome that was still evident 6 months after the acute infection resolution” (hospitalised cohort)

    @longcovid

    @covid19 @novid @auscovid19

    1/

    ahimsa_pdx ,
    @ahimsa_pdx@disabled.social avatar

    @tomkindlon

    Interesting, thanks!

    This part caught my eye:

    "Interestingly, several symptoms characterizing Long-COVID19 mirror the Postural Orthostatic Tachycardia Syndrome [POTS] that represents the most common form of dysautonomia causing orthostatic intolerance …

    The autonomic symptoms reported after SARS-CoV-2 infection are often underestimated by patients and unrecognized by treating physicians."

    (emphasis added)

    @longcovid

    #COVID #LongCovid #PostCovid #Dysautonomia #POTS

    futurebird , to random
    @futurebird@sauropods.win avatar

    Someone in my building is BLASTING "New York New York"

    Which is traditionally done after yankee games if they win in our building.

    LOL.

    ahimsa_pdx ,
    @ahimsa_pdx@disabled.social avatar

    @futurebird

    Love it! ❤️ Here are some new lyrics:

    🎵 Trump was convicted there
    Let's do that everywhere!
    And so, thank you,
    New York, New York! 🎵

    #USPol #Trump #Verdict

    futurebird , to random
    @futurebird@sauropods.win avatar

    Are you living in your home or apartment, living your own life...

    OR

    ...do you run a bed and breakfast for your cat?

    ahimsa_pdx ,
    @ahimsa_pdx@disabled.social avatar

    @futurebird
    I remember being the staff of my cat B&B as well as the furniture! 😁
    (she was a lap cat)

    JimsPhotos , to random
    @JimsPhotos@ohai.social avatar

    JOIN IN friends of the birds:

    THREAD: A to Z of birds.

    The idea is to create a thread of birds starting with A and ending with Z (if we get that far).

    Rules:

    1. Common names not Latin names
    2. Flexibility with common names (i.e.. American Robin (A) or (R)
    3. IMPORTANT: You can post the same letter bird or the next letter forward but not backward.

    Don’t know if this will work. Will pin and boost photos. (Only photographs please of any quality)

    use tag #AtoZofBIRDS

    #BirdPhotography

    ahimsa_pdx ,
    @ahimsa_pdx@disabled.social avatar

    @JimsPhotos
    C is for Cedar Waxwing 😁

    From our backyard (not a great photo - my husband has taken a lot better photos - but not too bad)

    #AtoZofBIRDS #Birds #Birding

    ElleGray , to random
    @ElleGray@mstdn.social avatar

    this morning I was out-poetried by a sidewalk that had thoughts on pain, impermanence, resilience and beauty

    ahimsa_pdx ,
    @ahimsa_pdx@disabled.social avatar

    @ElleGray Nice alt text, tagging @alttexthalloffame 😁

    GottaLaff , to random
    @GottaLaff@mastodon.social avatar

    👀👀Via Kyle Griffin:

    The Supreme Court has declined to hear a Republican-backed challenge that sought to end mail-in voting in #Oregon. #SCOTUS
    https://oregoncapitalchronicle.com/2024/05/20/u-s-supreme-court-wont-hear-oregon-lawsuit-that-sought-to-end-mail-voting/

    ahimsa_pdx ,
    @ahimsa_pdx@disabled.social avatar

    @GottaLaff
    Good news! I l love Oregon's #VoteByMail system ❤️

    Attached is a good quote from the story:

    “Both the rulings from the District Court and the Ninth Circuit got it right: Oregon’s vote by mail system is the gold standard with no widespread voter fraud to speak of,” she said. “I’m very pleased to see the Supreme Court leave the lower courts’ ruling in place.”
    ALT
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