#pvfs — Public Fediverse posts
Live and recent posts from across the Fediverse tagged #pvfs, aggregated by home.social.
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#PEM #LeonardJason #DSQPEM2 #Questionnaire
#pwME #MyalgicEncephalomyelitis #MECFS #ChronicFatigueSyndrome #CFS #PostViralFatigueSyndrome #PVFS #PostViralDisorder #ELCI #ELC
Via Tom Kindlon's ME CFS & related page: News, Research and more on Facebook, @tomkindlon here.
Link to explorationpub.com:
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#PEM #LeonardJason #DSQPEM2 #Questionnaire
#pwME #MyalgicEncephalomyelitis #MECFS #ChronicFatigueSyndrome #CFS #PostViralFatigueSyndrome #PVFS #PostViralDisorder #ELCI #ELC
Via Tom Kindlon's ME CFS & related page: News, Research and more on Facebook, @tomkindlon here.
Link to explorationpub.com:
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I had been taking a lower dose for a number of years but then read of one or more trials on post viral fatigue syndrome of higher doses.
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I had been taking a lower dose for a number of years but then read of one or more trials on post viral fatigue syndrome of higher doses.
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"Among the features of B cells, we identified five that are associated with an increased risk of PVFS, suggesting their potential role as risk factors."
https://virologyj.biomedcentral.com/articles/10.1186/s12985-025-02809-4
Screenshot from the Science for ME weekly update
@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #PVFS1/
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"Among the features of B cells, we identified five that are associated with an increased risk of PVFS, suggesting their potential role as risk factors."
https://virologyj.biomedcentral.com/articles/10.1186/s12985-025-02809-4
Screenshot from the Science for ME weekly update
@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #PVFS1/
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New factsheet from The Sick Times team:
"What are fatigue and Post-Exertional Malaise (PEM)?"
https://longcovidjustice.org/PEM3-page PDF:
https://longcovidjustice.org/wp-content/uploads/PEM-LCE-series-2024.pdf@longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #COVIDBrain #NeuroPASC
@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #PostExertionalMalaise #ChronicFatigue #PostViralFatigueSyndrome #PostViralSyndrome #PVFS #postviralillness -
New factsheet from The Sick Times team:
"What are fatigue and Post-Exertional Malaise (PEM)?"
https://longcovidjustice.org/PEM3-page PDF:
https://longcovidjustice.org/wp-content/uploads/PEM-LCE-series-2024.pdf@longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #COVIDBrain #NeuroPASC
@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #PostExertionalMalaise #ChronicFatigue #PostViralFatigueSyndrome #PostViralSyndrome #PVFS #postviralillness -
The Coroner of the #MaeveInquest has issued a REGULATION 28: REPORT TO PREVENT FUTURE DEATHS sent to inter alia the representative of #UKgov & #NHSEngland. The link is to the three-page document, which is succinct and clear.
#SevereME #pwME #MyalgicEncephalomyelitis #MECFS #ChronicFatigueSyndrome #CFS #PostViralFatigueSyndrome #PVFS #PostViralDisorder #ELCI
Link to #Virology blog:
https://virology.ws/wp-content/uploads/2024/10/Maeve-Boothby-ONeill-regulation-28-report.pdf
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The Coroner of the #MaeveInquest has issued a REGULATION 28: REPORT TO PREVENT FUTURE DEATHS sent to inter alia the representative of #UKgov & #NHSEngland. The link is to the three-page document, which is succinct and clear.
#SevereME #pwME #MyalgicEncephalomyelitis #MECFS #ChronicFatigueSyndrome #CFS #PostViralFatigueSyndrome #PVFS #PostViralDisorder #ELCI
Link to #Virology blog:
https://virology.ws/wp-content/uploads/2024/10/Maeve-Boothby-ONeill-regulation-28-report.pdf
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"Preexisting psychiatric conditions did not significantly modify the risk of postacute fatigue symptoms."
#LongCovid #PVFS #Fatigue #ChronicFatigue
@longcovid @covid19 #mecfs @mecfs #LongCovid -
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"Preexisting psychiatric conditions did not significantly modify the risk of postacute fatigue symptoms."
#LongCovid #PVFS #Fatigue #ChronicFatigue
@longcovid @covid19 #mecfs @mecfs #LongCovid -
New from Germany:
Post-viral symptoms and conditions are more frequent in COVID-19 than influenza, but not more persistentFree
https://bmcinfectdis.biomedcentral.com/articles/10.1186/s12879-024-10059-y"Research should focus on the development of effective treatments for post-viral symptoms"
#PVFS #LongCovid #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #PASC #COVIDBrain #MEcfs #CFS #PwME @mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome @mecfs_de -
New from Germany:
Post-viral symptoms and conditions are more frequent in COVID-19 than influenza, but not more persistentFree
https://bmcinfectdis.biomedcentral.com/articles/10.1186/s12879-024-10059-y"Research should focus on the development of effective treatments for post-viral symptoms"
#PVFS #LongCovid #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #PASC #COVIDBrain #MEcfs #CFS #PwME @mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome @mecfs_de -
Solve ME/CFS Initiative:
Read our Solve Science Spotlight summary of the @JAMA_current study of #MECFS onset which compares risks after #COVID vs. other illnesses.
Hashtags:
@longcovid
#LongCovid #PwLC #PostCovidSyndrome #LC #PASC #postcovid
#postcovid19
#CovidBrain #pvfs @mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME -
Solve ME/CFS Initiative:
Read our Solve Science Spotlight summary of the @JAMA_current study of #MECFS onset which compares risks after #COVID vs. other illnesses.
Hashtags:
@longcovid
#LongCovid #PwLC #PostCovidSyndrome #LC #PASC #postcovid
#postcovid19
#CovidBrain #pvfs @mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME -
It is difficult to believe that #neoliberal #Labour, that is #UKgov, will listen let alone take action needed within the #NHS!
#pwME #MyalgicEncephalomyelitis #MECFS #ChronicFatigueSyndrome #CFS #Covid #LongCovid #PostViralFatigueSyndrome #PVFS #PostViralDisorder #ELCI
Link to #BMJ :
https://ebn.bmj.com/content/early/2024/08/29/ebnurs-2024-104177
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It is difficult to believe that #neoliberal #Labour, that is #UKgov, will listen let alone take action needed within the #NHS!
#pwME #MyalgicEncephalomyelitis #MECFS #ChronicFatigueSyndrome #CFS #Covid #LongCovid #PostViralFatigueSyndrome #PVFS #PostViralDisorder #ELCI
Link to #BMJ :
https://ebn.bmj.com/content/early/2024/08/29/ebnurs-2024-104177
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"Despite reporting chronic fatigue and achieving 10% less expected 6-minute walking distance compared to controls, PASC participants showed no apparent differences in muscle size or strength.”
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"Despite reporting chronic fatigue and achieving 10% less expected 6-minute walking distance compared to controls, PASC participants showed no apparent differences in muscle size or strength.”
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Please consider signing this petition to force #Cochrane to fulfil their promises and to stop delaying & obfuscating.
#pwME #MyalgicEncephalomyelitis #MECFS #ChronicFatigueSyndrome #CFS #PostViralFatigueSyndrome #PVFS #PostViralDisorder #ELCI
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Please consider signing this petition to force #Cochrane to fulfil their promises and to stop delaying & obfuscating.
#pwME #MyalgicEncephalomyelitis #MECFS #ChronicFatigueSyndrome #CFS #PostViralFatigueSyndrome #PVFS #PostViralDisorder #ELCI
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#LadyShambles’ take on the #MaeveInquest result, per her worthy comment to @DavidTuller1 & @ValeriEliotSmit’s overview & commentary:
1. M.E. Is a ‘physical’ (as opposed to psychological) disease;
2. M.E. can cause death;
3. #MEKills
Link to #Virology blog:
#pwME #MyalgicEncephalomyelitis #MECFS #ChronicFatigueSyndrome #CFS #PostViralFatigueSyndrome #PVFS #PostViralDisorder #ELCI
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#LadyShambles’ take on the #MaeveInquest result, per her worthy comment to @DavidTuller1 & @ValeriEliotSmit’s overview & commentary:
1. M.E. Is a ‘physical’ (as opposed to psychological) disease;
2. M.E. can cause death;
3. #MEKills
Link to #Virology blog:
#pwME #MyalgicEncephalomyelitis #MECFS #ChronicFatigueSyndrome #CFS #PostViralFatigueSyndrome #PVFS #PostViralDisorder #ELCI
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Ongoing failures by #NHS towards #pwME, especially those of us with #SevereME or #VerySevereME, really do need the UK ME charities to step up their game. My suggestion is a national #BuddySystem.
Link to #Blogger: https://crippledqueeranglo-europeanranter.blogspot.com/2023/05/pink-triangles-blue-triangles.html
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #CFS #MECFS
#PostViralFatigueSyndrome #PVFS #PostViralDisorder
#ELCI -
Ongoing failures by #NHS towards #pwME, especially those of us with #SevereME or #VerySevereME, really do need the UK ME charities to step up their game. My suggestion is a national #BuddySystem.
Link to #Blogger: https://crippledqueeranglo-europeanranter.blogspot.com/2023/05/pink-triangles-blue-triangles.html
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #CFS #MECFS
#PostViralFatigueSyndrome #PVFS #PostViralDisorder
#ELCI -
Recognised by #WHO since 1969 as a #DiseaseOfTheNervousSystem:
Despite efforts of the #BioPsychoSocial brigade to have it reclassified, it remains categorised as a neurological illness.
#pwME #MyalgicEncephalomyelitis #MECFS #CFS #ChronicFatigueSyndrome #PVFS #PostViralFatigueSyndrome #ELCI #PostViralDisorder
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Recognised by #WHO since 1969 as a #DiseaseOfTheNervousSystem:
Despite efforts of the #BioPsychoSocial brigade to have it reclassified, it remains categorised as a neurological illness.
#pwME #MyalgicEncephalomyelitis #MECFS #CFS #ChronicFatigueSyndrome #PVFS #PostViralFatigueSyndrome #ELCI #PostViralDisorder
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This article summarises the literature on post-viral symptoms during past pandemics and supplements and illustrates it with Swiss examples from the pandemics of 1890, 1918–1920 and later.
#PVFS #MEcfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @mecfs @longcovid -
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This article summarises the literature on post-viral symptoms during past pandemics and supplements and illustrates it with Swiss examples from the pandemics of 1890, 1918–1920 and later.
#PVFS #MEcfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @mecfs @longcovid -
New:
An Unwanted but Long-Known Company: Post-Viral Symptoms in the Context of Past Pandemics in Switzerland (and Beyond)Free full text:
https://www.ssph-journal.org/articles/10.3389/phrs.2024.1606966/full#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @longcovid
#LongCovid #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #PASC -
New:
An Unwanted but Long-Known Company: Post-Viral Symptoms in the Context of Past Pandemics in Switzerland (and Beyond)Free full text:
https://www.ssph-journal.org/articles/10.3389/phrs.2024.1606966/full#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @longcovid
#LongCovid #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #PASC -
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The CDC found in their research that an earlier diagnosis led to a better prognosis in #CFS.This prompted them to run a multi-million dollar awareness campaign in the 2000s aimed at professionals & the general public to highlight the issue.
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome
#MEcfs #PwME #PVFS @mecfs -
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The CDC found in their research that an earlier diagnosis led to a better prognosis in #CFS.This prompted them to run a multi-million dollar awareness campaign in the 2000s aimed at professionals & the general public to highlight the issue.
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome
#MEcfs #PwME #PVFS @mecfs -
Less than two weeks left for #pwME / #pwLC + M.E. to sign up to participate in the once-in-a-generation #DecodeME research. Please consider enrolling.
#pwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MECFS #PostViralFatigueSyndrome #PVFS #pwLC #LongCovid #PostViralDisorder
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Less than two weeks left for #pwME / #pwLC + M.E. to sign up to participate in the once-in-a-generation #DecodeME research. Please consider enrolling.
#pwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MECFS #PostViralFatigueSyndrome #PVFS #pwLC #LongCovid #PostViralDisorder
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New pre-print from Taiwan:
How post-infection status could lead to the increasing risks of #chronicfatiguesyndrome & the potential mechanisms: A 17-year population-based Cohort study
"The findings of this study demonstrate the association between CFS and infection with common pathogens, including bacteria, virus and fungi"
#MyalgicEncephalomyelitis #PostViralFatigueSyndrome #PostViralSyndrome #PVFS #postviralillness #MEcfs #CFS #PwME #MyalgicE
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New pre-print from Taiwan:
How post-infection status could lead to the increasing risks of #chronicfatiguesyndrome & the potential mechanisms: A 17-year population-based Cohort study
"The findings of this study demonstrate the association between CFS and infection with common pathogens, including bacteria, virus and fungi"
#MyalgicEncephalomyelitis #PostViralFatigueSyndrome #PostViralSyndrome #PVFS #postviralillness #MEcfs #CFS #PwME #MyalgicE
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Perhaps I ought to have elucidated that this is not solely for #pwME, but also those with #Fibromyalgia #pwFM, #LongCovid #pwLC, #PostViralFatigueSyndrome #PVFS, etc. as well as healthy folk to act as #controls. Please consider signing up. There is no guarantee one will be selected, but the act of volunteering lends support to this much-needed effort. 🙏🏻🌈💕
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Perhaps I ought to have elucidated that this is not solely for #pwME, but also those with #Fibromyalgia #pwFM, #LongCovid #pwLC, #PostViralFatigueSyndrome #PVFS, etc. as well as healthy folk to act as #controls. Please consider signing up. There is no guarantee one will be selected, but the act of volunteering lends support to this much-needed effort. 🙏🏻🌈💕
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May 5 press release:
"NIH study identifies features of #LongCOVID neurological symptoms: Findings offer insight into biological mechanisms, pointing to possible treatments"This in-depth study was run by Avi Nath who also is leading the in-depth NIH ME/CFS study using a similar format
@longcovid #longhaulers #Covidlonghaulers #PwLC #PostCovidSyndrome #postcovid #postcovid19 #LC #PostViralFatigueSyndrome #PostViralSyndrome #PVFS #postviralillness
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May 5 press release:
"NIH study identifies features of #LongCOVID neurological symptoms: Findings offer insight into biological mechanisms, pointing to possible treatments"This in-depth study was run by Avi Nath who also is leading the in-depth NIH ME/CFS study using a similar format
@longcovid #longhaulers #Covidlonghaulers #PwLC #PostCovidSyndrome #postcovid #postcovid19 #LC #PostViralFatigueSyndrome #PostViralSyndrome #PVFS #postviralillness
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I have signed up to #OpenMedicineFoundation‘s volunteer research-participant register, #StudyME , whereby scientists can locate potential contributors. The sign-up takes approximately five minutes.
I have #SevereME and the last page of text was the most difficult & time-consuming section for me to follow.
#InternationalMEAwarenessMonth #MEAwarenessMonth
#pwME #MyalgicEncephalomyelitis #MECFS
#pwFM #Fibromyalgia
#PVFS #PostViralFatigueSyndrome -
I have signed up to #OpenMedicineFoundation‘s volunteer research-participant register, #StudyME , whereby scientists can locate potential contributors. The sign-up takes approximately five minutes.
I have #SevereME and the last page of text was the most difficult & time-consuming section for me to follow.
#InternationalMEAwarenessMonth #MEAwarenessMonth
#pwME #MyalgicEncephalomyelitis #MECFS
#pwFM #Fibromyalgia
#PVFS #PostViralFatigueSyndrome -
"Self-Tracking to Do Less: An Autoethnography of #LongCOVID That Informs the Design of #Pacing Technologies"
Free
https://dl.acm.org/doi/pdf/10.1145/3544548.3581505#EnergyManagement #Spoonie #EnergyConservation #MEcfs #CFS #PwME #MEeps #PostViralFatigueSyndrome #PVFS #postviralillness @mecfs @longcovid
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"Self-Tracking to Do Less: An Autoethnography of #LongCOVID That Informs the Design of #Pacing Technologies"
Free
https://dl.acm.org/doi/pdf/10.1145/3544548.3581505#EnergyManagement #Spoonie #EnergyConservation #MEcfs #CFS #PwME #MEeps #PostViralFatigueSyndrome #PVFS #postviralillness @mecfs @longcovid
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Varsity (Cambridge Uni newspaper): The invisibility of Long Covid has an even longer history
Science student & #LongCovid sufferer Rebecca Siddall takes a historical look at prejudice about post viral illness and hopes history will stop repeating itself with Long Covid.
"I found I existed in a new state, somewhere between healthy and critically ill. But most frighteningly of all – somewhere forgettable"
