#cfids — Public Fediverse posts
Live and recent posts from across the Fediverse tagged #cfids, 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 -
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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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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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"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
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"The Role of Leptin & Inflammatory Related Biomarkers in Individuals with #MyalgicEncephalomyelitis/#ChronicFatigueSyndrome"
2.12 at:
https://mdpi.com/2504-3900/80/1/6Conference abstract for Younger study involving "once-daily random plasma samples over 10–12 weeks"
Summary: "symptoms severity was associated with hyperleptinemia, inflammation and within-individual-variability of these biomarkers."
#MEcfs #CFS #PwME #leptin #MyalgicE #ME #MyE #MEeps #CFSME #CFIDS #SEID #NeuroME @mecfs