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@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

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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.
@longcovidadvoc.comSep 21, 2026, 11:00 AM

Amplifying! Excellent news that GM is writing another ME article. If relevant email address below 👇

#pwME #NEISVoid #LongCovid #ChronicIllness

@mediaactivist.comSep 21, 2026, 10:57 AM

Please share far and wide. #MyalgicEncephalomyelitis #ME #ME/CFS #MECFS #pwME

@swastrosarah.bsky.socialSep 21, 2026, 10:33 AM

It goes much deeper. The entire NHS is going to have to change its standardised operating procedures. Medical schools have to rewrite their courses. The most experienced/clinically knowledgeable struggle to explain to the medical establishment how #pwME are made more unwell by a business as usual

@rose-mary-x.bsky.socialSep 21, 2026, 9:29 AM

‼️ #MECFS #pwME #MyalgicEncephalomyelitis

@michaelnobbs.bsky.socialSep 21, 2026, 9:22 AM

Good morning 😊

It's a lovely mizzly morning at my gate today.

Have a lovely gentle day ❤️🐌

#MorningView #MECFS #pwME #Wales #CreativeHabit

@cabruce.bsky.socialSep 21, 2026, 9:19 AM

#pwME Do spread this far and as wide as you can 🙏

@tomkindlon.bsky.socialSep 21, 2026, 12:15 AM

Seven replicated genomic associations: of myalgic encephalomyelitis/chronic fatigue syndrome a biobank study

www.medrxiv.org/content/10.6...

s4me.info/threads/seve...

Screenshot from latest Science for ME weekly update

#MEcfs #PwME #CFS

Seven replicated genomic associations: of myalgic encephalomyelitis/chronic fatigue syndrome a biobank study — Slaughter et al "Using TarGene, we identified 176 SNPs associated with ME/CFS risk (FDR < 0.05) in the UKB1 discovery cohort, of which 15 reached genome-wide significance ( < 5 × 10−8). In the follow-up replication analysis, two associations replicated in the UKB2 cohort with a further five in the AoU cohort." Preprint | Thread
@achronicvoice.comSep 20, 2026, 11:30 PM

"We’re too #sick to participate, too sick to #protest, too sick to object, too sick to demand our seat at the table. Why demand a seat for someone too sick to sit up?" (My Year of Rest & Relaxation): buff.ly/5wwxoBM

by julia_doubleday
#LongCOVID #disability #pwME #ChronicIllness #NEisVoid #spoonies

@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

2/
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.
@tomkindlon.bsky.socialSep 20, 2026, 7:06 PM

🧵
Being awake when others are asleep, being asleep when others are awake, feeling exhausted but not sleepy, waking up several times a night, waking up in the morning feeling unrefreshed...sleep dysfunction manifests in countless ways in ME/CFS

www.meresearch.org.uk/the-experien...

#MEcfs #PwME
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What sleep dysfunction in ME/CFS feels like Responses from ME Research UK Symptom Saturday Sleep Dysfunction Survey INFORM. INFLUENCE. INVEST.