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

Reminder - this online survey on pacing closes on June 23:

https://surveys.mayoclinic.org/jfe/form/SV_2auWxMckjo7s04u

For more details see my earlier thread:

https://disabled.social/@ahimsa_pdx/112498118628999091

@longcovid @mecfs

This is a research project conducted through a collaboration between Mayo Clinic and #MEAction evaluating experience with activity management in people who have the conditions of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) or Long COVID and experience post-exertional malaise. If you have this/these condition(s) and are age 18 or older, you are invited to participate [in] this online research study on an activity management strategy called pacing. This section provides a brief summary of the study. If you agree to participate you will be asked to complete web-based, online survey asking about your experience with pacing as related to your condition. The survey is based on the time that you wish to spend completing additional questions, and so it is estimated that total time of completion may range from 20 to 90 minutes depending on your interest. You are able to exit and re-enter the survey as needed.
ALT
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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

    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

    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

    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

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