#pwme — Public Fediverse posts
Live and recent posts from across the Fediverse tagged #pwme, aggregated by home.social.
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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 US 🇺🇸 research
Total blood volume and red blood cell volume are not associated with orthostatic intolerance in adults with myalgic encephalomyelitis/chronic fatigue syndrome
Free fulltext:
https://physoc.onlinelibrary.wiley.com/doi/10.14814/phy2.71087 -
New US 🇺🇸 research
Total blood volume and red blood cell volume are not associated with orthostatic intolerance in adults with myalgic encephalomyelitis/chronic fatigue syndrome
Free fulltext:
https://physoc.onlinelibrary.wiley.com/doi/10.14814/phy2.71087 -
New US 🇺🇸 research
Total blood volume and red blood cell volume are not associated with orthostatic intolerance in adults with myalgic encephalomyelitis/chronic fatigue syndrome
Free fulltext:
https://physoc.onlinelibrary.wiley.com/doi/10.14814/phy2.71087 -
New US 🇺🇸 research
Total blood volume and red blood cell volume are not associated with orthostatic intolerance in adults with myalgic encephalomyelitis/chronic fatigue syndrome
Free fulltext:
https://physoc.onlinelibrary.wiley.com/doi/10.14814/phy2.71087 -
New US 🇺🇸 research
Total blood volume and red blood cell volume are not associated with orthostatic intolerance in adults with myalgic encephalomyelitis/chronic fatigue syndrome
Free fulltext:
https://physoc.onlinelibrary.wiley.com/doi/10.14814/phy2.71087 -
4/
Here is a link to the LinkedIn post on this, if anyone wants to like it/react to it; comment on it; and/or repost it:
https://lnkd.in/p/dx3ptwiSIt already has over 2000 views so likely reaching outside the bubble.
#mecfs #pwme #cfs
@mecfs -
4/
Here is a link to the LinkedIn post on this, if anyone wants to like it/react to it; comment on it; and/or repost it:
https://lnkd.in/p/dx3ptwiSIt already has over 2000 views so likely reaching outside the bubble.
#mecfs #pwme #cfs
@mecfs -
4/
Here is a link to the LinkedIn post on this, if anyone wants to like it/react to it; comment on it; and/or repost it:
https://lnkd.in/p/dx3ptwiSIt already has over 2000 views so likely reaching outside the bubble.
#mecfs #pwme #cfs
@mecfs -
4/
Here is a link to the LinkedIn post on this, if anyone wants to like it/react to it; comment on it; and/or repost it:
https://lnkd.in/p/dx3ptwiSIt already has over 2000 views so likely reaching outside the bubble.
#mecfs #pwme #cfs
@mecfs -
4/
Here is a link to the LinkedIn post on this, if anyone wants to like it/react to it; comment on it; and/or repost it:
https://lnkd.in/p/dx3ptwiSIt already has over 2000 views so likely reaching outside the bubble.
#mecfs #pwme #cfs
@mecfs -
3/
The main re-analysis paper can be read for free here:
Rethinking the treatment of chronic fatigue syndrome—a reanalysis and evaluation of findings from a recent major trial of graded exercise and CBT
https://link.springer.com/article/10.1186/s40359-018-0218-3 -
3/
The main re-analysis paper can be read for free here:
Rethinking the treatment of chronic fatigue syndrome—a reanalysis and evaluation of findings from a recent major trial of graded exercise and CBT
https://link.springer.com/article/10.1186/s40359-018-0218-3 -
3/
The main re-analysis paper can be read for free here:
Rethinking the treatment of chronic fatigue syndrome—a reanalysis and evaluation of findings from a recent major trial of graded exercise and CBT
https://link.springer.com/article/10.1186/s40359-018-0218-3 -
3/
The main re-analysis paper can be read for free here:
Rethinking the treatment of chronic fatigue syndrome—a reanalysis and evaluation of findings from a recent major trial of graded exercise and CBT
https://link.springer.com/article/10.1186/s40359-018-0218-3 -
3/
The main re-analysis paper can be read for free here:
Rethinking the treatment of chronic fatigue syndrome—a reanalysis and evaluation of findings from a recent major trial of graded exercise and CBT
https://link.springer.com/article/10.1186/s40359-018-0218-3 -
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🚨CDC ME/CFS SEC Conference Call 🚨
(SEC = Stakeholder Engagement and Communications)Friday, September 18
3:00 - 4:30 pm EDTGuest speaker Nancy Klimas, MD: "How Progress in Long COVID is helping us understand ME/CFS”
The CDC has not held one of these ME/CFS calls for a long time - last one was Dec. 2024!
Online meeting using Microsoft Teams. Registration required.
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🚨CDC ME/CFS SEC Conference Call 🚨
(SEC = Stakeholder Engagement and Communications)Friday, September 18
3:00 - 4:30 pm EDTGuest speaker Nancy Klimas, MD: "How Progress in Long COVID is helping us understand ME/CFS”
The CDC has not held one of these ME/CFS calls for a long time - last one was Dec. 2024!
Online meeting using Microsoft Teams. Registration required.
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🚨CDC ME/CFS SEC Conference Call 🚨
(SEC = Stakeholder Engagement and Communications)Friday, September 18
3:00 - 4:30 pm EDTGuest speaker Nancy Klimas, MD: "How Progress in Long COVID is helping us understand ME/CFS”
The CDC has not held one of these ME/CFS calls for a long time - last one was Dec. 2024!
Online meeting using Microsoft Teams. Registration required.
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🚨CDC ME/CFS SEC Conference Call 🚨
(SEC = Stakeholder Engagement and Communications)Friday, September 18
3:00 - 4:30 pm EDTGuest speaker Nancy Klimas, MD: "How Progress in Long COVID is helping us understand ME/CFS”
The CDC has not held one of these ME/CFS calls for a long time - last one was Dec. 2024!
Online meeting using Microsoft Teams. Registration required.
-
🚨CDC ME/CFS SEC Conference Call 🚨
(SEC = Stakeholder Engagement and Communications)Friday, September 18
3:00 - 4:30 pm EDTGuest speaker Nancy Klimas, MD: "How Progress in Long COVID is helping us understand ME/CFS”
The CDC has not held one of these ME/CFS calls for a long time - last one was Dec. 2024!
Online meeting using Microsoft Teams. Registration required.
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“Trial By Error: A Study of The Switch, New Zealand’s Homegrown Version of the Lightning Process, Yields Meaningless Findings” By David Tuller
#MEcfs #LongCovid #Sceptic #Skeptic #CFS #PwME @mecfs @longcovid
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“Trial By Error: A Study of The Switch, New Zealand’s Homegrown Version of the Lightning Process, Yields Meaningless Findings” By David Tuller
#MEcfs #LongCovid #Sceptic #Skeptic #CFS #PwME @mecfs @longcovid
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“Trial By Error: A Study of The Switch, New Zealand’s Homegrown Version of the Lightning Process, Yields Meaningless Findings” By David Tuller
#MEcfs #LongCovid #Sceptic #Skeptic #CFS #PwME @mecfs @longcovid
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“Trial By Error: A Study of The Switch, New Zealand’s Homegrown Version of the Lightning Process, Yields Meaningless Findings” By David Tuller
#MEcfs #LongCovid #Sceptic #Skeptic #CFS #PwME @mecfs @longcovid
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“Trial By Error: A Study of The Switch, New Zealand’s Homegrown Version of the Lightning Process, Yields Meaningless Findings” By David Tuller
#MEcfs #LongCovid #Sceptic #Skeptic #CFS #PwME @mecfs @longcovid
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RE: https://disabled.social/@tomkindlon/117238006960525328
I’m sure I can speak for the PACE Trial investigators [Peter White, Michael Sharpe & Trudie Chalder] when I say they love when the re-analyses are highlighted online. 😜
#MEcfs #PwME #CFS #MyalgicEncephalomyelitis #ChronicFatigueSyndrome @mecfs -
RE: https://disabled.social/@tomkindlon/117238006960525328
I’m sure I can speak for the PACE Trial investigators [Peter White, Michael Sharpe & Trudie Chalder] when I say they love when the re-analyses are highlighted online. 😜
#MEcfs #PwME #CFS #MyalgicEncephalomyelitis #ChronicFatigueSyndrome @mecfs -
RE: https://disabled.social/@tomkindlon/117238006960525328
I’m sure I can speak for the PACE Trial investigators [Peter White, Michael Sharpe & Trudie Chalder] when I say they love when the re-analyses are highlighted online. 😜
#MEcfs #PwME #CFS #MyalgicEncephalomyelitis #ChronicFatigueSyndrome @mecfs -
RE: https://disabled.social/@tomkindlon/117238006960525328
I’m sure I can speak for the PACE Trial investigators [Peter White, Michael Sharpe & Trudie Chalder] when I say they love when the re-analyses are highlighted online. 😜
#MEcfs #PwME #CFS #MyalgicEncephalomyelitis #ChronicFatigueSyndrome @mecfs -
RE: https://disabled.social/@tomkindlon/117238006960525328
I’m sure I can speak for the PACE Trial investigators [Peter White, Michael Sharpe & Trudie Chalder] when I say they love when the re-analyses are highlighted online. 😜
#MEcfs #PwME #CFS #MyalgicEncephalomyelitis #ChronicFatigueSyndrome @mecfs -
2/
I very rarely post on LinkedIn these days but decided to do a longer post today on this.With a lot of researchers posting less often if at all on X, more are communicating via LinkedIn.
#MEcfs #PwME #CFS #MyalgicEncephalomyelitis #ChronicFatigueSyndrome @mecfs
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2/
I very rarely post on LinkedIn these days but decided to do a longer post today on this.With a lot of researchers posting less often if at all on X, more are communicating via LinkedIn.
#MEcfs #PwME #CFS #MyalgicEncephalomyelitis #ChronicFatigueSyndrome @mecfs
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2/
I very rarely post on LinkedIn these days but decided to do a longer post today on this.With a lot of researchers posting less often if at all on X, more are communicating via LinkedIn.
#MEcfs #PwME #CFS #MyalgicEncephalomyelitis #ChronicFatigueSyndrome @mecfs
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2/
I very rarely post on LinkedIn these days but decided to do a longer post today on this.With a lot of researchers posting less often if at all on X, more are communicating via LinkedIn.
#MEcfs #PwME #CFS #MyalgicEncephalomyelitis #ChronicFatigueSyndrome @mecfs
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2/
I very rarely post on LinkedIn these days but decided to do a longer post today on this.With a lot of researchers posting less often if at all on X, more are communicating via LinkedIn.
#MEcfs #PwME #CFS #MyalgicEncephalomyelitis #ChronicFatigueSyndrome @mecfs
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10 years today, after a David vs Goliath Freedom of information (FOI) legal battle that damaged Alem Matthees' health, Peter White et al were forced to release data from PACETrial that cost UK taxpayers £5M showing graded exercise therapy & CBT didn’t lead to an increased recovery rate for CFS.
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10 years today, after a David vs Goliath Freedom of information (FOI) legal battle that damaged Alem Matthees' health, Peter White et al were forced to release data from PACETrial that cost UK taxpayers £5M showing graded exercise therapy & CBT didn’t lead to an increased recovery rate for CFS.
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10 years today, after a David vs Goliath Freedom of information (FOI) legal battle that damaged Alem Matthees' health, Peter White et al were forced to release data from PACETrial that cost UK taxpayers £5M showing graded exercise therapy & CBT didn’t lead to an increased recovery rate for CFS.
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10 years today, after a David vs Goliath Freedom of information (FOI) legal battle that damaged Alem Matthees' health, Peter White et al were forced to release data from PACETrial that cost UK taxpayers £5M showing graded exercise therapy & CBT didn’t lead to an increased recovery rate for CFS.
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10 years today, after a David vs Goliath Freedom of information (FOI) legal battle that damaged Alem Matthees' health, Peter White et al were forced to release data from PACETrial that cost UK taxpayers £5M showing graded exercise therapy & CBT didn’t lead to an increased recovery rate for CFS.
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I was fortunate to experience a nice family #BlueSunday2026 #TeaPartyForME2026 celebration yesterday in aid of the Irish ME/CFS Association @IrishMECFSAssociation
https://www.idonate.ie/fundraiser/BlueSunday2026fortheIrishMECFSAssociation
Thanks to my mum for all the work she put in organising it and to everyone who attended. 👍👏
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Thanks to my mum for getting everything ready for our family
#TeaPartyForME2026 on #BlueSunday2026 (on Sunday).We’re doing it in aid of the Irish ME/CFS Association @IrishMECFSAssociation
https://www.idonate.ie/fundraiser/BlueSunday2026fortheIrishMECFSAssociation
but other worthy charities are available (see:
https://the-slow-lane.com/donation-pages ) -
From Anna Redshaw:
I'm getting there! Just a few more links to update for Blue Sunday 2026 and then everything will be ready.
https://www.the-slow-lane.com/donation-pages
#BlueSunday2026 #TeaPartyForME2026 #MEcfs #PwME #ME #MyalgicE
@mecfs
