#pwme — Public Fediverse posts
Live and recent posts from across the Fediverse tagged #pwme, aggregated by home.social.
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“Discussion of LP, its use of NLP, the SMILE trial, the Jason Busse LP trial was thorough and accurate.”
#LongCovid #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
@mecfs @longcovid -
Conspirituality 325: Long COVID Profiteers
The second half of this podcast episode discusses Long Covid, ME/CFS, "neuro-bollocks"-treatments such as the Lightning Process, the weak scientific methods behind trials as FALCON, SMILE and PACE and more.
https://www.conspirituality.net/episodes/326-long-covid-updateHaven't listened so far but saw praise for it
#MEcfs #LongCovid #PwME #CFS @mecfs @longcovid
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NINDS & MECFSnet - ME/CFS Exchange Webinar Series
Webinar 1: Persistence of Post-Acute Infection Symptoms: What Causes Them and Why Do They Persist?
Thursday, Oct. 8, 1 - 3 pm ETRegister
https://rtiorg.zoom.us/webinar/register/WN_7FrDcz58QtWn0IfMo9AWLQ#/registration -
The Hidden Hierarchy of Illness
https://journals.sagepub.com/doi/full/10.1177/27536351261431723
Screenshot from September AMMES newsletter
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The Hidden Hierarchy of Illness
https://journals.sagepub.com/doi/full/10.1177/27536351261431723
Screenshot from September AMMES newsletter
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The Hidden Hierarchy of Illness
https://journals.sagepub.com/doi/full/10.1177/27536351261431723
Screenshot from September AMMES newsletter
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The Hidden Hierarchy of Illness
https://journals.sagepub.com/doi/full/10.1177/27536351261431723
Screenshot from September AMMES newsletter
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The Hidden Hierarchy of Illness
https://journals.sagepub.com/doi/full/10.1177/27536351261431723
Screenshot from September AMMES newsletter
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Trial By Error: Norway Disability Case Exposes Flaws in Draft Guideline for “Long-Term Fatigue–including ME/CFS”
Screenshot from September AMMES newsletter
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Trial By Error: Norway Disability Case Exposes Flaws in Draft Guideline for “Long-Term Fatigue–including ME/CFS”
Screenshot from September AMMES newsletter
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Trial By Error: Norway Disability Case Exposes Flaws in Draft Guideline for “Long-Term Fatigue–including ME/CFS”
Screenshot from September AMMES newsletter
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Trial By Error: Norway Disability Case Exposes Flaws in Draft Guideline for “Long-Term Fatigue–including ME/CFS”
Screenshot from September AMMES newsletter
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Trial By Error: Norway Disability Case Exposes Flaws in Draft Guideline for “Long-Term Fatigue–including ME/CFS”
Screenshot from September AMMES newsletter
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ME Research UK
In the third deep-dive of our weekly Symptom Saturday series, we explore sleep dysfunction in ME/CFS – including lived experience, different patterns of sleep disruption, and research suggesting challenges across the brain and nervous system.
Read more:
https://www.meresearch.org.uk/sleep-dysfunction-in-me-cfs/#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @mecfs
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ME Research UK
In the third deep-dive of our weekly Symptom Saturday series, we explore sleep dysfunction in ME/CFS – including lived experience, different patterns of sleep disruption, and research suggesting challenges across the brain and nervous system.
Read more:
https://www.meresearch.org.uk/sleep-dysfunction-in-me-cfs/#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @mecfs
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ME Research UK
In the third deep-dive of our weekly Symptom Saturday series, we explore sleep dysfunction in ME/CFS – including lived experience, different patterns of sleep disruption, and research suggesting challenges across the brain and nervous system.
Read more:
https://www.meresearch.org.uk/sleep-dysfunction-in-me-cfs/#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @mecfs
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ME Research UK
In the third deep-dive of our weekly Symptom Saturday series, we explore sleep dysfunction in ME/CFS – including lived experience, different patterns of sleep disruption, and research suggesting challenges across the brain and nervous system.
Read more:
https://www.meresearch.org.uk/sleep-dysfunction-in-me-cfs/#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @mecfs
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ME Research UK
In the third deep-dive of our weekly Symptom Saturday series, we explore sleep dysfunction in ME/CFS – including lived experience, different patterns of sleep disruption, and research suggesting challenges across the brain and nervous system.
Read more:
https://www.meresearch.org.uk/sleep-dysfunction-in-me-cfs/#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @mecfs
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Our latest News in Brief summary has headlines and links to further reading about ME/CFS, Long Covid, and related news for the week of Sept. 7 - 13.
https://s4me.info/threads/news-in-brief-september-2026.52320/#post-721450
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Our latest News in Brief summary has headlines and links to further reading about ME/CFS, Long Covid, and related news for the week of Sept. 7 - 13.
https://s4me.info/threads/news-in-brief-september-2026.52320/#post-721450
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Our latest News in Brief summary has headlines and links to further reading about ME/CFS, Long Covid, and related news for the week of Sept. 7 - 13.
https://s4me.info/threads/news-in-brief-september-2026.52320/#post-721450
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Our latest News in Brief summary has headlines and links to further reading about ME/CFS, Long Covid, and related news for the week of Sept. 7 - 13.
https://s4me.info/threads/news-in-brief-september-2026.52320/#post-721450
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Our latest News in Brief summary has headlines and links to further reading about ME/CFS, Long Covid, and related news for the week of Sept. 7 - 13.
https://s4me.info/threads/news-in-brief-september-2026.52320/#post-721450
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Polly Patterson - Supporting Clients Through Medical Gaslighting
https://chroniclivingtherapy.com/supporting-clients-through-medical-gaslighting/
Screenshot from latest edition of the Chronic Living Therapy email bulletin
#MedicalGaslighting #MEcfs #PwME #LongCovid #chronicillness
@mecfs @longcovid #chroniclife
#ChronicPain
#Spoonielife
#hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll -
Polly Patterson - Supporting Clients Through Medical Gaslighting
https://chroniclivingtherapy.com/supporting-clients-through-medical-gaslighting/
Screenshot from latest edition of the Chronic Living Therapy email bulletin
#MedicalGaslighting #MEcfs #PwME #LongCovid #chronicillness
@mecfs @longcovid #chroniclife
#ChronicPain
#Spoonielife
#hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll -
Polly Patterson - Supporting Clients Through Medical Gaslighting
https://chroniclivingtherapy.com/supporting-clients-through-medical-gaslighting/
Screenshot from latest edition of the Chronic Living Therapy email bulletin
#MedicalGaslighting #MEcfs #PwME #LongCovid #chronicillness
@mecfs @longcovid #chroniclife
#ChronicPain
#Spoonielife
#hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll -
Polly Patterson - Supporting Clients Through Medical Gaslighting
https://chroniclivingtherapy.com/supporting-clients-through-medical-gaslighting/
Screenshot from latest edition of the Chronic Living Therapy email bulletin
#MedicalGaslighting #MEcfs #PwME #LongCovid #chronicillness
@mecfs @longcovid #chroniclife
#ChronicPain
#Spoonielife
#hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll -
Polly Patterson - Supporting Clients Through Medical Gaslighting
https://chroniclivingtherapy.com/supporting-clients-through-medical-gaslighting/
Screenshot from latest edition of the Chronic Living Therapy email bulletin
#MedicalGaslighting #MEcfs #PwME #LongCovid #chronicillness
@mecfs @longcovid #chroniclife
#ChronicPain
#Spoonielife
#hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll -
Therapy via Messaging
https://chroniclivingtherapy.com/insights-text-based-therapy/
Screenshot from latest edition of the Chronic Living Therapy email bulletin
#MEcfs #Spoonies #PwME #Spoonie #SevereME #LongCovid #CFS #chronicillness
@mecfs @longcovid #POTS @pots -
Therapy via Messaging
https://chroniclivingtherapy.com/insights-text-based-therapy/
Screenshot from latest edition of the Chronic Living Therapy email bulletin
#MEcfs #Spoonies #PwME #Spoonie #SevereME #LongCovid #CFS #chronicillness
@mecfs @longcovid #POTS @pots -
Therapy via Messaging
https://chroniclivingtherapy.com/insights-text-based-therapy/
Screenshot from latest edition of the Chronic Living Therapy email bulletin
#MEcfs #Spoonies #PwME #Spoonie #SevereME #LongCovid #CFS #chronicillness
@mecfs @longcovid #POTS @pots -
Therapy via Messaging
https://chroniclivingtherapy.com/insights-text-based-therapy/
Screenshot from latest edition of the Chronic Living Therapy email bulletin
#MEcfs #Spoonies #PwME #Spoonie #SevereME #LongCovid #CFS #chronicillness
@mecfs @longcovid #POTS @pots -
Therapy via Messaging
https://chroniclivingtherapy.com/insights-text-based-therapy/
Screenshot from latest edition of the Chronic Living Therapy email bulletin
#MEcfs #Spoonies #PwME #Spoonie #SevereME #LongCovid #CFS #chronicillness
@mecfs @longcovid #POTS @pots -
Watch for free a 15-minute fictional film on person with an unspecified invisible chronic illness
https://www.underground-cinema.com/screening-room?wix-vod-video-id=e133c0f3001b4d09ad9e8ed8aab8c804&wix-vod-comp-id=comp-mtueb2ju*just create a login & scroll to see Warrior Short Film until midnight Sun 13
As someone who took 5+ years to get diagnosed, sadly I can relate
#chronicillness #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @mecfs #pots @pots #LongCovid @longcovid #invisibleillness #chronicpain
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Watch for free a 15-minute fictional film on person with an unspecified invisible chronic illness
https://www.underground-cinema.com/screening-room?wix-vod-video-id=e133c0f3001b4d09ad9e8ed8aab8c804&wix-vod-comp-id=comp-mtueb2ju*just create a login & scroll to see Warrior Short Film until midnight Sun 13
As someone who took 5+ years to get diagnosed, sadly I can relate
#chronicillness #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @mecfs #pots @pots #LongCovid @longcovid #invisibleillness #chronicpain
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Watch for free a 15-minute fictional film on person with an unspecified invisible chronic illness
https://www.underground-cinema.com/screening-room?wix-vod-video-id=e133c0f3001b4d09ad9e8ed8aab8c804&wix-vod-comp-id=comp-mtueb2ju*just create a login & scroll to see Warrior Short Film until midnight Sun 13
As someone who took 5+ years to get diagnosed, sadly I can relate
#chronicillness #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @mecfs #pots @pots #LongCovid @longcovid #invisibleillness #chronicpain
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Watch for free a 15-minute fictional film on person with an unspecified invisible chronic illness
https://www.underground-cinema.com/screening-room?wix-vod-video-id=e133c0f3001b4d09ad9e8ed8aab8c804&wix-vod-comp-id=comp-mtueb2ju*just create a login & scroll to see Warrior Short Film until midnight Sun 13
As someone who took 5+ years to get diagnosed, sadly I can relate
#chronicillness #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @mecfs #pots @pots #LongCovid @longcovid #invisibleillness #chronicpain
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Watch for free a 15-minute fictional film on person with an unspecified invisible chronic illness
https://www.underground-cinema.com/screening-room?wix-vod-video-id=e133c0f3001b4d09ad9e8ed8aab8c804&wix-vod-comp-id=comp-mtueb2ju*just create a login & scroll to see Warrior Short Film until midnight Sun 13
As someone who took 5+ years to get diagnosed, sadly I can relate
#chronicillness #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @mecfs #pots @pots #LongCovid @longcovid #invisibleillness #chronicpain
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Media gaslighting = patient harm
https://chroniclivingtherapy.com/brain-retraining-merry-go-round/
Screenshot from latest edition of the Chronic Living Therapy email bulletin
#MEcfs #PwME #LongCovid #CFS #chronicillness
@mecfs @longcovid -
Media gaslighting = patient harm
https://chroniclivingtherapy.com/brain-retraining-merry-go-round/
Screenshot from latest edition of the Chronic Living Therapy email bulletin
#MEcfs #PwME #LongCovid #CFS #chronicillness
@mecfs @longcovid -
Media gaslighting = patient harm
https://chroniclivingtherapy.com/brain-retraining-merry-go-round/
Screenshot from latest edition of the Chronic Living Therapy email bulletin
#MEcfs #PwME #LongCovid #CFS #chronicillness
@mecfs @longcovid -
Media gaslighting = patient harm
https://chroniclivingtherapy.com/brain-retraining-merry-go-round/
Screenshot from latest edition of the Chronic Living Therapy email bulletin
#MEcfs #PwME #LongCovid #CFS #chronicillness
@mecfs @longcovid -
Media gaslighting = patient harm
https://chroniclivingtherapy.com/brain-retraining-merry-go-round/
Screenshot from latest edition of the Chronic Living Therapy email bulletin
#MEcfs #PwME #LongCovid #CFS #chronicillness
@mecfs @longcovid -
"ME, CFS and Long Covid Service Care and Support Plan (CSP)"
3-page document, one of a number of potentially useful files available here:
https://suffolkfed.org.uk/healthcare-services/me-cfs-long-covid/This service development used a lot of patient input
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"ME, CFS and Long Covid Service Care and Support Plan (CSP)"
3-page document, one of a number of potentially useful files available here:
https://suffolkfed.org.uk/healthcare-services/me-cfs-long-covid/This service development used a lot of patient input
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"ME, CFS and Long Covid Service Care and Support Plan (CSP)"
3-page document, one of a number of potentially useful files available here:
https://suffolkfed.org.uk/healthcare-services/me-cfs-long-covid/This service development used a lot of patient input
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"ME, CFS and Long Covid Service Care and Support Plan (CSP)"
3-page document, one of a number of potentially useful files available here:
https://suffolkfed.org.uk/healthcare-services/me-cfs-long-covid/This service development used a lot of patient input
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"ME, CFS and Long Covid Service Care and Support Plan (CSP)"
3-page document, one of a number of potentially useful files available here:
https://suffolkfed.org.uk/healthcare-services/me-cfs-long-covid/This service development used a lot of patient input
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New:
Systemic antibody responses against gut microbiota flagellins implicate shared & divergent immune reactivity in Crohn’s disease & #ChronicFatigueSyndromeFree:
https://microbiomejournal.biomedcentral.com/articles/10.1186/s40168-024-01858-12-minute video abstract at link explains it better
#MEcfs #CFS #PwME #CrohnsDisease @mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #Crohns @crohns1/
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Just started using Visible plus with tracking device to manage #pacing for #MyalgicEncephalomylietis #LongCovid. Will add any updates here when I can. For more info check out
#pwME #MECS #DisabilityTechnology #MedicalDevices #ChronicIllness