home.social

#longlyme — Public Fediverse posts

Live and recent posts from across the Fediverse tagged #longlyme, aggregated by home.social.

  1. Weer een voorstel vanuit de Tweede Kamer om post-acuut infectieuze syndromen aan te pakken. Ingediend bij de VWS begroting 2027.

    Nog steeds druppels op de gloeiende plaat en met 1 jaar horizon, maar iets is beter dan niets.

    #longCovid #MEcvs #Qkoorts #LongLyme
    @longcovid @mecfs

  2. Weer een voorstel vanuit de Tweede Kamer om post-acuut infectieuze syndromen aan te pakken. Ingediend bij de VWS begroting 2027.

    Nog steeds druppels op de gloeiende plaat en met 1 jaar horizon, maar iets is beter dan niets.

    #longCovid #MEcvs #Qkoorts #LongLyme
    @longcovid @mecfs

  3. Weer een voorstel vanuit de Tweede Kamer om post-acuut infectieuze syndromen aan te pakken. Ingediend bij de VWS begroting 2027.

    Nog steeds druppels op de gloeiende plaat en met 1 jaar horizon, maar iets is beter dan niets.

    #longCovid #MEcvs #Qkoorts #LongLyme
    @longcovid @mecfs

  4. Weer een voorstel vanuit de Tweede Kamer om post-acuut infectieuze syndromen aan te pakken. Ingediend bij de VWS begroting 2027.

    Nog steeds druppels op de gloeiende plaat en met 1 jaar horizon, maar iets is beter dan niets.

    #longCovid #MEcvs #Qkoorts #LongLyme
    @longcovid @mecfs

  5. Weer een voorstel vanuit de Tweede Kamer om post-acuut infectieuze syndromen aan te pakken. Ingediend bij de VWS begroting 2027.

    Nog steeds druppels op de gloeiende plaat en met 1 jaar horizon, maar iets is beter dan niets.

    #longCovid #MEcvs #Qkoorts #LongLyme
    @longcovid @mecfs

  6. Hoort zegt het voort...
    Protestactie om een heel grote groep chronisch zieke mensen te ondersteunen.

    #LongCovid #MEcvs #QVS #LongLyme #chronischZiek

    @longcovid @LongcovidNieuws @mecfs

  7. Hoort zegt het voort...
    Protestactie om een heel grote groep chronisch zieke mensen te ondersteunen.

    #LongCovid #MEcvs #QVS #LongLyme #chronischZiek

    @longcovid @LongcovidNieuws @mecfs

  8. Hoort zegt het voort...
    Protestactie om een heel grote groep chronisch zieke mensen te ondersteunen.

    #LongCovid #MEcvs #QVS #LongLyme #chronischZiek

    @longcovid @LongcovidNieuws @mecfs

  9. Hoort zegt het voort...
    Protestactie om een heel grote groep chronisch zieke mensen te ondersteunen.

    #LongCovid #MEcvs #QVS #LongLyme #chronischZiek

    @longcovid @LongcovidNieuws @mecfs

  10. Hoort zegt het voort...
    Protestactie om een heel grote groep chronisch zieke mensen te ondersteunen.

    #LongCovid #MEcvs #QVS #LongLyme #chronischZiek

    @longcovid @LongcovidNieuws @mecfs

  11. Sliding further down into PEM today 🫨

    P.s. If you're on Instagram, I recommend me_in_a_comic (fennine) who makes great cartoons showing chronic illness life.
    When a picture says more than a thousand words...
    #LongCovid #pwME #longlyme #QVS #SEID

  12. Sliding further down into PEM today 🫨

    P.s. If you're on Instagram, I recommend me_in_a_comic (fennine) who makes great cartoons showing chronic illness life.
    When a picture says more than a thousand words...
    #LongCovid #pwME #longlyme #QVS #SEID

  13. From the Massachusetts #MECFS & FM Association e-newsletter:
    (#Boston, #Massachusetts)

    MIT MAESTRO study of Long Covid and Post Lyme Recruiting Participants including healthy controls

    Links in image
    talresearchgroup.mit.edu/mitma
    intake.mit.edu/surveys/?s=WLPF

    #longCOVID #Lyme #ChronicLyme #LongLyme #PTLDS #PwLC

  14. From the Massachusetts #MECFS & FM Association e-newsletter:
    (#Boston, #Massachusetts)

    MIT MAESTRO study of Long Covid and Post Lyme Recruiting Participants including healthy controls

    Links in image
    talresearchgroup.mit.edu/mitma
    intake.mit.edu/surveys/?s=WLPF

    #longCOVID #Lyme #ChronicLyme #LongLyme #PTLDS #PwLC

  15. From the Massachusetts #MECFS & FM Association e-newsletter:
    (#Boston, #Massachusetts)

    MIT MAESTRO study of Long Covid and Post Lyme Recruiting Participants including healthy controls

    Links in image
    talresearchgroup.mit.edu/mitma
    intake.mit.edu/surveys/?s=WLPF

    #longCOVID #Lyme #ChronicLyme #LongLyme #PTLDS #PwLC

  16. From the Massachusetts #MECFS & FM Association e-newsletter:
    (#Boston, #Massachusetts)

    MIT MAESTRO study of Long Covid and Post Lyme Recruiting Participants including healthy controls

    Links in image
    talresearchgroup.mit.edu/mitma
    intake.mit.edu/surveys/?s=WLPF

    #longCOVID #Lyme #ChronicLyme #LongLyme #PTLDS #PwLC

  17. From the Massachusetts #MECFS & FM Association e-newsletter:
    (#Boston, #Massachusetts)

    MIT MAESTRO study of Long Covid and Post Lyme Recruiting Participants including healthy controls

    Links in image
    talresearchgroup.mit.edu/mitma
    intake.mit.edu/surveys/?s=WLPF

    #longCOVID #Lyme #ChronicLyme #LongLyme #PTLDS #PwLC

  18. 3/fin
    This study by @maayanLevy_lab is a marvel of dozens of avenues of science that all point to a greater understanding of the realities of #LongCOVID as a chronic disease state.

    Through work like this, we legitimize not only LC, but also #MECFS #LongLyme etc & take one step closer to finding medical solutions for past & future post-infectious states + syndromes like #PICS

    bit.ly/3Fjx3Jp

  19. 3/fin
    This study by @maayanLevy_lab is a marvel of dozens of avenues of science that all point to a greater understanding of the realities of #LongCOVID as a chronic disease state.

    Through work like this, we legitimize not only LC, but also #MECFS #LongLyme etc & take one step closer to finding medical solutions for past & future post-infectious states + syndromes like #PICS

    bit.ly/3Fjx3Jp

  20. The PolyBio Fall 2023 Symposium is scheduled for October 20, 1 to 5 pm, EST

    A speaker list, with links to their projects, has been posted on the Science for ME forum:

    s4me.info/threads/polybio-fall

    PolyBio is "a 501(c)3 transforming how infection-associated chronic conditions like LongCovid, ME/CFS & Long Lyme Disease are studied, diagnosed and treated"

    Description from their website -
    polybio.org/

    @mecfs
    @longcovid

    #LongCovid #PASC #MEcfs #LongLyme #ChronicIllness
    #MedMastodon

  21. The PolyBio Fall 2023 Symposium is scheduled for October 20, 1 to 5 pm, EST

    A speaker list, with links to their projects, has been posted on the Science for ME forum:

    s4me.info/threads/polybio-fall

    PolyBio is "a 501(c)3 transforming how infection-associated chronic conditions like LongCovid, ME/CFS & Long Lyme Disease are studied, diagnosed and treated"

    Description from their website -
    polybio.org/

    @mecfs
    @longcovid

    #LongCovid #PASC #MEcfs #LongLyme #ChronicIllness
    #MedMastodon

  22. Yale School of Medicine Post-Acute Infection Syndromes Will Be the Focus of New YSM Center

    tinyurl.com/5d38ua2r

    On the newly launched Center for Infection & Immunity (CII) at Yale created by Akiko Iwasaki, PhD, which will investigate ME together with #LongCOVID and #posttreatmentLymedisease

    @mecfs #MEcfs #CFS #MyalgicE #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome @longcovid
    #LongCovid #PwLC #PostCovidSyndrome #LC #postcovid #longlyme #lyme

    1/

  23. Yale School of Medicine Post-Acute Infection Syndromes Will Be the Focus of New YSM Center

    tinyurl.com/5d38ua2r

    On the newly launched Center for Infection & Immunity (CII) at Yale created by Akiko Iwasaki, PhD, which will investigate ME together with #LongCOVID and #posttreatmentLymedisease

    @mecfs #MEcfs #CFS #MyalgicE #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome @longcovid
    #LongCovid #PwLC #PostCovidSyndrome #LC #postcovid #longlyme #lyme

    1/

  24. A new way of thinking about persistent infections, such as long COVID and chronic Lyme disease

    “Infection-associated chronic illness” sounds like a mouthful.

    But using that name has sparked a paradigm shift in how researchers and others view ailments that can keep people sick for years—with few or no options for getting better.

    READ MORE: lymedisease.org/new-way-of-thi
    #longcovid #longlyme #chronicillness #chronicfatigue #chronicdisease #mecfs #ms #pots #dysautonomia

  25. This is what hope looks like ♥️ h/t @microbeminded2 and all the teams involved

    #pwME #pwLC #LongCOVID #LongLyme #SARSCoV2
    ---
    RT @polybioRF
    PolyBio is excited to be leading the LongCovid Research Consortium (LCRC): a global scientific collaboration to rapidly & comprehensively study #LongCovid disease mechanisms, with a focus on SARS-CoV-2 reservoir (polybio.org/longcovid). LCRC projects we are supporting include:
    twitter.com/polybioRF/status/1

  26. This is what hope looks like ♥️ h/t @microbeminded2 and all the teams involved

    #pwME #pwLC #LongCOVID #LongLyme #SARSCoV2
    ---
    RT @polybioRF
    PolyBio is excited to be leading the LongCovid Research Consortium (LCRC): a global scientific collaboration to rapidly & comprehensively study #LongCovid disease mechanisms, with a focus on SARS-CoV-2 reservoir (polybio.org/longcovid). LCRC projects we are supporting include:
    twitter.com/polybioRF/status/1

  27. Tired of the infighting.
    It is *NOT* a productive use of our collective limited energy and spoons.

    We will either rise together by demanding and inspiring revolutionary change or be left for dead as a lot.

    Listen to disabled people. Please. #pwME #pwLC #longCOVID #longLyme
    ---
    RT @ErinSandersNP
    @IppokratisAnge1 So ME/CFS is an umbrella that you may fall under if you have long COVID, but you may not. And either is ok. Because we a…
    twitter.com/ErinSandersNP/stat

  28. Tired of the infighting.
    It is *NOT* a productive use of our collective limited energy and spoons.

    We will either rise together by demanding and inspiring revolutionary change or be left for dead as a lot.

    Listen to disabled people. Please. #pwME #pwLC #longCOVID #longLyme
    ---
    RT @ErinSandersNP
    @IppokratisAnge1 So ME/CFS is an umbrella that you may fall under if you have long COVID, but you may not. And either is ok. Because we a…
    twitter.com/ErinSandersNP/stat

  29. 2/

    It looks like this study may still recruiting people from the US

    snyderlabs.stanford.edu/crashc

    Researchers are recruiting ME/CFS, #ChronicLyme and #LongCovid patients for a study to better understand symptom flares such as post-exertional malaise (PEM), or “crashes”.

    @longcovid #ptlds #longlyme #myalgicencephalomyelitis #ChronicFatigueSyndrome #mecfs #cfs #pwme

  30. We need “Forgotten Diseases” Clinics -

    Seriously I’ve been thinking about the massive Venn-diagram overlap of this group of diseases that have such an ill characterized set of definitions, diagnostic testing, therapeutic trials.

    Patients tell us…
    📍“We feel left behind by,” say 1,000s of Long COVID pts
    📍Sadly, #MECFS, #LongLyme, fibromyalgia & #PICS patients tell us they hoped to “ride the coattails” of #LongCOVID
    📍People say, “Get on w your life.”

    They say, “What life?”

  31. We need “Forgotten Diseases” Clinics -

    Seriously I’ve been thinking about the massive Venn-diagram overlap of this group of diseases that have such an ill characterized set of definitions, diagnostic testing, therapeutic trials.

    Patients tell us…
    📍“We feel left behind by,” say 1,000s of Long COVID pts
    📍Sadly, #MECFS, #LongLyme, fibromyalgia & #PICS patients tell us they hoped to “ride the coattails” of #LongCOVID
    📍People say, “Get on w your life.”

    They say, “What life?”