Tom Kindlon
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tomkindlon.bsky.social
Tom Kindlon
@tomkindlon.bsky.social
6.9K followers 200 following 7.2K posts
95% of posts on #MyalgicEncephalomyelitis, #LongCovid or #chronicillness.

With ME/CFS 36 years, severe ME 31 years.

@IrishMECFSAssoc trustee 28 years

26 publications in peer-reviewed journals

Social media: https://me-pedia.org/wiki/Tom_Kindlon
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tomkindlon.bsky.social
Tom Kindlon @tomkindlon.bsky.social · 4d
A patient who created a popular sheet on how to deal with somebody in postexertional malaise (PEM) has adapted it for hospital staff (repeat)

#MEcfs #LongCovid #PostExertionalMalaise #PEM #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
Hospital Guidance: Post-Exertional Malaise (PEM) - Care Requirements CLINICAL WARNING: When the patient is in PEM, any extra activity (sitting up, walking, answering questions) can worsen symptoms, reset recovery, and accelerate long-term decline. Strict protection of rest is required. Overnight Care Guidance Lighting and Noise: Keep the room dark and silent overnight. Avoid unnecessary door openings. Use minimal light if checks are required. Sleep Protection: Do not wake for routine observations unless clinically essential. Cluster any checks to reduce disturbance. Environment: Ensure call bell, water, and medications are within reach before settling for the night. Communication: Avoid questions or conversation if the patient wakes. Speak quietly and keep interactions minimal. Escalation: If pain, tachycardia, or instability occurs, respond calmly, minimise sensory exposure, and escalate as clinically indicated. Documentation: Overnight staff should record sleep protection strategies and PEM episode status at shift start and end. Personal Care - Showering and Hygiene Daily shower prompts are not required. Please be guided by the patient as to when capacity allows. General Principle: Patient will indicate readiness for washing or showering. No need to prompt daily. Frequency: Showering may be limited to once a week or less during severe PEM. Over-exertion can worsen symptoms. Alternatives: Patient may use wet wipes or gentle seated wash in lieu of shower as tolerated. Assistance: Provide quiet, minimal support (e.g., washcloths, seated wash). Avoid standing or prolonged exertion. Environment: Keep lighting low and surroundings quiet. Ensure seating for safety if required. Aftercare: Allow full recovery time after shower; avoid further activity immediately afterwards. Shift Handover Note - Include in SBAR S-Situation: PEM episode Yes No | Start: | Severity: mild/mod/severe B- Background: ME/CFS with PEM; significant light/noise sensitivity; cognitive overload risk. …
tomkindlon.bsky.social
The Stigma of self-report in health research: Time to reconsider what counts as “Objective” by Nisreen A. Alwan @nisreenalwan.bsky.social

journals.plos.org/globalpublic...

Screenshot from latest Science for ME weekly update

#LongCovid #NeuroPASC
The Stigma of self-report in health research: Time to reconsider what counts as “Objective” — Nisreen A. Alwan "The assumption is that people misremember, exaggerate, or misinterpret their symptoms. But what if the problem lies not in the type of data, but in our unwillingness to trust this mode of reporting without adequate justification for such mistrust?"
February 4, 2026 at 2:08 AM
Reposted by Tom Kindlon
emergeaustralia.bsky.social
As we begin 2026, we want to say a big thank you to everyone who has joined the AusME.

Being part of the #AusMERegistry helps move #MECFS and #longCOVID research forward in Australia.

Join today - zurl.co/QuO1z

#emergeaustralia
January 29, 2026 at 9:00 PM
Reposted by Tom Kindlon
emergeaustralia.bsky.social
If you’re living with ME/CFS, long COVID, or want to volunteer as a ‘healthy control’ for medical research studies, becoming an AusME Registry participant is the simplest way to get involved in research!

Sign up today and make a difference!
zurl.co/4ebne
Promotional graphic showing a smiling older woman hugging a young man on a couch. Text reads: “AusME From one small act comes big hope,” “Join the AusME today,” and “Your contribution could help unlock answers for millions worldwide who are still waiting for hope and healing,” with the Emerge Australia logo.
February 2, 2026 at 9:00 PM
Reposted by Tom Kindlon
walk4me.bsky.social
We would love you to join Walk for ME 2026 and help increase awareness of ME along with raising funds for desperately needed biomedical research!
www.justgiving.com/team/walkforme2026
More info
www.facebook.com/events/2013016925929255
or
www.walkforme.co.uk
#W4ME #IIME #meresearchuk #ME
February 1, 2026 at 6:34 PM
Reposted by Tom Kindlon
abrokenbattery.bsky.social
A powerful introduction to a parliamentary debate in the Netherlands on post-acute infection syndromes (PAIS), including #LongCOVID, #MECFS, chronic Lyme & post-sepsis conditions.

Dutch MP Kostić describes it as one of the biggest medical scandals of recent decades. (29/1/26)
January 31, 2026 at 6:30 PM
Reposted by Tom Kindlon
abrokenbattery.bsky.social
CW: assisted suicide, severe ME/CFS

Sadly, Samuel, 21, died on 30 Jan after living with severe ME/CFS.

His doctor warns about the number of patients being failed by the system: “I keep hearing the phrase - I don’t want to live like this anymore”

www.heute.at/s/samuels-ar...
February 1, 2026 at 6:34 AM
Reposted by Tom Kindlon
abrokenbattery.bsky.social
Full ORF report on the death of Samuel by assisted suicide ME/CFS

Highlights the lack of treatments and support for people with #MECFS in Austria (3 mins 30) (English subtitles)

youtu.be/uGultygDEIg?...
Austrian News report following the death of Samuel by assisted suicide
YouTube video by Broken Battery
youtu.be
February 2, 2026 at 8:09 AM
Reposted by Tom Kindlon
abrokenbattery.bsky.social
CW Edited clip from an ORF report on the death of Samuel by assisted suicide.

Highlights that many people don’t know about the illness, there are no effective treatments, there is a lack of care, services, financial aid and support for people with #MECFS in Austria.
February 2, 2026 at 8:01 AM
Reposted by Tom Kindlon
abrokenbattery.bsky.social
Three children in one family have all been diagnosed with #MECFS. One also has been diagnosed with #LongCovid following Covid infection.

New article linked to the BBC radio segment about the Rosetta study for ME/CFS and Long Covid.

www.bbc.co.uk/news/article...
Long Covid and ME patients 'hopeful' about Rosetta Stone study
The £1.1m Rosetta Stone study hopes to make a breakthrough by comparing both conditions.
www.bbc.co.uk
February 2, 2026 at 1:24 PM
Reposted by Tom Kindlon
abrokenbattery.bsky.social
BBC Three Counties Radio discusses the Rosetta Stone Study into the links between Long Covid and ME/CFS, featuring Dr Charles Shepherd from the ME Association and a Tim who provides patient perspective (7 mins).

youtu.be/TMqxCHPT1ZU?...
Long Covid and ME/CFS: Rosetta Stone Study | BBC Three Counties Radio
YouTube video by Broken Battery
youtu.be
February 2, 2026 at 9:13 AM
Reposted by Tom Kindlon
abrokenbattery.bsky.social
Tim explains how #MECFS is often misunderstood as “just fatigue”, and how pushing through activity can make symptoms permanently worse. He describes his limitations, that activity makes him worse, and how all he can do its rest as there is currently no effective treatment.
February 2, 2026 at 1:30 PM
tomkindlon.bsky.social
Peter White’s own research (the PACE Trial) actually found the opposite: with the approaches he recommends, graded exercise therapy and CBT, patients didn’t get better
link.springer.com/article/10.1...
#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
February 3, 2026 at 4:24 PM
Reposted by Tom Kindlon
batemanhornecenter.bsky.social
Long COVID affects children and young adults too, often with PEM, orthostatic symptoms, and major impacts on school and daily life.

Learn more in these two pediatric ECHO sessions with Melanie Hoppers, MD:
▶️ https://youtu.be/no1a1A4tMfw
▶️ https://youtu.be/u6PkRNiCbRQ
Gray background with text: "Long COVID & Post-Infectious Syndromes ECHO. Pediatrics & Young Adults Parts 1 & 2: Diagnosis, Management & Practical Care." Presented by Melanie Hoppers, MD, Bateman Horne Center, Project ECHO, University of Utah Health.
January 28, 2026 at 8:09 PM
Reposted by Tom Kindlon
batemanhornecenter.bsky.social
February online events are here 💙
Support groups - Tuesdays, Feb 3 & 17
Coffee with a Clinician - Wednesday, Feb 11
Register: https://bit.ly/4npZ4Ud
Upcoming online events in February 2026: Support Group on Feb 3 and 17, and "Coffee" with a Clinician on Feb 11. Register at batemanhornecenter.org/events.
January 30, 2026 at 9:24 PM
tomkindlon.bsky.social
“Fibromyalgia is now recognized as a disability, expanding rights in Brazil.
Law No. 15.176/2025 guarantees preferential treatment, inclusion in the job market, and other benefits.”

folhadolitoral.com.br/en/editorias...

#Fibromyalgia #Fibro #FMS #FM
Fibromyalgia is now recognized as a disability, expanding rights in Brazil.
Law No. 15.176/2025 guarantees preferential treatment, inclusion in the job market, and other benefits.
folhadolitoral.com.br
February 3, 2026 at 1:11 PM
tomkindlon.bsky.social
"the relationship between reporting persisting symptoms & increased healthcare consumption could not be explained by cognitive-behavioural factors, depressive symptoms or neuropsychological functioning."

link.springer.com/article/10.1...

Screenshot from Science for ME update

#LongCovid #NeuroPASC
Healthcare Consumption and Work Absenteeism of Individuals With and Without Persistent Complaints After COVID-19: The Role of Cognitive-Behavioural Factors, Neuropsychological Functioning and Depressive Symptoms — Verveen et al. "the relationship between reporting persisting symptoms and increased healthcare consumption could not be explained by cognitive-behavioural factors, depressive symptoms or neuropsychological functioning."
February 3, 2026 at 2:11 AM
tomkindlon.bsky.social
A cross-continental comparative analysis of the neurological manifestations of Long COVID

www.frontiersin.org/journals/hum...

Screenshot from latest Science for ME weekly update

#LongCovid #NeuroPASC #COVIDBrain #PASC #PwLC #postcovid #postcovid19
A cross-continental comparative analysis of the neurological manifestations of Long COVID — Jimenez et al. "This study found that overall, cognitive and sleep disorders, headache and dizziness were the most frequent neurologic symptoms as well as fatigue." "Neuro-PASC affects young and middle-aged adults in their prime, causing significant detrimental impact on the workforce, productivity and innovation all over the world."
February 3, 2026 at 1:58 AM
tomkindlon.bsky.social
From Austria:

Use and Perceived Helpfulness of Different Intervention Strategies in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome & Depression

www.mdpi.com/2077-0383/15...

Screenshot from latest Science for ME weekly update

#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
Use and Perceived Helpfulness of Different Intervention Strategies in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and Depression — Marie Celine Dorczok et al. "Findings suggest that participants with ME/CFS tend to adopt an exploratory and expansive intervention approach, potentially reflecting the lack of standardized guidelines and limited effectiveness of available treatment options" "Participants with depression, in contrast, appeared to follow more guideline-concordant, evidence-based treatment pathways."
February 3, 2026 at 1:49 AM
tomkindlon.bsky.social
How can we manage our wellbeing when interacting with others online?

www.actionforme.org.uk/resource/beh...

"In this article, we start a conversation about life online, with some reflections on how to manage our wellbeing in this environment."

#MEcfs #CFS #PwME #chronicillness #chroniclife
Behind the screen From InterAction 120, published autumn 2025 How can we manage our wellbeing when interacting with others online? SPEED READ In our digital age, we can communicate in various ways. We can form relationships online that are meaningful, valuable and supportive. There are real people behind the screens. This has both benefits and challenges. In this article, we start a conversation about life online, with some reflections on how to manage our wellbeing in this environment. ***
February 2, 2026 at 11:22 PM
tomkindlon.bsky.social
Exciting to read about the ME/CFS research studies planned in the Netherlands

Millions of euros of taxpayers' money is supporting biomedical research

Google English translation:
nmcb-eu.translate.goog/general-asse...

#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcvs #CVS
General Assembly Jan '26 Patient Report from the NMCB General Assembly Opening of the NMCB General Assembly The General Assembly of the Netherlands ME/CFS Cohort and Biobank Consortium (NMCB) on January 13, 2026, was opened by Jos Bosch, project leader of the consortium. In his introduction, he outlined how NMCB has developed since its inception from a relatively compact research program into a broad, national collaboration that now encompasses thirteen research projects. Bosch discussed the infrastructure that forms the core of the consortium. NMCB connects all seven university medical centers in the Netherlands, supplemented by universities, research institutes such as TNO, clinical partners, and patient organizations. This shared infrastructure consists of a comprehensive patient registry, multiple biobanks (blood, muscle tissue, brain material), and a broad testing program including MRI, EEG, cognitive tests, and autonomic function measurements. A key point in his opening remarks was the accessibility of the research. Bosch emphasized that NMCB explicitly focuses on the participation of seriously ill and homebound patients, including through home measurements, mobile measurement setups, and adapted protocols. This group is often overlooked in research, even though it is there that the most pronounced biological signals are potentially visible.
February 2, 2026 at 7:32 PM
Reposted by Tom Kindlon
batemanhornecenter.bsky.social
February Online Support Group
Chronic Illness: Facing Limits & Losses (Moving Through Grief)

Tues, Feb 3 | 1pm MST
🔗 https://bit.ly/4npZ4Ud

We’ll talk about depression in chronic illness, coping tools, and emotional support during dark moments. A space for honesty, care, and connection. 🩵
Woman sitting on bed with laptop; text reads, "Online Support Group: Chronic Illness - Facing Limits and Losses (Moving through Grief), Tuesday, Feb 3, 1 pm MST."
February 2, 2026 at 5:07 PM
Reposted by Tom Kindlon
davetuller1.bsky.social
Here's my take on some of the debate over Invisible Illness, the new medical anthropology book that has triggered debates and controversy. This post examines the back and forth over the chapter that includes PACE and the history of the creation of the CFS construct.

virology.ws/2026/02/01/t...
Trial By Error: New Medical Anthropology Book on Chronic Illness Triggers Controversy | Virology Blog
By David Tuller, DrPH While I was on medical leave for the last few weeks, the fascist regime's brownshirts executed two people protesting the military ...
virology.ws
February 1, 2026 at 6:56 PM
tomkindlon.bsky.social
(UK)
News Release 2-Feb-2026
Tracker to help manage Long COVID energy levels created by researchers

www.eurekalert.org/news-release...

"app with a wearable tracker that gave real-time feedback and alerts when they were close to doing too much"

www.nature.com/articles/s41...

#LongCovid #MEcfs
News Release 2-Feb-2026 Tracker to help manage Long COVID energy levels created by researchers Peer-Reviewed Publication Lancaster University FacebookXLinkedInWeChatBlueskyMessageWhatsAppEmail DrLawrenceHayes image: Dr Lawrence Hayes of Lancaster Medical School view more Credit: Lancaster University The first study to test a digital tool designed to help people with Long COVID manage their energy levels has been developed by a team of researchers. The paper published in Nature Communications is entitled “A Digital Platform with Activity Tracking for Energy Management Support in Long COVID: A Randomised Controlled Trial”. In this study, funded by the National Institute for Health and Care Research (NIHR), people with Long COVID tried out a new app called “Pace Me” to help manage their energy levels. The tool combines a wearable activity tracker (Fitbit watch) with an app that sends helpful messages throughout the day, reminding users when they may be doing too much.
February 2, 2026 at 3:59 PM
Reposted by Tom Kindlon
ph-ph-ph.bsky.social
Long Covid
🦠
Dysregulated Immunity

Epstein-Barr Virus
Human Herpes Virus 4
HHV-4
tomkindlon.bsky.social Tom Kindlon @tomkindlon.bsky.social · 2d
Diminished EBV-Specific Humoral Immunity is Associated with Neuropsychiatric Long COVID Development up to 12 Months
#PostCOVID19 Symptom Onset

www.biorxiv.org/content/10.6...

Screenshot from latest Science for ME weekly update

#LongCovid #PASC #PwLC #postcovid #LC #PostCovidSyndrome
Diminished EBV-Specific Humoral Immunity is Associated with Neuropsychiatric Long COVID Development up to 12 Months Post-COVID-19 Symptom Onset — Philip Samaan et al. "our study highlights that neuropsychiatric long COVID symptoms may not be attributable to alterations in SARS-CoV-2-specific cellular or humoral immunity. However, diminished EBV-specific humoral immunity emerged as a potential risk factor for neuropsychiatric long COVID development"
February 2, 2026 at 2:50 AM
Reposted by Tom Kindlon
Apt
tomkindlon.bsky.social Tom Kindlon @tomkindlon.bsky.social · 3d
‪2/‬
‪"I can choose to exceed my limits, but I can’t choose to recover from exceeding them, and telling me to try is like telling a diabetic who’s‬ ‪being forced to eat a box of fudge to “try” not to become hyperglycaemic"‬

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #PEM

‪
February 2, 2026 at 7:00 AM