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@desiraemessenger.bsky.socialSep 25, 2026, 2:37 AM

Moonrise at sunset
The event of the day
#me/cfs
#cfs/me
#longcovid
#housebound

@tomkindlon.bsky.socialSep 24, 2026, 10:30 PM

(Queensland, Australia)
"Help Us Research Chronic Neuroinflammation in ME/CFS"

More information here (third item)
mecfs.org.au/get-involved...

The QR code goes here:
www.unisc.edu.au/thompson-ins...

#MEcfs #PwME #CFS #MyalgicEncephalomyelitis #ChronicFatigueSyndrome

UniSC Australia Thompson Institute Help Us Research Chronic Neuroinflammation in ME/CFS We are seeking adults aged 18-65 with Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS) to assist us to investigate chronic neuroinflammation in ME/CFS. You could be eligible if: • You are aged between 18-65 (with ME/CFS). • Can communicate in English. Have no neurological or active psychiatric illnesses. As a research participant, you would take part in: • At your own pace, questionnaires to assess different aspects of mental and physical health status. • A physical assessment. One magnetic resonance imaging (MRI) scan (50 minutes scanning time plus preparation). One blood and saliva sample collection. Participants with fatigue conditions will also take part in: Two clinical telehealth interviews with two specialists. Each interview will be scheduled for 30-45 minutes. To express your interest or learn more, please contact: Anya, Research Coordinator Email: cfs@usc.edu.au We appreciate your time and effort, so participants will be gifted $50.00 AUD for their participation and will receive a copy of their brain scan.
@tomkindlon.bsky.socialSep 24, 2026, 9:54 PM

‪2/‬

‪George Monbiot writes about the 'astonishing, ongoing mistreatment of people with ME/CFS.' ‬

‪I join him in asking you to, 'spread it far and‬ ‪wide: the only thing which can break the media's wall of indifference is seeing an article about the issue go viral.'‬

‪ #CFS‬ #MEcfs #PwME #CFSME

@cfscounselling.bsky.socialSep 24, 2026, 2:01 PM

Want to stay connected with CFS Counselling + Wellbeing? Join our mailing list to receive updates about our services, upcoming news and information about events and programs.

Sign up here: https://mailchi.mp/cfssc/newsletter #CFS #HopeLivesHere

@tomkindlon.bsky.socialSep 24, 2026, 12:20 AM

The health news site "Sundhedspolitisk Tidsskrift" has an article about the short film; "Best Practice" on severe ME & conflicts with the authorities.

Google translation:
sundhedspolitisktidsskrift-dk.translate.goog/nyheder/helb...

Screenshot from Science for ME update

#MEcfs #PwME #CFS #SevereME

Denmark The health news site "Sundhedspolitisk Tidsskrift" has an article about the short film; "Best Practice" on severe ME and conflicts with the authorities. It includes an interview with one of the actors, Hjalte Ilsøe Gustavusson who has a family member with ME. He says: .."the film depicts a situation where the authorities follow a procedure blindly and put human responsibility on the shelf". The film is written and directed by Oscar winner Martin Strange-Hansen. Article (Danish) l Thread
@tomkindlon.bsky.socialSep 23, 2026, 5:34 PM

2/
I have just read it will be recorded.

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

@tomkindlon.bsky.socialSep 23, 2026, 5:16 PM

On in 13 hours 43 minutes

5 pm Sydney today
7 pm NZ today

12 am midnight California tonight
8 am UK tomorrow morning
9 am Germany tomorrow morning

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

@tomkindlon.bsky.socialSep 23, 2026, 10:34 AM

One week to go
#MEcfs #LongCovid #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #PwME #CFS #speirgorm #spéirgorm #speirghorm #spéirghorm

@cwengaard.bsky.socialSep 23, 2026, 5:15 AM

#chronicillness #invisibleillness #chronicpain #chronicfatigue #pain #fatigue #spoonie #Endometriosis #Adenomyosis #ME #CFS #Fibromyalgia #Sjøgren #youarenotalone 💖🙏

@tomkindlon.bsky.socialSep 23, 2026, 12:21 AM

(Melbourne, Australia)

Contribute to research hoping to improve the lives of adults with ME/CFS or Long COVID

redcap.unimelb.edu.au/surveys/?s=W...

#MEcfs #LongCovid #PwME #CFS

Contribute to research hoping to improve the lives of adults with ME/CFS or Long COVID - The University of Melbourne We are conducting a brain imaging project to investigate potential differences between healthy controls and patients with ME/CFS and/or long COVID with or without Postural Orthostatic Tachycardia Syndrome (POTS). You or someone you know might be suitable if you/they are: Female aged 18-70 years old (inclusive) Diagnosed with ME/CFS or long COVID Interested in brain imaging, brain blood flow and inflammation Participation in this research would involve: 5 online questionnaires and 1 cognitive test (~3 hours in total). 2 visits to the Melbourne Brain Centre Imaging Unit with a total participation time of ~8 hour. This will include: An hour-long MRI brain scan. 2 separate hour-long PET brain and calf scans. 3 venous blood draws. Providing urine samples Time spent will be reimbursed at $20/hour. Interested in participating? https://redcap.unimelb.edu.au/surveys/?s=WK34J7TR3AX4D9Y3
@bigorre-org.mastodon.social.ap.brid.gySep 22, 2026, 10:16 PM

Aviation weather for Coffs Harbour airport (Australia) is “METAR YCFS 222130Z AUTO 01006KT 9999 // OVC022 OVC031 20/17 Q1030” : See what it means on https://www.bigorre.org/aero/meteo/ycfs/en #coffsharbourairport #airport #coffsharbour #australia #ycfs #cfs #metar #aviation #aviationweather […]

@tomkindlon.bsky.socialSep 22, 2026, 7:40 PM

"Miranda Hart: Chronic illness will make Celebrity Traitors 'challenging'"

www.rte.ie/entertainmen...

This article is based on a PA piece. There seem to be a number in the Irish media & I imagine quite a large number in the UK media mentioning Miranda's ill-health.

#MEcfs #PwME #CFS #ME #MyalgicE

Miranda Hart: Chronic illness will make Celebrity Traitors 'challenging' Updated / Tuesday, 22 Sep 2026 14:40 Miranda Hart Miranda Hart Miranda Hart has said The Celebrity Traitors will be "challenging" on her body and people will not know if she is "sitting there in pain" because of her chronic illness. The TV star, 53, best known for popular BBC sitcom Miranda, has spoken about being diagnosed with Lyme disease. The disease can be easily treated if caught early, but Hart did not know what was causing her to feel unwell for some time, leading her to be diagnosed with Myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS).
@tomkindlon.bsky.socialSep 22, 2026, 3:49 PM

"I would be here if I could" travelling art installation by artist Alison Larkman

www.iwouldbehereificould.com

meassociation.org.uk/2026/09/i-wo...

Screenshot from latest Science for ME weekly update

#MEcfs #LongCovid #PwME #CFS

UK "I would be here if I could" travelling art installation by artist Alison Larkman. "The Mirrorbox is on a nationwide journey carrying messages from people living with ME and Long Covid to the places they love but can no longer reach. Inside is a message from the person who has chosen that place. Enter and listen, you are invited to write them a postcard back." Website | MEA article | Thread
@tomkindlon.bsky.socialSep 21, 2026, 8:02 PM

10/
What sleep dysfunction in ME/CFS feels like

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

SLEEP DYSFUNCTION IN ME/CFS "Dread going to bed. I've forgotten what a good nights sleep feels like! Wake up feeling no benefit from having been in bed 10 hours...." RESEARCH UK SCO36942 INFORM. INFLUENCE. INVEST.
@tomkindlon.bsky.socialSep 21, 2026, 6:28 PM

9/
What sleep dysfunction in ME/CFS feels like

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

SLEEP DYSFUNCTION IN ME/CFS "...when I'm in PEM it is even worse. I struggle to fall asleep despite being absolutely crushed by fatigue and exhaustion." RESEARCH UK SCO36942 INFORM. INFLUENCE. INVEST.
@tomkindlon.bsky.socialSep 21, 2026, 5:26 PM

8/
What sleep dysfunction in ME/CFS feels like

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

SLEEP DYSFUNCTION IN ME/CFS "Since developing ME/CFS I require more sleep/rest because the constant ME/CFS symptoms take their toll. Sleep/rest is essential along with pacing to try and keep ME/CFS from worsening. Unfortunately sleep is not always restorative because, even if I have slept well, I still wake up feeling unrefreshed and generally below par. This is awful because the combination of ongoing ME/CFS symptoms plus this "hangover" feeling due to poor sleep quality means that you are battling ME/CFS on two fronts." RESEAR.C, UK INFORM. INFLUENCE. INVEST.
@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.
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