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tomkindlon.bsky.social
Tom Kindlon
@tomkindlon.bsky.social
6.9K followers 200 following 7K 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 · 6d
A big thank you to everyone who did anything, big or small, for the Myalgic Encephalomyelitis / Chronic Fatigue Syndrome +/or Long Covid cause in 2025 (including simply sharing messages on social media). 👏

Together we can make a difference. 👍

#MEcfs #LongCovid
Image showing “thank you” in lots of different languages
tomkindlon.bsky.social
Carer for her daughter with very severe ME, Dr Greer @drjogreer.bsky.social has developed her articles into an advocacy project described in this series of blog articles.

www.theredtreeandme.com/p/the-red-tr...

Screenshot from latest Science for ME weekly update

#LongCovid #MEcfs #SevereME
Blog: The Red Tree and M.E. by Dr Jo Greer "As an educational psychologist working with children in care in the UK, I often used therapeutic stories in my practice. I especially loved The Red Tree by Shaun Tan". " Amidst the disconcertingly dark imagery in The Red Tree, the recurring motif of the red leaf offers peace and assurance as it speaks to hope." Carer for her daughter with very severe ME, Dr Greer has developed her articles into an advocacy project described in this series of blog articles.
January 6, 2026 at 2:00 AM
tomkindlon.bsky.social
Video essay: "On hope and chronic illness"

www.youtube.com/watch?v=jMiV...

Screenshot from latest Science for ME weekly update

#chronicillness #MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
Video essay On hope and chronic illness. Jonathan, who has had ME/CFS since age 14, describes vividly his experiences with a series of damaging alternative and medical treatments, and the importance of getting a diagnosis after 6 years of misdiagnosis. He discusses the importance of hope, but, says: "I had no idea that the world of illness was so full of predators. They’d dispute that label, but they harm desperate people by offering false hope".
January 6, 2026 at 1:48 AM
tomkindlon.bsky.social
"Re-analysis: 200 treatments by 4000 Long Covid/ME patients" by Siebe Rozendal (January 4, 2026)

viralpersistence.substack.com/p/re-analyzi...

#LongCovid #MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
Re-analysis: 200 treatments by 4000 Long Covid/ME patients I ranked 200+ treatments by effect scores and got a new Top 5 Siebe Rozendal Jan 04, 2026 In 2023, a survey was run among 3,925 ME/CFS and Long Covid patients called TREATME. It asked patients which treatments they have tried and how they responded to it. It is by far the biggest survey of its kind. I am really grateful to Martha Eckey, a PharmD and patient herself, for collecting the data and to the Open Medicine Foundation for having helped her to analyze and publish it.
January 5, 2026 at 8:31 PM
Reposted by Tom Kindlon
batemanhornecenter.bsky.social
Connection matters, especially in the new year 💙

Our January virtual events are here, with an update to share:
Support Group now meets on the FIRST Tuesday of the month (starting Jan 6).

Free, virtual, and open to the all.
👉 batemanhornecenter.org/events
Upcoming online events for January 2026: Support Group on Jan 6 and 20, "Cultivating Hope" and "Navigating Loneliness." "Coffee with a Clinician" on Jan 14. Register at batemanhornecenter.org/events.
January 2, 2026 at 9:11 PM
tomkindlon.bsky.social
Pleased with the metrics on my FB page these days (see image for latest figures) 😀

Numbers aren’t everything and not all my posts on FB are that important but sometimes it can be useful to reach a good number of people.

#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #LongCovid
Analytics > 28 days [this is highlighted i.e. the figures relate to 28 days] 7 days Today Views 3M ↑ 47% Viewers 799,258 ↑ 91% Engagement 192,037 ↑11% Net followers 728 ↓ -10% Delighted to reach 3 million views over the last 28 days which requires over 107,000 views per day. 🍾 Thanks for everyone’s support with shares, reactions (I.e. likes, etc.), comments, follows, etc. 👍 It’s great to see a return from the time and energy I’m devoting. It also helps ensure a good number of people will see your comments. Note how more views, etc. doesn't necessarily translate to a comparable increase in followers but I'm happy with the growth in both of the last 28-day periods. On average, it translates to an increase of approximately 10,000 followers per year.
January 5, 2026 at 6:00 PM
tomkindlon.bsky.social
Medscape Medical News:

"Long-Time NINDS Director Walter Koroshetz Terminated"

www.medscape.com/viewarticle/...

*National Institute of Neurological Disorders and Stroke

#LongCovid #MEcfs #Migraine #dysautonomia #POTS #Fibromyalgia #chronicillness
Medscape Medical News Long-Time NINDS Director Walter Koroshetz Terminated Alicia Ault January 05, 2026
January 5, 2026 at 1:40 PM
Reposted by Tom Kindlon
irishmecfsassoc.bsky.social
2 days to go
#MEcfs #PwME
irishmecfsassoc.bsky.social Irish ME/CFS Association @irishmecfsassoc.bsky.social · 9d
Informal ME/CFS social meet-up in Dublin hosted by Tom Kindlon @tomkindlon.bsky.social on Wednesday, January 7.

Hopefully we’ll see some of you there irishmecfs.org/events

Carers/parents/similar welcome.

#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
Informal ME/CFS social meet up in Dublin 2:30 PM-4 PM, Wednesday, January 7 The Bell Bar & Restaurant, Dublin 15, D15 EW77 https://www.thebell.ie All welcome Buy your own food +/or drink Register for any updates (in case cancelled): tomkindlon@irishmecfs.org Host: Tom Kindlon Irish ME/CFS Association for Information. Support & Research logo
January 5, 2026 at 12:44 PM
tomkindlon.bsky.social
CFS/ME - from hysteria to biomedical illness
On recent hypotheses & research findings

tidsskriftet.no/2026/01/kron...

Google Translate is not giving a translation page but if I go to the site in Google Chrome, an English translation does come up

Screenshot from Science for ME update

#MEcfs #PwME
The Journal of the Norwegian Medical Association CFS/ME - from hysteria to biomedical illness Opinion piece by Ola Didrik Saugstad, Donia Jamal Ramadan and Marte Kathrine Viken on recent hypotheses and findings from research into ME. The authors say that the public health system needs to take a much larger responsibility for this patient group and that patients must be met with knowledge and respect.
January 5, 2026 at 2:00 AM
Reposted by Tom Kindlon
scienceforme.bsky.social
Our latest News in Brief summary has headlines and links to further reading for #MECFS, #LongCovid, and related news for the week of Dec. 29 - Jan. 4.

Topics:
News, advocacy and articles
Coming events
Research news and commentary
& Published research

www.s4me.info/threads/news...
News in Brief - January 2026
This thread has a Science for ME 'News in Brief' post for each week in January 2026 by a team including @Trish, @Kalliope, @ahimsa and @SNT Gatchaman. Scroll down to see this week's news.
www.s4me.info
January 4, 2026 at 10:36 PM
Reposted by Tom Kindlon
scienceforme.bsky.social
Our latest News in Brief summary has headlines and links to further reading for #MECFS, #LongCovid, and related news for the week of Dec. 22 - 28.

Topics:
News, advocacy and articles
Coming events
Research news and commentary
& Published research

www.s4me.info/threads/news...
News in Brief - December 2025
This thread has a Science for ME 'News in Brief' post for each week in December 2025 by a team including @Trish, @Kalliope, @ahimsa and @SNT Gatchaman. Scroll down to see this week's news.
www.s4me.info
December 28, 2025 at 8:37 PM
tomkindlon.bsky.social
An occupational therapist who specialises in #longCovid writes on trying to remain #Covid -conscious at the moment

onelifelivedwell.substack.com/p/not-moving...

Towards the end are some specific suggestions

#CovidConscious #MaskUp #CovidIsAirbone #ChronicIllness #CovidCautious #CovidIsNotOver
One Life Lived Well logo Not Moving On, But Moving With The quiet way our intentional choices protect us, connect us, and shape a better world. Abby Sep 13, 2025 You can care about COVID and still live a full, connected, and beautiful life. The two are not opposites, even if the world seems determined to treat them that way. Caring just means you’ve stayed awake to what’s happening and let that awareness shape how you move: more intentionally, with more kindness, and with more creativity.
January 4, 2026 at 8:54 PM
Reposted by Tom Kindlon
profbardlaw.bsky.social
This is all reminiscent of how people with stomach ulcers were treated before the fairly recent discovery that ulcers are caused by a bacteria & cured by antibiotics— the assumption was that they had ulcer personalities & were encouraged to drink milk which only made things worse
tomkindlon.bsky.social Tom Kindlon @tomkindlon.bsky.social · 1d
Many with ME/CFS and other chronic illnesses may be able to relate some if not many of these

This was posted as a comment on my FB page today, but I'm not sure who created it originally.

#LongCovid #MEcfs #chronicillness #hiddenillness #invisibleillness #ChronicIllnesses #Spoonies #Spoonie
THE LONG COVID ULTIMATE BINGO Grid showing lots of irritating comments people with long Covid and other chronic illnesses may hear said to them
January 4, 2026 at 8:23 PM
tomkindlon.bsky.social
Many with ME/CFS and other chronic illnesses may be able to relate some if not many of these

This was posted as a comment on my FB page today, but I'm not sure who created it originally.

#LongCovid #MEcfs #chronicillness #hiddenillness #invisibleillness #ChronicIllnesses #Spoonies #Spoonie
THE LONG COVID ULTIMATE BINGO Grid showing lots of irritating comments people with long Covid and other chronic illnesses may hear said to them
January 4, 2026 at 7:26 PM
Reposted by Tom Kindlon
solveme.bsky.social
In "2025 Advocacy in Review: What You Helped Push Forward," Solve Director of Advocacy Monique Wike looks back at a year of gridlock for biomedical research and public health and how community members kept #MECFS on the agenda.

Read it here:
solvecfs.org/2025-advocac...
2025 Advocacy in Review: What You Helped Push Forward - Solve ME/CFS Initiative
In 2025, advocates led meetings, shared their stories, and pushed lawmakers to act on our community’s top federal priorities. It made a difference.
solvecfs.org
December 30, 2025 at 1:04 AM
Reposted by Tom Kindlon
solveme.bsky.social
Solve M.E. President Emily Taylor reflects on the impact of staying engaged, staying vocal, and staying invested in a future that still has so much left to build.

Read more here:
ow.ly/7qML50XQcqc

#MECFS #LongCovid #advocacy #research
A quote from Solve ME President and CEO Emily Taylor about the successful collaboration of patients, researchers, caregivers and clinicians in 2025.
December 31, 2025 at 9:15 PM
tomkindlon.bsky.social
Figure showing impairments in people with #MECFS are mainly in the non-mental health/emotional health areas

"Median SF36v2 scores among all study participants over the 12-month study period when compared with Australian population norms"

#CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
"Median SF-36v2 scores among all study participants over the 12-month study period when compared with Australian population norms." Abbreviations: PwME/CFS People with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome; SF36v2 36-Item Short-Form Health Survey version
January 4, 2026 at 3:56 PM
Reposted by Tom Kindlon
mecfsskeptic.bsky.social
1) 🇨🇳 A Chinese study looked at the mycobiome, the fungi living in the human body, in 59 ME/CFS patients and 59 controls.

Patients had, for example, more Aspergillus and less Candida.
January 4, 2026 at 8:57 AM
tomkindlon.bsky.social
Description from Science for ME update:
“ME/CFS Science Blog has published a review of the most interesting ME/CFS studies in 2025, including DecodeME, the daratumumab trial, autopsy findings from the Netherlands, & most extensive study on antibodies in ME/CFS to date”
#MEcfs #CFS #PwME
mecfsskeptic.bsky.social ME/CFS Science @mecfsskeptic.bsky.social · 6d
1) We’ve just published our review of the most interesting ME/CFS studies of 2025.

It feels like this year, we’ve made a significant step towards understanding the pathophysiology of ME/CFS.

A brief overview of the studies that caught our eye.
January 4, 2026 at 1:50 PM
tomkindlon.bsky.social
Aotearoa/New Zealand

ANZMES Survey

Open to NZ members and non-members.

"As we transition to a Charitable Trust and look toward the future, we want to ensure our goals align with the reality of what you expect."

forms.gle/sLro7oxTGh1t...

#MyalgicEncephalomyelitis #MEcfs #CFS #PwME
ANZMES Survey 2026
ANZMES is changing. As we transition to a Charitable Trust and look toward the future, we want to ensure our goals align with the reality of what you expect. We are asking for your help to rank our pr...
forms.gle
January 4, 2026 at 1:44 PM
Reposted by Tom Kindlon
davetuller1.bsky.social
Remarkably, Alem Matthees, the Australian patient whose freedom of information request liberated the raw data from the PACE TRIAL, has reported some improvements in his condition: virology.ws/2026/01/02/t...
Trial By Error: My Unexpected E-Mail Exchange with Alem Matthees | Virology Blog
By David Tuller, DrPH In recent months, one of the most high-profile people with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)—Australian Alem ...
virology.ws
January 3, 2026 at 1:08 AM
Reposted by Tom Kindlon
atranscendedman.bsky.social
Mass General Brigham followed over 18,000 births and found that children exposed to COVID in the womb had a 29% higher risk of neurodevelopmental diagnoses by age 3.

Risks were highest with third-trimester exposure and in boys.

journals.lww.com/greenjournal...
journals.lww.com
January 3, 2026 at 11:32 PM
Reposted by Tom Kindlon
me-cfs.bsky.social
“I am still bedbound now, still unable to talk, or listen to music, or watch TV. But I will do more when able to, this is a natural instinct or process and needs no intrusive input from others. It happens whenever people get over a cold or flu.”
- Alem

Louder for the psychologisers at the back!
January 3, 2026 at 11:10 AM
tomkindlon.bsky.social
I thought I would repost this to highlight again some of the many varied symptoms that can be found in #MyalgicEncephalomyelitis/#ChronicFatigueSyndrome

Particularly relevant when similarities with the #LongCovid presentation in some people are being missed

#MEcfs #CFS #PwLC
1/
APPENDIX 2. ME/CFS Symptom Prevalence and Severity (These prevalence and severity figures are from A definition-based analysis of symptoms in a large cohort of patients with chronic fatigue syndrome, P. De Becker, N. McGregor, and K. De Meirleir. Journal of Internal Medicine 2001;250:234-240.) A total of 2,073 consecutive patients with major complaints of prolonged fatigue were assessed. Among them 1,578 met the Fukuda criteria and of those, 951 met the Holmes criteria. The figures indicate the differences in prevalence and severity of symptoms between these patient groups.
January 3, 2026 at 2:24 AM
tomkindlon.bsky.social
"Reimagining You: Finding identity, meaning, & purpose when life doesn’t look the way it used to"

onelifelivedwell.substack.com/p/reimaginin...

Blog post by sympathetic & knowledgeable occupational therapist who specialises in #MECFS & #longCovid

#chronicillness #Spoonies #Spoonie #ChronicallyIll
Reimagining You Finding identity, meaning, and purpose when life doesn’t look the way it used to. “Loss of function.” It’s a phrase that feels clinical and detached, but anyone living with chronic illness, post-viral fatigue, cognitive changes, or sudden physical limitations knows that phrase barely scratches the surface. It doesn’t convey the ripple of loss that stretches far beyond the body and reaches deep into the parts of yourself that used to feel familiar and essential. When you can’t cook your favorite meals, drive yourself to work, shower independently, hold your child, or focus on a task, it isn’t just about energy.
January 2, 2026 at 10:36 PM
Reposted by Tom Kindlon
h2obio.bsky.social
Long-term improvement through reduced activity in Long Covid and ME/CFS, particularly in the categories of physical function, social roles, and cognition.
January 2, 2026 at 1:11 PM