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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    • tomkindlon OP ,
    @tomkindlon@disabled.social avatar

    2/

    They gave blood and saliva samples at home or at a nearby lab.

    “The Pax LC trial is a historic contribution to the evolution of a new way of doing trials”

    "Traveling to each participant’s home would seem to be a pricey endeavor. But given its greater efficiency, the design of the PAX LC Trial has actually cut down on costs", Krumholz argues.

    Comment: The same issues arise with ME/CFS. I see Jarred Younger is doing one or more trials remotely

    @longcovid @mecfs @chronicillness @spoonies

    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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    • GoodNewsGreyShoes ,
    @GoodNewsGreyShoes@mastodon.art avatar

    @tomkindlon @chronicillness @spoonies @disability @longcovid @mecfs My partner is an ambulatory wheelchair user with M.E. ♿

    Can confirm, some people are assholes & will give you dirty looks if they see you standing up to get out of/into a wheelchair.🙄

    Rheall ,
    @Rheall@comicscamp.club avatar

    @tomkindlon @chronicillness @spoonies @disability @longcovid @mecfs

    Thinking of hanging a sign on my transport chair that says "It's a fatigue thing, not a stability thing"

    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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    • PurpleShadow ,
    @PurpleShadow@eldritch.cafe avatar

    @tomkindlon @chronicillness @spoonies @mecfs @longcovid @fibromyalgia one that happened to me:

    • The doctor makes up symptoms you don't have.
    imstilljeremy ,
    @imstilljeremy@babka.social avatar

    @PurpleShadow @tomkindlon @chronicillness @spoonies @mecfs @longcovid @fibromyalgia

    I wrote a sort of poem about this a bit ago

    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

    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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