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@tomkindlon.bsky.socialSep 21, 2026, 5:03 PM

New from Australia

Clinical Symptomatology, Cognition & Psychosocial Wellbeing in Adolescents With Myalgic
Encephalomyelitis/Chronic Fatigue Syndrome:A Cross-Sectional Observational Study

onlinelibrary.wiley.com/doi/10.1111/...

#MEcfs #PwME #CFS #MyalgicEncephalomyelitis #ChronicFatigueSyndrome

ABSTRACT Aim Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a disabling illness that frequently begins in adolescence, yet adolescents with ME/CFS remain an under-researched population. We aimed to characterise the cognitive and psychosocial wellbeing of adolescents with ME/CFS relative to normative benchmarks and unaffected age-peers. Methods Adolescents with mild-to-moderate ME/CFS (n = 25) and healthy controls (n = 25) aged 10–19 years were recruited in Melbourne, Australia. Each completed a set of clinical questionnaires and cognitive assessments to assess ME/CFS symptomatology, school functioning, psychosocial wellbeing and cognition. Their caregivers also completed questionnaires regarding their psychosocial wellbeing and everyday executive functioning. Results Adolescents with ME/CFS showed significantly reduced information processing speed, though other measures of intellectual functioning did not differ consistently between groups. The ME/CFS group also reported significantly poorer sleep, quality of life and higher levels of anxiety and depression. Caregivers further identified significant attention and working memory concerns in the ME/CFS group, but reported no differences in internalising behaviours between groups. Conclusion Adolescents with ME/CFS experience substantial psychosocial and physical burden because of their illness. Cognitive difficulties in ME/CFS may reflect inefficiencies in information processing speed and fluctuating symptom burden. Discrepancies between adolescent self-report and caregiver ratings underscore the importance of inclusive perspectives in ME/CFS management. These findings support the need for flexible, paced educational and clinical accommodations and for further research into the dynamic cognitive profile of adolescents with ME/CFS across a more representative population.
@tomkindlon.bsky.socialSep 21, 2026, 4:33 PM

8/
Impact of sleep dysfunction in ME/CFS

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

Impact of sleep dysfunction in ME/CFS "I have moderately severe ME so am mostly bed bound. Assuming that this is a baseline normal, the sleep disturbance makes the pain, cognitive issues and low mood more intense. And not being able to get away from those sensations during extended periods of sleep is especially cruel. Also as I am trying to get enough sleep it is difficult to get up during normal hours as by the time I have properly fallen asleep and had a decent amount of sleep most of the day has gone. It makes attending appointments or having people who help out round the home can only come mid afternoon onwards." Response from ME Research UK Symptom Saturday Sleep Dysfunction Survey RESEA,CH UK 3.3(3942 INFORM. INFLUENCE. INVEST.
@tomkindlon.bsky.socialSep 21, 2026, 4:19 PM

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What sleep dysfunction in ME/CFS feels like

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

SLEEP DYSFUNCTION IN ME/CFS "...It's its own special kind of torture to have the one thing you know would help ease your symptoms be so unattainable to you...." REM UK SCO36942 INFORM. INFLUENCE. INVEST.
@tomkindlon.bsky.socialSep 21, 2026, 3:32 PM

7/
Impact of sleep dysfunction in ME/CFS

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

Impact of sleep dysfunction in ME/CFS "Lowered mood. Poor concentration. Irascibility. Difficult to do anything as concentrating is exhausting, interacting with others is overwhelming." Response from ME Research UK Symptom Saturday Sleep Dysfunction Survey 6114 R ESiEjAik C H SCO36942 INFORM. INFLUENCE. INVEST.
@tomkindlon.bsky.socialSep 21, 2026, 3:17 PM

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What sleep dysfunction in ME/CFS feels like

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

SLEEP DYSFUNCTION IN ME/CFS "Difficulty in falling and staying asleep. Waking multiple times a night. Falling asleep only to wake a few seconds or a few minutes later. This can happen a couple of dozen times. Feeling so tired you feel like you are going mad but your body won't let you sleep." RESEAC, INFORM. INFLUENCE. INVEST.
@tomkindlon.bsky.socialSep 21, 2026, 1:17 PM

5/
What sleep dysfunction in ME/CFS feels like

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

SLEEP DYSFUNCTION IN ME/CFS "I feel jet lagged and drained." MI UK SCO36942 INFORM. INFLUENCE. INVEST.
@tomkindlon.bsky.socialSep 21, 2026, 12:08 PM

6/
Impact of sleep dysfunction in ME/CFS

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

Impact of sleep dysfunction in ME/CFS "I cannot sleep in the same bed as my partner. He disturbs me, I disturb him and then we are both miserable. I dread important events. I know that I will only be strong enough to attend that doctor's appointment, family wedding, birthday celebration if I get a good night's sleep. The pressure is unbearable and the disappointment heart breaking. Nothing I do makes any difference." Response from ME Research UK Symptom Saturday Sleep Dysfunction Survey 141% RESEARCH UK SCO36942 INFORM. INFLUENCE. INVEST.
@tomkindlon.bsky.socialSep 21, 2026, 12:00 PM

4/
What sleep dysfunction in ME/CFS feels like

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

SLEEP DYSFUNCTION IN ME/CFS "Never feeling sleepy. Even when my eyes burn with tiredness, and my whole body hurts and is exhausted, it's like the switch in my brain that initiates sleep is broken...." Iea RE4ARCH UK SCO36942 INFORM. INFLUENCE. INVEST.
@tomkindlon.bsky.socialSep 20, 2026, 10:48 PM

3/
What sleep dysfunction in ME/CFS feels like

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

SLEEP DYSFUNCTION IN ME/CFS "...Even if I've slept 'well', the mornings are awful. It takes hours for me to be able to make my brain work, or find words, or reply to texts etc and I feel so tired and foggy. I can't do anything in the mornings which means I miss out on all sorts of things locally which only happen in the mornings..." ieN R E StrH SCO36942 INFORM. INFLUENCE. INVEST.
@tomkindlon.bsky.socialSep 20, 2026, 10:41 PM

5/
Impact of sleep dysfunction in ME/CFS

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

Impact of sleep dysfunction in ME/CFS "Mentally it drives me crazy at times. Like I want to just pull my brain out my head. I feel so tired but I also can't sleep...." Response from ME Research UK Symptom Saturday Sleep Dysfunction Survey 611% RESEARCH SCO36942 INFORM. INFLUENCE. INVEST.
@tomkindlon.bsky.socialSep 20, 2026, 10:23 PM

#MEcfs #PwME #CFS #MyalgicEncephalomyelitis #ChronicFatigueSyndrome @cgatist.bsky.social

SPECIAL GUEST SPEAKER EVENT Professor Chris Ponting Lead scientist of the DecodeME project, sharing what ME/CFS genetics is revealing and where research is heading next. THE UNIVERSITY of EDINBURGH PROUDLY ORGANISED BY ME Support Navigating ME/CFS and Long COVID Decoding ME: ME/CFS Genetics & Biomarker Studies •Could ME/CFS be diagnosed with a blood test? • Why ME/CFS genetics matters This talk will cover: • What genetics reveals about disease-relevant genes, cells and systems • Sequence ME & Long COVID: latest updates .Is ME/CFS one condition or many? • Q&A with Professor Ponting 24th September 2026 7 - 8pm (NZ time) Click to join here meet.google.com/mdq-sjcc-kyf About our Guest Speaker Chris Ponting is Chair of Medical Bioinformatics at the University of Edinburgh. He started research as an experimental particle physicist before transitioning via structural biophysics and computational genomics, into functional genomics and human disease genetics. Chris provided leadership in international genome sequencing projects and has published over 370 articles. He is Chief Investigator of the ongoing DecodeME project, which now includes the whole genome sequencing of 6,000 people with ME/CFS ("Sequence ME & Long Covid"). Learn more: edwebprofiles.ed.ac.uk/profile/chris-ponting info@mesupport.org.nz www.mesupport.org.nz
@tomkindlon.bsky.socialSep 20, 2026, 9:36 PM

4/
Impact of sleep dysfunction in ME/CFS

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

Impact of sleep dysfunction in ME/CFS "My finances have been impacted because I now only work part time. The lack of sleep affects my concentration, focus and memory. I struggle to complete work in a timely manner and tasks take me much longer. There is no real work/life balance. I use my annual leave to sleep due to having insomnia. My annual leave is used for survival, not leisure." Response from ME Research UK Symptom Saturday Sleep Dysfunction Survey 1111% RESEARCH UK SCO36942 INFORM. INFLUENCE. INVEST.
@tomkindlon.bsky.socialSep 20, 2026, 9:22 PM

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What sleep dysfunction in ME/CFS feels like

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

What sleep dysfunction in ME/CFS feels like insomnia jet lagged torture feeling unrefreshed after sleep cannot sleep easily despite exhaustion fragmented sleep "tired but wired" unpredictable sleep patterns hypersomnia frustrating feeling hungover/drunk amplified symptoms lonely poisoned feeling like a zombie Recurring themes from ME Research UK Symptom Saturday Sleep Dysfunction Survey INFORM. INFLUENCE. INVEST.
@radioluxradar.bsky.socialSep 20, 2026, 7:15 PM

Hope in science
#chronicFatigueSyndrome #ME/CFS
www.healthrising.org/blog/2026/09...

@tomkindlon.bsky.socialSep 20, 2026, 6:57 PM

3/

Impact of sleep dysfunction in ME/CFS

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

Impact of sleep dysfunction in ME/CFS "...Being unable to sleep until the early hours of the morning feels very lonely. My symptoms are too unpredictable and severe to have a job." Response from ME Research UK Symptom Saturday Sleep Dysfunction Survey LIM RESEARCH SCO36942 INFORM. INFLUENCE. INVEST.
@tomkindlon.bsky.socialSep 20, 2026, 5:21 PM

2/
Impact of sleep dysfunction in ME/CFS

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

Impact of sleep dysfunction in ME/CFS "As my ME is severe, I have to spend most of my time lying down in bed in darkened room. However, the sleep dysfunction is what really isolates me - I am often asleep when everyone else is awake, but the opposite is also true. This makes my husband feel very lonely. He [and] the rest of my family always want more than I can give." Response from ME Research UK Symptom Saturday Sleep Dysfunction Survey thilidri RESEARCH UK SCO36942 INFORM. INFLUENCE. INVEST.
@stpaulsbay.bsky.socialSep 19, 2026, 9:14 PM

#ME/CFS is not an unknowable mystery illness—at least it doesn't have to be. It is a direct consequence of mineralocorticoid receptor overactivity and subsequent glucocorticoid receptor starvation driven by the #rs5522 variant. #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

@tomkindlon.bsky.socialSep 16, 2026, 9:12 PM

2/
My initial thoughts for what they are worth on a video on ME/CFS which has over 170,000 views in the first 6 days!

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

#MEcfs #PwME #CFS #MyalgicEncephalomyelitis #ChronicFatigueSyndrome

A YouTuber, Skallagrim, with 1.63 million followers has created a 31-minute video, “What ME/CFS is, and how it is wrecking me” I have watched it & given it has over 170,000 views in 6 days, I thought I would highlight it. I don’t think it is particularly brilliant but the more people who understand this illness and can be sympathetic or empathetic to people affected the better. I think this will help with this. He has a slow, languid way of talking which I found easy to listen to. For a lot of it, I didn’t look at the screen as apart from the odd photo, it is him talking to the camera. I imagine there will be people unhappy with bits here and there with it. My minor criticism is that a couple of times, he mentions research suggests the brain can be affected in a way that can affect willpower. However at other times, he makes clear it is not something that can be overcome with willpower. And he emphasises a bit that “the absolute worst thing to do is push through.” He does use the F-word four times I think, all in the last third of the video (around 22:52, 24:12, 26:50 & 27:55). The main focus is his own experiences so there is hardly any talk of the more severe form of the condition. Anyway people can watch it themselves and either comment here and/or on the video page itself. #MEcfs #PwME #CFS #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
@tomkindlon.bsky.socialSep 16, 2026, 8:26 PM

YouTuber @skallagrim.bsky.social with 1.63M followers has created a 31-minute video, “What ME/CFS is, and how it is wrecking me” with over 170,000 views

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

See next post for a few quick thoughts

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #PwME #CFS
1/

Screenshot of a YouTube video with a man talking to camera What ME/CFS Is, and How It's Wrecking Me Skallagrim Skallagrim 1.63m subscribers Join Subscribe 5.4k Share Save Thanks 170,621 views 9 Sept 2026 Hardly anyone knows about this (even some people who have it themselves), so I figured this might be educational. It's definitely a life altering condition, and a difficult, frustrating journey to find anything that helps. In my opinion "Myalgic Encephalomyelitis" is the better term. "Chronic Fatigue Syndrome" ends up sort of downplaying the severity and might make you think it's "just being tired". If only that was all there is to it...
@tomkindlon.bsky.socialSep 16, 2026, 4:29 PM

6/

“Why can medicine help so little?”

From "Understanding ME/CFS An Introduction to a Complex Illness" (August 2026) by Dr med Michaela Bauer

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

Why Can Medicine Help So Little? We grow up with a simple assumption: "I get sick, and medicine helps me." What seems self-evident, however, is only possible because research has been conducted beforehand. Research is the foundation of medical care. Only when a disease is studied can its causes and underlying biological mechanisms be better understood. This knowledge makes it possible to develop reliable diagnostic tests and examinations. Based on these insights, treatments can then be researched and evaluated. The resulting knowledge must also be incorporated into medical education and professional training so that it reaches healthcare professionals and, ultimately, patients. In the case of ME/CFS, this chain remains incomplete in several places to this day (Cullinan et al., 2021; Hoffmann et al., 2024). As a result, there is currently no treatment that can cure ME/CFS or directly address its underlying cause. Individual symptoms can be treated, but for many patients these interventions provide only limited relief (Hoffmann et al., 2024). When I get sick, medicine helps me. This is what it is like with ME/CFS: FIGURE 4 — MEDICINE AND RESEARCH. Source: Author's own illustration, created with Al assistance.
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