#cfsme — Public Fediverse posts
Live and recent posts from across the Fediverse tagged #cfsme, aggregated by home.social.
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“On the theme of personal burden and quality of life, another stated, ““She said, “My life has become an inhumane existence.” She left a husband and two teenaged children whom she referred to when she said, “I believe they have lost their mother to ME.””
@mecfs #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
#MyalgicE #CFSME #MEeps #CFIDS #SEID #NeuroME #millionsmissing -
(US)
Tell Congress: Fund ME/CFS Research NowDeadline is April 15 I believe
https://solvecfs.quorum.us/campaign/157943/
Image is from the AMMES April 2026 newsletter
#MEcfs #PwME #ME #MyalgicE
@mecfs
#CFSME #MEeps #CFIDS #SEID #NeuroME #CFS #MyE #MyalgicEncephalomyelitis #ChronicFatigueSyndrome -
Good news, my safe foods I’d been reacting to these last few weeks has gone back to lower reaction. It’s my last lot of antibiotics tomorrow, so looks like being ill made everything worse, which makes sense.
When I went to the drs last week, they were surprised I didn’t know I had strep throat. I said I’m just used to feeling really ill and being told it’s fibromyalgia, or just something I have to deal with, I hadn’t even gone about my sore throat snd earache 😂 This was a sympathetic locum, who said it shouldn’t be like this.
#ChronicIllness #Fibromyalgia #Fibro #ME #CFSME #ChronicPain #MCAS #Anxiety #Perimenopause #Depression #Agoraphobia #ADHD #AuDHD #Autistic #Palpatations probably more
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From: "Assessment of Post-Exertional Malaise (PEM) in Patients with ME and CFS: A Patient-Driven Survey" (2019) by a Leonard A. Jason team https://pmc.ncbi.nlm.nih.gov/articles/PMC6468435/pdf/diagnostics-09-00026.pdf#MyalgicE #PwME #MEeps #CFSME #CFIDS #SEID #PwLC
#PostCovidSyndrome #postcovid
@mecfs -
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From: "Assessment of Post-Exertional Malaise (PEM) in Patients with ME and CFS: A Patient-Driven Survey" (2019) by a Leonard A. Jason team https://pmc.ncbi.nlm.nih.gov/articles/PMC6468435/pdf/diagnostics-09-00026.pdf#MyalgicE #PwME #MEeps #CFSME #CFIDS #SEID #PwLC
#PostCovidSyndrome #postcovid @longcovid @mecfs -
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From: "Assessment of Post-Exertional Malaise (PEM) in Patients with ME and CFS: A Patient-Driven Survey" (2019) by a Leonard A. Jason team https://pmc.ncbi.nlm.nih.gov/articles/PMC6468435/pdf/diagnostics-09-00026.pdf#MyalgicE #PwME #MEeps #CFSME #CFIDS #SEID #PwLC
#PostCovidSyndrome #postcovid @mecfs @longcovid -
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From: "Assessment of Post-Exertional Malaise (PEM) in Patients with ME and CFS: A Patient-Driven Survey" (2019) by a Leonard A. Jason team https://pmc.ncbi.nlm.nih.gov/articles/PMC6468435/pdf/diagnostics-09-00026.pdf#MyalgicE #PwME #MEeps #CFSME #CFIDS #SEID #PwLC
#PostCovidSyndrome #postcovid
@mecfs @longcovid -
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From: "Assessment of Post-Exertional Malaise (PEM) in Patients with ME and CFS: A Patient-Driven Survey" (2019) by a Leonard A. Jason team https://pmc.ncbi.nlm.nih.gov/articles/PMC6468435/pdf/diagnostics-09-00026.pdf#MyalgicE #MEeps #CFSME #CFIDS #SEID #PwLC
#PostCovidSyndrome #postcovid @mecfs #MEcfs #CFS #PwME @longcovid
#LongCovid -
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From: "Assessment of Post-Exertional Malaise (PEM) in Patients with ME and CFS: A Patient-Driven Survey" (2019) by a Leonard A. Jason team https://pmc.ncbi.nlm.nih.gov/articles/PMC6468435/pdf/diagnostics-09-00026.pdf
#MyalgicE #PwME #MEeps #CFSME #CFIDS #SEID #PwLC
#mecfs #LongCovid
#PostCovidSyndrome #postcovid @mecfs @longcovid -
An illness with no cure? Doctor believes he’s found the answer to chronic fatigue syndrome
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"Scientists and those who champion them should never close ranks against empirical challenge and criticism."
George Monbiot on how criticism of the framing of CFS/ME as a psychiatric illness was portrayed as abusive to delegitimise patient concerns.
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"Scientists and those who champion them should never close ranks against empirical challenge and criticism."
George Monbiot on how criticism of the framing of CFS/ME as a psychiatric illness was portrayed as abusive to delegitimise patient concerns.
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"Scientists and those who champion them should never close ranks against empirical challenge and criticism."
George Monbiot on how criticism of the framing of CFS/ME as a psychiatric illness was portrayed as abusive to delegitimise patient concerns.
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"Scientists and those who champion them should never close ranks against empirical challenge and criticism."
George Monbiot on how criticism of the framing of CFS/ME as a psychiatric illness was portrayed as abusive to delegitimise patient concerns.
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"Scientists and those who champion them should never close ranks against empirical challenge and criticism."
George Monbiot on how criticism of the framing of CFS/ME as a psychiatric illness was portrayed as abusive to delegitimise patient concerns.
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A pilot cross-sectional investigation of symptom clusters & associations with patient-reported outcomes in #MyalgicEncephalomyelitis / #ChronicFatigueSyndrome & #PostCOVID19 Condition
"None of the four symptom clusters identified were unique to ME/CFS or #PCC"
https://link.springer.com/article/10.1007/s11136-024-03794-x
@mecfs @longcovid #LongCovid #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #MEcfs #CFS #PwME #MyalgicE #CFSME #MEeps #CFIDS #SEID #NeuroME #ME #MyE #millionsmissing
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From: @Notjustfatigue
Is it a coincidence that three times more women than men are living with #MECFS and #MECFS is our country’s most underfunded disease, with respect to the severity of disease and the number of people affected? No. This is the seventh video in a ten part video series by #NotJustFatigue
@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE #CFSME #MEeps #CFIDS #SEID #NeuroME1/
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Elizabeth has posted this video already on her #Notjustfatigue social media accounts & has kindly given me permission to share it on some other social media platforms I'm on. Please do check out the website for her non-profit #Notjustfatigue https://www.notjustfatigue.org
Hashtags:
@mecfs #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE #CFSME #MEeps #CFIDS #SEID #NeuroME #ME #MyE #millionsmissing -
Just one week to go with Lee Colligan’s marathon 2500km walk around Ireland in memory of his brother and in aid of ME.
People can donate to us at
https://www.idonate.ie/fundraiser/LeeColliganDonation link for Action for ME
https://joshcolligan.muchloved.com/#SevereME @mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE #CFSME #MEeps #CFIDS #SEID #NeuroME #millionsmissing #EndMECFS @severeme -
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More info on this Open Medicine Foundation Australia project: "SPOT-ME: Serial Pediatric Omics Tracking for ME/CFS"Aims include deeply profiling the biology of patients vs controls, testing cellular energy metabolism changes and evaluating brain function with MRI.
https://www.omfaustralia.ngo/pediatrics-me-cfs-deep-omics-profiling-and-longitudinal-study/
@mecfs #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE #CFSME #MEeps #CFIDS #SEID #NeuroME
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From presentation: "Through an illuminating blend of life transcription & deep imaginative projection, he shows how placing fiction into the stories of our damaged lives can remind us of who we are & who we might have been, even when so much of us has been taken away by illness"
@mecfs #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE #CFSME #MEeps #CFIDS #SEID #NeuroME
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Un hilo de 30 posts que aportan información, enlaces, infogragias, criterios de diagnóstico y guías de cuidado... con rigor científico para actualizarse en #EncefalomielitisMialgica.
Para profesionales de la #salud y cualquiera que necesite estar al día.
💙 Gracias a @/lauracayuela7 por el esfuerzo hecho dado su estado 💙👉 https://x.com/LauraCayuela7/status/1786345542164918562?t=fngVjKn8yVGwLUYz_9sTWA&s=19
#MastoMed #FediMed #PsychMastodon #MastoPsy #fisioterapeutas #enfermeras
#ME #cfsME #SevereME #pwME #pacientes #EncefalomielitisMialgicaSevera -
Un hilo de 30 posts que aportan información, enlaces, infogragias, criterios de diagnóstico y guías de cuidado... con rigor científico para actualizarse en #EncefalomielitisMialgica.
Para profesionales de la #salud y cualquiera que necesite estar al día.
💙 Gracias a @/lauracayuela7 por el esfuerzo hecho dado su estado 💙👉 https://x.com/LauraCayuela7/status/1786345542164918562?t=fngVjKn8yVGwLUYz_9sTWA&s=19
#MastoMed #FediMed #PsychMastodon #MastoPsy #fisioterapeutas #enfermeras
#ME #cfsME #SevereME #pwME #pacientes #EncefalomielitisMialgicaSevera -
Un hilo de 30 posts que aportan información, enlaces, infogragias, criterios de diagnóstico y guías de cuidado... con rigor científico para actualizarse en #EncefalomielitisMialgica.
Para profesionales de la #salud y cualquiera que necesite estar al día.
💙 Gracias a @/lauracayuela7 por el esfuerzo hecho dado su estado 💙👉 https://x.com/LauraCayuela7/status/1786345542164918562?t=fngVjKn8yVGwLUYz_9sTWA&s=19
#MastoMed #FediMed #PsychMastodon #MastoPsy #fisioterapeutas #enfermeras
#ME #cfsME #SevereME #pwME #pacientes #EncefalomielitisMialgicaSevera -
Un hilo de 30 posts que aportan información, enlaces, infogragias, criterios de diagnóstico y guías de cuidado... con rigor científico para actualizarse en #EncefalomielitisMialgica.
Para profesionales de la #salud y cualquiera que necesite estar al día.
💙 Gracias a @/lauracayuela7 por el esfuerzo hecho dado su estado 💙👉 https://x.com/LauraCayuela7/status/1786345542164918562?t=fngVjKn8yVGwLUYz_9sTWA&s=19
#MastoMed #FediMed #PsychMastodon #MastoPsy #fisioterapeutas #enfermeras
#ME #cfsME #SevereME #pwME #pacientes #EncefalomielitisMialgicaSevera -
Un hilo de 30 posts que aportan información, enlaces, infogragias, criterios de diagnóstico y guías de cuidado... con rigor científico para actualizarse en #EncefalomielitisMialgica.
Para profesionales de la #salud y cualquiera que necesite estar al día.
💙 Gracias a @/lauracayuela7 por el esfuerzo hecho dado su estado 💙👉 https://x.com/LauraCayuela7/status/1786345542164918562?t=fngVjKn8yVGwLUYz_9sTWA&s=19
#MastoMed #FediMed #PsychMastodon #MastoPsy #fisioterapeutas #enfermeras
#ME #cfsME #SevereME #pwME #pacientes #EncefalomielitisMialgicaSevera -
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"We need to be vigilant and educated to spot this charlatanry. We need therapeutic treatments that actually work and stop gaslighting those with post-acute viral disease."
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE #CFSME #MEeps #CFIDS #SEID #NeuroME #ME #MyE #millionsmissing #LongCovid #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #PASC #COVIDBrain
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A series of online workshops are running this summer for researchers, health professionals and people with ME, with the aim to raise the profile of #MECFS clinical research, increase collaboration, attract new researchers & formulate research priorities
https://meassociation.org.uk/2024/05/research-working-together-to-find-answers-to-me-cfs/
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE #CFSME #MEeps #CFIDS #SEID #NeuroME
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New from Finland:
"Randomized, double-blinded, placebo-controlled pilot study: Efficacy of faecal microbiota transplantation on chronic fatigue syndrome"
https://europepmc.org/article/ppr/ppr650412"#FMT was safe but did not relieve symptoms or improve the HRQOL of patients with CFS"
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #MyalgicE #PwME #MEeps #CFSME #CFIDS #SEID #NeuroME@[email protected] @cfs