#cfs — Public Fediverse posts

"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/
&
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

#MyalgicEncephalomyelitis #MEcfs #PwME #CFS @mecfs

@DanielMenjivar @mecfs

Never your fault.
Sometimes I choose to push too hard because I want to do something. Sometimes either #Fibromyalgia or #CFS/ME #PEM are just unpredictable so a thing I could do yesterday I can't do today.

I hope your latest PEM settles soon.

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."

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

"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.

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

(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.

https://culturenight.ie/event/what-about-m-e/

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

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

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

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

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

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

RE: https://mastodon.acm.org/@avandeursen/117094249041371164

So many donations for the Long COVID fund raiser connected to my Amsterdam marathon run in October: thank you all!

We doubled the target to €2100, aiming to raise €50 per km!

The cause resonates: it seems many of us know someone suffering from long COVID. Please support research, on causes and treatments, via https://supporta.com/htg9/6mynzkh7vh.

Thank you so much!

#longcovid #stichtinglongcovid #cfs #mecfs #mecvs

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

October 18 I'm running the Amsterdam marathon! I'm using it to raise money for the Dutch Long COVID Foundation.

For 500,000 people (1 in 36) in NL, life has come to a stand-still due to Long COVID. No treatment; doctors nor patients know what to do.

That's why I'm aiming to raise €1050 in my run, €25,- for each of the 42K. Your donation for as many kms as you can will make a difference!

Will you support me? Thanks!

https://supporta.com/htg9/6mynzkh7vh

#longcovid #stichtinglongcovid #cfs #mecfs #mecvs

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

New #cfp added for ConFoo Montreal in February 2027.
More details at https://cfp.watch/cfps/2027-confoo-montreal/.

#cfs #callforpapers #callforproposals #speakers #callforspeakers #publicspeaking #speakerlife

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

4/
Comment from me:

Note there is also a big question mark about whether the people reporting recovery in this report were actually recovered. "Recovery" can be used in a wishy-washy way and it seems like this was the case here:

#mecfs #pwme #cfs
@mecfs

3/
Extract from:
Trial By Error: CFS “Recovery” Findings Might Be “Suppressed,” Says Report By David Tuller

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

#MEcfs #PwME #CFS #ME #MyalgicE

@mecfs

🧵
Trial By Error: CFS “Recovery” Findings Might Be “Suppressed,” Says Report
By David Tuller

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

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

1/

I'm relishing feeling up to doing hands-on things again. Knitting. Crocheting. Gardening. I still have to do most things in little bites with plenty of rest in between, but seeing progress is heartening. (And the fresh air and movement out in the garden will be doing me good too.)
It's inconsistent and it's slow, but *I am getting better*.
#CFS #ChronicIllness #hope

Solve ME/CFS Initiative:

ME/CFS-Associated Changes in Gut Microbes and Gut Metabolites and Their Relation to Neurocognitive Symptoms
August 6, 2026

https://solvecfs.org/me-cfs-associated-changes-in-gut-microbes-and-gut-metabolites-and-their-relation-to-neurocognitive-symptoms/

#mecfs #cfs @mecfs

Эволюция планировщиков ядра Linux — от O(1) до CFS и EEVDF

Планировщик процессов — одна из важнейших подсистем ядра Linux. Именно он определяет, какой поток получит процессорное время в каждый конкретный момент. Несмотря на многоядерность современных компьютеров, количество одновременно выполняемых задач практически всегда значительно превышает доступные вычислительные ресурсы. Поэтому ядру необходимо постоянно принимать решения о распределении процессорного времени между задачами. Привет! Я Никита, разработчик системного ПО

https://habr.com/ru/companies/selectel/articles/1067956/

#cfs #selectel #linux #планировщик

“The more ill you become, the less care you receive” - Severe ME Inquiry Report

Article
https://www.actionforme.org.uk/the-more-ill-you-become-the-less-care-you-receive-severe-me-inquiry-report/

Report
https://www.actionforme.org.uk/wp-content/uploads/2026/08/Severe-ME-Inquiry-Report-August-2026-Action-for-ME-and-the-25-ME-Group.pdf

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

“This exhaustion is cellular”: Excerpts from the new book ‘What Is Myalgic Encephalomyelitis Like?’ @thesicktimes

https://thesicktimes.org/2026/08/08/this-exhaustion-is-cellular-excerpts-from-the-new-book-what-is-myalgic-encephalomyelitis-like/

#MyalgicEncephalomyelitis #PwME #MEcfs #CFS @mecfs