@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.

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

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

    Here's the News in Brief summary from the Science for ME forum, for week starting June 3:

    https://www.s4me.info/threads/news-in-brief-june-2024.38870/#post-537120/

    This summary includes news articles, videos, research, advocacy, coming events, and more.
    @mecfs @longcovid

    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.

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  • 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)

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  • 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

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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

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

    From The Sick Times:

    " ‘They bungled it:’ NIH documents reveal how $1.6 billion Long Covid initiative has failed so far to meet its goals "

    https://thesicktimes.org/2024/05/31/they-bungled-it-nih-documents-reveal-how-1-6-billion-long-covid-initiative-has-failed-so-far-to-meet-its-goals/

    This is a long article, an in-depth analysis of the NIH RECOVER research project.

    There's a lot of data to absorb. I have not read the whole thing myself yet.

    @longcovid @mecfs

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  • 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

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

    "COVID can cause new health problems to appear years after infection, according to a study of more than 130,000 patients"

    https://fortune.com/well/article/covid-cause-new-health-problems-years-after-infection/

    "With more than 130,000 patients, the study is by far the largest so far to track the progress of the virus over a full three-year period."

    @longcovid @mecfs

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  • 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)

    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:

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  • 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

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

    How ME/CFS shrinks your world, bit by bit

    art by Kornelia Paulsen

    @mecfs

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  • dillyd , to random
    @dillyd@allies.social avatar

    Lake Crescent (Washington, US) on a rare sunny day. This is a panoramic shot - you may have to click or tap to see the whole image

    ahimsa_pdx ,
    @ahimsa_pdx@disabled.social avatar

    @dillyd Lovely colors in the water!

    loren , to random
    @loren@flipping.rocks avatar

    happy wrensday, hope you and this wren find what you're looking for!

    ahimsa_pdx ,
    @ahimsa_pdx@disabled.social avatar

    @loren
    Happy Wrensday to you! 😁

    They're so loud for their size!

    I heard a wren while walking in the park a couple weeks ago and discovered - by using the Merlin app to identify the bird's song - that Winter Wrens are now called Pacific Wrens in this area.

    https://www.allaboutbirds.org/guide/Pacific_Wren/sounds

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

    "A New Birding Club Wants to Help COVID Long-Haulers Safely Enjoy Nature Together"

    https://www.audubon.org/magazine/new-birding-club-wants-help-covid-long-haulers-safely-enjoy-nature-together

    "Ed Yong, an award-winning science journalist who widely covered the pandemic, recently launched The Spoonbill Club to provide community—and an accessible hobby—for folks with long COVID."

    @longcovid

    #Birds #Birding #Nature #LongCovid #MEcfs #ChronicIllness #Spoonies

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    nervous_jesse , to random
    @nervous_jesse@mathstodon.xyz avatar

    Me to my toddler: Why do you collect so many rocks?

    Her: Because so many are good

    Me: Fair enough

    ahimsa_pdx ,
    @ahimsa_pdx@disabled.social avatar

    @nervous_jesse Hey @loren - thought you'd enjoy this 😁

    loren , to random
    @loren@flipping.rocks avatar

    more frog poems!

    ahimsa_pdx ,
    @ahimsa_pdx@disabled.social avatar

    @loren

    Assault, by Edna St. Vincent Millay

    https://poets.org/poem/assault

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  • loren , to random
    @loren@flipping.rocks avatar

    nuthatch knows what you did

    ahimsa_pdx ,
    @ahimsa_pdx@disabled.social avatar

    @loren Wow - fabulous photo!

    I know it's just the way they hold their heads but these birds always look ready to fight.

    ahimsa_pdx ,
    @ahimsa_pdx@disabled.social avatar

    @loren We have both red breasted and white breasted nuthatches in our backyard.

    I have no idea whether those names need hyphens but not gonna look it up!

    loren , to random
    @loren@flipping.rocks avatar

    you're a trogon

    ahimsa_pdx ,
    @ahimsa_pdx@disabled.social avatar

    @loren
    Hoist with my own pochard!

    Wait a minute, I don't think that's quite right 😉

    ElleGray , (edited ) to random
    @ElleGray@mstdn.social avatar

    I'll know we're winning when everyone has stopped saying "AI tech is inevitable," like it's an angry God we're powerless to stop, and starts making fun of it. It deserves no diffidence, no respect, no fear. This is the way

    ahimsa_pdx ,
    @ahimsa_pdx@disabled.social avatar

    @ElleGray I've seen this before but it's worth boosting again! 😁

    alice , to random
    @alice@lgbtqia.space avatar

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

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  • ahimsa_pdx ,
    @ahimsa_pdx@disabled.social avatar

    @alice The Hillsboro (Oregon) library has a robot dog available.

    I haven't seen it in person but I saw it in this video 😁

    https://www.youtube.com/watch?v=jqO5-T0WchA

    ahimsa_pdx , to random
    @ahimsa_pdx@disabled.social avatar

    When I forget what I'm doing (which is often, especially when switching windows or tabs for cutting/pasting!) I go to a blank text file and just paste whatever is in the clipboard.

    It doesn't always work but every once in a while it gives me a clue about what I was trying to do.

    GottaLaff , to random
    @GottaLaff@mastodon.social avatar

    Victory!

    Via democracydocket

    BREAKING: #Washington State agrees to end its durational residency requirement for voter registration. A civil rights group filed lawsuit arguing that the law disenfranchised voters who move to Washington shortly before an election and violated the VRA.

    ahimsa_pdx ,
    @ahimsa_pdx@disabled.social avatar

    @GottaLaff Excellent!

    GottaLaff , to random
    @GottaLaff@mastodon.social avatar
    ahimsa_pdx ,
    @ahimsa_pdx@disabled.social avatar

    @GottaLaff Wow! 😳

    I need to watch this about 20 more times!

    GottaLaff , to random
    @GottaLaff@mastodon.social avatar

    It never does, Angry.

    Via Angry Staffer:

    Make it make sense

    Rick Lenzie:

    Republicans are actively investigating Joe while claiming the president has total immunity.

    ahimsa_pdx ,
    @ahimsa_pdx@disabled.social avatar

    @GottaLaff Some animals are more equal than others …

    futurebird , to random
    @futurebird@sauropods.win avatar

    A “children’s book” about a cop who points his gun at everything because that’s the only thing he knows how to do.

    “Hello” said the hungry caterpillar. The police man pointed his gun at the caterpillar. The caterpillar squeaked and ran away. “I guess he won’t be my friend either” said the policeman sadly. He holstered his gun and walked further down the road still feeling so very alone.

    ahimsa_pdx ,
    @ahimsa_pdx@disabled.social avatar

    @futurebird The cop also yells a bunch of racial slurs at the caterpillar as it runs away …

    GottaLaff , (edited ) to random
    @GottaLaff@mastodon.social avatar

    ⚠️ Via @atrupar:

    the loud part is getting louder

    Republican Accountability:

    Jack Posobiec at CPAC: “Welcome to the end of democracy. We are here to overthrow it completely. We didn’t get all the way there on Jan. 6, but we will endeavor to get rid of it.”

    UPDATE, VIDEO:

    https://indieweb.social/@stephenjbell/111977391928939182

    ahimsa_pdx ,
    @ahimsa_pdx@disabled.social avatar
    ahimsa_pdx ,
    @ahimsa_pdx@disabled.social avatar

    @kevin

    OMG 😬

    Thanks for the extra context
    @GottaLaff

    ahimsa_pdx ,
    @ahimsa_pdx@disabled.social avatar

    @GottaLaff Thanks!

    GottaLaff , to random
    @GottaLaff@mastodon.social avatar

    I'm getting offline early today.

    I loved today's good news, all of it. I love it openly and freely. I'm more than aware of any possible negatives and simply don't care at the moment.

    There's plenty of time for that tomorrow, but today was a good day. Try enjoying it, you'd be amazed at how reinvigorating it can be.

    If news breaks, I'll post it.

    Time to concentrate on the good news THAT I SHALL ENJOY, despite Debbie Downers.

    Cheers.

    ahimsa_pdx ,
    @ahimsa_pdx@disabled.social avatar

    @GottaLaff Thank you ❤️

    I'm happy that I got the news from you first!

    sarahtaber , to random
    @sarahtaber@mastodon.online avatar

    Are you guys ready for the buck-wildest agriculture story I've ever heard

    ahimsa_pdx ,
    @ahimsa_pdx@disabled.social avatar

    @sarahtaber Thanks for sharing that story!

    In the alt text for one of the images it says, "Screenshot from the article linked above." But I didn't see a link in any of the posts.

    I think this story is the source of the quotes, just for anyone else who is curious:

    https://www.cowboysindians.com/2018/03/the-ranch-at-the-edge-of-the-west/

    ahimsa_pdx ,
    @ahimsa_pdx@disabled.social avatar

    @chgowiz This article does not talk about the orcas. I'm not sure that there is a news story with that info. As the original poster said,

    "The article doesn't mention the orcas. I got that info from a colleague involved in attempts to acquire the ranch."

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

    Opinion piece by Sen. Bernie Sanders, USA Today:

    "U.S. is turning its back on long COVID. We'll pay the price if we don't act."

    "There is a hidden public health crisis in America that we can no longer ignore. And that is the crisis of long COVID-19
    … about 16 million people throughout our country have long COVID-19. It affects people of all ages and from all backgrounds. And we don’t know why."

    https://www.usatoday.com/story/opinion/voices/2024/01/26/long-covid-paxlovid-costs-plaguing-american-healthcare/72337750007/

    @longcovid

    #USPol #USA #COVID #LongCovid #PostCovid #PublicHealth

    luckytran , to random
    @luckytran@med-mastodon.com avatar

    There's a Senate hearing on Long COVID today. Notice that Long COVID advocates are all wearing high quality masks? That's because they understand we are in a surge and each reinfection increases the risk of developing Long COVID.

    Watch the Senate hearing on Long COVID here: https://www.help.senate.gov/hearings/addressing-long-covid-advancing-research-and-improving-patient-care

    ahimsa_pdx ,
    @ahimsa_pdx@disabled.social avatar

    @luckytran
    Thanks for the reminder!

    I tuned in and was happy to hear Dr. Harkins talking about post-exertional malaise and Dr. Al-ly talking about post viral ME/CFS. Both of these have been very low priority for so many years, not even taught in med school. ME/CFS has been ignored by all but a few dedicated researchers.

    But it's much harder to ignore these things now that the pandemic has triggered so many new cases of disabling chronic illness!

    #LongCovid #MEcfs #PEM #ChronicIllness

    rbreich , to random
    @rbreich@masto.ai avatar

    Nikki Haley:

    -Said Florida’s Don’t Say Gay bill “doesn’t go far enough”

    -Would sign a federal abortion ban

    -Pledged not to "expand Medicaid ever”

    -Proudly called herself a “union-buster”

    Don't let anyone fool you into thinking she’s some moderate alternative to Trump.

    ahimsa_pdx ,
    @ahimsa_pdx@disabled.social avatar

    @rbreich She also said she'd pardon Trump.

    ahimsa_pdx , to random
    @ahimsa_pdx@disabled.social avatar

    From the NIH, in case you missed it:

    "Home Test to Treat program extends nationwide

    Program now offers testing, telehealth and treatment for COVID-19 and flu"

    Note: Covers both Covid and flu

    ➡️ FREE for any adult with a positive test

    NIH press release:
    https://www.nih.gov/news-events/news-releases/home-test-treat-program-extends-nationwide

    Test to Treat:
    https://www.test2treat.org/s/?language=en_US

    ALT
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