Tom Kindlon
LightNews LightNews
banner
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
Posts Replies Media Videos
Pinned
tomkindlon.bsky.social
Tom Kindlon @tomkindlon.bsky.social · 1d
"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.
tomkindlon.bsky.social
“Are you tired all the time? This is when you should see your GP: Your symptoms might give you an idea of what’s causing your fatigue”

www.independent.co.uk/life-style/h...

Covers a number of the most common causes fairly briefly. Good to see a section on #MECFS. Have no major problems with it.
Are you tired all the time? This is when you should see your GP
Your symptoms might give you an idea of what’s causing your fatigue
www.independent.co.uk
January 7, 2026 at 1:19 PM
Reposted by Tom Kindlon
mecfsskeptic.bsky.social
1) This hypothesis paper argues that herpesviruses aren't either active (lytic replication) or passive (latency) but that there's a third state called 'abortive lytic replication' where the virus is active but doesn't replicate itself.

They suspect this plays a role in ME/CFS.
January 6, 2026 at 9:33 AM
Reposted by Tom Kindlon
mecfsskeptic.bsky.social
In this review, the pooled prevalence of Long COVID (≥1 symptom persisting ≥6 months) across 14 prospective studies was 18%.

(haven't read all these studies - looks like the Xie 2024 Veterans Affairs study is pulling the estimate down).
www.mdpi.com/2227-90...
January 7, 2026 at 8:19 AM
Reposted by Tom Kindlon
jblainefoster.bsky.social
Has anyone done a trial on desmopressin in MECFS? Because that seems like the obvious next step

Baseline P-VP, urine osmolality, and plasma osmolality; placebo, low dose, and standard dose cohorts; validated questionnaire that includes PEM + regular labs for hyponatremia; repeat baseline labs @ end
tomkindlon.bsky.social Tom Kindlon @tomkindlon.bsky.social · 14h
3/

Low Vasopressin In Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

www.endocrinepractice.org/article/S153...

Screenshot from latest Science for ME weekly update

#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
Low Vasopressin In Myalgic Encephalomyelitis/Chronic Fatigue Syndrome— Helena M. Huhmar et al. "Our results reveal a high prevalence of low P-VP, low urine osmolality and high plasma osmolality after overnight water restriction." "The high incidence of low VP in our patient cohort suggests that chronic down-regulation of VP secretion may be an elementary part of pathophysiology of ME/CFS"
January 7, 2026 at 5:58 AM
tomkindlon.bsky.social
Supporting people with #MyalgicEncephalomyelitis in primary care by Sonya Chowdhury , CEO of Action for ME @actionforme.bsky.social

Paywalled:
www.magonlinelibrary.com/doi/abs/10.1...

Screenshot from latest Science for ME weekly update

#MEcfs #CFS #PwME #ChronicFatigueSyndrome
Supporting people with myalgic encephalomyelitis in primary care — Sonya Chowdhury "ME is not rare, nor is it going away. People with ME need recognition, compassion and commitment from every corner of the healthcare system. For general practice nurses, this starts with listening, understanding the nature of the illness and supporting patients through the long journey of managing their symptoms."
January 7, 2026 at 2:02 AM
tomkindlon.bsky.social
Complex chronic adverse events following immunization: a systemic critique and reform proposal for vaccine pharmacovigilance

journals.sagepub.com/doi/10.1177/...

Screenshot from latest Science for ME weekly update

#LongCovid #MEcfs #POTS
Complex chronic adverse events following immunization: a systemic critique and reform proposal for vaccine pharmacovigilance — Tiff-Annie Kenny "While the narrative arc, structure, and analysis are shaped by the author’s lived experience as an affected patient, the arguments are grounded in a synthesis of peer-reviewed literature, regulatory reviews, and case-based evidence." "This perspective has enabled the discussion of structural and epistemic limitations that warrant urgent attention."
January 7, 2026 at 1:44 AM
tomkindlon.bsky.social
3/

Low Vasopressin In Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

www.endocrinepractice.org/article/S153...

Screenshot from latest Science for ME weekly update

#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
Low Vasopressin In Myalgic Encephalomyelitis/Chronic Fatigue Syndrome— Helena M. Huhmar et al. "Our results reveal a high prevalence of low P-VP, low urine osmolality and high plasma osmolality after overnight water restriction." "The high incidence of low VP in our patient cohort suggests that chronic down-regulation of VP secretion may be an elementary part of pathophysiology of ME/CFS"
January 7, 2026 at 1:38 AM
tomkindlon.bsky.social
Nina E. Steinkopf's @ninasteinkopf.bsky.social letter to editor regarding the lightning process

journals.lww.com/jfmpc/fullte...

Screenshot from latest Science for ME weekly update

#LongCovid #MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
Journal of Family Medicine Letter to editor regarding the lightning process Nina E. Steinkopf clarifies that a previously published article by Arroll et al. is not a clinical audit, but is research that has been undertaken and published without ethics approval. "I trust that you will ensure the correction of this error to uphold the integrity of your journal."
January 7, 2026 at 1:31 AM
Reposted by Tom Kindlon
irishmecfsassoc.bsky.social
At home IV fluids?

#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
An enquiry we in the Irish ME/CFS Association just got. Any comments welcomed (feel free to contact us/Tom Kindlon directly if you prefer). We will presume we can pass on any comments (anonymously) unless you say otherwise. --- Im just wondering if you are aware of services where I can access ongoing iv fluids at home? I have a medical card but no health issurance but would consider it if it allowed me access to it. The HSE/public services dont seem to provide this type of service. I even enquired through my local palliative care service, (not currently availing of their services). My consultant believes this could help to improve things for me a little bit. Any information you have would be greatly appreciated.
January 6, 2026 at 7:24 PM
tomkindlon.bsky.social
"What Pacing Really Means: The practice of pacing: choosing presence, patience, & self-respect in every decision"

onelifelivedwell.substack.com/p/what-pacin....

Blog post by a sympathetic and knowledgeable occupational therapist who specialises in #longCovid & #MECFS. No magic bullets in this.
What Pacing Really Means The practice of pacing: choosing presence, patience, and self-respect in every decision. Abby Sep 20, 2025 If you’re living with Long COVID, ME/CFS, POTS, or any other energy-limiting condition, you’ve probably been told you need to pace more times than you can count. Doctors, therapists, online forums: all of them tell you to pace. But what does that actually mean? Pacing isn’t just resting. It’s not about stopping only when you’re completely exhausted, and it’s definitely not about pushing through “good days” and paying for it later. It’s about living within your energy envelope, making proactive choices instead of reactive ones, and structuring your life around what your body can sustainably manage.
January 6, 2026 at 7:33 PM
tomkindlon.bsky.social
News Release 5-Jan-2026

"Food insecurity and adverse social conditions tied to increased risk of long COVID in children: Results identified social risk factors associated with greater odds of prolonged SARS-CoV-2 symptoms"

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

#LongCovid #LongCovidKids #LCKids
News Release 5-Jan-2026 Food insecurity and adverse social conditions tied to increased risk of long COVID in children Results identified social risk factors associated with greater odds of prolonged SARS-CoV-2 symptoms Peer-Reviewed Publication Brigham and Women's Hospital FacebookXLinkedInWeChatBlueskyMessageWhatsAppEmail Mass General Brigham researchers looked at data on 4,584 participants across 52 U.S. sites from the federally funded RECOVER-Pediatrics study Results identified social risk factors associated with greater odds of prolonged SARS-CoV-2 symptoms New research led by Mass General Brigham investigators suggests that long COVID is more prevalent in school-aged children and adolescents who experience economic instability and adverse social conditions. The multi-center, observational study found that the risk of long COVID was significantly higher in households that faced food insecurity and challenges such as low social support and high levels of discrimination. Results are published in JAMA Pediatrics. “Long COVID in children is especially concerning because of the potential for long-term health effects that could persist into adulthood,” said co-first author Tanayott Thaweethai, PhD, of Massachusetts General Hospital Biostatistics. "Public health interventions that target social risk factors—such as food insecurity and lack of social support—are critical to reduce the burden of long COVID and safeguard the overall health of children as they continue to acquire COVID-19."
January 6, 2026 at 3:21 PM
tomkindlon.bsky.social
TREATME Survey: Top 10 Treatments by Effect Size

#LongCovid #MEcfs
TREATME Survey: Top 10 Treatments by Effect Size (All respondents, corrected for median uncertainty) Omalizumab (Xolair) (n=11, p=0.09) IV Saline (n=193, p<.001**) - Maraviroc (n=58, p<.001**) ketamine (n=30, p=0.01) - Enoxaparin or Unfractionated Heparin (n=58, p=0.00) - Viread (tenofovir) (n=9, p=0.24) Ivabradine (n=226, p<.001**) Pacing (n=803, p<.001**) Tollovid ≥15 days (n=59, p<.001**) Intravenous/Subcutaneous Immunoglobulin (n=86, p=0.00) - 1 HI 2 3 2.45 [0.69, 4.22] 2.13 [1.84, 2.42] 1.77 [1.23, 2.30] 1.67 [0.93, 2.40] 1.65 [1.00, 2.29] 1.61 [0.29, 2.93] 1.57 [1.29, 1.85] 1.54 [1.42, 1.65] 1.53 [1.04, 2.01] 1.48 [0.99, 1.96] 5 Significantly positive (BH p<0.05) Not significant Median effect (0.513) Effect Size (weighted mean)
January 6, 2026 at 2:19 PM
Reposted by Tom Kindlon
voxem.bsky.social
📣 En ce début 2026, rassemblons-nous à #Marseille le 7/02 pour dénoncer la condition des malades d'encéphalomyélite myalgique - #EMSFC !

Les infos ici : bit.ly/voxem-marsei...

Report en cas de 🌧️. Vous ne pouvez pas venir ? Pas de panique, il y aura d’autres occasions !

1/2
L’Encéphalomyélite Myalgique nous cloue au lit Les pouvoirs publics nous abandonnent Logo de voxEM : un lit d’où émerge un mégaphone qui émet du son. De ce mégaphone émergent les texte : Action à Marseille Samedi 7 février 14h30 Vieux-Port En bas : contact@voxem.fr
January 4, 2026 at 7:13 PM
Reposted by Tom Kindlon
lizworthey.bsky.social
Very cool
tomkindlon.bsky.social Tom Kindlon @tomkindlon.bsky.social · 3d
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 · 8d
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 6, 2026 at 3:52 AM
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
4/
"Let’s make this the decade we finally develop treatments for this condition, writes Sonya Chowdhury. For too long, those living with [ME/CFS] have had to live with disbelief."

www.lbc.co.uk/article/trea...

Screenshot from latest Science for ME weekly update

#MEcfs #PwME
UK LBC Treatment for ME has turned a corner - the UK must not leave patients waiting "Let’s make this the decade we finally develop treatments for this condition, writes Sonya Chowdhury. For too long, those living with [ME/CFS] have had to live with disbelief." Chowdhury highlights the DecodeME results and the need for further research funding. "Action for ME is calling for the creation of a Strategic Research Hub for ME, to ensure that recent scientific progress translates into meaningful treatments."
January 6, 2026 at 1:37 AM
tomkindlon.bsky.social
2/
Journal Published Confusing Section on "Enduring Symptoms" by David Tuller

virology.ws/2025/12/31/t...

Screenshot from latest Science for ME weekly update

#chronicillness #MEcfs
Trial by Error by David Tuller Journal Published Confusing Section on "Enduring Symptoms" "As part of its December issue, Future Healthcare Journal, sponsored by the UK’s Royal College of Physicians, has published a special section called “Challenging Myths: Debunking Functional Disorders.” The special section title itself creates confusion. In what way are functional disorders being “debunked”? I assume the idea is to debunk the purported “myths” about functional disorders, whatever they are—but that’s not what the words mean in this combination."
January 6, 2026 at 1:30 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
2/

“The NINDS Director had periodically been criticized, particularly by those with long COVID or myalgic encephalomyelitis/chronic fatigue syndrome, for what they saw as a disregard for these conditions.”

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
January 5, 2026 at 6:21 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 · 10d
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