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@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

@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

@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

@tomkindlon.bsky.social Sep 27, 2026, 12:18 AM

(Geelong & Hawthorn, Victoria, Australia)

People with ME/CFS sought for treatment trial

impact-trials.deakin.edu.au/trial/tri-me...

#MEcfs #PwME #CFS #MyalgicEncephalomyelitis #ChronicFatigueSyndrome

@paleblurs.bsky.social Sep 26, 2026, 2:51 PM

Chronic Fuck off Syndrome, more like #CFS #morelike

@rowdy.codes Sep 26, 2026, 2:03 PM

New #cfp added for WeTest Athens in May 2027. More details at cfp.watch/cfps/2027-we.... #cfs #callforpapers #callforproposals #speakers #callforspeakers #publicspeaking #speakerlife

@tomkindlon.bsky.social Sep 26, 2026, 1:11 PM

“Blistering New Monbiot Column on ME/CFS Mistreatment, Neglect” By David Tuller
virology.ws/2026/09/26/t...

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

Trial By Error: Blistering New Monbiot Column on ME/CFS Mistreatment, Neglect
Leave a Comment / By David Tuller / 26 September 2026
By David Tuller, DrPH

George Monbiot, the British investigative journalist and longtime contributor to The Guardian, has written a corker of a column about the mistreatment and abuse of people with ME/CFS, including those with Long COVID. This newest piece follows two of Monbiot’s previous Guardian essays—in March, 2024, and October, 2024–that were equally blunt about the failures of the medical and academic establishments in this domain.

@rowdy.codes Sep 26, 2026, 10:03 AM

New #cfp added for Voxxed Days Ticino in February 2027. More details at cfp.watch/cfps/2027-vo.... #cfs #callforpapers #callforproposals #speakers #callforspeakers #publicspeaking #speakerlife

@rowdy.codes Sep 26, 2026, 5:58 AM

New #cfp added for WebExpo (@webexpo.bsky.social) in May 2027. More details at cfp.watch/cfps/2027-we.... #cfs #callforpapers #callforproposals #speakers #callforspeakers #publicspeaking #speakerlife

@rowdy.codes Sep 26, 2026, 5:57 AM

New #cfp added for JSWorld Conference in March 2027. More details at cfp.watch/cfps/2027-js.... #cfs #callforpapers #callforproposals #speakers #callforspeakers #publicspeaking #speakerlife

@rowdy.codes Sep 26, 2026, 5:57 AM

New #cfp added for Swetugg Stockholm in February 2027. More details at cfp.watch/cfps/2027-sw.... #cfs #callforpapers #callforproposals #speakers #callforspeakers #publicspeaking #speakerlife

@tomkindlon.bsky.social Sep 26, 2026, 12:24 AM

Information on ME/CFS

meassociation.org.uk/wp-content/u...

#MEcfs #PwME #CFS #MyalgicEncephalomyelitis #ChronicFatigueSyndrome

INFORMATION ON ME/CFS
FACTS ABOUT ME/CFS
ME/CFS is a multisystem disease
Involving the brain, muscle, immune and neuroendocrine (hormone producing) systems.
ME/CFS is a long-term illness that causes substantial disability Causing an inability to perform everyday activities of daily living (bathing, dressing, cooking, eating etc)
ME/CFS affects a person's quality of life
People with the disease have a lower quality of life in comparison to other serious conditions
Treatment for ME/CFS There is currently no cure or effective treatment for the disease. Pacing, activity and energy management can help some to stabilise symptoms. Prevalence
Research estimates around 400,000 people in the UK have ME/CFS-62% increase in previous figures. Some people with Long Covid fit diagnostic criteria for ME/CFS.
Severity
75% may be mild/moderate with relapses that may be severe in nature. 25% of people with ME/CFS are severely or very severely affected - needing 24/7 care
THE ME ASSOCIATION
me
Registered Charity
Number 801279
Myalgic Encephalomyelitis /Chronic Fatigue Syndrome www.meassociation.org.uk

@jenniesworld.ca Sep 25, 2026, 10:56 PM

Overdue, exhausted, and finally getting my hair done since May. 😳

Grateful for Melanie, and yes… I protected it from the rain like a newborn.🌧️💸

#hairappointment #cfs #minivlog #burlingtondiaries

@tomkindlon.bsky.social Sep 25, 2026, 10:42 PM

8-page document "ME, CFS and Long Covid Health and Care Passport"
suffolkfed.org.uk/wp-content/u...

Could be used by people in lots of countries

#MEcfs #LongCovid #PwME #CFS

ME, CFS AND LONG COVID
HEALTH AND CARE PASSPORT

SECTION 1: CRITICAL INFORMATION AT A GLANCE

Personal Information
Name: I Prefer to be Called:
Date of Birth: NHS Number:
Address: Hospital Number:

Emergency Contact
Name: Contact Number:
Relationship:

MY CURRENT STATUS
Selection Status Meaning

☐

GREEN: I am at my
BASELINE

I am managing within my energy
limits but remain at risk of PEM.

☐

AMBER: I am STRUGGLING /
AT RISK OF A CRASH

My symptoms are worsening.
Please minimise ALL exertion
immediately to prevent a crash.

☐

RED: I am in a CRASH /
SEVERE RELAPSE

Assume I have zero available energy. All
interaction is potentially harmful.
Please follow my emergency care
plan as set out in this section,

MY CURRENT SEVERITY
Selection Severity Meaning

☐

Mild
I may need support for some tasks and
may have difficulties with mobility.

☐

Moderate
I have reduced mobility, and I am
restricted in all activities of daily living.

☐

Severe
I am confined to the house, need help
with all activities, sensitive to light and
sound.

☐

Very Severe
I am confined to bed, hypersensitive,
dependent on care, need help with
personal hygiene, eating.

@irishmecfsassoc.bsky.social Sep 25, 2026, 9:44 PM

Social gatherings in Bray, Cork, Dublin, Kilkenny & Limerick (Irish ME Trust)

#MEcfs #PwME #CFS #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #speirgorm #spéirgorm #speirghorm #spéirghorm

Have a Snack on ME
Our next social gatherings will take place in –
CORK, LIMERICK. DUBLIN BRAY & KILKENNY.
Full details as follows:
CORK
Barry’s of Douglas, Bar & Restaurant, Douglas, Cork.
Wednesday 30th September - Time – 12.00pm (organised by Ashling)
LIMERICK
The Strand Hotel
Ennis Road, Limerick
Wednesday 30th September - Time – 12.00pm (organised by Sarah)
DUBLIN
Groome's Bar & Bistro, Cassidy’s Hotel
Upper O’Connell Street, Dublin 1
Wednesday 30th September - Time – 2.00pm (organised by Shell)
BRAY
Villa Pacis Centre (on grounds of Queen of Peace Church in Bray)
Vevay Road, Bray, A98VP93.
Friday 2nd October - Time – 12.30pm (organised by Audrey)
KILKENNY
Bistro Bar, Kilkenny River Court Hotel
The Bridge John Street, Kilkenny.
Thursday 8th October - Time – 2.00pm (organised by Ailish)
All are Welcome
If anybody is interested in helping to arrange further locations, please contact info@imet.ie

@tomkindlon.bsky.social Sep 25, 2026, 2:36 PM

2/
Also: You can't trust personal testimonials about lightning process: The whole process involves training/hypnotising a patient to say they are well and not mention their symptoms or limitations

#MEcfs #CFS #ChronicFatigueSyndrome #PwME #MyalgicEncephalomyelitis

@tomkindlon.bsky.social Sep 25, 2026, 2:26 PM

Conclusion of:
"Journal of Psychosomatic Research Publishes First-Person Account of “Cure” with the Lightning Process" by David Tuller @davetuller1.bsky.social

virology.ws/2026/09/25/t...

#MEcfs #LongCovid #PwME #CFS

For every Lightning Process recovery story, there is a parallel story of someone failing to get better, or getting much, much worse after attempting to follow the program for days, weeks, even months. Has the journal sought to publish any of these negative accounts as a response? Or are only positive examples regarded as having enough evidentiary value to be accepted for publication in the JPR?

The journal seems to. have gone off the rails with this one.