#pwme — Public Fediverse posts

“Trial By Error: Some Things I’ve Recently Read…Ponting on BPS, Viral Reactivation, and ME/CFS and HIV/AIDS” by David Tuller DrPH

https://virology.ws/2026/08/19/trial-by-error-some-things-ive-recently-read-ponting-on-bps-viral-reactivation-and-me-cfs-and-hiv-aids/

#mecfs #longcovid #cfs #pwme @mecfs @longcovid

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

https://www.itv.com/watch/news/i-miss-my-freedom-young-woman-with-chronic-fatigue-shares-reality-of-living-with-me/l4gd5x5

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/s11019-026-10388-6

https://s4me.info/threads/me-cfs-and-the-emotional-toll-of-persistent-disbelief-from-epistemic-to-affective-injustice-2026-walter.51834/

Screenshot from latest Science for ME weekly update

#MEcfs #PwME @mecfs

From Austria 🇦🇹

Experimental hypoxia to probe neuro-metabolic and vascular dysregulation in ME/CFS: a multimodal proof-of-concept MRI study

https://www.medrxiv.org/content/10.64898/2026.08.10.26359935v1

Screenshot from latest Science for ME weekly update

#MEcfs #PwME #CFS #ME #MyalgicE
@mecfs

The French social security website Ameli has updated its guideline on ME/CFS

https://www.ameli.fr/paris/assure/sante/themes/asthenie-fatigue/un-cas-particulier-le-syndrome-de-fatigue-chronique-ou-encephalomyelite-myalgique

https://actu.fr/societe/une-maladie-qui-touche-plus-de-700-000-personnes-en-france-est-enfin-reconnue-par-la-securite-sociale_64643487.html

https://s4me.info/threads/news-from-france.18119/page-9#post-713031

Screenshot from latest Science for ME weekly update

#MEcfs #PwME @mecfs

The Economics of Survival by Fred Rossi: "Twelve Percent"

https://darthfoo.substack.com/p/twelve-percent

https://s4me.info/threads/fred-rossi-writings-related-to-me-cfs.47324/post-713080

Screenshot from latest Science for ME weekly update

#LongCovid #MEcfs #PwME #chronicillness #Spoonie @mecfs @longcovid

3/
Yesterday, Amsterdam University created the web page 'Muscle abnormalities in post-COVID and ME/CFS cannot be explained by prolonged inactivity' in English

https://www.amsterdamumc.org/en/research/news/muscle-abnormalities-in-post-covid-and-mecfs-cannot-be-explained-by-prolonged-inactivity

#MEcfs #LongCovid #PwME #CFS

@mecfs @longcovid

9/
Trial by Error by David Tuller CFS "Recovery" Findings Might Be "Suppressed," Says Report

https://virology.ws/2026/08/11/trial-by-error-cfs-recovery-findings-might-be-suppressed-says-report/

https://s4me.info/threads/recovery-is-possible-lessons-in-%E2%80%98me-cfs%E2%80%99-recovery-from-youtube-goldsmiths.38843/post-712805

Screenshot from latest Science for ME weekly update

#MEcfs #PwME @mecfs

Wales Petition: Take urgent action so those with Severe Myalgic Encephalomyelitis in Wales are no longer left without vital medical care

https://petitions.senedd.wales/petitions/247069

https://s4me.info/threads/united-kingdom-news-including-uk-wide-england-ni-and-wales-see-separate-thread-for-news-from-scotland.29404/post-712702

Screenshot from latest Science for ME weekly update

#SevereME #MEcfs #PwME #SevereMECFS #VerySevereME @mecfs

Science for ME @s4me Fact Sheet 4: Management of severe and very severe ME/CFS

https://s4me.info/docs/Management%20of%20severe%20and%20very%20severe%20MECFS.pdf

https://s4me.info/threads/fact-sheet-4-management-of-severe-and-very-severe-me-cfs.51793/

Screenshot from latest Science for ME weekly update

#SevereME #MEcfs #PwME #SevereMECFS #VerySevereME @mecfs

ME Research UK:

An article entitled “Guidance on Home-Based Care for People with Severe ME/CFS: A Transdisciplinary Expert Statement” has been published.

Read more: https://tinyurl.com/yc264wbm

#severeme #verysevereme #severemecfs #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @mecfs

ME Research UK:

In the first deep-dive of our weekly Symptom Saturday series, we unpack the reality of PEM – including its multi-dimensional nature, lived experiences, and key insights from research such as associated physiological changes.

Read more: https://tinyurl.com/PEMsymptomsat

#MEcfs #PEM #PwME @mecfs @longcovid #LongCovid

Check out the latest News in Brief (August 10-16) from the Science for ME forum, a weekly summary of ME/CFS & Long Covid news including research, advocacy, and coming events.

https://s4me.info/threads/news-in-brief-august-2026.51739/#post-713907

Public forum posts can be read by anyone, but if you'd like to contribute to the discussion then you'll need to become a forum member (it's free) 😁

https://s4me.info/threads/welcome.38181/

@mecfs @longcovid

#MEcfs #PwME #LongCovid #PwLC #S4ME

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 10 - 16.

https://s4me.info/threads/news-in-brief-august-2026.51739/#post-713907

@mecfs @longcovid

#MEcfs #PwME #LongCovid #PwLC

Jason Arday was vilified yet some white professors whose ideas disable+kill #pwME continue untroubled…

@[email protected]
#ME #Chronicillness #LC
#PEM #POTS #LivesWeCannotLive
@[email protected]
@[email protected]
@[email protected]
@[email protected]
@[email protected]

From Sweden 🇸🇪

Cerebrospinal fluid opening pressure in relation to symptomatology and craniocervical anatomy in patients with myalgic encephalomyelitis/chronic fatigue syndrome

https://www.frontiersin.org/journals/medicine/articles/10.3389/fmed.2026.1869714/full

Screenshot from latest Science for ME weekly update

#MEcfs #PwME @mecfs

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) gene expression signatures for the identification of compounds targeting metabolism

https://www.researchsquare.com/article/rs-10076074/v1

Screenshot from latest Science for ME weekly update

#MEcfs #PwME @mecfs

Prof Chris Ponting reports they now expect to provide an update on the DecodeME research in 2027

https://skywriter.blue/@cgatist.bsky.social/3msfkibyxqs23

https://institute-genetics-cancer.ed.ac.uk/research/support-our-research/me-cfs-research

https://www.actionforme.org.uk/research-campaigns/our-research-work/sequenceme-long-covid/

Screenshot from latest Science for ME weekly update

#MEcfs #PwME @mecfs

“On BPS [BioPsychoSocial] & disease causation: George Davey Smith’s cautionary tale” by Prof Chris Ponting

https://mecfsresearchreview.me/2026/08/11/on-bps-disease-causation-george-davey-smiths-cautionary-tale/

#MEcfs #PwME @mecfs

Filmmaker Rolf Orthel: The price of independence, the burden of ME

https://meglobalchronicle.wordpress.com/2026/08/08/filmmaker-rolf-orthel-the-price-of-independence-the-burden-of-me/

Screenshot from latest Science for ME weekly update

#MEcfs #PwME @mecfs

"Fact Sheet 3: ME/CFS: Information for Medical Professionals"

https://s4me.info/threads/fact-sheet-3-me-cfs-information-for-medical-professionals.51746/

@mecfs

4/4

#MEcfs #PwME #S4ME

"Fact Sheet 2: Post-exertional malaise (PEM)"

https://s4me.info/threads/fact-sheet-2-post-exertional-malaise-pem.51745/

@mecfs

3/4

#MEcfs #PwME #PEM #S4ME

"Fact Sheet 1: Introduction to ME/CFS"

https://s4me.info/threads/fact-sheet-1-introduction-to-me-cfs.51744/

@mecfs

2/4

#MEcfs #PwME #S4ME

New Fact Sheet from the Science for ME (S4ME) Forum:

"Management of severe and very severe ME/CFS"

https://s4me.info/threads/fact-sheet-4-management-of-severe-and-very-severe-me-cfs.51793/

This is the fourth fact sheet published by the S4ME forum. I'll post links to the other three in the replies.

@mecfs

1/4

#MEcfs #SevereME #PwME #S4ME

Comments/experiences welcomed on this query from one of our members:

“Do you know please what medication is best tolerated for people with ME for osteoporosis? I have multiple chemical sensitivities. probably mcas also”

#PwME #MEcfs #CFS @mecfs

Petition to pause the McMaster's Lightning Process (FALCON) trial

https://www.change.org/p/long-covid-patients-deserve-better-pause-mcmaster-s-falcon-lightning-process-trial

https://s4me.info/threads/mcmaster-university-conducting-an-lp-trial-falcon.51303/post-711240

Screenshot from latest Science for ME weekly update

#LongCovid #MEcfs #PwME @mecfs @longcovid

Informal ME/CFS social meet-up in Dundalk hosted by Tom Kindlon @tomkindlon on Wednesday, August 26

https://irishmecfs.org/blog/dundalk-informal-mecfs-social-meet-up-on-wednesday-august-26-hosted-by-tom-kindlon

Hopefully we’ll see some of you there.

#MEcfs #PwME #CFS #MyalgicEncephalomyelitis #longcovid #Dundalk @mecfs @longcovid

I have been asked for my opinion on an ME/CFS research proposal. I want to suggest an activity monitor or step counter as an outcome measure.

Unfortunately budget isn’t huge so would need to be two figures in US$/€/£ per unit. Suggestions welcomed.

#mecfs #pwme #cfs @mecfs

8/

“‘Recovering’ denotes having significantly improved in health and capacity, while not being completely free of symptoms.”

People can’t tell the future. People can’t know they will reach 100%. They might hope they will but until they have reached it, they haven’t recovered.
#cfs #pwme
@mecfs #mecfs

A Life Hidden: The Burden of Chronic Illness That I Rarely Talk About

https://alifehidden.com/2026/07/30/burden/

Screenshot from latest Science for ME weekly update

#chronicillness #MEcfs #PwME #CFS #ME #MyalgicE
@mecfs