Tom Kindlon
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Tom Kindlon
@tomkindlon.bsky.social
6.8K followers 200 following 6.7K 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
tomkindlon.bsky.social
6/
Contested and neglected: Social and medical marginalization in severe Chronic Fatigue Syndrome by @bi-ta.bsky.social

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

Screenshot from latest Science for ME weekly update

#SevereME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
Contested and neglected: Social and medical marginalization in severe Chronic Fatigue Syndrome — Nezamdoust and Ruel "Our findings reveal that the experiences of severe ME/CFS extend beyond the devastating physical symptoms to encompass a broader landscape of emotional, social, and institutional hardship. The condition’s contested nature fundamentally shapes how individuals are treated and understood, resulting in a layered form of marginalization. Participants experience widespread disbelief, social exclusion, medical neglect, and disability rejection."
November 20, 2025 at 2:16 AM
tomkindlon.bsky.social
The Role of Nuclear and Mitochondrial DNA in Myalgic Encephalomyelitis: Molecular Insights into Susceptibility and Dysfunction

www.mdpi.com/2673-8856/5/...

Screenshot from latest Science for ME weekly update

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
The Role of Nuclear and Mitochondrial DNA in Myalgic Encephalomyelitis: Molecular Insights into Susceptibility and Dysfunction — Elremaly et al. Review. "We explore how nuclear and mitochondrial DNA influence disease risk, symptom manifestation, and cellular dysregulation, with particular focus on genetic variants, mitochondrial bioenergetics, epigenetic modifications, and transposable element activation."
November 20, 2025 at 2:04 AM
tomkindlon.bsky.social
From Austria:

The Clinical Relevance of Mast Cell Activation in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

www.mdpi.com/2075-4418/15...

Screenshot from latest Science for ME weekly update

#MCAS #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
The Clinical Relevance of Mast Cell Activation in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome — Rohrhofer et al. "our findings suggest that the prevalence of MCA increases with ME/CFS disease progression." "Limitations of our study include its reliance on self-reported data in the CCCFS patient cohort, the retrospective design of the ME/CFS-MCA patient cohort, and potential differences in MCAS diagnostic procedure."
November 20, 2025 at 1:51 AM
tomkindlon.bsky.social
M.E. = Myalgic Encephalomyelitis

ME Essential is the magazine for members of the (UK) ME Association

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
5% ME cartoon: looking over a garden fence, talking to neighbour 95% M.E. cartoon: lying in bed Thank you to John Simpson for sending his super drawing which perfectly portrays ME/CFS and what the outside world sees and doesn't see. John commented in his email "I have no claim to any artistic talent..." Well, John, I beg to differ! Caroline Cavey Editor ME ESSENTIAL WINTER 2024
November 19, 2025 at 10:47 PM
tomkindlon.bsky.social
(UK) Recording of Westminster Hall debate: "Government support for people with myalgic encephalomyelitis" (i.e. in the Houses of Parliament)

www.parliamentlive.tv/Event/Index/...

This 4:30pm debate was led by Tessa Munt MP @tessamunt.bsky.social

#MyalgicEncephalomyelitis #PwME #MEcfs #CFS
Westminster Hall Wednesday 19 November 2025 Meeting started at 2.30pm, ended 5.34pm screenshot of video
November 19, 2025 at 6:29 PM
tomkindlon.bsky.social
On #InternationalMensDay, some articles on men & #MyalgicEncephalomyelitis

Not So Macho: A male perspective on M.E. www.mediafire.com/file/reaem7f...

Men with #CFS www.mediafire.com/file/7mr6eol...

'Men & M.E.' booklet (2007) Intro: www.mediafire.com/file/h14bjcf...

1/
Photo of distressed-looking man with his head in his hands
November 19, 2025 at 1:14 PM
tomkindlon.bsky.social
3/
Abnormal breathing patterns and hyperventilation are common in patients with chronic fatigue syndrome during exercise

www.frontiersin.org/journals/med...

Screenshot from latest Science for ME weekly update

#MEcfs #CFS
Abnormal breathing patterns and hyperventilation are common in patients with chronic fatigue syndrome during exercise — Mancini et al. "In the ME/CFS group, dysfunctional breathing was the most common ventilatory abnormality, followed by hyperventilation. The breathing patterns were mostly reproducible across consecutive studies. There was considerable overlap between DB and HV in the patients with ME/CFS, which was not observed in the sedentary controls."
November 19, 2025 at 2:44 AM
tomkindlon.bsky.social
4/
Temporal dynamics of the plasma proteomic landscape reveals maladaptation in ME/CFS following exertion

www.mcponline.org/article/S153...

Screenshot from latest Science for ME weekly update

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
Temporal dynamics of the plasma proteomic landscape reveals maladaptation in ME/CFS following exertion — Arnaud Germain et al. "To investigate the molecular basis of post-exertional malaise in ME/CFS, we performed longitudinal plasma proteomics in 132 individuals undergoing two maximal exercise tests. ME/CFS patients showed persistent immune, metabolic, and neuromuscular dysregulation during recovery, including suppression of T and B cell signaling and activation of glycolytic stress pathways. Protein changes were linked to symptom severity and reduced exercise capacity, with distinct sex-specific responses."
November 19, 2025 at 2:30 AM
tomkindlon.bsky.social
2nd International Conference: "scientific and clinical advances in Myalgic Encephalomyelitis and Long Covid"

aliancamillionsmissing.org/2-conferenci...
youtu.be/5BP5Fi9tZ4o
youtu.be/y92DnoMKXuk

Screenshot from latest Science for ME weekly update

#MEcfs #LongCovid #CFS
Portugal 2025 International Long Covid Conference November 12–13, 2025, held in Porto, Portugal and online. To raise awareness, promote understanding, and stimulate dialogue among healthcare professionals, researchers, policymakers, patients, and advocates about ME/CFS, Long COVID, and other post-viral fatiguing illnesses. Speakers | Video Day 1 | Video Day 2 | Thread
November 19, 2025 at 2:07 AM
tomkindlon.bsky.social
News Release 17-Nov-2025

From USA:

"10.3% had symptoms consistent with long COVID three months after infection, 81% of whom continued to experience persistent or intermittent symptoms a year later"

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

#LongCovid #PASC #postcovid #postcovid19 #novid #COVID19 #COVID
News Release 17-Nov-2025 Study reveals insights into long COVID trajectories in adults New research led by Mass General Brigham followed more than 3,500 patients, finding that 10.3% had symptoms consistent with long COVID three months after infection, 81% of whom continued to experience persistent or intermittent symptoms a year later Peer-Reviewed Publication Brigham and Women's Hospital New research led by Mass General Brigham followed more than 3,500 patients, finding that 10.3% had symptoms consistent with long COVID three months after infection, 81% of whom continued to experience persistent or intermittent symptoms a year later Millions of patients have developed long COVID, a chronic condition that involves a range of symptoms, including fatigue, brain fog, dizziness, and palpitations that persist for at least three months after SARS-CoV-2 infection. In a new analysis of adult participants in the NIH funded Researching COVID to Enhance Recovery (RECOVER) Initiative, Mass General Brigham researchers identified eight different trajectories that long COVID can take, depending on severity, duration, and whether symptoms improve or worsen. Their findings are published in Nature Communications.
November 18, 2025 at 1:09 PM
tomkindlon.bsky.social
Germany: A new article in Der Spiegel focused on severe ME/CFS and Long Covid.

www.spiegel.de/gesundheit/e...

Some information on this in English
www.s4me.info/threads/news...

Screenshot from latest Science for ME weekly update

#SevereME #MEcfs #LongCovid #CFS
Germany A new article in Der Spiegel focused on severe ME/CFS and Long Covid. It highlight the story of 29-year-old Natascha whose is taken care of by family and friends. They advocate and fight for better medical care and support.
November 18, 2025 at 2:01 AM
tomkindlon.bsky.social
A researcher & sociologist has written...on the symbolic violence in the face of public services, using her research into how #MEcfs patients are treated as examples

Google translation:
agendamagasin-no.translate.goog/debatt/symbo...

www.s4me.info/threads/tjen...

Image from Science for ME update
Norway Researcher and sociologist Anne Kielland has written a clear opinion piece on the symbolic violence in the face of public services, using her research into how ME patients are treated as examples. "There are no public treatment options for the group, and they seem to fall between all the chairs in the available options." Article (Norwegian) l Thread
November 18, 2025 at 1:36 AM
tomkindlon.bsky.social
Just clearing out some old files and came across this for around 25 years ago in case of interest to anyone: "How to Evaluate a CFIDS/FM Treatment".

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #chronicillness #Fibromyalgia
From the CFIDS Chronicle, published by the CFIDS Association of America, P.O. Box 220398 Charlotte NC 28222-0398, U.S.A. Tel: 00-1-704-365-2343, Subscription for Ireland: US$60/year. How to Evaluate a CFIDS/FM Treatment By Lisa Lorden While there is currently no cure for chronic fatigue and immune dysfunction syndrome (CFIDS) or fibromyalgia (FM), there are many treatments for the symptoms of these illnesses. Many of us feel as if we have tried them all. This willingness to try anything in the hope of gaining relief can actually be dangerous, leading some of us to explore unproven remedies and gimmicks. Individuals with CFIDS or FM need to be discriminating when choosing a treatment. What works for someone else may not work for you. If there were one "magic" or "harmless” cure, everyone would have used it by now. Here are some tips to help you decide whether a treatment is worthwhile for you and to assist you in avoiding quack cures. Expect some proof Look for treatments that have some scientific evidence of effectiveness, such as those backed by clinical research trials. Testimonials from patients who have been "cured" are not legitimate proof. Do your homework Research therapies you are considering as much as you can. Good places to go for information are large on-line resource centers and back issues of The CFIDS Chronicle. Always consult with your health care providers before beginning new treatments. Be critical about marketing Beware of remedies that are promoted through multi- level marketing, tabloid articles or mail-order offers. Also avoid remedies described as "secret formula," "exclusive" or "special." Legitimate scientists do not keep their findings secret or exclusive. Beware of promises and claims Be suspicious of ads for treatments that claim to have no side effects. Also beware of claims that the product can completely relieve pain, eradicate all symptoms, take effect the first time you use it or give you unlimited energy. Talk to fellow PWCs Visit …
November 17, 2025 at 7:31 PM
tomkindlon.bsky.social
The British Association of Clinicians in ME/CFS have published an updated guide. Forum discussion raises serious concerns about their therapist-led rehab approach including pacing-up.

bacme.info/wp-content/u...

www.s4me.info/threads/uk-b...

Screenshot from Science for ME update

#MEcfs #CFS
UK BACME ME/CFS Guide to Therapy 2025 The British Association of Clinicians in ME/CFS have published an updated guide. Forum discussion raises serious concerns about their therapist-led rehabilitation approach including pacing-up. BACME guide | Thread
November 17, 2025 at 2:31 AM
tomkindlon.bsky.social
Unions representing doctors and nurses in the UK are asking the government to recognise the long term impacts of COVID-19 on health and care workers.

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

Screenshot from latest Science for ME weekly update

#LongCovid #PASC #PwLC #postcovid #postcovid19 #COVID19 #COVID
UK BMA and RCN ask Government to recognise Long COVID as an occupational disease Unions representing Doctors and Nurses in the UK are asking the government to recognise the long term impacts of COVID-19 on health and care workers. “The UK Government needs to act quickly and provide support now to the many doctors and nursing staff, and their families, who have suffered significant financial losses as a result of contracting COVID-19 in the workplace and then developing Long COVID.”
November 17, 2025 at 2:20 AM
tomkindlon.bsky.social
UK: Debate on Government support for ME/CFS in Westminster Hall on 19 November 2025

Links:
www.thereforme.uk/p/westminste...

www.parliament.uk/about/how/bu...

Screenshot from latest Science for ME update

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @thereforme.bsky.social
UK Government debate on ME/CFS MP Tessa Munt has tabled a debate on Government support for ME/CFS in Westminster Hall on 19 November 2025. #ThereForMe have further information and a template letter people can use to ask their MP to attend. Note that this is not in the main chamber. Further information on Westminster Hall and the meaning of debates held here can be read at the link below. ThereForMe | Info | Thread
November 17, 2025 at 2:05 AM
tomkindlon.bsky.social
ME Research UK:

Whilst microclots remains an area requiring further research and replication, it has generated considerable interest within ME/CFS and #longCOVID research communities.
Professor Pretorius’ presentation shows that the underlying mechanisms are complex: tinyurl.com/5m24yvrj

#mecfs
"Is a 'microclot' a microclot? Or should we be concentrating on their activity, their content, and their biochemical characteristics?" Professor Resia Pretorius Stellenbosch University, South Africa 2nd International Conference on Clinical and Scientific Advances in ME/CFS and Long COVID al% RES6ArH SCO36942
November 16, 2025 at 5:17 PM
tomkindlon.bsky.social
ME Research UK:

Thanks to the continued support of our generous donors and fundraisers, ME Research UK is delighted to mark our 25th year by surpassing a total of £5 million in research investment. bit.ly/43nt0bG

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
RESEARCH PROJECTS 2000 - 2025 £5M INVESTED BRAIN HEART PAIN 78 PROJECTS 9 AREAS MUSCLE DIAGNOSIS METABOLISM 12 COUNTRIES GENETICS IMMUNITY SYMPTOMS INFORM. INFLUENCE. INVEST. ME RESEARCH UK SCO36942
November 16, 2025 at 5:12 PM
tomkindlon.bsky.social
"Systematic literature review: treatment of postural orthostatic tachycardia syndrome (POTS)" ["with a special focus on POTS therapy in children and people with ME/CFS."]

Free fulltext:
link.springer.com/article/10.1...

#POTS #MEcfs
Abstract Postural orthostatic tachycardia syndrome (POTS) is a condition defined by symptoms of orthostatic intolerance and a sustained heart rate (HR) increment of ≥ 30 beats per minute (bpm) upon postural change to the upright position in the absence of orthostatic hypotension, defined as a sustained decrease in systolic blood pressure (SBP) of ≥ 20 mmHg or a decrease in diastolic blood pressure (DBP) of ≥ 10 mmHg within 3 min of standing. In children, a sustained HR increment of at least 40 bpm is required for diagnosis of POTS. POTS is a common condition in adults and children suffering from myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). In daily clinical practice, therapeutic recommendations are rare and evidence is missing. The objective of this review is to present the current knowledge on non-pharmacological and pharmacological approaches in POTS with a special focus on POTS therapy in children and people with ME/CFS. Of 3853 studies, 45 studies were included in the systematic review. Evidence on therapy in POTS is rare and large randomized controlled trials (RCT) on single interventions are needed. Non-pharmacological approaches such as the use of compression garments, physical training, salt supplementation and transdermal vagal nerve stimulation could be possible treatment options in POTS because they are easy to implement as first-line therapeutic measures in clinical practice. For pharmaceuticals, several studies showed significant effects following therapy with ivabradine and β-adrenergic blocking agents. There are single studies which imply that midodrine (hydrochloride) and pyridostigmine seem to have a beneficial effect on hemodynamics in POTS.
November 15, 2025 at 11:16 PM
tomkindlon.bsky.social
New:
Introducing “Energy Limiting Conditions”: The Emergence and Evolution of a New Impairment Concept

Free
www.scienceopen.com/hosted-docum...

Sympathetic exploration of topic

#EnergyLimitingConditions #Spoonie #Fatigue #chronicillness #Spoonies #ELCI #MEcfs #LongCovid
Abstract The terms “energy limiting condition” (ELC) and “energy impairment”locate the embodied experience of chronic illness into a category of impairment for the purposes of social policy and administration of disability. This article discusses the origins of these concepts in the UK-based Chronic Illness Inclusion Project (CIIP). Selected findings from the CIIP’s mixed-methods participatory research demonstrate how energy impairment, and related terms, arose as a practice of resistance against the invalidation of “fatigue” as impairment, giving rise to a transdiagnostic disability identity, and a strategy for self-advocacy. Theoretical tensions between the rejection of impairment within disability studies and the emancipatory aims of the CIIP are discussed, as well as the political history of fatigue within the disability category. Impairment labels, as a necessary evil, should reflect disabled people’s experience and identity, and further research should uncover their conditions of production.
November 15, 2025 at 10:09 PM
tomkindlon.bsky.social
This was very popular a few months ago so I thought I would repost it

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
Thanks to Laura Scheepers who has written out the text: The white ring, with 'healthy individual' has - nonlimited ability to care for self and others - nonlimited ability to attend events - nonlimited ability to exercise and play sports - nonlimited ability to traven The yellowish ring with 'mild ME/cfs' say: - limited ability to work full time - limited abilty to be active - limited ability to tolerate loud/stimulating environments The orange ring, with 'moderate ME/cfs' says: - limited ability to work (may only tolerate WFH) - limited ability to leave house and attend social events - limited ability to complete errands The dark orange ring with 'moderate-severe ME/cfs'has housebound as subtitle and says: - limited use of shower - limited ability to prepare meals - limited ability to move about household The red ring with 'severe ME/cfs' says: - limited use of restroom - limited use of books and technology The poopbrown ring with 'very severe ME/cfs' has bedbound as subtitle and says: - limited tolerance of sensory input - limited ability to move and communicate. —-
November 15, 2025 at 9:50 PM
tomkindlon.bsky.social
I was just clearing out some files and came across this set of treatment survey results from the CFIDS Association of America in 1999 which I thought might be of interest to the odd person.

Pacing came out on top

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
Bar chart of results, too many to list
November 15, 2025 at 6:37 PM
tomkindlon.bsky.social
2/
From: "ME/CFS & post-covid should not be classified as functional conditions: The biopsychosocial treatment model proposed for these conditions...is presented as harmless, but is based on hypotheses & methodologically weak studies"

#PwME #LongCovid
quote: The behavioral medicine approach is presented as harmless, but studies point to several negative effects. Claiming without evidence that the course of the disease can be influenced by thought patterns shifts responsibility onto the individual, which can be mentally stressful and lead to both feelings of guilt and a feeling of not being heard [7, 8]. This view also affects how patients are perceived by those around them. In addition, it can have serious practical consequences, since many advocates believe that support measures risk reinforcing the patient's misguided symptom focus and should therefore be limited. If the causal relationships are incorrect, this would be deeply harmful. The lack of support also impairs the health of relatives, who are responsible for the care [9]. The model also risks causing physical harm, as patients are encouraged to increase their physical activity incrementally, despite the fact that post-exertional malaise is well documented in both ME/CFS and post-COVID [10-12]. Patient surveys have consistently shown that incremental increases in exercise provide the least benefit and cause the most harm of all reported treatments [13, 14].
November 15, 2025 at 1:50 PM
tomkindlon.bsky.social
"ME/CFS & post-covid should not be classified as functional conditions: The biopsychosocial treatment model proposed for these conditions...is presented as harmless,but is based on hypotheses & methodologically weak studies"

Google translation
lakartidningen-se.translate.goog/opinion/deba...
#MEcfs
ME/CFS and post-covid should not be classified as functional conditions The biopsychosocial treatment model proposed for these conditions in Läkartidningen is presented as harmless, but is based on hypotheses and methodologically weak studies. Sten Helmfrid Associate Professor, Physics; Member, National Association for ME Patients Kerstin Heiling Psychologist, PhD; former chairman, Swedish Association for ME Patients Jonas Bergquist Professor, Analytical Chemistry/Neurochemistry, Uppsala University Anders Rosen Professor Emeritus, Linköping University Per Julin with Dr., Chief Physician, Karolinska University Hospital Huddinge Bo Christer Bertilson Associate Professor, General Medicine, Bragée Clinic, Karolinska Institutet Per Sjogren PhD, Bragée Clinic Judith Bruchfeld Senior Physician, Associate Professor, Infectious Diseases, Karolinska Institutet Lisa Norén specialist, general medicine; board member, Swedish Covid Association
November 15, 2025 at 1:07 PM
tomkindlon.bsky.social
(Not a recommendation)
News Release 14-Nov-2025

Research spotlight: Trial evaluates a vitamin B3 derivative in people with long COVID

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

Some spinning going on. Results were very poor though there were a lot of dropouts.

#LongCovid #PASC
News Release 14-Nov-2025 Research spotlight: Trial evaluates a vitamin B3 derivative in people with long COVID Millions of people worldwide continue to experience lingering symptoms after COVID-19, a condition known as long COVID. Peer-Reviewed Publication Mass General Brigham COVID-19 | Research Chao-Yi Wu, PhD, OT, from the Department of Neurology and Edmarie Guzmán-Vélez, PhD, of the Department of Psychiatry at Mass General Brigham, are the lead and senior authors of a paper published in eClinicalMedicine, “Effects of Nicotinamide Riboside on NAD+ Levels, Cognition, and Symptom Recovery in Long-COVID: A Randomized Controlled Trial.”
November 15, 2025 at 12:57 PM