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@tomkindlon.bsky.socialOct 1, 2026, 6:48 PM

This is up to 223,000 views now

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #PwME #CFS

@tomkindlon.bsky.socialOct 1, 2026, 6:40 PM

(Santa Rosa, California, USA)
"Interested in Helping to Develop a Non-Invasive Way to Measure Blood Flow to the Head?"

#MEcfs #PwME #CFS #MyE #MyalgicEncephalomyelitis #ChronicFatigueSyndrome @sunsopeningband.bsky.social

Interested in Helping to Develop a Non-Invasive Way to Measure Blood Flow to the Head? If you are a woman between the ages of 18-65 and you have myalgic encephalomyelitis (ME) or you are healthy, you may be eligible to participate in a study. A Non-Invasive Way to Measure Blood Flow to the Head If you are eligible and agree to participate in the study, you will answer three questionnaires involving more about you, your signs and symptoms, and how well you can think and pay attention. This is a two-day test involving two different research sessions. During each session, you will do a maximal cardiopulmonary exercise test involving a stationary cycle. Before each test, you will complete a NASA Lean Test. Throughout the study, you will wear an earpiece that measures the blood going to your head. An honorarium is available to participants. For more information, and to participate, please contact info@workwellfoundation.org or tdavenport@pacific.edu. Location Workwell Foundation in Santa Rosa, California Are you eligible? A woman between the ages of 18-65 years Have ME Cleared by a medical provider to complete cardiopulmonary exercise testing If you aren't sure, a screening process is provided as part of the study If you're unsure if you meet the requirements, call or email the study's principal investigator: Todd E. Davenport, PT, DPT, PhD, MPH, OCS Professor Department of Physical Therapy University of the Pacific (209) 946-3159 tdavenport@pacific.edu
@solveme.bsky.socialSep 28, 2026, 8:00 PM

Our IVO-21 webinar with Dr. Jay H. Chung was recently featured in Health Rising!
Read the full article to learn more about the research supported through Solve's Catalyst Award: https://ow.ly/V4yE50ZSnHT
Watch the webinar: https://ow.ly/WI3i50ZSnI1
#MECFS #ChronicFatigueSyndrome #IVO21

Dr. Jay H. Chung from NIH featured in Solve M.E. webinar on IVO-21 as a mitochondrial drug for ME/CFS, with 11K+ YouTube views and coverage in Health Rising.
@tomkindlon.bsky.socialSep 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.socialSep 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.socialSep 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

TRI-ME Trial logo TRI-ME Trial Researchers at Deakin University are investigating if a potential new treatment is effective in treating Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). Researchers at Deakin University are investigating if a potential new treatment is effective in treating Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). This study will assess the effectiveness of the medication in a high-quality, clinical trial. In a recent drug screening program, the medication showed promising potential to address the key elements of ME/CFS by reversing mitochondrial dysfunction – the likely pathway in ME/CFS. The medication works to improve the efficiency of how the body creates energy by promoting specific energy production pathway. Key Points for Participation • There is no cost involved for participants in the trial • Participants can continue on their usual treatments • The trial will be held over 8 weeks and involve a total of 5 sessions • Participants will be randomly allocated to receive either the active medication or placebo If you would like to receive more information or enquire about participating, please visit their website. Ethics approval number: Barwon Health HREC 23/196
@tomkindlon.bsky.socialSep 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.
@tomkindlon.bsky.socialSep 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
@irishmecfsassoc.bsky.socialSep 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.socialSep 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.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.
@chronicaction.bsky.socialSep 24, 2026, 12:07 PM

“There has seldom been a stronger case for a public inquiry”

🙏 @GeorgeMonbiot.bsky.social

A chasm beteeen 🌎 leading medicine, making groundbreaking headway with different disciplines & finding answers. The UK and others continue on the same trajectory. It’s a choice.
#ME #chronicfatiguesyndrome

@wrenkh.bsky.socialSep 24, 2026, 11:45 AM

A well informed, compassionate article. Really worth reading.
#ME #ChronicFatigueSyndrome #Health #ChangeNeeded

@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

@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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