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@katybrc.bsky.social Sep 28, 2026, 3:49 PM

It doesn't get easier, being so completely dependent on others for one's survival after losing one's health & independence.
I'm endlessly grateful to family & friends but I so wish they were spared the impact of this terrible illness.
💙
#ME #pwME #GreatestMedicalScandal

@meassociation.org.uk Sep 28, 2026, 2:31 PM

Medical Matters: Sleep Apnoea

Q: What are the symptoms of Sleep Apnoea, does it have any similarities to ME/CFS, and how might it be treated?

A: https://meassociation.org.uk/medical-matters/items/sleep-apnoea/

#pwME #MECFS #Sleep

IMAGE DESCRIPTION: Photo of Dr Charles Shepherd with the following text: "What are the symptoms of Sleep Apnoea, does it have any similarities to ME/CFS, and how might it be treated? Please click the link to read the answer in the Medical Matters database"

@irishmecfsassoc.bsky.social Sep 28, 2026, 11:37 AM

2 days to go
#MEcfs #LongCovid #CFS #PwME

@michaelnobbs.bsky.social Sep 28, 2026, 11:19 AM

I’m starting the week feeling very tired, but was cheered by today’s #MorningView.

I hope your week is starting well and that you can give yourself the week you need.

Go gently ❤️🐌

#MECFS #pwME #Wales #CreativeHabit

@swastrosarah.bsky.social Sep 28, 2026, 10:05 AM

Thanks to Dr Sanjay Gupta's fb feed for this cartoon. #pwME #LongCovidME

An elephant with its eyes closed. Blindfolded, a cardiologisdt holds its trunk saying, 'POTS'; a neurologist holds a tusk saying 'FND'; a rheumatologist holds an ear saying, 'Fibromyalgia'; a gastroenterologist holds its girth saying, 'IBIS'; a metabolic specialist holds a knee saying 'chronic fatigue syndrome'; a psychiatrist grips its tail saying, 'generalised anxiety disorder'

@thewestonmale.bsky.social Sep 28, 2026, 8:49 AM

@cgatist.bsky.social
@meassociation.org.uk
@actionforme.bsky.social
#prime26 #PRIMEsymposium #pwme #me/cfs #mecfs #MyalgicEncephalomyelitis #buildingcapacity

@benbloodworth.bsky.social Sep 28, 2026, 8:44 AM

Lumber puncture and yet I could still feel the sensations associated with YN as I visualised down and back up my legs but not the surgery itself!?

I don’t understand how it works or actually interacts with a #pwME but generally it’s very positive…especially the lying down/duvet/eyemask parts! 🤍

@cgatist.bsky.social Sep 28, 2026, 8:20 AM

The 2026 PRIME symposium kicks off with reflections from Kelly McLellan on the importance of Patient and Public Involvement in ME/CFS research. #Prime26 #pwME #mecfs

@tomkindlon.bsky.social Sep 28, 2026, 1:03 AM

Role of haptoglobin and its phenotypic variations in the pathophysiology of myalgic encephalomyelitis and long COVID — Moezzi PhD thesis.

umontreal.scholaris.ca/items/f5770e...

#MEcfs #LongCovid #CFS #PwME

@tomkindlon.bsky.social Sep 28, 2026, 12:58 AM

Stanford's Genome Technology: Center Community Symposium on the Molecular Basis of ME/CFS
Recordings from the symposium sessions are now available.

www.youtube.com/playlist?lis...

#MEcfs #CFS #PwME

@tomkindlon.bsky.social Sep 28, 2026, 12:55 AM

The Severe & Very Severe ME Research Registry has been created. It gives people with severe and very severe ME from Germany, Austria, & Switzerland the opportunity to participate in research through home visits

severe-me-registry.de

#SevereME #MEcfs #CFS #PwME #VerySevereME #ChronicFatigueSyndrome

@s4me.info Sep 27, 2026, 8:50 PM

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 Sept. 21 - 27.

s4me.info/threads/news...

#MEcfs #PwME #LongCovid #PwLC

@tomkindlon.bsky.social Sep 27, 2026, 4:26 PM

Two researchers have explored how language can be used to tackle epistemic injustice in healthcare for people with ME/CFS. Read more: tinyurl.com/bdnwr8n6

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
#MyalgicE #CFSME #MEeps

Researchers have proposed two ways language can be used to tackle epistemic injustice in healthcare:

Look closely at the words used in healthcare. Identify language that leaves out people's experiences or reinforces unfair assumptions, then work with people with the disease, their families, healthcare professionals, researchers and policymakers to replace it with fairer and more inclusive language
Make language part of how unfairness is investigated and taught. When examining why some people are not heard or included in medical knowledge, also consider how everyday terms and labels shape attitudes and decisions. Help students and healthcare staff recognise and question these hidden assumptions.
o
O
7
Reminder: Epistemic injustice is the harm done to a person which is related to their own knowledge or personal experience.
■% INFORM. INFLUENCE. INVEST. RESEARCH UK SCO36942
Wallat and Hille. The American Journal of Bioethics (2026)

@tomkindlon.bsky.social Sep 27, 2026, 4:22 PM

25 adolescents with ME/CFS found to have slower information-processing speeds, poorer sleep, reduced quality of life, and poorer mental wellbeing compared with 25 healthy controls of the same age.

Read more: bit.ly/4dUz7sZ
Link to research paper: bit.ly/4rzVKc8

#mecfs #cfs #pwme #cfsme

ME/CFS in Adolescence: Effects on cognition and wellbeing
25 young people with mild or moderate ME/CFS aged 12 to 19 years were compared with 25 healthy controls of the same age.
Results showed that those with ME/CFS had:

Greater symptom burden including poorer sleep and reduced quality of life
Slower processing speeds
'?

Issues with attention and working memory
Reduced `psychosocial wellbeing'
Note: This study used a small sample size and did not include those with more severe froms of the disease.
4
INFORM. INFLUENCE. INVEST.
SCO36942
Chau, T., Josev, E. K., Scheinberg, A., at al. J. Paediatr. Child Health. 2026; 1-13.

@tomkindlon.bsky.social Sep 27, 2026, 3:37 PM

From @meresearchuk.bsky.social

Exciting research funded by ME Research UK was showcased at the ISLC-PAIS 2026 conference!

Discover more about the presentations here: tinyurl.com/246rj47b

#mecfs #cfs #pwme #longcovid

RESEARCH UK
ISLC-PAIS 2026: ME Research UK-funded research highlights
ME Research UK-funded research presented at ISLC-PAIS 2026 covered topics including:

Muscle abnormalities

Gene regulation
Fat metabolism Cellular waste Q=1, • •• • e _

Blood vessel Post Subtle exertional changes in abnormalities malaise brain tissue
Together, the studies illustrated the range of biological differences being identified in ME/CFS, and in long COVID, while also highlighting important questions for future research.
INFORM. INFLUENCE. INVEST.
SCO36942

@mefoggydog.bsky.social Sep 27, 2026, 3:35 PM

31 days to go until #BedForSevereME!

Check out the annual awareness and fundraiser event on our website.

mefoggydog.org

#pwME #MEcfs #SevereME

@tomkindlon.bsky.social Sep 27, 2026, 3:32 PM

From @meresearchuk.bsky.social

In the fourth deep-dive of our weekly Symptom Saturday series, we explore debilitating fatigue in ME/CFS – including lived experience, research insights, related diagnostic delays, and management.

#MEcfs #CFS #PwME

FATIGUE IN ME/CFS
Fatigue in ME/CFS is not "just tiredness", it is a debilitating, unrelenting exhaustion that is inadequately relieved by rest and drastically reduces one's capacity to carry out daily activities.
• ME/CFS-related research highlights: • Low heart rate variability linked to higher fatigue levels. • Potential functional/structural brain differences, such as in prefrontal cortex, related to fatigue. • A study showed that whilst the nature of fatigue across different chronic disease cohorts was similar, people with ME/CFS had much higher levels of total fatigue than any of the other groups. Although the studies have limitations, they are a starting point for further research.

• e •
INFORM. INFLUENCE. INVEST. Full overview and references at [tinyurl.com/fatiguesymptomsat]
ChiPlitA RESEARCH UK SCO36942

@covidchronicles.bsky.social Sep 27, 2026, 2:40 PM

Day 1479—Nursing a PEM crash and this exchange from "Inside Britain’s Plague Nightmare | EP101+102 | The Black Death With Dan Snow" caught my attention.

In the absence of facts, we always fill the gaps. With bullshit. It's evidence-based medicine or bust. Rigueur, esti.

#LongCOVID #MECFS #pwME

November 1348: At the height of the Black Death, people flocked to plague-riddled Canterbury to purchase a pilgrim badge — a medieval ampulla filled with water tinged with the blood of Saint Thomas Becket — in the hope it would help heal them.

Historian Dan Snow:
"It's desperately sad to think of people going to all this effort to avoid the plague, to try to save themselves, actually might have put themselves in harm's way."

Dr Cressida Lang:
"Inevitably, but the draw to come here to seek healing and comfort was just so strong."