Tom Kindlon
@tomkindlon.bsky.social
95% of posts on #MyalgicEncephalomyelitis, #LongCovid or #chronicillness. With ME/CFS 37 years, severe ME 31 years. @IrishMECFSAssoc trustee 29 years 26 publications in peer-reviewed journals Social media: https://me-pedia.org/wiki/Tom_Kindlon
Join Dr. David Putrino, Dr. Lucinda Bateman, Dr. Jennifer Curtin, & moderator Charlie McCone for a discussion on how to best manage and treat post-exertional malaise. Learn about the different types of PEM, how to navigate a crash, and interventions for reducing PEM. Sign up here: ow.ly/nAvg50ZtEb8
Literally have all of these. When it’s your normal, you try not to think about how overwhelming it all is, but when you see it as a list…it’s wild to think so many of us combat all of this daily and have for years…
Tom Kindlon@tomkindlon.bsky.social · yesterdayI 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/
NHS England’s ME/CFS e-Learning Modules FOI Results reveal lack of uptake via @lucibee.bsky.social meassociation.org.uk/2026/07/nhs-... Screenshot from latest Science for ME weekly update #MEcfs #PwME #CFS #ME #MyalgicE
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/
1) Had a closer look at this randomised trial on pacing from earlier this year. It tested an app, warning system, and wearable device to help Long Covid patients pace, but unfortunately, it didn't have an effect on post-exertional malaise (PEM) and other symptoms.
ME/CFS and Long Covid are not psychological conditions. The body is injured, we just don't quite understand how yet.
Tom Kindlon@tomkindlon.bsky.social · 2d agoSkeletal muscle properties in long COVID and ME/CFS differ from those induced by bed rest Screenshot from latest Science for ME weekly update #MEcfs #LongCovid
This week WAMES met Cabinet Minister for Health & Care, Mabon ap Gwynfor, with reps from AfME, SMEDC & Long Covid Support. Each organisation presented 1 of 4 proposals aimed at addressing serious & ongoing gaps in care for people living with ME & Long Covid in Wales tinyurl.com/4rjxa958
Meeting with Health Minister - ME & LC services in Wales - WAMES
Evidence‑based proposals for change On Tuesday 28 July, WAMES met with the Cabinet Minister for Health and Care, Mabon ap Gwynfor MS, alongside representatives from Action for ME, SMEDC and...
tinyurl.com
Skeletal muscle properties in long COVID and ME/CFS differ from those induced by bed rest Screenshot from latest Science for ME weekly update #MEcfs #LongCovid
Tom Kindlon@tomkindlon.bsky.social · last wk.Press release on this interesting Dutch research study: "New research: muscle problems in post-COVID and ME/CFS cannot be explained by prolonged inactivity" Google translation: www-amsterdamumc-org.translate.goog/nl/vandaag/n... #MEcfs #LongCovid #PwME #CFS #ME #MyalgicE
FEBREZE: THESE ARE SOME OF THE POISONS YOU GET WHEN YOU USE IT: www.columbiadoctors.org/news/do-air-...
Do Air Fresheners Impact Our Health?
Air fresheners might smell nice, but do they have any impact on air quality or our health? Our expert explains how air fresheners work and gives some tips for natural alternatives.
columbiadoctors.org
This great article from The Guardian is a reminder of some of the simple ways we can improve indoor air quality, like opening windows when outdoor conditions allow, using extractor fans while cooking, and reducing sprays and fragrances. Read more here 🔗
Help, my sofa is killing me! The toxic chemicals hiding in your home – and how to avoid them
From mattresses to saucepans, scientists offer tweaks to help detoxify your space
theguardian.com
'The UK’s highly prescriptive fire safety rules mean that our furniture and soft furnishings contain more flame-retardant chemicals than anywhere else in the world. Our curtains, cushions, mattresses, bedding and building materials are full of toxic chemicals' www.theguardian.com/lifeandstyle...
Help, my sofa is killing me! The toxic chemicals hiding in your home – and how to avoid them
From mattresses to saucepans, scientists offer tweaks to help detoxify your space
theguardian.com
From the Mayo Clinic (US) The Use of a Handheld Non-Invasive Vagal Nerve Stimulation (nVNS) Device for the Treatment of Long COVID:A Pilot Randomized Controlled Trial journals.sagepub.com/doi/10.1177/... "neither primary or secondary outcomes reached statistical significance" #LongCovid #NeuroPASC
Sage Journals: Discover world-class research
Subscription and open access journals from Sage, the world's leading independent academic publisher.
journals.sagepub.com
I like to read about past medical breakthroughs: it gives me hope that, one day, the same will happen to ME/CFS. In 1989, scientists found the major gene defect that causes cystic fibrosis, as reported in this article in Science. Francis Collins was one of its discoverers.
1) Just watched this lecture by Prof. Leonard Jason. His team in Chicago has been developing questionnaires and assessment tools for ME/CFS for several decades. In this talk, he gives an overview of his main findings and also comments on FUNCAP.
I've learned to micropace, to take short breaks during an activity instead of pushing through to do the whole thing in one go. This allows me to do *more*, not less, and that's the reward. Resting time becomes an asset, not a deficit or waste of time. #MEcfs #pacing #rest #pwme #longcovid
Tom Kindlon@tomkindlon.bsky.social · 2d agoThe unusual method I use to help encourage me to rest 5-7 hours per day What do you do to help encourage yourself to rest? #MEcfs #pacing #rest #pwme #longcovid
The unusual method I use to help encourage me to rest 5-7 hours per day What do you do to help encourage yourself to rest? #MEcfs #pacing #rest #pwme #longcovid
Another study showing exercise and fitness is completely unrelated to whether you are susceptible to long cd. Impotrant to prove - Can we move on now?
Tom Kindlon@tomkindlon.bsky.social · 2d agoFrom Germany: Associations Between Pre-Quarantine Exercise and Persistent Symptoms After SARS-CoV-2 Infection www.mdpi.com/2075-4663/14... "In our study, neither [Physical Activity] intensity nor duration showed an association with the presence or absence of long-term symptoms." #LongCovid #PASC
Factors Associated with Fibromyalgia Diagnosis amongst People Meeting Criteria: Results from UK Biobank abdn.elsevierpure.com/en/publicati... "In conclusion, the majority of individuals meeting FM criteria did not have a diagnosis." #Fibromyalgia #Fibro #FMS #FM #MEcfs #PwME
From Spain Neuroretinal Alterations in Persistent COVID-19: A Two-Year OCT Follow-Up www.mdpi.com/2077-0383/15... "The results of this study suggest the presence of region-specific inner retinal changes in PC patients when compared with control subjects." #LongCovid #Eyes
mdpi.com
From Germany: Associations Between Pre-Quarantine Exercise and Persistent Symptoms After SARS-CoV-2 Infection www.mdpi.com/2075-4663/14... "In our study, neither [Physical Activity] intensity nor duration showed an association with the presence or absence of long-term symptoms." #LongCovid #PASC
mdpi.com
2 days to go. Apart from the 24 who have indicated their interest on the FB event, two others (a patient & a parent) have told us they hope to go and two other patients have told us they might go. There were six people at the last meet-up. #MEcfs #PwME #CFS
Irish ME/CFS Association@irishmecfsassoc.bsky.social · 2w agoInformal ME/CFS social meet-up in Dundalk hosted by Tom Kindlon @tomkindlon.bsky.social on Wednesday, August 5 irishmecfs.org/blog/dundalk... Hopefully we’ll see some of you there. #MEcfs #PwME #CFS #MyalgicEncephalomyelitis #longcovid #speirgorm #spéirgorm #speirghorm #spéirghorm #Dundalk
ME/CFS & Long Covid are not psychological conditions. The body is injured, we just don't quite know how yet.
Tom Kindlon@tomkindlon.bsky.social · 3d agoME/CFS and Long COVID Demonstrate Similar Bioenergetic Impairment and Recovery Failure on Two-Day Cardiopulmonary Exercise Testing by @sunsopeningband.bsky.social et al link.springer.com/article/10.1... Screenshot from latest Science for ME weekly update #MEcfs #LongCovid #PwME #CFS #ME #MyalgicE
![ME/CFS and Long COVID Demonstrate Similar Bioenergetic Impairment and Recovery Failure on Two-Day Cardiopulmonary Exercise Testing — Davenport et al
"In both males and females, VO2 and workload were significantly different between patients and non-disabled controls, and with larger effect sizes at [Ventilatory Anaerobic Threshold] than at maximal exertion."
Article | Thread](https://cdn.bsky.app/img/feed_thumbnail/plain/did:plc:43rudsv62fuwsmnk7oppgtdy/bafkreif5ypm2vb4edajfvwdx3sdog7susa6fq53qst7nlplpzramlcxgoe)
ME/CFS and Long COVID Demonstrate Similar Bioenergetic Impairment and Recovery Failure on Two-Day Cardiopulmonary Exercise Testing by @sunsopeningband.bsky.social et al link.springer.com/article/10.1... Screenshot from latest Science for ME weekly update #MEcfs #LongCovid #PwME #CFS #ME #MyalgicE
Forward ME (UK): Briefing Paper on Clinical assessment of people with very severe ME/CFS forward-me.co.uk/fme-briefing... forward-me.co.uk/wp-content/u... Screenshot from latest Science for ME weekly update #MEcfs #SevereME #PwME #CFS #ME #MyalgicE
The Biopsychosocial Model by @longcovidadvoc.com www.longcovidadvoc.com/post/bps From Science for ME weekly update: A thorough & critical look at the origin of the biopsychosocial model & its devastating consequences. The article has an excellent visual summary of its key points #mecfs #longcovid
101: 03. The Biopsychosocial Model
To clearly name the problem: The term is accepted in medicine as a common-sense position that on the surface makes a great deal of sense. Yet, there is often a hidden psychosomatic interpretation that...
longcovidadvoc.com
(UK) Action for ME ME: A Guide for Educators www.actionforme.org.uk/resource/me-... Science for ME weekly update: “A useful document outlining the symptoms and impact of ME/CFS, and adaptations and support that teachers and schools should provide for pupils with ME/CFS” #MEcfs #PwME #CFS
ME: A guide for educators
actionforme.org.uk
Our latest News in Brief summary (in two parts this week) has headlines and links to further reading about ME/CFS, Long Covid, and related news for the week of July 27 - Aug 2. s4me.info/threads/news... #MEcfs #PwME #LongCovid #PwLC
News in Brief - July 2026
This thread has a Science for ME 'News in Brief' post for each week in July 2026 by a team including @Trish, @Kalliope, @ahimsa and @SNT Gatchaman. Scroll down to see this week's news.
s4me.info
From @onelife_livedwell on IG: Let’s talk about the unofficial evaluation that can determine belief, treatment, or accommodations. What’s being measured is legibility in the eyes of the system you’re dealing with. #mecfs #fibromyalgia #invisibleillness #pwme #cfs
NCNED Australian ME/CFS Registry Study: Analysis of 2,873 people w/ ME/CFS & 797 healthy controls from Australia's largest ME/CFS registry found substantially reduced quality of life & identified symptom clusters that may help define clinical subtypes. link.springer.com/article/10.1...
Australian registry reports poor health and wellbeing in people living with ME/CFS - Journal of Translational Medicine
Introduction Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a debilitating condition hallmarked by post-exertional malaise accompanied by an array of multisystemic symptoms. Consequent...
link.springer.com
![Central origin of fatigability in Myalgic encephalomyelitis/chronic fatigue syndrome revealed by multimodal neuroimaging — Bedard et al
"Our most novel results relate to the lack of neuromuscular adaptation in ME/CFS compared to the [Healthy Volunteers]." "ME/CFS did not change their muscular and brain activity as measured via DI, EEG, BOLD, and CMC, and as a result, they demonstrated fatigue earlier than HV"
Article | Thread](https://cdn.bsky.app/img/feed_thumbnail/plain/did:plc:43rudsv62fuwsmnk7oppgtdy/bafkreidypmmkn3nh4azbuykcmu3rptaj6se4uiu7jh6h6vln7ff7oqqgyq)