#pwme — Public Fediverse posts
Live and recent posts from across the Fediverse tagged #pwme, aggregated by home.social.
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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 -
"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.
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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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“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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“Trial By Error: Newly Knighted Anil van der Zee @anilvanderzee Discusses his Royal Honor” By David Tuller
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ME/CFS Tube Feeding Survey Report by the British Association of Clinicians in ME/CFS
Screenshot from latest Science for ME weekly update
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6/
“Listening also means paying attention to the environment. Light, sound, touch, temperature, conversation, upright positioning, movement, even other people being in or near the room – all of it can be a physiologic stressor. The environment itself can determine whether a healthcare visit is accessible or harmful.”
#severeme #mecfs #pwme #cfs
@mecfs -
3/
“care should be built around what a person’s body can actually tolerate, not around what we’ve been trained to expect a patient to tolerate.” -
I thought this was very good (as usual from Amy Mooney). Notice the audio version.
"Listen. Believe. Do No Harm: An occupational therapist’s guidance for caring well for people with severe ME/CFS"
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5/
Lots of discussion on this on my FB page where one of the researchers has now started responding to comments#MEcfs #POTS #LongCovid #CFS #PwME