stuffjolikes , to random
@stuffjolikes@climatejustice.social avatar

Feel like a proud relative.. new podcast on launched by a good friend and colleague Pat Porter - in this first episode she talks with Tash Willmore and her experiences of living with - more soon to come on other topics like and much more https://open.spotify.com/episode/5fSVc7TSEU3T5ACOTxRsGf?si=tGAOQ6bKTa-PwnrXd2-DGw

tomkindlon , to AusCOVID19 group
@tomkindlon@disabled.social avatar

Australia:

If you’re living with ME/CFS, Long COVID or want to volunteer as a ‘healthy control’ for medical research studies, signing up and becoming an AusME Registry participant is the single easiest way to become involved in research! Learn more today

https://vist.ly/3b4pb


@mecfs @longcovid @auscovid19

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

🧵

"A New Kind of Clinical Trial: Bringing Long COVID Research Into Patients’ Homes"

https://medicine.yale.edu/news-article/a-new-kind-of-clinical-trial-bringing-long-covid-research-into-patients-homes/

Participants received the drug or placebo in their mailboxes and filled out electronic diaries.

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A New Kind of Clinical Trial: Bringing Long COVID Research Into Patients’ Homes June 14, 2024 by Isabella Backman Health limitations, distance, work schedules, family obligations, and financial constraints are all barriers that prevent patients from participating in clinical trials. For those living with Long COVID, debilitating symptoms can make traveling to a study site impossible.
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    • IrishMECFSAssociation , to ChronicIllness group
    @IrishMECFSAssociation@mastodon.ie avatar

    Dr Nigel Speight recommended this TED talk by Abraham Verghese MD, "A doctor's touch" during his recent tour of Ireland is that we organised

    https://www.ted.com/talks/abraham_verghese_a_doctor_s_touch

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    A doctor's touch 2,088,322 views | Abraham Verghese | TEDGlobal 2011 • July 2011 Read transcript Modern medicine is in danger of losing a powerful, old-fashioned tool: human touch. Physician and writer Abraham Verghese describes our strange new world where patients are merely data points, and calls for a return to the traditional one-on-one physical exam.
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    • tomkindlon , to ChronicIllness group
    @tomkindlon@disabled.social avatar

    From ABC (Australia)

    "Not everyone who uses a wheelchair is paralysed. This is what ambulatory users want you to know"

    https://www.abc.net.au/news/2024-06-18/ambulatory-wheelchair-mobility-aid-users/103937484

    One of the people interviewed has ME/CFS

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    Not everyone who uses a wheelchair is paralysed. This is what ambulatory users want you to know By the Specialist Reporting Team's Evan Young Posted 18h ago18 hours ago, updated 12h ago12 hours ago A white woman with long blonde hair sitting in a wheelchair in a lounge room Shae Mankey would like to see more awareness about ambulatory wheelchair users.(ABC News: Patrick Stone)
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    • tomkindlon OP ,
    @tomkindlon@disabled.social avatar

    From ABC (Australia)

    "Not everyone who uses a wheelchair is paralysed. This is what ambulatory users want you to know"

    https://www.abc.net.au/news/2024-06-18/ambulatory-wheelchair-mobility-aid-users/103937484

    Here's the extract where the person with ME/CFS talks about her experiences

    Hashtags:
    @chronicillness @spoonies @disability @longcovid @mecfs





    "It's a similar story for Kate Pern, an ambulatory wheelchair user who lives with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), a debilitating multi-system illness that gets worse the more you try to push through it. Many ambulatory wheelchair users, such as Kate, have dynamic disabilities, which means their ability to be active can be different day-to-day. Kate is 'predominantly housebound' and uses her non-powered chair in situations where a friend can help push her along. The 36-year-old said being able to remain seated while out of the house prevented her from overexerting herself and ending up 'even more disabled'. Essentially, it's given her parts of her life back." "Many ambulatory wheelchair users report being judged, stigmatised or accused of faking their disabilities to cheat their way into support. Shae said she was regularly accosted at accessible car parks when standing up from her wheelchair to transfer into the car driver's seat. She's been grunted and stared at, had her car window knocked on aggressively, and been told to leave accessible parking spots 'for those who really needed it.' 'People often assume that someone who can walk should always walk,' Shae said. Prejudice around who 'should' and 'shouldn't' use a wheelchair often leads to many ambulatory users to develop impostor syndrome." "But then someone said to me, 'do you know what? People who don't need wheelchairs don't fantasise about using one'."
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    • tomkindlon , to MECFS group
    @tomkindlon@disabled.social avatar

    What Are the Signs of 'Medical Gaslighting"?


    @chronicillness
    @spoonies @mecfs @longcovid
    @fibromyalgia

    What Are the Signs of 'Medical Gaslighting"? - Your provider continually interrupts you, won't let you elaborate and doesn't seem to be an engaged listener. - The provider minimizes or downplays symptoms, like questioning whether you have pain, or refuses to discuss your symptoms. - The provider won't order imaging or lab work to rule out or confirm a diagnosis. - You feel that the provider is rude, condescending or belittling. - Your symptoms are blamed on mental illness, but you are neither given a mental health referral nor screened for such illness.
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    • jeffowski , (edited ) to random
    @jeffowski@mastodon.world avatar
    ChrisCPS ,
    @ChrisCPS@mstdn.social avatar

    @jeffowski people can relate

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