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@irishmecfsassoc.bsky.social Oct 2, 2026, 6:51 PM

From left: Orla Ní Chomhraí, Jacinta Fay & Aoife Delany Reade at the post-show discussion panel following "What about M.E.?": 4 Short Plays About Myalgic Encephalomyelitis

More info in next post

#MEcfs #PwME #CFS

From left: Orla Ní Chomhraí, Jacinta Fay & Aoife Delany Reade

@tomkindlon.bsky.social Oct 2, 2026, 2:37 PM

Latest update from the CureME team, can be read here and covers a range of topics on current projects, recent publications and sample usage

eepurl.com/QShnc4nywr

#MyalgicEncephalomyelitisg #ChronicFatigueSyndrome #MEcfs #CFS #PwME

@tomkindlon.bsky.social Oct 1, 2026, 6:48 PM

This is up to 223,000 views now

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #PwME #CFS

@tomkindlon.bsky.social Oct 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

@tomkindlon.bsky.social Oct 1, 2026, 12:27 AM

DNA methylation: unifying framework for complex chronic conditions

www.cell.com/trends/genet...

Screenshot from latest Science for ME weekly update

#MEcfs #LongCovid #PwME #CFS #Fibromyalgia

DNA methylation: unifying framework for complex chronic conditions — Sharma et al
Review. "epigenetic regulation, particularly DNA methylation, offers a powerful framework for linking environmental triggers, host susceptibility, and persistent changes in gene regulation. Its relative stability, sensitivity, and accessibility in peripheral tissues position it as a leading candidate for biomarker development, disease stratiﬁcation, and monitoring of disease trajectories."
Article | Thread

@irishmecfsassoc.bsky.social Sep 30, 2026, 10:35 PM

Tom Kindlon @tomkindlon.bsky.social : The joint best attendance ever for these social gatherings at the Bell.

Some people travelled a distance to attend, with people there from 4 counties.

#MEcfs #PwME #CFS

@tomkindlon.bsky.social Sep 30, 2026, 12:20 AM

From Germany

Evaluation of an Integrated Multidisciplinary Care Model for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Prospective, Open-label, Non-randomized Controlled Intervention Study

www.amjmed.com/article/S000...

Screenshot from Science for ME weekly update

#MEcfs #PwME #CFS

Evaluation of an Integrated Multidisciplinary Care Model for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Prospective, Open-label, Non-randomized Controlled Intervention Study — Peters et al
"At the post-rehabilitation visit the Bell scale was lower in 45% of patients and higher in only 14% compared with baseline" "Our findings question the clinical value of current rehabilitation in ME/CFS, even when specifically adapted to the disease, particularly for severely affected patients."
Article | Thread

@cfscounselling.bsky.social Sep 29, 2026, 7:00 PM

Did you know men can access no-cost in-person counselling in #Collingwood or #Barrie through #CFS' Men's Counselling Link program? Virtual sessions are also available throughout #SimcoeCounty and #Muskoka. Book now at https://tinyurl.com/yzpb6vz6 #HopeLivesHere #MCL

@meownersclub.bsky.social Sep 29, 2026, 11:08 AM

Do you feel I haven’t been clear enough to specify #ME over #CFS?

@tomkindlon.bsky.social Sep 29, 2026, 12:25 AM

From the US

Hemodynamic Phenotyping in ME/CFS & ANOCA [Angina with Non-Obstructive Coronary Arteries]: Complementary Insights from Coronary Function Testing & Invasive Cardiopulmonary Exercise Testing

journals.physiology.org/doi/10.1152/...

Screenshot from Science for ME update
#MEcfs #PwME #CFS

Hemodynamic Phenotyping in ME/CFS and ANOCA: Complementary Insights from Coronary Function Testing and Invasive Cardiopulmonary Exercise Testing — Mackay et al
"Invasive cardiopulmonary exercise testing (iCPET) in patients with concurrent ME/CFS and ANOCA reveals a primary peripheral, not cardiac, limitation to exercise."

@tomkindlon.bsky.social Sep 29, 2026, 12:15 AM

Emerge Australia @emergeaustralia.bsky.social has posted a copy of an article published by The Australian

emerge.org.au/news/the-aus...

www.theaustralian.com.au/commentary/6...

Screenshot from latest Science for ME weekly update

#MEcfs #PwME #CFS

Emerge Australia 600,000 patients risk losing care over $220k grant
Emerge Australia has posted a copy of an article published by The Australian.
"Federal funding of the patient health service effectively paid for telehealth, information and support service delivery and development. On November 30 that funding ceases and Wilson says there is no certainty of new funding of a service to some of the most vulnerable people in the country."
Emerge | The Australian | Thread

@irishmecfsassoc.bsky.social Sep 28, 2026, 11:37 AM

2 days to go
#MEcfs #LongCovid #CFS #PwME

@desiraemessenger.bsky.social Sep 28, 2026, 3:24 AM

I’m feeling rotten tonight. Someone I saw on Friday is sick today. I hope I’m not getting it. Let’s play is it just the usual fatigue or not!
Feeling extra bad always takes a toll on me mentally.
#me/cfs #cfs/me #chronicillness

@tomkindlon.bsky.social Sep 28, 2026, 1:03 AM

Role of haptoglobin and its phenotypic variations in the pathophysiology of myalgic encephalomyelitis and long COVID — Moezzi PhD thesis.

umontreal.scholaris.ca/items/f5770e...

#MEcfs #LongCovid #CFS #PwME