#pwme — Public Fediverse posts
Live and recent posts from across the Fediverse tagged #pwme, aggregated by home.social.
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“French state health insurance updates classification of chronic fatigue [syndrome]”
“Illness is no longer classified as psychological”
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Todd Davenport PhD’s thread on ME/CFS vs Long Covid
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Our latest News in Brief summary has headlines and links to further reading about ME/CFS, Long Covid, and related news for the week of August 17 - 23.
https://s4me.info/threads/news-in-brief-august-2026.51739/#post-715428
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ME/CFS Australia 2026 Scholarship/Grant recipients
Tara Sallows: LaTrobe Uni (Dr Sarah Annesley)
Wenjie Shan: Uni of Melbourne (Dr Chris Armstrong)
Urooj Ishrat: Griffith Uni (Professor Sonya Marshall-Gradisnik, Dr Natalie Eaton-Fitch, Dr Kiran Thapaliya) -
PAIS conference Amsterdam 26 - 29 August.
https://islc-pais.org/program/
Speakers include Danny Altmann, Eva Untermayr, Carmen Scheibenbogen, Rob Wüst and Mark Faghy.
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Impact of PEM in ME/CFS#PEM #MEcfs #PwME #CFS #MyalgicEncephalomyelitis #longcovid
@mecfs -
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Last week, Simmaron Research Centre highlighted that “one of the biggest challenges in ME/CFS research has been patient heterogeneity”. Therefore, ME Research UK has written about why this matters and how it can blur research findings.
Read more: https://bit.ly/4x11hdC
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Using advanced MRI techniques, ME Research UK-funded researchers at Griffith University have detected subtle alterations in brain tissue microstructure in ME/CFS & long COVID, supporting the idea that the illnesses share underlying neurological features https://bit.ly/4i8mYn9
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ME Research UK:
In a two-part episode of "Long COVID The Answers", Dr Funmi Okunola speaks with ME Research UK grant holder Professor Rob Wüst, and Professor Mark Faghy about PEM in ME/CFS and #longCOVID, and the upcoming ISLC-PAIS conference.
Read more: https://tinyurl.com/2wajkbux
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ME Research UK:Careers, relationships, family life, hobbies, basic tasks – PEM can tear through it all.
The sheer symptom burden and ripple effects can impact mental health. We urge anyone in distress to consider reaching out to appropriate organisations e.g. Mind (https://mind.org.uk)
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ME Research UK:We are deeply appreciative that the community has shared their experiences with us. The accounts detailing the devastation of post-exertional malaise (PEM) in ME/CFS are both moving and profoundly informative.
https://www.meresearch.org.uk/the-experience-and-impact-of-post-exertional-malaise-in-me-cfs/
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From ME Research UK:
Whilst every individual’s experience is unique, it is striking how many shared themes emerge across the PEM survey responses. When people from all walks of life describe similar physical experiences, it offers a powerful insights into ME/CFS.
https://tinyurl.com/PEMimpactME
@mecfs #PEM #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
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The ones progress forgot: medically unexplained conditions and the myth of recovery
https://www.tandfonline.com/doi/abs/10.1080/09687599.2026.2709527
Thread with some extracts
https://s4me.info/threads/the-ones-progress-forgot-medically-unexplained-conditions-and-the-myth-of-recovery-2026-sirotiak.51781/#LongCovid #MEcfs
@mecfs @longcovid #PwME #CFS #ME #MyalgicE -
On this page you will find ongoing ME/CFS clinical trials looking for participants
https://ammes.org/clinical-trials/All the trials on the page currently seem to be in the US
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #LongCovid @mecfs @longcovid
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"Severe-Very Severe Myalgic Encephalomyelitis: What GPs need to Know" 60-second Guide
whānau means extended family
https://anzmes.org.nz/world-me-day/severe-me-day/severe-me-day-2026/
#MyalgicEncephalomyelitis #MEcfs #PwME #CFS #ME #MyalgicE
@mecfs
#SevereME -
I have just changed my profile: now 32 years with #severeME (more than half my life) (ill 37.5 years)☹️
Hope research progress is made soon🙏
Links:
Lists of research funds:
https://europeanmecoalition.com/resources-for-researchers/
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https://me-pedia.org/wiki/Category:Research_initiatives- My story: https://www.independent.ie/lifestyle/health-wellbeing/no-one-chooses-to-have-me-everything-changed-when-i-became-ill/a/150853043.html
Non-paywalled version of my story:
https://archive.is/IXpod -
Poignant words from Anil van der Zee
"Not an Advocate. Not Your Silver Lining Porn. Just Desperation"
https://anilvanderzee.com/not-an-advocate-not-your-silver-lining-porn-just-desperation/It ends:
"I’m really not interested in compliments. I need you to fight with me or for me. For us! We and I need your help moving things forward." -
"How to interpret clinical trial results for Long COVID"
"Even when results are 'statistically significant, the treatment might not actually work."
https://thesicktimes.org/2026/07/21/how-to-interpret-clinical-trial-results-for-long-covid/
Equally relevant for other conditions. Some well-known ME/CFS and long Covid figures are quoted.
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(Galway)
We have been asked to highlight this free event. Association secretary, Orla Ní Chomhraí, will be part of a post-show discussion (8PM-8:30 PM).People can attend in person or online.
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RE: https://disabled.social/@tomkindlon/117128147434986164
Link where people anywhere can watch this piece on an ambulatory wheelchair user
https://www.youtube.com/watch?v=_kYpNojX3es
#PwME #Spoonies #MEcfs #CFS #Spoonie @mecfs -
“Trial By Error: Some Things I’ve Recently Read…Ponting on BPS, Viral Reactivation, and ME/CFS and HIV/AIDS” by David Tuller DrPH
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Sympathetic 3-minute TV piece:
'I miss my freedom': Young woman with chronic fatigue shares reality of living with ME.I had to set my VPN to the UK to be able to watch it
Discusses fluctuating disabilities and how she uses a mobility aid despite being able to walk a little (like myself)
#MEcfs #PwME #CFS #ME #MyalgicE
@mecfs
#chronicillness #Spoonie -
ME/CFS and the emotional toll of persistent disbelief: from epistemic to affective injustice
Free fulltext:
https://link.springer.com/article/10.1007/s11019-026-10388-6Screenshot from latest Science for ME weekly update