#pwme — Public Fediverse posts

Petition to pause the McMaster's Lightning Process (FALCON) trial

https://www.change.org/p/long-covid-patients-deserve-better-pause-mcmaster-s-falcon-lightning-process-trial

https://s4me.info/threads/mcmaster-university-conducting-an-lp-trial-falcon.51303/post-711240

Screenshot from latest Science for ME weekly update

#LongCovid #MEcfs #PwME @mecfs @longcovid

Petition to pause the McMaster's Lightning Process (FALCON) trial

https://www.change.org/p/long-covid-patients-deserve-better-pause-mcmaster-s-falcon-lightning-process-trial

https://s4me.info/threads/mcmaster-university-conducting-an-lp-trial-falcon.51303/post-711240

Screenshot from latest Science for ME weekly update

#LongCovid #MEcfs #PwME @mecfs @longcovid

Petition to pause the McMaster's Lightning Process (FALCON) trial

https://www.change.org/p/long-covid-patients-deserve-better-pause-mcmaster-s-falcon-lightning-process-trial

https://s4me.info/threads/mcmaster-university-conducting-an-lp-trial-falcon.51303/post-711240

Screenshot from latest Science for ME weekly update

#LongCovid #MEcfs #PwME @mecfs @longcovid

Petition to pause the McMaster's Lightning Process (FALCON) trial

https://www.change.org/p/long-covid-patients-deserve-better-pause-mcmaster-s-falcon-lightning-process-trial

https://s4me.info/threads/mcmaster-university-conducting-an-lp-trial-falcon.51303/post-711240

Screenshot from latest Science for ME weekly update

#LongCovid #MEcfs #PwME @mecfs @longcovid

Petition to pause the McMaster's Lightning Process (FALCON) trial

https://www.change.org/p/long-covid-patients-deserve-better-pause-mcmaster-s-falcon-lightning-process-trial

https://s4me.info/threads/mcmaster-university-conducting-an-lp-trial-falcon.51303/post-711240

Screenshot from latest Science for ME weekly update

#LongCovid #MEcfs #PwME @mecfs @longcovid

Informal ME/CFS social meet-up in Dundalk hosted by Tom Kindlon @tomkindlon on Wednesday, August 26

https://irishmecfs.org/blog/dundalk-informal-mecfs-social-meet-up-on-wednesday-august-26-hosted-by-tom-kindlon

Hopefully we’ll see some of you there.

#MEcfs #PwME #CFS #MyalgicEncephalomyelitis #longcovid #Dundalk @mecfs @longcovid

Informal ME/CFS social meet-up in Dundalk hosted by Tom Kindlon @tomkindlon on Wednesday, August 26

https://irishmecfs.org/blog/dundalk-informal-mecfs-social-meet-up-on-wednesday-august-26-hosted-by-tom-kindlon

Hopefully we’ll see some of you there.

#MEcfs #PwME #CFS #MyalgicEncephalomyelitis #longcovid #Dundalk @mecfs @longcovid

Informal ME/CFS social meet-up in Dundalk hosted by Tom Kindlon @tomkindlon on Wednesday, August 26

https://irishmecfs.org/blog/dundalk-informal-mecfs-social-meet-up-on-wednesday-august-26-hosted-by-tom-kindlon

Hopefully we’ll see some of you there.

#MEcfs #PwME #CFS #MyalgicEncephalomyelitis #longcovid #Dundalk @mecfs @longcovid

Informal ME/CFS social meet-up in Dundalk hosted by Tom Kindlon @tomkindlon on Wednesday, August 26

https://irishmecfs.org/blog/dundalk-informal-mecfs-social-meet-up-on-wednesday-august-26-hosted-by-tom-kindlon

Hopefully we’ll see some of you there.

#MEcfs #PwME #CFS #MyalgicEncephalomyelitis #longcovid #Dundalk @mecfs @longcovid

Informal ME/CFS social meet-up in Dundalk hosted by Tom Kindlon @tomkindlon on Wednesday, August 26

https://irishmecfs.org/blog/dundalk-informal-mecfs-social-meet-up-on-wednesday-august-26-hosted-by-tom-kindlon

Hopefully we’ll see some of you there.

#MEcfs #PwME #CFS #MyalgicEncephalomyelitis #longcovid #Dundalk @mecfs @longcovid

I have been asked for my opinion on an ME/CFS research proposal. I want to suggest an activity monitor or step counter as an outcome measure.

Unfortunately budget isn’t huge so would need to be two figures in US$/€/£ per unit. Suggestions welcomed.

#mecfs #pwme #cfs @mecfs

I have been asked for my opinion on an ME/CFS research proposal. I want to suggest an activity monitor or step counter as an outcome measure.

Unfortunately budget isn’t huge so would need to be two figures in US$/€/£ per unit. Suggestions welcomed.

#mecfs #pwme #cfs @mecfs

I have been asked for my opinion on an ME/CFS research proposal. I want to suggest an activity monitor or step counter as an outcome measure.

Unfortunately budget isn’t huge so would need to be two figures in US$/€/£ per unit. Suggestions welcomed.

#mecfs #pwme #cfs @mecfs

I have been asked for my opinion on an ME/CFS research proposal. I want to suggest an activity monitor or step counter as an outcome measure.

Unfortunately budget isn’t huge so would need to be two figures in US$/€/£ per unit. Suggestions welcomed.

#mecfs #pwme #cfs @mecfs

I have been asked for my opinion on an ME/CFS research proposal. I want to suggest an activity monitor or step counter as an outcome measure.

Unfortunately budget isn’t huge so would need to be two figures in US$/€/£ per unit. Suggestions welcomed.

#mecfs #pwme #cfs @mecfs

8/

“‘Recovering’ denotes having significantly improved in health and capacity, while not being completely free of symptoms.”

People can’t tell the future. People can’t know they will reach 100%. They might hope they will but until they have reached it, they haven’t recovered.
#cfs #pwme
@mecfs #mecfs

8/

“‘Recovering’ denotes having significantly improved in health and capacity, while not being completely free of symptoms.”

People can’t tell the future. People can’t know they will reach 100%. They might hope they will but until they have reached it, they haven’t recovered.
#cfs #pwme
@mecfs #mecfs

8/

“‘Recovering’ denotes having significantly improved in health and capacity, while not being completely free of symptoms.”

People can’t tell the future. People can’t know they will reach 100%. They might hope they will but until they have reached it, they haven’t recovered.
#cfs #pwme
@mecfs #mecfs

8/

“‘Recovering’ denotes having significantly improved in health and capacity, while not being completely free of symptoms.”

People can’t tell the future. People can’t know they will reach 100%. They might hope they will but until they have reached it, they haven’t recovered.
#cfs #pwme
@mecfs #mecfs

8/

“‘Recovering’ denotes having significantly improved in health and capacity, while not being completely free of symptoms.”

People can’t tell the future. People can’t know they will reach 100%. They might hope they will but until they have reached it, they haven’t recovered.
#cfs #pwme
@mecfs #mecfs

A Life Hidden: The Burden of Chronic Illness That I Rarely Talk About

https://alifehidden.com/2026/07/30/burden/

Screenshot from latest Science for ME weekly update

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

A Life Hidden: The Burden of Chronic Illness That I Rarely Talk About

https://alifehidden.com/2026/07/30/burden/

Screenshot from latest Science for ME weekly update

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

A Life Hidden: The Burden of Chronic Illness That I Rarely Talk About

https://alifehidden.com/2026/07/30/burden/

Screenshot from latest Science for ME weekly update

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

A Life Hidden: The Burden of Chronic Illness That I Rarely Talk About

https://alifehidden.com/2026/07/30/burden/

Screenshot from latest Science for ME weekly update

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

A Life Hidden: The Burden of Chronic Illness That I Rarely Talk About

https://alifehidden.com/2026/07/30/burden/

Screenshot from latest Science for ME weekly update

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

5/

“The use of the term ‘recovery’ reflects its use by the community. As the purpose of this report is to reflect the subjective, social and cultural reality of participants’ accounts, medical criteria have not been applied to assess them. The experience of recovery and participants’ understanding of the meaning of the term is not uniform.”

#mecfs #pwme
@mecfs

5/

“The use of the term ‘recovery’ reflects its use by the community. As the purpose of this report is to reflect the subjective, social and cultural reality of participants’ accounts, medical criteria have not been applied to assess them. The experience of recovery and participants’ understanding of the meaning of the term is not uniform.”

#mecfs #pwme
@mecfs

5/

“The use of the term ‘recovery’ reflects its use by the community. As the purpose of this report is to reflect the subjective, social and cultural reality of participants’ accounts, medical criteria have not been applied to assess them. The experience of recovery and participants’ understanding of the meaning of the term is not uniform.”

#mecfs #pwme
@mecfs

5/

“The use of the term ‘recovery’ reflects its use by the community. As the purpose of this report is to reflect the subjective, social and cultural reality of participants’ accounts, medical criteria have not been applied to assess them. The experience of recovery and participants’ understanding of the meaning of the term is not uniform.”

#mecfs #pwme
@mecfs

5/

“The use of the term ‘recovery’ reflects its use by the community. As the purpose of this report is to reflect the subjective, social and cultural reality of participants’ accounts, medical criteria have not been applied to assess them. The experience of recovery and participants’ understanding of the meaning of the term is not uniform.”

#mecfs #pwme
@mecfs

4/
Comment from me:

Note there is also a big question mark about whether the people reporting recovery in this report were actually recovered. "Recovery" can be used in a wishy-washy way and it seems like this was the case here:

#mecfs #pwme #cfs
@mecfs

4/
Comment from me:

Note there is also a big question mark about whether the people reporting recovery in this report were actually recovered. "Recovery" can be used in a wishy-washy way and it seems like this was the case here:

#mecfs #pwme #cfs
@mecfs

4/
Comment from me:

Note there is also a big question mark about whether the people reporting recovery in this report were actually recovered. "Recovery" can be used in a wishy-washy way and it seems like this was the case here:

#mecfs #pwme #cfs
@mecfs

4/
Comment from me:

Note there is also a big question mark about whether the people reporting recovery in this report were actually recovered. "Recovery" can be used in a wishy-washy way and it seems like this was the case here:

#mecfs #pwme #cfs
@mecfs

4/
Comment from me:

Note there is also a big question mark about whether the people reporting recovery in this report were actually recovered. "Recovery" can be used in a wishy-washy way and it seems like this was the case here:

#mecfs #pwme #cfs
@mecfs

3/
Extract from:
Trial By Error: CFS “Recovery” Findings Might Be “Suppressed,” Says Report By David Tuller

https://virology.ws/2026/08/11/trial-by-error-cfs-recovery-findings-might-be-suppressed-says-report/

#MEcfs #PwME #CFS #ME #MyalgicE

@mecfs

3/
Extract from:
Trial By Error: CFS “Recovery” Findings Might Be “Suppressed,” Says Report By David Tuller

https://virology.ws/2026/08/11/trial-by-error-cfs-recovery-findings-might-be-suppressed-says-report/

#MEcfs #PwME #CFS #ME #MyalgicE

@mecfs

3/
Extract from:
Trial By Error: CFS “Recovery” Findings Might Be “Suppressed,” Says Report By David Tuller

https://virology.ws/2026/08/11/trial-by-error-cfs-recovery-findings-might-be-suppressed-says-report/

#MEcfs #PwME #CFS #ME #MyalgicE

@mecfs

3/
Extract from:
Trial By Error: CFS “Recovery” Findings Might Be “Suppressed,” Says Report By David Tuller

https://virology.ws/2026/08/11/trial-by-error-cfs-recovery-findings-might-be-suppressed-says-report/

#MEcfs #PwME #CFS #ME #MyalgicE

@mecfs

3/
Extract from:
Trial By Error: CFS “Recovery” Findings Might Be “Suppressed,” Says Report By David Tuller

https://virology.ws/2026/08/11/trial-by-error-cfs-recovery-findings-might-be-suppressed-says-report/

#MEcfs #PwME #CFS #ME #MyalgicE

@mecfs

🧵
Trial By Error: CFS “Recovery” Findings Might Be “Suppressed,” Says Report
By David Tuller

https://virology.ws/2026/08/11/trial-by-error-cfs-recovery-findings-might-be-suppressed-says-report/

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

1/

🧵
Trial By Error: CFS “Recovery” Findings Might Be “Suppressed,” Says Report
By David Tuller

https://virology.ws/2026/08/11/trial-by-error-cfs-recovery-findings-might-be-suppressed-says-report/

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

1/

🧵
Trial By Error: CFS “Recovery” Findings Might Be “Suppressed,” Says Report
By David Tuller

https://virology.ws/2026/08/11/trial-by-error-cfs-recovery-findings-might-be-suppressed-says-report/

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

1/

🧵
Trial By Error: CFS “Recovery” Findings Might Be “Suppressed,” Says Report
By David Tuller

https://virology.ws/2026/08/11/trial-by-error-cfs-recovery-findings-might-be-suppressed-says-report/

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

1/

🧵
Trial By Error: CFS “Recovery” Findings Might Be “Suppressed,” Says Report
By David Tuller

https://virology.ws/2026/08/11/trial-by-error-cfs-recovery-findings-might-be-suppressed-says-report/

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

1/

Dagsform: spelar spardame mot tre kattar og tapar so det ljomar etter
#pwME

Dagsform: spelar spardame mot tre kattar og tapar so det ljomar etter
#pwME

Dagsform: spelar spardame mot tre kattar og tapar so det ljomar etter
#pwME

Dagsform: spelar spardame mot tre kattar og tapar so det ljomar etter
#pwME

Dagsform: spelar spardame mot tre kattar og tapar so det ljomar etter
#pwME

(Ireland)
The HSE invite you to join a Lived Experience Group Meeting in September to share experiences.

These meetings are online.

#MyalgicEncephalomyelitis #PwME @mecfs #mecfs

(Ireland)
The HSE invite you to join a Lived Experience Group Meeting in September to share experiences.

These meetings are online.

#MyalgicEncephalomyelitis #PwME @mecfs #mecfs

(Ireland)
The HSE invite you to join a Lived Experience Group Meeting in September to share experiences.

These meetings are online.

#MyalgicEncephalomyelitis #PwME @mecfs #mecfs

(Ireland)
The HSE invite you to join a Lived Experience Group Meeting in September to share experiences.

These meetings are online.

#MyalgicEncephalomyelitis #PwME @mecfs #mecfs

(Ireland)
The HSE invite you to join a Lived Experience Group Meeting in September to share experiences.

These meetings are online.

#MyalgicEncephalomyelitis #PwME @mecfs #mecfs

Kroppen: brems ned! Gå og legg deg! Ta det med ro nokre dagar til forma stabiliserar seg! ☝️

Hovudet: Ne-ei, ikkje noko teknisk eller anna form for kognitivt krevjande lektyre! ☝️

Eg: *les «Hats in Vogue since 1910»* 👒😍

#pwME

Kroppen: brems ned! Gå og legg deg! Ta det med ro nokre dagar til forma stabiliserar seg! ☝️

Hovudet: Ne-ei, ikkje noko teknisk eller anna form for kognitivt krevjande lektyre! ☝️

Eg: *les «Hats in Vogue since 1910»* 👒😍

#pwME

Kroppen: brems ned! Gå og legg deg! Ta det med ro nokre dagar til forma stabiliserar seg! ☝️

Hovudet: Ne-ei, ikkje noko teknisk eller anna form for kognitivt krevjande lektyre! ☝️

Eg: *les «Hats in Vogue since 1910»* 👒😍

#pwME

Kroppen: brems ned! Gå og legg deg! Ta det med ro nokre dagar til forma stabiliserar seg! ☝️

Hovudet: Ne-ei, ikkje noko teknisk eller anna form for kognitivt krevjande lektyre! ☝️

Eg: *les «Hats in Vogue since 1910»* 👒😍

#pwME

Kroppen: brems ned! Gå og legg deg! Ta det med ro nokre dagar til forma stabiliserar seg! ☝️

Hovudet: Ne-ei, ikkje noko teknisk eller anna form for kognitivt krevjande lektyre! ☝️

Eg: *les «Hats in Vogue since 1910»* 👒😍

#pwME