#pwme — Public Fediverse posts

The official English version of this sympathetic paper has now been published

Guidance on Home-Based Care for People with Severe ME/CFS: A Transdisciplinary Expert Statement

https://link.springer.com/article/10.1007/s10354-026-01182-3

I have seen some praise for it.

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

2/

Alternative link that is only in English for the press release: "New research: muscle problems in post-COVID and ME/CFS cannot be explained by prolonged inactivity"

https://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind2607E&L=CO-CURE&P=R2

#PwME #LongCovid #CFS #MEcfs #PostCovid

@mecfs @longcovid

RE: https://mastodon.ie/@IrishMECFSAssociation/116954067547991100

One week to go. 15 people have marked themselves as interested in FB event. #MEcfs #PwME @mecfs

ME/CFS Science Cell and tissue enrichment in ME/CFS

https://mecfsscience.org/cell-and-tissue-enrichment-in-me-cfs/

Screenshot from Science for ME weekly update

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

ME Research UK:

A team or researchers in Regensburg, Bavaria have highlighted the lack of research around general anaesthesia in people with ME/CFS.

Read more: https://tinyurl.com/y645xc34

#mecfs #cfs #pwme @mecfs

ME Research UK:

Congratulations again to the team behind DISCOVER-ME, which includes Prof. Prof Simon Carding, who's ME Research UK-funded project played no small role in laying the groundwork for this €7.5million EU Horizon award. Read more https://tinyurl.com/8spcke28

#mecfs #cfs #pwme @mecfs

ME Research UK:

The team at Griffith University have published more findings from their brain imaging research, reporting glymphatic dysfunction in people with ME/CFS, which was associated with greater severity of sleep dysfunction and cognitive impairment. https://bit.ly/4vNixld

#mecfs #cfs #pwme @mecfs

One of this week's coming events -

PRIME Webinar 3: Post-Exertional Malaise (PEM)

Thursday, July 30
2-5 pm GMT

Announcement:
https://www.actionforme.org.uk/prime-workshop-on-post-exertional-malaise/

Registration (Zoom):
https://us02web.zoom.us/webinar/register/WN_l39rWIMYTlqqTF7nXixo1Q#/registration

Programme:
https://www.actionforme.org.uk/wp-content/uploads/2026/06/PRIME-Webinar-3-Programme-PEM.pdf

@mecfs @longcovid

#MEcfs #PwME #PEM #PostExertionalMalaise

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 July 20 - 26.

https://s4me.info/threads/news-in-brief-july-2026.51240/#post-709358

@mecfs @longcovid

#MEcfs #PwME #LongCovid #PwLC

"Glandular fever*’s not just the ‘kissing disease’...The risk of chronic fatigue [syndrome] means the ‘kissing disease’ should not be downplayed. Experts say there can be long-term consequences"

https://www.theaustralian.com.au/health/medical/glandular-fevers-not-just-the-kissing-disease-as-kaylee-mckeown-found-out/news-story/c97eaf0b87503ffc9db4a4abe0aeee6d?amp

Archive
https://archive.is/4Tf0p

*aka Mono

#MEcfs #PwME #CFS #ME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome @mecfs

Australian registry reports poor health and wellbeing in people living with ME/CFS

https://link.springer.com/article/10.1186/s12967-026-08618-9

HRQoL = Health-Related Quality of Life

Screenshot from latest Science for ME weekly update

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

7/
From the report:

“Almost two thirds of participants had started working in the recovery arena following their own recovery”

So *major* conflicts on interest.

#MEcfs #PwME #CFS
@mecfs @longcovid

From Germany 🇩🇪

Handgrip strength in children, adolescents, and young adults with suspected myalgic encephalomyelitis/chronic fatigue syndrome

https://link.springer.com/article/10.1186/s12967-026-08654-5

Screenshot from latest Science for ME weekly update

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

6/
Comment posted on my FB about the definition of recovery used

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

Irish ME Trust social gatherings next week in KILKENNY, CORK, LIMERICK, DUBLIN & BRAY

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

5/
Critical discussion on the Science for ME @s4me forum on this research. Thread started in 2024 but includes numerous posts in the last 24 hours:
https://s4me.info/threads/recovery-is-possible-lessons-in-%E2%80%98me-cfs%E2%80%99-recovery-from-youtube-goldsmiths.38843/

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

2/
I don't believe a lot of the testimony in this area. For example, after you have done lightning process you are supposed to not mention any impairments you have, that is part of the process. Similarly many people have conflicts of interest from making money from such approaches.

#PwME #CFS #ME @mecfs @longcovid #MEcfs #LongCovid

(Australia)
Emerge Australia has partnered with Edith Cowan University (ECU) to measure the impact of ME/CFS and long COVID

https://eaecu.au1.qualtrics.com/jfe/form/SV_d13rwqVw4UaOFEy

Screenshot from latest Emerge Australia email bulletin

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

Perioperative outcomes in patients with myalgic encephalomyelitis/chronic fatigue syndrome undergoing general anesthesia: a retrospective matched-pair study

https://link.springer.com/article/10.1186/s12871-026-04102-5

Screenshot from latest Science for ME weekly update

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

Proposed Framework for Personalized Severity Assessment in ME/CFS to Capture Variation in ME/CFS Severity and Life Impairment across Patients and Time (2024)

https://www.frontiersin.org/journals/immunology/articles/10.3389/fimmu.2024.1369295/full

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

Energy Points Chart

https://ltcovh.prod.acquia-sites.com/sites/default/files/2024-02/Energy%20EnvelopeENG.pdf

Modified from BE Ainsworth et al. Compendium of physical activities: An update of activity codes and MET intensities.

#MEcfs #LongCovid #PwME #CFS #Spoonies #Spoonie @mecfs @longcovid

RE: https://aus.social/@halcionandon/116959775697960381

Looking for a safe home for Anna.

More information:

https://www.thecanary.co/global/world-analysis/2025/04/01/anna-severe-me-cfs/

https://chuffed.org/project/161937-help-anna-escape

Please share and/or help.🩵

#Australia
#Melbourne
#disability
#mutualaid
#mecfs
#SevereME
#pwME
#domesticviolence

3/

Science Spotlight: Solve-Funded Study Shows Gastrointestinal Symptoms Are Core Features of ME/CFS

https://solvecfs.org/science-spotlight-solve-funded-study-shows-gastrointestinal-symptoms-are-core-features-of-me-cfs/

#MEcfs #PwME 

@mecfs

"Is diagnosis of CFS harder if symptoms are mild or fluctuate?"

https://mypatientadvice.co.uk/knowledge-base/is-diagnosis-of-cfs-harder-if-symptoms-are-mild-or-fluctuate/

"This article explores the complexities of diagnosing mild or fluctuating ME/CFS within the UK healthcare system" but still relevant to people elsewhere

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

1/

RE: https://mastodon.ie/@IrishMECFSAssociation/116954067547991100

Hope to see a few of you at this. 👋
#Louth #MEcfs #LongCovid #PwME @mecfs @longcovid #mastodaoine

Informal ME/CFS social meet-up in Dundalk hosted by Tom Kindlon @tomkindlon on Wednesday, August 5

https://irishmecfs.org/blog/dundalk-informal-mecfs-social-meet-up-on-wednesday-august-5-hosted-by-tom-kindlon

Hopefully we’ll see some of you there.

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

Symptom Tracker

https://ltcovh.prod.acquia-sites.com/sites/default/files/2024-02/Symptom%20tracker%20ENG.pdf

#MEcfs #LongCovid #PwME #CFS @mecfs @longcovid

Check out the latest News in Brief (July 13 - 19) 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-july-2026.51240/#post-707945

Anyone can read public forum posts but if you become a forum member then you can join the discussion 😁

@mecfs @longcovid

#MEcfs #PwME #LongCovid #PwLC #Science4ME #S4ME

RE: https://mastodon.ie/@IrishMECFSAssociation/116952101512677780

As well as being quoted in this, I presented the journalist with various individuals who were available for interview including the two interviewed.
#MEcfs #PwME #CFS @mecfs

Article can be read for free here: https://www.irishtimes.com/health/2026/07/20/chronic-fatigue-syndrome-care-services-are-not-sufficient-to-meet-needs-hse-admits/

Thanks to everyone who made themselves available for interview including the two people quoted

#mecfs #cfs #pwme @mecfs