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@irishmecfsassoc.bsky.social Oct 7, 2026, 4:04 PM

A list we run for members of the Irish ME/CFS Association we thought we would plug.

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

@tomkindlon.bsky.social Oct 7, 2026, 2:17 PM

New CDC study

Characterizing Pediatric Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Symptom Burden, Functional Impairment, and Comparison With Adults

www.jpeds.com/article/S002...

#MEcfs #PwME #CFS #MyalgicEncephalomyelitis #ChronicFatigueSyndrome

Objectives
To characterize the clinical, functional, and educational characteristics of adolescents with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and compare selected illness domains with adults in the Multi-Site Clinical Assessment of ME/CFS (MCAM) study.
Study design
Baseline cross-sectional data from adolescents aged 10–17 years enrolled in MCAM were analyzed. Standardized measures included the Short Form-36 (SF-36v2), CDC Symptom Inventory (CDC-SI), Multidimensional Fatigue Inventory (MFI-20), and selected domains of the DePaul Questionnaire. Descriptive statistics characterized the pediatric cohort and bivariate analyses compared adolescents with adults enrolled in MCAM.
Results
Forty adolescents (mean age 15.3 years; 52.5% female) were included. Mean illness duration was 4.0 years. Educational disruption was substantial: 64% received homebound or homeschool instruction, 89% missed school because of illness, and participants missed a mean of 10.8 school days during the preceding month. Physical health-related quality of life was substantially impaired. Persistent post-exertional malaise (PEM), unrefreshing sleep, fatigue, and neurocognitive symptoms were common. Compared with adults (n = 595), adolescents had shorter illness duration and better physical functioning, vitality, and social functioning, whereas mental health scores were similar. Adults reported greater burden across several physical symptom domains although many between-group differences were small.
Conclusions
Adolescents with ME/CFS experience substantial multisystem symptom burden, impaired physical functioning and educational disruption. Many core clinical features were similar to those in adults, supporting the need for early recognition and appropriate clinical and educational support.

@tomkindlon.bsky.social Oct 7, 2026, 10:59 AM

Recording of the 24 September 2026 ME Support webinar featuring Chris Ponting @cgatist.bsky.social is up:

www.youtube.com/watch?v=UJYU...

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

THE UNIVERSITY of EDINBURGH
upport - uest Speaker nt with Chris Ponting
ME: ME/CFS & biomarker udies ME Support
Navigating ME/CFS and Long COV.

@litsadremousis.bsky.social Oct 7, 2026, 1:15 AM

Hey, kids! Last night I posted my first essay to Substack.

In which I gleefully swing the bat against a medical establishment that has failed so many of us.

#MyalgicEncephalomyelitis #pwME #LongCovid #WriterSky #BookSky

Let’s Do the Time Warp Again
substack.com/@litsadremou...

@tomkindlon.bsky.social Oct 7, 2026, 12:19 AM

3/
An extract that quotes me from "Patient's knowledge, doctor's ignorance: The production of knowledge about myalgic encephalomyelitis"

#MEcfs #PwME #epatient #epatients #MyalgicEncephalomyelitis

"I decided to start doing scientific work on ME because I was frustrated with the level of analysis in papers. Sometimes I felt that being a patient and having interacted with many other patients, it gave me insights into other ways of looking at topics and data. I wanted to increase the chances that there would be scientific progress that would help me and other patients and felt I could contribute to scientific discussions. Most of my initial work was in post-publication commentary. I wrote over 100 e-letters on journal websites as well as having 20 letters to the editor published. This was in response to a wide variety of topics but a special interest of mine was non-pharmacological interventions particularly graded exercise therapy and graded activity-oriented cognitive behaviour therapy. (Tom Kindlon)"

@tomkindlon.bsky.social Oct 6, 2026, 6:16 PM

10/
What fatigue in ME/CFS feels like

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #fatigue #chronicfatigue #chronicallyfatigued #fatigued #spoonie #spoonies #spoonielife

FATIGUE IN ME/CFS
"Bone crushing. Always. I mean always present. But the intensity fluctuates. But ALWAYS present.
When other symptoms of ME/CFS worsen, so does the intensity of fatigue increase...."
RESEARCH i (. SCO36942
INFORM. INFLUENCE. INVEST.

@tomkindlon.bsky.social Oct 6, 2026, 4:56 PM

9/
Impact of fatigue in ME/CFS

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #fatigue #chronicfatigue #chronicallyfatigued #fatigued #spoonie #spoonies #spoonielife

FATIGUE IN ME/CFS
"ME/CFS-related fatigue is very different from ordinary tiredness. It feels like my body has an extremely limited amount of energy available, and even very small amounts of physical or mental activity can use up far more energy than they should. It can feel like my whole body is heavy, weak and drained, as though I have run out of fuel. Resting or sleeping does not
reliably restore that energy....
RESEARCH UK SCO,6942
INFORM. INFLUENCE. INVEST.

@tomkindlon.bsky.social Oct 6, 2026, 4:28 PM

Norway
Demonstration scheduled for 28th October

www.facebook.com/events/18087...

www.me-foreldrene.no/markering-pa...

Screenshot from latest Science for ME weekly update

#MEcfs #PwME #CFS #MyalgicEncephalomyelitis #LongCovid @meforeningen.bsky.social

Norway Demonstration scheduled for 28th October at 3:00 PM
Three patient organisations — The Norwegian ME Association, The ME Parents, and the Norwegian Covid Association — are organising a demonstration outside the Norwegian Parliament demanding a stop of the planned clinical guidelines for fatigue and ME. They ask for a separate guideline and expertise in healthcare for ME and post-infectious illness with PEM. Digital participation will be possible.
Facebook event (Norwegian) l "The ME Parents" website (English translation) l Thread

@tomkindlon.bsky.social Oct 6, 2026, 4:03 PM

8/
Impact of fatigue in ME/CFS

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #fatigue #chronicfatigue #chronicallyfatigued #fatigued #spoonie #spoonies #spoonielife

Impact of fatigue in ME/CFS
"...My hobbies went one by one, friends disappeared. Cooking, eating, showering, cleaning the house have all been reduced over time. I can rarely cook from scratch now, it's exhausting. I rarely go out and can't go far when I do, I can't drive far any more...."
Response from ME Research UK Symptom Saturday Fatigue Survey
hel% RESEARCH UK SCO369.42
INFORM. INFLUENCE. INVEST.

@tomkindlon.bsky.social Oct 6, 2026, 3:10 PM

7/
Impact of fatigue in ME/CFS

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #fatigue #chronicfatigue #chronicallyfatigued #fatigued #spoonie #spoonies #spoonielife

@tomkindlon.bsky.social Oct 6, 2026, 3:06 PM

8/
What fatigue in ME/CFS feels like.

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #fatigue #chronicfatigue #chronicallyfatigued #fatigued #spoonie #spoonies #spoonielife

$FATIGUE IN ME/CFS "Exhaustion in my bones. Like walking through treacle...." RESEARCH UK SCO36942 '\ INFORM. INFLUENCE. INVEST.$

@tomkindlon.bsky.social Oct 6, 2026, 2:14 PM

6/
Impact of fatigue in ME/CFS

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #fatigue #chronicfatigue #chronicallyfatigued #fatigued #spoonie #spoonies #spoonielife

Impact of fatigue in ME/CFS
"...I had to stop working, that had a huge impact on my mental health, I felt useless. My income and independence were gone and I felt like I wasn't a person who had anything to give anymore. I had to give up sports, hiking and anything that used my energy. My family life suffered, my partner became my carer. I couldn't do many things for my child and felt so guilty that she had a sick parent. Our lives changed from being very active to almost nothing...."
Response from ME Research UK Symptom Saturday Fatigue Survey
RESEARCH K ,CO36942
INFORM. INFLUENCE. INVEST.

@tomkindlon.bsky.social Oct 6, 2026, 2:09 PM

7/
What fatigue in ME/CFS feels like.

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #fatigue #chronicfatigue #chronicallyfatigued #fatigued #spoonie #spoonies #spoonielife

$FATIGUE IN ME/CFS "Fatigue in ME/CFS is not tiredness as healthy people experience it. It is not tiredness after a busy day but more like the drained and weakened fatigue that healthy people would feel when they have a dose of flu and they are wiped out with all their strength gone...." 1414 RESEARCH UI SCC,6942 \ INFORM. INFLUENCE. INVEST.$

@tomkindlon.bsky.social Oct 6, 2026, 1:35 PM

6/
What fatigue in ME/CFS feels like.

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #fatigue #chronicfatigue #chronicallyfatigued #fatigued #spoonie #spoonies #spoonielife

FATIGUE IN ME/CFS
"Fatigue doesn't even begin to describe it. It feels like a whole body shut down...."
MI UK SCO36942
IN
FORM. INFLUENCE. INVEST.

@tomkindlon.bsky.social Oct 6, 2026, 1:23 PM

He is also on IG with the same username

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #meawareness #mecfsawareness

@tomkindlon.bsky.social Oct 6, 2026, 1:08 PM

5/
Impact of fatigue in ME/CFS

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #fatigue #chronicfatigue #chronicallyfatigued #fatigued #spoonie #spoonies #spoonielife

Impact of fatigue in ME/CFS
"I struggled through by pacing myself & a sympathetic system that allowed me up to 6 months unpaid leave , but I couldn't care for my daughters in the way I wanted to"
Response from ME Research UK Symptom Saturday Fatigue Survey
RESEARCH UK SCO36942
INFORM. INFLUENCE. INVEST.

@tomkindlon.bsky.social Oct 6, 2026, 11:42 AM

4/
Impact of fatigue in ME/CFS

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #fatigue #chronicfatigue #chronicallyfatigued #fatigued #spoonie #spoonies #spoonielife

Impact of fatigue in ME/CFS
"...The change to a completely sedentary lifestyle is a major challenge and I am missing out on my retirement and not enjoying it. I can no longer engage with the same circle of friends. Adjusting to living with the condition is depressing."
Response from ME Research UK Symptom Saturday Fatigue Survey
RESEARCH UK ,C0692
INFORM. INFLUENCE. INVEST.

@tomkindlon.bsky.social Oct 6, 2026, 11:30 AM

5/
What fatigue in ME/CFS feels like.

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #fatigue #chronicfatigue #chronicallyfatigued #fatigued #spoonie #spoonies #spoonielife

$FATIGUE IN ME/CFS "Remember the time you were so exhausted you couldn't wait to go to sleep? I feel like that everyday. The difference is that when I wake up, I feel the same. Remember when you came down with the flu and felt like you were hungover, your head throbbed, you had no energy, and everything hurt? I feel like that everyday." RESEARCH UK SCO36942 \ INFORM. INFLUENCE. INVEST.$

@thewestonmale.bsky.social Oct 6, 2026, 9:04 AM

@meassociation.org.uk
#LLHM27 #halfmarathon #London #mecfs #me/cfs #MyalgicEncephalomyelitis #charityrun #nicepeople

@tomkindlon.bsky.social Oct 6, 2026, 1:55 AM

Pharmacological Treatment Approaches in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)

www.scifiniti.com/3105-3874/2/...

Screenshot from latest Science for ME weekly update

#MEcfs #PwME #CFS #MyalgicEncephalomyelitis #ChronicFatigueSyndrome

Pharmacological Treatment Approaches in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) — Habermann-Horstmeier
"To date, no causal pharmacological therapy exists for this disease […]. However, early implementation of symptom-oriented management strategies and pacing may improve symptom control, functional status, and quality of life, although no evidence currently demonstrates reversal of the underlying disease process."
Article | Thread