Tom Kindlon
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Tom Kindlon
@tomkindlon.bsky.social
6.8K followers 200 following 6.8K 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
tomkindlon.bsky.social
Long-Term Changes in Health-Related Quality of Life and Economic Burden After a SARS-CoV-2 Infection: Analysis of the Long COVID Prospective Cohort Study in Nairobi

www.valuehealthregionalissues.com/article/S221...

Screenshot from latest Science for ME weekly update

#LongCovid #PASC
Long-Term Changes in Health-Related Quality of Life and Economic Burden After a SARS-CoV-2 Infection: Analysis of the Long COVID Prospective Cohort Study in Nairobi — Ângela Jornada Ben et al. "HRQoL is reduced up to 15 months after a SARS-CoV-2 infection compared with the period before COVID-19 and suggest an inequality gap as participants with better health and socioeconomic status are less likely to experience catastrophic expenditures and costs." "Given the convenience sample and observational design, further research is needed to fully assess the health and economic burden of Long COVID at a national level in Kenya."
November 28, 2025 at 1:58 AM
tomkindlon.bsky.social
The role of co-infection in the pathogenesis of acute SARS-CoV-2 infection and development of post-acute sequelae: A perspective

elifesciences.org/articles/106...

Screenshot from latest Science for ME weekly update

#LongCovid #PASC
The role of co-infection in the pathogenesis of acute SARS-CoV-2 infection and development of post-acute sequelae: A perspective — Timothy J Henrich et al. "we briefly review current evidence on the role of SARS-CoV-2 persistence in tissues as a driver of PASC. In the following sections, we discuss how, in the presence or absence of persistent SARS-CoV-2, other microorganisms may favor the development of PASC or exacerbate its severity."
November 28, 2025 at 1:54 AM
tomkindlon.bsky.social
"We demonstrate significant symptom burden in our LC cohort, with LC associated with mitochondrial [dysfunction] in CD56 bright NK cells and CD4+ lymphocytes, as well as blunted IFN-γ responses to LPS stimulation."

dx.doi.org/10.1093/ofid...

Screenshot from Science for ME update

#LongCovid #PASC
Digitally Assessed Long COVID Symptomatology Is Associated With Lymphocyte Mitochondrial Dysfunction and Altered Immune Potential — Sularea et al. "We demonstrate significant symptom burden in our LC cohort, with LC associated with mitochondrial [dysfunction] in CD56 bright NK cells and CD4+ lymphocytes, as well as blunted IFN-γ responses to LPS stimulation."
November 28, 2025 at 1:45 AM
tomkindlon.bsky.social
From the US:

Longitudinal wearable sensor data enhance precision of Long COVID detection

doi.org/10.1371/jour...

Screenshot from latest Science for ME weekly update

#LongCovid #PASC
Longitudinal wearable sensor data enhance precision of Long COVID detection — Chibuike K. Uwakwe et al. "This study demonstrates the efficacy of combining symptom data with longitudinal HR data — refined using step data — to diagnose Long COVID, persisting for up to 260 weeks, via machine learning."
November 28, 2025 at 1:40 AM
tomkindlon.bsky.social
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Virtual Healthcare Services for People Living with Long COVID
static1.squarespace.com/static/66c36...

#LongCovid #PASC #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome
Screenshot of page 1 of report at link
November 27, 2025 at 9:52 PM
tomkindlon.bsky.social
IDK = I don’t know
#disability #chronicillness
cosmiccripple idk who popularised the narrative "i don't let my disability stop me" but it needs to be stomped on, pulverised by a meat grinder and then thrown into the depths of the sea never to be seen again. it is by far the most popular ableist narrative and i see it so much and immediately just think I'm a bad person for not being able to 'get over' my disability despite the fact its an incurable, permanent and severely disabling disability. stop stop stop stop pushing the mindset that people have to persevere despite their disabilities in order to be a worthy person leave me alone and let me be disabled in peace
November 27, 2025 at 8:19 PM
tomkindlon.bsky.social
"JAMA Touts #LongCOVID Exercise Trial with Clinically Insignificant Results; Most LC Exercise Trials Ignore #PEM, Per Sick Times" By David Tuller

virology.ws/2025/11/25/t...

People can think patients can keep improving while an exercise program may simply push them to their conditioning ceiling
That wasn’t the only issue with the MCID in the trial. In my prior post, I forgot to mention another critical point: Whatever benefits participants in the intervention arm did or did not attain, the final results in both groups remained far below the average performance of healthy adults on the ISWT. Overall, the participants achieved a mean distance of 389 meters at the end of the 12-month exercise program. In contrast, a 2013 study of “age-specific normal values for the ISWT” found a distance of 824 meters for 40- to 49-year-olds, 788 meters for 50- to 59-year-olds, 699 meters for 60- to 69-year-olds, and 633 meters for 70-year-olds and up. In other words, the participants in this trial remained seriously disabled across the board—another salient detail ignored by the investigators. To hype statistically significant but minimalist results as if they demonstrated substantial improvement is obviously not helpful to patients. It is also deceptive. No one relying on the JAMANetworkOpen paper or the JAMA news-in-brief follow-up for clinical guidance would have any idea how poorly both arms did compared to healthy adults unless they took the time to dig a bit more deeply on their own.
November 27, 2025 at 5:40 PM
tomkindlon.bsky.social
🧵
News Release 26-Nov-2025

National survey finds virtual health ‘essential’ for Long COVID support: SFU report

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

"virtual services...reduce risk of infections, travel time, and PEM [Post-Exertional Malaise]” (likewise in ME/CFS)

#LongCOVID #PASC #MEcfs #PEM

1/
News Release 26-Nov-2025 National survey finds virtual health ‘essential’ for Long COVID support: SFU report Preliminary results of a national survey conducted by researchers at the Simon Fraser University Faculty of Health Sciences (SFU FHS) has found that Canadians with Long COVID identified virtual healthcare services as essential to their care. Reports and Proceedings Simon Fraser University
November 27, 2025 at 4:47 PM
tomkindlon.bsky.social
From China

Longitudinal assessment of pulmonary perfusion and ventilation defects in long COVID

www.sciencedirect.com/science/arti...

Screenshot from latest Science for ME weekly update

#LongCovid #Covidlung
Longitudinal assessment of pulmonary perfusion and ventilation defects in long COVID: A one-year study using phase-resolved functional lung (PREFUL) MRI — Ouyang et al. "We found ventilation defects normalizing by six months, while perfusion defects persisted for up to one year. Severe perfusion defects at the acute phase were associated with a higher risk of long COVID, persistent dyspnea, and fatigue."
November 27, 2025 at 1:48 AM
tomkindlon.bsky.social
From the US

Clinical, Radiographic, and Physiological Correlates of Post-COVID-19 Dyspnea in Military Health System Beneficiaries

dx.doi.org/10.1093/ofid...

Screenshot from latest Science for ME weekly update

#LongCovid #Covidlung
Clinical, Radiographic, and Physiological Correlates of Post-COVID-19 Dyspnea in Military Health System Beneficiaries: Results From the Chronic Impairment With Pulmonary Symptoms (ChIPS) Sub-study — Goertzen et al. "Overall, this study demonstrates both subjective and objective differences between those with ongoing dyspnea following COVID-19 infection that are not explained by standard investigations typically ordered in clinical care for chronic dyspnea."
November 27, 2025 at 1:42 AM
tomkindlon.bsky.social
"How to Help With ME/CFS and Long COVID Disability Claims"

www.medscape.com/viewarticle/...

Lots of good tips to deal with insurance companies.

Government schemes can vary by country but people in most countries can probably pick up useful tips from this also.

#MEcfs #LongCovid #CFS #PwME
Medscape logo Medscape Medical News Conference News IACFS/ME 2025 How to Help With ME/CFS and Long COVID Disability Claims Miriam E. Tucker November 26, 2025 Detailed notes, objective testing, and legal assistance if necessary are the keys to obtaining disability benefits for patients who are unable to work due to myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) or long COVID.
November 26, 2025 at 5:06 PM
tomkindlon.bsky.social
From Germany:

"this study provides robust evidence of significant cognitive impairments in PASC patients, with attention, working speed, and lexical fluency being the most commonly affected domains."

link.springer.com/10.1007/s004...

Screenshot from Science for ME update

#LongCovid #COVIDBrain
Cognitive impairment, depression, and fatigue in post-COVID and post-vaccination syndrome: a large-scale cross-sectional study — Hanc et al. "this study provides robust evidence of significant cognitive impairments in PASC patients, with attention, working speed, and lexical fluency being the most commonly affected domains."
November 26, 2025 at 1:47 AM
tomkindlon.bsky.social
Evidence for a severe cognitive subgroup in a comprehensive neuropsychological Post-COVID-19 syndrome classification

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

Screenshot from latest Science for ME weekly update

#LongCovid #COVIDBrain #NeuroPASC
Evidence for a severe cognitive subgroup in a comprehensive neuropsychological Post-COVID-19 syndrome classification — Balz et al. "Within this unique clinical cohort of subjectively impaired PCS subjects after COVID-19, we hereby defined a specific 7.5% subgroup of severely cognitively impaired subjects (PCS SCI ). They provided a distinctly different cognitive profile on key cognitive domains, including attentional, memory, and executive function, based on cognitive tests for which group differences were not significantly influenced by depression, anxiety, and fatigue."
November 26, 2025 at 1:40 AM
tomkindlon.bsky.social
ME Research UK is pleased to announce an open call for applications for PhD-level research funding, and we welcome proposals from researchers wishing to investigate the causes, consequences and treatment of ME/CFS. meres.uk/apply

#MEcfs #CFS #PwME
Photo of a science laboratory
November 25, 2025 at 3:24 PM
tomkindlon.bsky.social
ME Research UK:

Details from last week's Westminster Hall debate on ME in quotes covering research funding, support for those with severe ME and the government's response - tinyurl.com/mw5nek48

#MECFS #PwME #CFS
Photo of the UK parliament
November 25, 2025 at 3:13 PM
tomkindlon.bsky.social
Whether autoimmunity is involved in ME/CFS has often been asked and produced mixed results, Prof. Dr Carmen Scheibenbogen, former ME Research UK-funded researcher, gave a fascinating talk providing evidence for autoimmunity in ME/CFS and long COVID. tinyurl.com/mx86crua

#MEcfs #LongCovid #CFS #PwME
AUTOIMMUNITY IN ME/CFS AND LONG COVID Autoimmunity = the immune system mistakenly targeting the body's own cells/tissues with the help of autoantibodies. This may play a role in a subset of individuals with ME/CFS and/or long COVID. Prof. Dr Scheibenbogen described: AUTOANTIBODIES IN ME/CFS AND LONG COVID • Higher levels of GPCR autoantibodies, which correlate with symptom severity • Autoantibodies against nerves • Some autoantibodies correlate with brain changes and pain EBV MAY TRIGGER AUTOANTIBODIES • The immune system may accidentally target human proteins that look similar to EBV proteins ANTIBODY-RELATED TREATMENTS SHOWING PROMISE • Rituximab (reduces antibody-producing cells) • IgG antibody therapy • Immunoadsorption (removes antibodies) • Daratumumab (reduces antibody-producing cells) • Not all patients respond to treatment; autoimmunity appears to affect only a subset • Research is ongoing and study sizes are small, but early results fuel hope for targeted therapies Scheibenbogen, C. (2025, November 13). Autoantibody treatments for ME/CFS and long COVID [Conference presentation]. 2nd International Conference on Clinical and Scientific Advances in ME/CFS and Long COVID, Porto, Portugal. INFORM. INFLUENCE. INVEST. SCO36942
November 25, 2025 at 3:08 PM
tomkindlon.bsky.social
Upcoming webinars : App company ELAROS is hosting three webinars (for both professionals and the public) to launch new products

www.eventbrite.co.uk/e/the-launch...

www.eventbrite.co.uk/e/the-launch...

www.eventbrite.co.uk/e/the-launch...

Screenshot from Science for ME update

#MEcfs #LongCovid
UK Webinars App company ELAROS is hosting three webinars to launch new products. The webinars are for both professionals and the publc. ME Association Clinical Assessment Toolkit - 9th December at 15:00 GMT ME Association App - 10th December at 15:00 GMT C19-YRS Long Covid app to the public - 11th December at 15:00 GMT The webinars are free, up to 250 places can be booked, recordings on request for those who cannot attend.
November 25, 2025 at 1:47 AM
tomkindlon.bsky.social
2/
Trial by Error by David Tuller Another Exercise Trial with Clinically Insignificant Findings

virology.ws/2025/11/21/t...

Screenshot from latest Science for ME weekly update

#LongCovid #PASC
Trial by Error by David Tuller Another Exercise Trial with Clinically Insignificant Findings "A recent study from JAMA Network Open, called “Resistance Exercise Therapy After COVID-19 Infection: A Randomized Clinical Trial,” demonstrates some of the flaws that so often mar papers in this field of research. The trial’s reported results do not warrant the optimistic conclusion that the intervention “may be a generalizable therapy for individuals with persisting physical symptoms after COVID-19 infection.”"
November 25, 2025 at 1:39 AM
tomkindlon.bsky.social
Survey opportunity:
Validation of the Vienna Post-Exertional Malaise Assessment Questionnaire (V-PEM-AQ)

English:
www.soscisurvey.de/V-PEM-AQ_eng...

German:
www.soscisurvey.de/V-PEM-Q/

Questionnaire is estimated to take 20 minutes

Screenshot from latest Science for ME update

#MEcfs #LongCovid
Validation of the Vienna Post-Exertional Malaise Assessment Questionnaire (V-PEM-AQ) Dr. Ali Kapan and colleagues from the University of Vienna are working on a new questionnaire on post-exertional malaise (PEM). In this second phase of the project, they aim to evaluate how reliably and validly the questionnaire captures PEM and how it compares to existing assessment instruments. They are looking for participants to validate the questionnaire in English and German.
November 25, 2025 at 1:27 AM
tomkindlon.bsky.social
"Progress on the pathway to long COVID treatments" - a brief article describes a 2-day workshop on four new drug trials that are entering the RECOVER clinical trials for long COVID.

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

Screenshot from latest Science for ME weekly update

#LongCovid #PASC
Nature Immunology "Progress on the pathway to long COVID treatments" - a brief article describes a 2-day workshop on four new drug trials that are entering the RECOVER clinical trials for long COVID. The outcome of a safety & tolerability study for LDN was reported, Peluso described the REVERSE-LC baricitinib trial, while David Kaufman described his experiences using the GLP-1 agonist terzepatide in clinical practice.
November 24, 2025 at 2:15 AM
tomkindlon.bsky.social
ME patient talks about his experience & researcher Olav Mella on the ongoing Daratumumab study in a magazine for the Norwegian Society of Graduate technical & Scientific Professionals

Google translation
www-tekna-no.translate.goog/magasinet/ma...

Screenshot from Science for ME update

#MEcfs #CFS
Norway Good article on ME in a magazine for the Norwegian Society of Graduate Technical and Scientific Professionals. Jørn Tore Haugen talks about his experience as an ME patient and researcher Olav Mella on the ongoing Daratumumab study.
November 24, 2025 at 2:07 AM
tomkindlon.bsky.social
UK ME Association: The questionnaries for the Clinical Assessment Tookit designed by Prof Sarah Tyson with MEA funding are now available in printable form and on an app

meassociation.org.uk/mea-cat/

Screenshot from latest Science for ME weekly update

#MyalgicEncephalomyelitis #MEcfs #CFS #PwME
UK ME Association The questionnaries for the Clinical Assessment Tookit designed by Prof Sarah Tyson with MEA funding are now available in printable form and on an app intended for use by people with ME/CFS and by NHS clinics. See coming events below for introductory webinars.
November 24, 2025 at 1:57 AM
tomkindlon.bsky.social
UK Covid 19 Inquiry report reveals Government’s catastrophic failure to manage the pandemic.British Medical Association press release

Screenshot from latest Science for ME weekly update

www.bma.org.uk/bma-media-ce...

#Coronavirus #COVID19 #COVID #COVID_19 #COVIDー19 #SARSCoV2 #CovidIsNotOver
UK Covid 19 Inquiry report reveals Government’s catastrophic failure to manage the pandemic. BMA press release "The report concludes that the UK governments responded far too slowly and complacently, leading to a mandatory lockdown and an estimated 23,000 avoidable deaths in England. It highlights severe governmental failings, including misleading claims of preparedness, ignored expert advice, and inadequate test-and-trace capacity."
November 24, 2025 at 1:47 AM
tomkindlon.bsky.social
Definitely not a recommendation

Interpretation bias modification (CBM-I) for fatigue in long term health conditions-A feasibility study

www.sciencedirect.com/science/arti...

Biological reasons for most of the fatigue in conditions like #MECFS (connected to PEM) need to be understood better

#PwME
Screenshot of abstract
November 23, 2025 at 2:49 PM
tomkindlon.bsky.social
US press release:
"Underlying cause of Gulf War illness confirmed in UTSW study"

"Dysfunctional mitochondria, organelles that serve as cellular power generators, appear to cause the symptoms of Gulf War illness ( #GWI )"
www.newswise.com/articles/und...

Full paper:
www.nature.com/articles/s41...
Underlying cause of Gulf War illness confirmed in UTSW study Findings could lead to possible treatments for veterans’ debilitating symptoms 20-Nov-2025 7:30 PM EST, by UT Southwestern Medical Center facebook sharing buttontwitter sharing buttonemail sharing buttonsharethis sharing button♡ Newswise: Underlying cause of Gulf War illness confirmed in UTSW study Credit: UT Southwestern Robert Haley, M.D., is Professor of Internal Medicine in the Division of Infectious Diseases and Geographic Medicine and in the Peter O’Donnell Jr. School of Public Health at UT Southwestern. A Distinguished Teaching Professor, Dr. Haley holds the U.S. Armed Forces Veterans Distinguished Chair for Medical Research, Honoring Robert Haley, M.D., and America’s Gulf War Veterans. Newswise — DALLAS – Nov. 20, 2025 – Dysfunctional mitochondria, organelles that serve as cellular power generators, appear to cause the symptoms of Gulf War illness (GWI) among tens of thousands of veterans of the Persian Gulf War, UT Southwestern Medical Center scientists confirmed in a new study. The findings, published in Scientific Reports, could lead to effective treatments for this condition that has plagued former soldiers for 30-plus years.
November 22, 2025 at 4:28 PM