#pwme — Public Fediverse posts

2/

“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-update

Haven't listened so far but saw praise for it

#MEcfs #LongCovid #PwME #CFS @mecfs @longcovid

1/

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 ET

https://mecfs.rti.org/news/

Register
https://rtiorg.zoom.us/webinar/register/WN_7FrDcz58QtWn0IfMo9AWLQ#/registration

#mecfs #cfs #pwme #longcovid @mecfs @longcovid

The Hidden Hierarchy of Illness

https://journals.sagepub.com/doi/full/10.1177/27536351261431723

Screenshot from September AMMES newsletter

#MEcfs #PwME #CFS #ME #MyalgicE
@mecfs

The Hidden Hierarchy of Illness

https://journals.sagepub.com/doi/full/10.1177/27536351261431723

Screenshot from September AMMES newsletter

#MEcfs #PwME #CFS #ME #MyalgicE
@mecfs

The Hidden Hierarchy of Illness

https://journals.sagepub.com/doi/full/10.1177/27536351261431723

Screenshot from September AMMES newsletter

#MEcfs #PwME #CFS #ME #MyalgicE
@mecfs

The Hidden Hierarchy of Illness

https://journals.sagepub.com/doi/full/10.1177/27536351261431723

Screenshot from September AMMES newsletter

#MEcfs #PwME #CFS #ME #MyalgicE
@mecfs

The Hidden Hierarchy of Illness

https://journals.sagepub.com/doi/full/10.1177/27536351261431723

Screenshot from September AMMES newsletter

#MEcfs #PwME #CFS #ME #MyalgicE
@mecfs

Trial By Error: Norway Disability Case Exposes Flaws in Draft Guideline for “Long-Term Fatigue–including ME/CFS”

https://virology.ws/2026/03/13/trial-by-error-norway-disability-case-exposes-flaws-in-draft-guideline-for-long-term-fatigue-including-me-cfs/

Screenshot from September AMMES newsletter

#MEcfs #PwME #CFS #ME #MyalgicE
@mecfs

Trial By Error: Norway Disability Case Exposes Flaws in Draft Guideline for “Long-Term Fatigue–including ME/CFS”

https://virology.ws/2026/03/13/trial-by-error-norway-disability-case-exposes-flaws-in-draft-guideline-for-long-term-fatigue-including-me-cfs/

Screenshot from September AMMES newsletter

#MEcfs #PwME #CFS #ME #MyalgicE
@mecfs

Trial By Error: Norway Disability Case Exposes Flaws in Draft Guideline for “Long-Term Fatigue–including ME/CFS”

https://virology.ws/2026/03/13/trial-by-error-norway-disability-case-exposes-flaws-in-draft-guideline-for-long-term-fatigue-including-me-cfs/

Screenshot from September AMMES newsletter

#MEcfs #PwME #CFS #ME #MyalgicE
@mecfs

Trial By Error: Norway Disability Case Exposes Flaws in Draft Guideline for “Long-Term Fatigue–including ME/CFS”

https://virology.ws/2026/03/13/trial-by-error-norway-disability-case-exposes-flaws-in-draft-guideline-for-long-term-fatigue-including-me-cfs/

Screenshot from September AMMES newsletter

#MEcfs #PwME #CFS #ME #MyalgicE
@mecfs

Trial By Error: Norway Disability Case Exposes Flaws in Draft Guideline for “Long-Term Fatigue–including ME/CFS”

https://virology.ws/2026/03/13/trial-by-error-norway-disability-case-exposes-flaws-in-draft-guideline-for-long-term-fatigue-including-me-cfs/

Screenshot from September AMMES newsletter

#MEcfs #PwME #CFS #ME #MyalgicE
@mecfs

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

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

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

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

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

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

@mecfs @longcovid

#MEcfs #PwME #LongCovid #PwLC

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

@mecfs @longcovid

#MEcfs #PwME #LongCovid #PwLC

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

@mecfs @longcovid

#MEcfs #PwME #LongCovid #PwLC

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

@mecfs @longcovid

#MEcfs #PwME #LongCovid #PwLC

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

@mecfs @longcovid

#MEcfs #PwME #LongCovid #PwLC

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

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

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

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

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

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

#MEcfs #LongCovid #PwME 
@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

#MEcfs #LongCovid #PwME 
@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

#MEcfs #LongCovid #PwME 
@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

#MEcfs #LongCovid #PwME 
@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

#MEcfs #LongCovid #PwME 
@mecfs @longcovid

New:
Systemic antibody responses against gut microbiota flagellins implicate shared & divergent immune reactivity in Crohn’s disease & #ChronicFatigueSyndrome

Free:
https://microbiomejournal.biomedcentral.com/articles/10.1186/s40168-024-01858-1

2-minute video abstract at link explains it better

#MEcfs #CFS #PwME #CrohnsDisease @mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #Crohns @crohns

1/

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

https://www.makevisible.com/

#pwME #MECS #DisabilityTechnology #MedicalDevices #ChronicIllness