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Several discussions highlight the pivotal role of patients in identifying and naming Long Covid, with phrases like 'patients collectively made Long Covid’ and references to early advocacy efforts, showing the community's power in shaping medical narratives. Additionally, users express frustration at the initial neglect by health organizations and advocate for ongoing patient-led research, using a tone of urgency and importance, which underscores the perceived necessity for awareness and action in health policy.
The overwhelming sentiment in the discussions is one of strong agreement and validation regarding the publication's insights into how patients influenced the understanding of Long Covid.
There is a high level of interest, with many users expressing curiosity about the history and implications of Long Covid as discussed in the article.
The discussions reflect deep engagement, as many contributors reference specific studies, historical context, and the critical role of patient advocacy, suggesting a comprehensive understanding.
Users perceive the material's impact as significant, emphasizing its role in reshaping health discourse and policy surrounding Long Covid.
And yet, people phone-triaged and left at home, or people deemed to have "mild" disease, soon started to raise the alarm: we were seeing similar phenomena in those who were supposed to recover in "two weeks" and were not "old and frail" https://t.co/8jTXxAX8xK
Ik blijf het vreselijk vinden dat we in Nederland 'post covid' gebruiken terwijl internationale experts op verzoek van patiënten gewoon weer 'long covid' zijn gaan gebruiken. Vergeet niet dat het patiënten waren die de ziekte ontdekten. https://t.co/dvy9WAq6SU
https://t.co/8jTXxAX8xK
I and @felicitycallard recount the history of early #LongCovid advocacy, patient-led research, and activism in "How and Why Patients Made Long Covid" We submitted on 23 August 2020, only twp days after the @WHO openly recognized Long Covid https://t.co/8jTXxAX8xK
I hope patient-led expertise is centred in our fight against the long-term effects of SARS-CoV-2 infection. We asked for this already in 2020, but response from policy makers has been patchy, with the dramatic consequences we see today #LongCovid https://t.co/8jTXxBeJpi
In our peer-reviewed piece on the rise of #LongCovid as a term and advocacy movement, @felicitycallard and I describe Long Covid as a prolonged disease, that could originate from "mild" covid cases which were actually severe, even life threatening https://t.co/8jTXxAXGni
Kok bisa ya trauma masa kecil diwariskan ke anak cucu? Yes, bisa. Epigenetik menjelaskan bagaimana pengalaman traumatis orangtua dapat mempengaruhi generasi berikutnya. Dengan dukungan yang tepat, perubahan ini dapat…
In this video, I share my experience following the Pfizer vaccine and discuss long-term effects of COVID-19. I also provide statistical data from the AIFA's report on vaccine safety from December 2020 to March 2022…
@wodarg Long-COVID gab es bereits ab März/April 2020, eine der ersten Studien dazu wurde am 3.10.2020 eingereicht, die zweitgenannte Autorin ist hier auf X @elisaperego78 https://t.co/ze9tT6lDS9
Hier nog een mooi artikel erover door @elisaperego78 ‘How and why patients made Long Covid.’ https://t.co/uOfl2lVM0s
RT @elisaperego78: https://t.co/8jTXxAX8xK
RT @elisaperego78: https://t.co/8jTXxAX8xK
RT @elisaperego78: https://t.co/8jTXxAX8xK
RT @elisaperego78: https://t.co/8jTXxAX8xK
RT @elisaperego78: https://t.co/8jTXxAX8xK
https://t.co/8jTXxAX8xK
pubmed.ncbi.nlm.nih.gov/33199035/
RT @elisaperego78: @baldypidge @organicbotanic You can also be interested in this couple of early papers (2020) by myself and co-authors on…
@baldypidge @organicbotanic You can also be interested in this couple of early papers (2020) by myself and co-authors on the history and early evidence of #LongCovid https://t.co/fPUXv98q0e https://t.co/8jTXxAX8xK
RT @oscar_m: Uno de los artículos más importantes sobre #CovidPersistente #LongCovid. Se explica el impacto de la organización de las perso…
RT @oscar_m: Uno de los artículos más importantes sobre #CovidPersistente #LongCovid. Se explica el impacto de la organización de las perso…
RT @oscar_m: Uno de los artículos más importantes sobre #CovidPersistente #LongCovid. Se explica el impacto de la organización de las perso…
RT @oscar_m: Uno de los artículos más importantes sobre #CovidPersistente #LongCovid. Se explica el impacto de la organización de las perso…
RT @oscar_m: Uno de los artículos más importantes sobre #CovidPersistente #LongCovid. Se explica el impacto de la organización de las perso…
RT @oscar_m: Uno de los artículos más importantes sobre #CovidPersistente #LongCovid. Se explica el impacto de la organización de las perso…
RT @oscar_m: Uno de los artículos más importantes sobre #CovidPersistente #LongCovid. Se explica el impacto de la organización de las perso…
RT @oscar_m: Uno de los artículos más importantes sobre #CovidPersistente #LongCovid. Se explica el impacto de la organización de las perso…
RT @oscar_m: Uno de los artículos más importantes sobre #CovidPersistente #LongCovid. Se explica el impacto de la organización de las perso…
Uno de los artículos más importantes sobre #CovidPersistente #LongCovid. Se explica el impacto de la organización de las personas afectadas para configurar la enfermedad. How and why patients made Long Covid By Felicity Callard & @elisaperego78 https://t.co/eZbI2wU4Zu
RT @CaffeinatedTdlr: Patients collectively made Long Covid – and cognate term ‘Long-haul Covid’ – in the first months of the pandemic. Ho…
Patients collectively made Long Covid – and cognate term ‘Long-haul Covid’ – in the first months of the pandemic. How and why patients made Long Covid - PMC https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7539940/
Patients collectively made Long Covid – and cognate term ‘Long-haul Covid’ – in the first months of the pandemic. How and why patients made Long Covid - PMC https://t.co/wbDVCIKU3c
@elisaperego78 @tmprowell @NEJM Regarding refs, this was not an article where the journal allows deep references. There’s a strict limit on refs in the sounding boards, and so in many locations within this document we were unable to reference where I normally would. I ❤️ your ref: https://t.co/8XY7oHYx3l
RT @elisaperego78: If you want to know more about the history of #LongCovid as a disease entity and patient-driven advocacy and research mo…
If you want to know more about the history of #LongCovid as a disease entity and patient-driven advocacy and research movement before the talk, some bibliography (mostly scholarly, some from myself) "How and why patients made Long Covid" https://t.co/7seleOgbNb
Social Science & Medicine: How and why patients made Long Covid: ABSTRACT Patients collectively made Long Covid – and cognate term ‘Long-haul Covid’ – in the first months of the pandemic. Patients, many with initially ‘mild’ illness, used various kinds of evidence and advocacy to… #ThatCovidLife
RT @FvRhijn: Ik blijf het vreselijk vinden dat we in Nederland 'post covid' gebruiken terwijl internationale experts op verzoek van patiënt…
RT @FvRhijn: Ik blijf het vreselijk vinden dat we in Nederland 'post covid' gebruiken terwijl internationale experts op verzoek van patiënt…
RT @FvRhijn: Ik blijf het vreselijk vinden dat we in Nederland 'post covid' gebruiken terwijl internationale experts op verzoek van patiënt…
RT @FvRhijn: Ik blijf het vreselijk vinden dat we in Nederland 'post covid' gebruiken terwijl internationale experts op verzoek van patiënt…
RT @FvRhijn: Ik blijf het vreselijk vinden dat we in Nederland 'post covid' gebruiken terwijl internationale experts op verzoek van patiënt…
RT @FvRhijn: Ik blijf het vreselijk vinden dat we in Nederland 'post covid' gebruiken terwijl internationale experts op verzoek van patiënt…
RT @FvRhijn: Ik blijf het vreselijk vinden dat we in Nederland 'post covid' gebruiken terwijl internationale experts op verzoek van patiënt…
RT @FvRhijn: Ik blijf het vreselijk vinden dat we in Nederland 'post covid' gebruiken terwijl internationale experts op verzoek van patiënt…
RT @FvRhijn: Ik blijf het vreselijk vinden dat we in Nederland 'post covid' gebruiken terwijl internationale experts op verzoek van patiënt…
RT @FvRhijn: Ik blijf het vreselijk vinden dat we in Nederland 'post covid' gebruiken terwijl internationale experts op verzoek van patiënt…
RT @FvRhijn: Ik blijf het vreselijk vinden dat we in Nederland 'post covid' gebruiken terwijl internationale experts op verzoek van patiënt…
RT @FvRhijn: Ik blijf het vreselijk vinden dat we in Nederland 'post covid' gebruiken terwijl internationale experts op verzoek van patiënt…
RT @FvRhijn: Ik blijf het vreselijk vinden dat we in Nederland 'post covid' gebruiken terwijl internationale experts op verzoek van patiënt…
RT @FvRhijn: Ik blijf het vreselijk vinden dat we in Nederland 'post covid' gebruiken terwijl internationale experts op verzoek van patiënt…
RT @FvRhijn: Ik blijf het vreselijk vinden dat we in Nederland 'post covid' gebruiken terwijl internationale experts op verzoek van patiënt…
RT @FvRhijn: Ik blijf het vreselijk vinden dat we in Nederland 'post covid' gebruiken terwijl internationale experts op verzoek van patiënt…
RT @FvRhijn: Ik blijf het vreselijk vinden dat we in Nederland 'post covid' gebruiken terwijl internationale experts op verzoek van patiënt…
RT @FvRhijn: Ik blijf het vreselijk vinden dat we in Nederland 'post covid' gebruiken terwijl internationale experts op verzoek van patiënt…
RT @FvRhijn: Ik blijf het vreselijk vinden dat we in Nederland 'post covid' gebruiken terwijl internationale experts op verzoek van patiënt…
RT @FvRhijn: Ik blijf het vreselijk vinden dat we in Nederland 'post covid' gebruiken terwijl internationale experts op verzoek van patiënt…
RT @FvRhijn: Ik blijf het vreselijk vinden dat we in Nederland 'post covid' gebruiken terwijl internationale experts op verzoek van patiënt…
RT @FvRhijn: Ik blijf het vreselijk vinden dat we in Nederland 'post covid' gebruiken terwijl internationale experts op verzoek van patiënt…
RT @FvRhijn: Ik blijf het vreselijk vinden dat we in Nederland 'post covid' gebruiken terwijl internationale experts op verzoek van patiënt…
Ik blijf het vreselijk vinden dat we in Nederland 'post covid' gebruiken terwijl internationale experts op verzoek van patiënten gewoon weer 'long covid' zijn gaan gebruiken. Vergeet niet dat het patiënten waren die de ziekte ontdekten. https://t.co/dvy9WAq6SU
@bvcNbr1 @GraafDobber Klaarblijkelijk dit artikel niet gelezen: https://t.co/D7UpD7hmZS
@EdWozATC The global #LongCovid community is a great example of what can be accomplished via connecting on this app. It’s also how @LongCOVIDPhysio started. https://t.co/KAYGhk9yru
RT @elisaperego78: And yet, people phone-triaged and left at home, or people deemed to have "mild" disease, soon started to raise the alarm…
RT @elisaperego78: And yet, people phone-triaged and left at home, or people deemed to have "mild" disease, soon started to raise the alarm…
RT @elisaperego78: In our peer-reviewed piece on the rise of #LongCovid as a term and advocacy movement, @felicitycallard and I describe Lo…
In our peer-reviewed piece on the rise of #LongCovid as a term and advocacy movement, @felicitycallard and I describe Long Covid as a prolonged disease, that could originate from "mild" covid cases which were actually severe, even life threatening https://t.co/8jTXxAXGni
@VicJules69 @TheRubyKennedy ty. The ref for that is listed here: https://t.co/whrO8g7xlv they say "Patients, many with initially 'mild' illness, used various kinds of evidence and advocacy to demonstrate a longer, more complex course of illness.." so it may have been psychosomatic. Interesting though.
RT @elisaperego78: Health organisations failed to acknowledge, at the beginning of the pandemic, covid's reality. It was patients, many of…
Health organisations failed to acknowledge, at the beginning of the pandemic, covid's reality. It was patients, many of whom risked to die because of medical neglect, who identified, named and defined #LongCovid. This is in the peer-reviewed literature https://t.co/8jTXxAX8xK
@darrenabrown @JGLOBHEALTH @WHO Health organisations failed to acknowledge at the beginning of the pandemic the reality of covid. It was patients, some of whom risked to die because of this, who identified, named and defined #LongCovid. This is in the peer-reviewed literature https://t.co/8jTXxBeJpi
I hope patient-led expertise is centred in our fight against the long-term effects of SARS-CoV-2 infection. We asked for this already in 2020, but response from policy makers has been patchy, with the dramatic consequences we see today #LongCovid https://t.co/8jTXxBeJpi
RT @elisaperego78: And yet, people phone-triaged and left at home, or people deemed to have "mild" disease, soon started to raise the alarm…
RT @elisaperego78: And yet, people phone-triaged and left at home, or people deemed to have "mild" disease, soon started to raise the alarm…
RT @elisaperego78: And yet, people phone-triaged and left at home, or people deemed to have "mild" disease, soon started to raise the alarm…
RT @CatrinaCavalera: #LongCovid oder #PostCovid scheint die erste Krankheit zu sein, auf die man dank Twitter aufmerksam wurde. How and wh…
#LongCovid oder #PostCovid scheint die erste Krankheit zu sein, auf die man dank Twitter aufmerksam wurde. How and why patients made Long Covid https://t.co/IoZclkWLXz https://t.co/Xr82J9fVos
RT @elisaperego78: And yet, people phone-triaged and left at home, or people deemed to have "mild" disease, soon started to raise the alarm…
RT @elisaperego78: And yet, people phone-triaged and left at home, or people deemed to have "mild" disease, soon started to raise the alarm…
RT @elisaperego78: And yet, people phone-triaged and left at home, or people deemed to have "mild" disease, soon started to raise the alarm…
RT @elisaperego78: And yet, people phone-triaged and left at home, or people deemed to have "mild" disease, soon started to raise the alarm…
RT @elisaperego78: And yet, people phone-triaged and left at home, or people deemed to have "mild" disease, soon started to raise the alarm…
RT @elisaperego78: And yet, people phone-triaged and left at home, or people deemed to have "mild" disease, soon started to raise the alarm…
RT @elisaperego78: And yet, people phone-triaged and left at home, or people deemed to have "mild" disease, soon started to raise the alarm…
RT @elisaperego78: And yet, people phone-triaged and left at home, or people deemed to have "mild" disease, soon started to raise the alarm…
RT @elisaperego78: And yet, people phone-triaged and left at home, or people deemed to have "mild" disease, soon started to raise the alarm…
RT @elisaperego78: And yet, people phone-triaged and left at home, or people deemed to have "mild" disease, soon started to raise the alarm…
RT @elisaperego78: And yet, people phone-triaged and left at home, or people deemed to have "mild" disease, soon started to raise the alarm…
RT @elisaperego78: And yet, people phone-triaged and left at home, or people deemed to have "mild" disease, soon started to raise the alarm…
RT @elisaperego78: And yet, people phone-triaged and left at home, or people deemed to have "mild" disease, soon started to raise the alarm…
RT @elisaperego78: And yet, people phone-triaged and left at home, or people deemed to have "mild" disease, soon started to raise the alarm…
RT @elisaperego78: And yet, people phone-triaged and left at home, or people deemed to have "mild" disease, soon started to raise the alarm…
RT @elisaperego78: And yet, people phone-triaged and left at home, or people deemed to have "mild" disease, soon started to raise the alarm…
RT @elisaperego78: And yet, people phone-triaged and left at home, or people deemed to have "mild" disease, soon started to raise the alarm…
RT @elisaperego78: And yet, people phone-triaged and left at home, or people deemed to have "mild" disease, soon started to raise the alarm…
RT @elisaperego78: And yet, people phone-triaged and left at home, or people deemed to have "mild" disease, soon started to raise the alarm…
RT @elisaperego78: And yet, people phone-triaged and left at home, or people deemed to have "mild" disease, soon started to raise the alarm…
RT @elisaperego78: And yet, people phone-triaged and left at home, or people deemed to have "mild" disease, soon started to raise the alarm…
RT @elisaperego78: And yet, people phone-triaged and left at home, or people deemed to have "mild" disease, soon started to raise the alarm…
RT @elisaperego78: And yet, people phone-triaged and left at home, or people deemed to have "mild" disease, soon started to raise the alarm…
RT @elisaperego78: And yet, people phone-triaged and left at home, or people deemed to have "mild" disease, soon started to raise the alarm…
RT @elisaperego78: And yet, people phone-triaged and left at home, or people deemed to have "mild" disease, soon started to raise the alarm…
RT @elisaperego78: And yet, people phone-triaged and left at home, or people deemed to have "mild" disease, soon started to raise the alarm…
RT @elisaperego78: And yet, people phone-triaged and left at home, or people deemed to have "mild" disease, soon started to raise the alarm…
RT @elisaperego78: And yet, people phone-triaged and left at home, or people deemed to have "mild" disease, soon started to raise the alarm…
RT @elisaperego78: And yet, people phone-triaged and left at home, or people deemed to have "mild" disease, soon started to raise the alarm…
RT @elisaperego78: And yet, people phone-triaged and left at home, or people deemed to have "mild" disease, soon started to raise the alarm…
RT @elisaperego78: And yet, people phone-triaged and left at home, or people deemed to have "mild" disease, soon started to raise the alarm…
RT @elisaperego78: And yet, people phone-triaged and left at home, or people deemed to have "mild" disease, soon started to raise the alarm…
And yet, people phone-triaged and left at home, or people deemed to have "mild" disease, soon started to raise the alarm: we were seeing similar phenomena in those who were supposed to recover in "two weeks" and were not "old and frail" https://t.co/8jTXxAX8xK
RT @elisaperego78: @RachelCDailey On how the #LongCovid patient community identified, named and shone the spotlight on prolonged covid dise…
RT @elisaperego78: @RachelCDailey On how the #LongCovid patient community identified, named and shone the spotlight on prolonged covid dise…
@RachelCDailey On how the #LongCovid patient community identified, named and shone the spotlight on prolonged covid disease, I suggest this piece by myself and @felicitycallard Patient-led expertise can change the way we understand diseases, and how medicine is done https://t.co/8jTXxAXGni
4/ und was auch initial gefordert wurde (https://t.co/GzxM2bNskj) in relevantem Umfang Betroffene (= Patienten) in den Definitionsprozess einbezogen hat und deutlich weniger - als bei anderen Krankheitsdefinitionen - „externe Experten“ (wie es in der WHO-Definition heißt).
RT @elisaperego78: Here @felicitycallard and I discuss how #LongCovid emerged early in the pandemic from the experience of people internati…
Here @felicitycallard and I discuss how #LongCovid emerged early in the pandemic from the experience of people internationally, who weren't recovering after the 2--6 week official recovery timeline provided by health bodies early in the pandemic https://t.co/8jTXxAX8xK
@TheRealSPK @macleans @sarahcox_bc @cfrangou No, it is not. - https://t.co/ocrhxm9O3C - https://t.co/e9RLac3uMf Patients didn't create the term as a marketing tool, that's plain fact.
RT @elisaperego78: I and @felicitycallard recount the history of early #LongCovid advocacy, patient-led research, and activism in "How and…
RT @elisaperego78: I and @felicitycallard recount the history of early #LongCovid advocacy, patient-led research, and activism in "How and…
I and @felicitycallard recount the history of early #LongCovid advocacy, patient-led research, and activism in "How and Why Patients Made Long Covid" We submitted on 23 August 2020, only twp days after the @WHO openly recognized Long Covid https://t.co/8jTXxAX8xK
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