#pwme — Public Fediverse posts
Live and recent posts from across the Fediverse tagged #pwme, aggregated by home.social.
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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 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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⚠️ Update: si un enlace no funcione o hay algún error en el texto avisadme, por favor. Ya está arreglado y podéis leerlo.
✩₊˚.⋆☾𓃦☽⋆⁺₊✧ ✩
Y de noche recuerdo esta #poesia sobre la luz, los colores y el sol. Mis ex.#203 Oculta entre las sombras, la luz sigue ahí 🐺https://domandoallobo.blogspot.com/2016/08/203-oculta-entre-las-sombras-la-luz.html #blog
#DiaDeLaPoesia #WorldPoetryDay #poema #Lupus #Sjögren #EncefalomielitisMiálgica #pwME #Fibromialgia #Migraña #POTS #fotofobia #fotosensibilidad #mastoblog #mastobloggers #mastobloggers
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Symptom: Social Security Disability Rejection
61% of Social Security applicants are denied after their first application. I am now on the second appeal, when 49% of remaining applicants are approved, and have hired a lawyer (disability lawyers are only paid if they win your case).
I set a new goal on ko-fi, in order to get more illmarks pieces into the world. The fundraising would cover framing two Med Art Advocacy pieces, and submission fees + professional scanning for the Mütter Medical Museum, a Senior Living Center, a Health Care Center & 3 other shows.
If you are able to comfortably, please buy me a ko-fi. We’re 1/3 of the way to the goal!
https://www.illmarks.com/symptom-social-security-disability-rejection/
#artmuseum #BetterFutures #bodyHorror #chronicIllness #chronicIllness #chronicPain #crowdfund #disability #disabilityart #disabilityJustice #FederalGovernment #kofi #longcovid #medicalArt #MillionsMissing #pwLC #pwme #redesignSystems #socialSecurity #SocialSecurityReform #SSI #systemsFailing #TransformativeFutures #UniversalBasicIncome #US #usa #ushealthcare
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Help me escape abuse & finally get out of here this #NewYear 🎉🥳
Please help by hitting 🔄 BOOST , 📝QUOTE & 💸 GIVE if you can. Share on all social media platforms.
https://chuffed.org/project/161937-help-anna-escape
### Urgent Appeal: Help Anna #Escape #Abuse – Time is Running Out!
🚨EMERGENCY: Anna's Life Hangs in the Balance – Act NOW to Rescue Her from #Abuse and #Neglect!
Anna, an Australian woman battling severe #MyalgicEncephalomyelitis (#ME) for over 20 years, is trapped in a toxic home with abusive family members. Bedbound and forced to stay in a dark room, she is vulnerable and that vulnerability is taken advantage of. She is not allowed access to #disability aids or workers and needs approval for all mailed items including food, which may be binned or sold regardless. There are no steady rules, just excuses for her abuse. She faces deliberate exposure to sensory overload, days without food, constant yelling, stolen belongings, and three #COVID infections in 15 months due to unmasked family members. She now has #LongCovid as well. Compounded by #endometriosis, #hypothyroidism, #POTS, #chronicpain, and more - her health is deteriorating rapidly.
** Her doctor fears that staying in this environment will kill her.**
#Australia's #healthcare, #disability, and #domesticviolence systems have failed her catastrophically,. This systemic neglect has created a life-threatening crisis – and for Anna, it's already too late to wait.
**Anna's Critical Needs – Your Support Can Save Her:**
- **Safe Housing ASAP:** Anna desperately needs a quiet room in a COVID-conscious (masking) home in #Melbourne. She can pay rent $250 per week, with funded meals and limited care hours; long-term help may qualify for Carer's Allowance. She has indicated she may need incidental help.
- **Secure Relocation:** Specialized transport to reduce infection risks and suit her ME. Funds needed for moving costs and aids until #NDIS access.
- **Expert Advocacy:** A #DisabilityAdvocate for complex cases to navigate the system with her. Even a friend just willing to help. She can’t do this alone.
- **Communication Aid (#Australia, preferably #Victoria):** Someone to handle phone tasks – all documents provided. Brain injury has made phone use impossible.
-**This is a Shameful Failure – But You Can Help** In a resource-rich nation, no one should rot in abuse while services ignore them. Don't let Anna become a statistic.
Please #donate, #share, or offer direct #help now!
If you can provide #housing, #advocacy, or calls, contact immediately at -
Halcionandon at gmail dot com
If Chuffed is not your thing, you can donate at:
BMaC- https://www.buymeacoffee.com/Halcionandon
Beem: HalcionandonThanks so much for reading. Please share!
Read more about Anna's story:
https://www.thecanary.co/global/world-analysis/2025/04/01/anna-severe-me-cfs/#MutualAidRequest #MutualAid #Narcissist #NarcissisticAbuse #Crowdfund #Neglect
@mutualaid
#LongCovid #NewYear #PWLc
#MECFS #PWME #SevereME #ChronicPain
@mecfs -
CW: bodily functions
Symptom: Chronic Diarrhea
https://www.illmarks.com/symptom-chronic-diarrhea/
#anxiety #art #autism #bodilyFunction #bodilyFunction #bodyHorror #bodyMapping #cfs #chronicIllness #depression #diarrhea #eds #ehlersdanlossyndrome #FunctionalGastrointestinalDisorder #gastroenterology #gastrointestinal #GI #gutBrainAxis #gutbrainAxis #heds #hypermobile #hypermobility #hypermobilityspectrumdisorder #ibs #longCovid #longcovid #mecfs #MECFSBuy #medart #medicalArt #MillionsMissing #MyalgicEncephalomyelitis #neurodivergence #PIIBS #postInfectiousIrritableBowelSyndrome #postIfectiousIrritibleBowelSyndrome #pwLC #pwme #rritableBowelSyndrome #SciArt #SciComms
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Symptom: Mast Cell Itching
https://www.illmarks.com/symptom-mast-cell-itching/
#allergicreactions #Allergies #allergy #art #bodyHorror #bodyMapping #buildingSafety #chonicillness #chronicIllness #claws #eds #ehlersdanlossyndrome #environmentalIllness #environmentalillness #fingers #formaldehyde #heds #hypermobile #hypermobility #hypermobilityspectrumdisorder #immunology #itched #itching #longCovid #longcovid #mastCell #mastCellActivationSyndrome #mastcell #mastcellactivationsyndrome #mastcelldisease #mastocytosis #mcas #medicalArt #MillionsMissing #nails #POTS #prop65 #publicHealth #publicHealth #pwLC #pwme #scratched #scratching #scratchy #severeallergy #vocs