Tom Kindlon (@tomkindlon.bsky.social) / Redsky

Tom Kindlon (@tomkindlon.bsky.social)

"Long COVID-19: a Four-Year prospective cohort study of risk factors, recovery, and quality of life" bmcinfectdis.biomedcentral.com/articles/10.... "Nearly 29% of post-acute COVID-19 patients developed long COVID-19" #LongCovid #PASC #Novid

Long COVID-19: a Four-Year prospective cohort study of risk factors, recovery, and quality of life — Kamal et al.

3/9/2025, 2:18:07 AM | 15 5 | View on Bluesky | view

Tom Kindlon (@tomkindlon.bsky.social)

The Association of Long COVID and CKD: Findings from the National Clinical Cohort Collaborative (N3C) — Anzalone, A. Jerrod et al. RECOVER study.

3/9/2025, 2:13:45 AM | 2 0 | View on Bluesky | view

Tom Kindlon (@tomkindlon.bsky.social)

US research: "CKD [chronic kidney disease], even mild, was associated with an higher risk of Long COVID. Among those without baseline CKD, Long COVID was associated with incident CKD and eGFR decline" journals.lww.com/cjasn/abstra... Screenshot from Science for ME weekly update #LongCovid #CKD

3/9/2025, 2:06:56 AM | 3 1 | View on Bluesky | view

Tom Kindlon (@tomkindlon.bsky.social) reply parent

2/ Illustration: Demographics, Symptoms, New-Onset Conditions, and Health Status of Patients Who Self-Reported Long COVID With and Without Self-Reported POTS #LongCovid #POTS

Central Illustration Demographics, Symptoms, New-Onset Conditions, and Health Status of Patients Who Self-Reported Long COVID With and Without Self-Reported POTS

3/9/2025, 1:55:08 AM | 3 0 | View on Bluesky | view

Tom Kindlon (@tomkindlon.bsky.social)

New US study: Characterization of Postural Orthostatic Tachycardia Syndrome in Long COVID: Self-reported Data From the LISTEN Study www.jacc.org/doi/10.1016/... Screenshot from latest Science for ME weekly update #LongCovid #POTS #MEcfs 1/

Characterization of Postural Orthostatic Tachycardia Syndrome in Long COVID: Self-reported Data From the LISTEN Study — Mohammad AL Mouslmani et al.

3/9/2025, 1:49:00 AM | 14 5 | View on Bluesky | view

Billy Hanlon (@bhanlon15.bsky.social) reposted

Would love to see RECOVER-TLC & RECOVER prioritize these findings. ➡️ Oxygen extraction issues ➡️ Preload failure ➡️ Reduced V̇O2peak ➡️ Skeletal muscle O2 diffusion

3/9/2025, 12:30:34 AM | 8 2 | View on Bluesky | view

Tom Kindlon (@tomkindlon.bsky.social)

From Spain Pediatric Long COVID Is Characterized by Myeloid CCR6 Suppression and Immune Dysregulation www.biorxiv.org/content/10.1... Screenshot from latest Science for ME weekly update #LongCovid #LongCovidKids #LCKids

Pediatric Long COVID Is Characterized by Myeloid CCR6 Suppression and Immune Dysregulation — Jon Izquierdo-Pujol et al.

3/9/2025, 1:37:29 AM | 7 3 | View on Bluesky | view

Tom Kindlon (@tomkindlon.bsky.social)

Great to see another research team (this time in Arizona, USA) doing iCPET research: Long COVID and chronic fatigue syndrome/myalgic encephalitis share similar pathophysiologic mechanisms of exercise limitation physoc.onlinelibrary.wiley.com/doi/10.14814... #MEcfs #LongCovid #PwME

Abstract Post- acute sequelae of SARS- CoV- 2 (PASC or “long COVID”) and chronic fatigue syndrome/myalgic encephalitis (CFS/ME) share symptoms such as exertional dyspnea. We used exercise oxygen pathway analysis, comprising six parameters of oxygen transport and utilization, to identify limiting mechanisms in both con ditions. Invasive cardiopulmonary exercise testing was performed on 15 PASC patients, 11 CFS/ME patients, and 11 controls. We evaluated the contributions of alveolar ventilation (V̇a), lung diffusion capacity (DL ), cardiac output (Q̇), skel etal muscle diffusion capacity (DM ), hemoglobin (Hb), and mitochondrial oxida tive phosphorylation (Vmax) to peak oxygen consumption (V̇O2peak). To simulate targeted interventions, each variable was sequentially normalized to assess its impact on V̇O2peak. V̇O2peak was significantly reduced in both PASC and CFS/ME compared to controls. Skeletal muscle O2 diffusion (DM ) was the most impaired parameter in both patient groups (p = 0.01). Correcting DM alone improved V̇O2 by 66% in PASC (p = 0.008) and 34.7% in CFS/ME (p = 0.06), suggesting a domi nant role for peripheral O2 extraction in exercise limitation. Impaired skeletal muscle oxygen diffusion (DM ) is a shared mechanism of exercise intolerance in PASC and CFS/ME and may represent a therapeutic target. However, our find ings are limited by small sample size

2/9/2025, 11:39:22 PM | 24 4 | View on Bluesky | view

ME/CFS Science (@mecfsskeptic.bsky.social) reposted

1) 🇨🇦 In a new ME/CFS study, the research team of Alain Moreau reports that haptoglobin (Hp) might be a potential biomarker of PEM severity and cognitive impairment. Its main function is to bind free hemoglobin that is released after the breakdown of red blood cells.

30/8/2025, 11:42:33 AM | 24 6 | View on Bluesky | view

ME/CFS Science (@mecfsskeptic.bsky.social) reposted

1) A new paper found slight increase of Fibroblast growth factor 21 (FGF-21) in ME/CFS patients compare to controls. FGF-21 is a hormone-like protein that helps to regulate metabolism and has been found to be increased in previous ME/CFS studies.

1/9/2025, 8:26:55 AM | 33 12 | View on Bluesky | view

ME/CFS Science (@mecfsskeptic.bsky.social) reposted

1) On May 12 2025, a group of researchers signed an International Declaration stating that "there is a moral, medical, economic and scientific imperative to invest robustly in international and collaborative research into the pathophysiology of ME/CFS and Long COVID."

2/9/2025, 9:32:12 AM | 42 17 | View on Bluesky | view

Open Medicine Foundation (OMF) (@openmedf.bsky.social) reposted

The 9th Annual Stanford Working Group Meeting on the Molecular Basis of ME/CFS started today. Today’s agenda is shown in the image. The Community Symposium will take place on Friday, September 5, from 8:00 am to 2:30 pm PST, and requires registration. Register 👉 ow.ly/Upnh50WPPbR.

Presentations include Chris Ponting (University of Edinburgh), Robert Phair (Integrative Bioinformatics Inc.), Randall Peterson (University of Utah), Shrinivasan Raghuraman (University of Utah), and Baldomero Olivera (University of Utah). After a 15-minute break at 10:45 am, the agenda continues with Daria Mochly-Rosen (Stanford University), lightning talks, and discussions led by Rob Phair. The day ends with closing remarks from Ron Davis at 1:15 pm.

2/9/2025, 7:22:33 PM | 17 8 | View on Bluesky | view

Irish ME/CFS Association (@irishmecfsassoc.bsky.social) reposted

One week to go. Apart from people who have replied to the Facebook event, a number of others have also said they might go. #PwME #MEcfs #CFS

2/9/2025, 2:28:37 PM | 2 2 | View on Bluesky | view

thetranscendedman (@atranscendedman.bsky.social) reposted

US FDA now requires vaccine makers to track long covid symptoms in new trials. For the first time, shots will be studied not just for hospitalizations and deaths but for their ability to prevent lingering illness. www.wsj.com/opinion/why-...

2/9/2025, 2:15:01 PM | 10 2 | View on Bluesky | view

Tom Kindlon (@tomkindlon.bsky.social) reply parent

Thank you very much, Sigrid 😊

2/9/2025, 11:38:37 AM | 1 0 | View on Bluesky | view

Tom Kindlon (@tomkindlon.bsky.social) reply parent

Thank you, Simon 😊

2/9/2025, 10:12:30 AM | 2 0 | View on Bluesky | view

Tom Kindlon (@tomkindlon.bsky.social)

From the Netherlands: Seasonal Coronavirus-Induced Immunological Imprinting and Previous Herpesvirus Infections in Patients With Long COVID onlinelibrary.wiley.com/doi/10.1002/... Screenshot from latest Science for ME weekly update #LongCovid #PASC #COVID19 #COVID

Seasonal Coronavirus-Induced Immunological Imprinting and Previous Herpesvirus Infections in Patients With Long COVID — W. Ashwin Mak et al.

2/9/2025, 1:02:24 AM | 17 9 | View on Bluesky | view

Tom Kindlon (@tomkindlon.bsky.social)

From Canada: Haptoglobin phenotypes and structural variants associate with post-exertional malaise and cognitive dysfunction in myalgic encephalomyelitis translational-medicine.biomedcentral.com/articles/10.... Screenshot from latest Science for ME weekly update #MEcfs #PwME

Haptoglobin phenotypes and structural variants associate with post-exertional malaise and cognitive dysfunction in myalgic encephalomyelitis — Moezzi et al.

2/9/2025, 12:48:20 AM | 14 3 | View on Bluesky | view

Tom Kindlon (@tomkindlon.bsky.social)

#JusticeforME Fundraising to support legal advice and action. www.crowdjustice.com/case/justice... Screenshot from latest Science for ME weekly update #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

UK #JusticeforME Fundraising to support legal advice and action.

2/9/2025, 12:39:46 AM | 10 5 | View on Bluesky | view

Tom Kindlon (@tomkindlon.bsky.social) reply parent

‪3/‬ ‪I’m grateful to all the people who’ve supported me & I’ve worked with esp. Orla Ní Chomhraí & my mother Vera (chairperson of @irishmecfsassoc.bsky.social for last 29 years) & all the support from my family in general which I have required as a person with a disabling illness ( #MECFS )‬

1/9/2025, 6:57:21 PM | 4 1 | View on Bluesky | view

Tom Kindlon (@tomkindlon.bsky.social) reply parent

Thank you, Suzanne 😊‬

1/9/2025, 6:45:55 PM | 1 0 | View on Bluesky | view

Tom Kindlon (@tomkindlon.bsky.social) reply parent

‪Thank you 😊‬

1/9/2025, 6:45:37 PM | 2 0 | View on Bluesky | view

Tom Kindlon (@tomkindlon.bsky.social) reply parent

‪2/‬ ‪Screenshot of Belvedere Union post:‬ ‪Belvedere Union Social Justice Award 2025 – Honouring Tom Kindlon (OB ’91)‬ @irishmecfsassoc.bsky.social #CFS #MyalgicEncephalomyelitis ‪

Belvedere Union Belvedere Union 1,829 followers 1,829 followers 11h • Edited • 11 hours ago • Edited • Visible to anyone on or off LinkedIn Belvedere Union Social Justice Award 2025 – Honouring Tom Kindlon (OB ’91) We are proud to announce that Tom Kindlon (Class of 1991) has been named the 2025 recipient of the Belvedere Union Social Justice Award. The award will be presented at our Annual Dinner in the Round Room, Mansion House, on October 17th. For nearly three decades, Tom has been a tireless advocate for people living with Myalgic Encephalomyelitis (ME/CFS). Serving as Assistant Chairperson of the Irish ME/CFS Association for 29 years and Treasurer for 11 years, he has provided unwavering support through events, patient resources, and advocacy. Since his diagnosis in 1994, Tom has become a respected international voice in ME/CFS research and awareness, publishing extensively and championing the needs of patients worldwide. His dedication has been recognised globally, including the 2019 Wego Health Lifetime Achievement Award, supported by hundreds of patients. Tom’s lifelong commitment to social justice, despite personal health challenges, reflects the very best of Belvedere College S.J. and our Union’s values. We are honoured to celebrate his extraordinary contribution at this year’s dinner. 🎟️ Tickets are selling quickly – secure yours here: https://lnkd.in/e8k8NReY John Reynolds Colin Lynch Ivan Hammond Cathal Barry Neil Owens Niall Behan Brian Terry Greg Gormley Thomas Arnold Shayne Murphy Robert Forbes PJ O'Brien John O'Reilly Kevin Jolley Ciarán Murray Paul Bryce John Treacy

1/9/2025, 5:43:29 PM | 14 1 | View on Bluesky | view

Tom Kindlon (@tomkindlon.bsky.social)

🧵 I'm honoured to be recognised in this way by the Belvedere Union 😊 Screenshot of their full announcement in the next post. [In recent years, I’ve cut back a bit from a fairly hectic level of activity but still plenty to do, so no plans to retire any time soon] #MEcfs #CFS #PwME 1/

1/9/2025, 5:13:34 PM | 50 9 | View on Bluesky | view

Tom Kindlon (@tomkindlon.bsky.social)

Press release: "La Trobe researcher Dr Sarah Annesley has secured funding from @meresearchuk.bsky.social to support a pioneering study into Chronic Fatigue Syndrome ( #CFS)" www.latrobe.edu.au/news/announc... [Their formatting of their web pages is a bit off] #ChronicFatigueSyndrome #MEcfs #PwME

La Trobe researcher Dr Sarah Annesley has secured funding from ME Research UK to support a pioneering study into Chronic Fatigue Syndrome (CFS). Dr Annesley, from the School of Agriculture, Biomedicine and Environment, will investigate whether molecules that regulate gene expression and energy production, known as microRNAs, are dysregulated in post-viral CFS. The study will focus on platelets which, beyond their role in blood clotting, are increasingly recognised as key regulators of immune function. “This funding marks an exciting step forward in our efforts to understand the complex biology of CFS,” Dr Sarah Annesley said. “We predict that abnormal platelet activation may contribute to immune system dysfunction in CFS, and this pilot study will help us explore that possibility.” “Importantly, our research is co-designed with individuals who have lived experience of CFS, ensuring it remains grounded in the realities of those affected.” Working with Dr Annesley are Dr Daniel Missailidis, Dr Jacqueline Orian, Dr Nina Riddell, Dr Lesley Cheng and Dr Melanie Murphy.

1/9/2025, 3:28:52 PM | 6 1 | View on Bluesky | view

Tom Kindlon (@tomkindlon.bsky.social) reply parent

2/ @graslab.bsky.social is on Bluesky

1/9/2025, 3:23:29 PM | 0 1 | View on Bluesky | view

GrasLab (@graslab.bsky.social) reposted

Starting the day @latrobeuni.bsky.social city campus checking the equipment and venue for our #LongCovid conference on Friday 12th of September Register for online attendance - it’s free ! longcovid2025.com @limsltu.bsky.social

12/8/2025, 10:23:59 PM | 3 5 | View on Bluesky | view

Call me Ishmael (@thewhitewhale.bsky.social) reposted

Nice to see some local info sharing on LC - La Trobe Uni is putting on the Long Covid 2025 conference. Free rego to watch online. longcovid2025.com

28/8/2025, 1:00:10 PM | 4 5 | View on Bluesky | view

SWA (@swalexander.bsky.social) reposted

Finally! After surviving sepsis four times and living with its lasting effects, I've spent years advocating for deeper research into immune responses to bacteria, viruses, and fungi, particularly in conditions like ME/CFS, fibromyalgia, and MCAS.

1/9/2025, 2:13:56 PM | 9 3 | View on Bluesky | view

Tom Kindlon (@tomkindlon.bsky.social)

New La Trobe Uni [Australia] press release: "Long COVID could hold key to ME/CFS, MS" www.latrobe.edu.au/news/article... The Post-Acute Viral Infection diseases Group (PAVING) Centre of Research Excellence will be launched with $3 million in Federal funding from NHMRC. #MEcfs #LongCovid #MS

photo of a woman in a laboratory Long COVID could provide vital clues to uncover the cause of other life-limiting post-viral infections such as Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and Multiple Sclerosis at a new research centre to be established at La Trobe University. The Post-Acute Viral Infection diseases Group (PAVING) Centre of Research Excellence will be launched with $3 million in Federal funding from the National Health and Medical Research Council (NHMRC).

1/9/2025, 2:06:33 PM | 19 11 | View on Bluesky | view

Tom Kindlon (@tomkindlon.bsky.social)

🧵 New US News Release Study Reveals Details of Overactive Immune System in Patients with Chronic Fatigue Syndrome (ME/CFS) www.eurekalert.org/news-release... "Patients with [ME/CFS] have heightened innate immune responses to bacteria, viruses & fungi" #ChronicFatigueSyndrome #MEcfs #CFS #PwME 1/

News Release 1-Sep-2025 Study Reveals Details of Overactive Immune System in Patients with Chronic Fatigue Syndrome (ME/CFS) Peer-Reviewed Publication Columbia University's Mailman School of Public Health Patients with chronic fatigue syndrome/myalgic encephalomyelitis (ME/CFS) have heightened innate immune responses to bacteria, viruses and fungi. While these responses are essential to fight infection, they can cause damage when unchecked. Led by researchers at the Center for Infection and Immunity (CII) at Columbia University Mailman School of Public Health with a multicenter team of leading ME/CFS researchers, the new study reveals molecular-level details into the syndrome’s lasting effects on inflammation and immune response that could inform the development of targeted therapeutic interventions to reduce symptoms of ME/CFS and other postinfectious syndromes such as post-treatment Lyme disease and Long COVID. Study findings are published in the journal npj Metabolic Health and Disease.

1/9/2025, 1:43:22 PM | 27 12 | View on Bluesky | view

Tom Kindlon (@tomkindlon.bsky.social) reply parent

2/ Google English translations: themeinquiryreport-com.translate.goog/2025/08/29/v... themeinquiryreport-com.translate.goog/2025/08/29/v... themeinquiryreport-com.translate.goog/2025/08/29/v... #MyalgicEncephalomyelitis #ChronicFatigueSyndrome

1/9/2025, 12:34:33 PM | 3 0 | View on Bluesky | view

Tom Kindlon (@tomkindlon.bsky.social)

"about a new ME clinic which claims to use & follow the Canadian diagnostic criteria, but instead through a loophole uses persistent physical symptoms/functional somatic symptoms" Screenshot from latest Science for ME weekly update #MEcfs #CFS 1/

Sweden Disturbing discovery by patient advocate

1/9/2025, 12:33:29 PM | 5 3 | View on Bluesky | view

Tom Kindlon (@tomkindlon.bsky.social)

Trial by Error by David Tuller @davetuller1.bsky.social : Hungarian Experts Make Goulash out of NICE Guidelines virology.ws/2025/08/23/t... Screenshot from latest Science for ME weekly update #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

Trial by Error by David Tuller Hungarian Experts Make Goulash out of NICE Guidelines On an article about ME in the Hungarian medical journal Orvosi Hetilap which misrepresented the core findings of the 2021 NICE ME/CFS guidelines. The guidelines strongly advise against graded exercise therapy as treatment for ME, but the article claims the opposite. The authors have acknowledged their error after a letter from professor emeritus Jonathan Edwards where he says:

1/9/2025, 12:26:21 AM | 9 3 | View on Bluesky | view

Tom Kindlon (@tomkindlon.bsky.social)

UK ME Association awards DecodeME @decodemestudy.bsky.social the Howes Goudsmit Award 2025 meassociation.org.uk/2025/08/the-... Screenshot from latest Science for ME weekly update #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

UK ME Association awards DecodeME the Howes Goudsmit Award 2025 Dr Charles Shepherd of the MEA said:

1/9/2025, 12:21:10 AM | 8 3 | View on Bluesky | view

Science for ME online forum (@scienceforme.bsky.social) reposted

Our latest News in Brief post has headlines and links to further reading for #MECFS and #LongCovid news, advocacy and research for the week of Aug. 25 - 31. Topics: News, advocacy and articles Coming events Research news and commentary & Published research www.s4me.info/threads/news...

31/8/2025, 9:43:31 PM | 7 5 | View on Bluesky | view

DecodeME (@decodemestudy.bsky.social) reposted

As we move into the next phase of our study, we would like to say a huge thank you. Going forwards, we will no longer be able to respond to emails & check social media. Stay up to date through our email list - sign up at the bottom of our new homepage: shorturl.at/46QSk

DecodeME graphic. In the centre it says 'Thank you' in white cursive writing and beneath it 'from DecodeME'.

29/8/2025, 10:24:55 AM | 20 7 | View on Bluesky | view

Tom Kindlon (@tomkindlon.bsky.social)

"Round up of articles spotted online in June and July 2025 that focus on the experiences of people with ‘psychologised’ or hard to diagnose health conditions" from Chronic Living Therapy @chronicliving123.bsky.social chroniclivingtherapy.com/3-elsewhere-... #MEcfs #LongCovid

#3 Elsewhere on the web Our news round up includes: • Helen Goss’ Long Covid Parent/Carer Substack • Dutch Doctors make a powerful educational video about ME and Long Covid • Arte TV shows documentary, ‘Chronically Ignored’, about ME and Long Covid (still available for viewers in France, Germany and Austria) • Coverage of the UK Government’s long awaited ‘Delivery Plan’ for ME/CFS Read the full round up

31/8/2025, 8:05:14 PM | 4 3 | View on Bluesky | view

Tom Kindlon (@tomkindlon.bsky.social) reply parent

2/ "several high SDI countries emerged as clear outliers with notably elevated YLD rates. For instance, the US, Belgium, & Qatar had notably higher age standardized (and crude) YLD rates" "remarkable #longCOVID burden may be “hidden” within affluent regions when one looks only at broad averages."

31/8/2025, 4:15:32 PM | 2 1 | View on Bluesky | view

Tom Kindlon (@tomkindlon.bsky.social)

A blogpost of mine from 2019: “UK medical research charities spend a broadly similar amount to the taxpayer-funded National Institute for Health Research & Medical Research Council” forums.phoenixrising.me/blog-article... The exact figures will have changed but the broad principle remains.

31/8/2025, 4:06:11 PM | 2 1 | View on Bluesky | view

Tom Kindlon (@tomkindlon.bsky.social)

Fatigue, Interoplastic and Nociplastic Distress in Myalgic Encephalomyelitis / Chronic Fatigue Syndrome, Gulf War Illness & Chronic Idiopathic Fatigue www.frontiersin.org/journals/neu... " #GWI & #MECFS groups were more tender than controls for females (p < 0.0045) and males (p < 10 −6 )”

31/8/2025, 3:37:40 PM | 10 5 | View on Bluesky | view

Tom Kindlon (@tomkindlon.bsky.social)

The emerging role of exosomal LncRNAs in chronic fatigue syndrome: from intercellular communication to disease biomarkers www.frontiersin.org/journals/mol... Review. "Our analyses suggest that EV-LncRNAs are molecular connectors linking the major etiological domains of CFS” #MEcfs #PwME

31/8/2025, 2:45:15 PM | 7 3 | View on Bluesky | view

Tom Kindlon (@tomkindlon.bsky.social)

7 new ME/CFS projects have received funding from the Dutch research agency ZonMw. The projects focus on different aspects such as the brain, muscle, microbiome, viruses, orthostatic intolerance, & the immune system. Google translation: www-zonmw-nl.translate.goog/nl/nieuws/su... #MEcfs #CFS #PwME

31/8/2025, 2:40:31 PM | 15 5 | View on Bluesky | view

Tom Kindlon (@tomkindlon.bsky.social)

Bateman Horne Center @batemanhornecenter.bsky.social : Finding Comfort When Bedbound: A Community Member Shares Her Advice batemanhornecenter.org/finding-comf... Blog post with suggestions that may help people who have severe ME/CFS. #SevereME #MEcfs #CFS #PwME

31/8/2025, 1:29:40 PM | 12 3 | View on Bluesky | view

Raoul Schendel (@raoullucas.bsky.social) reposted

Ein Artikel in der Apotheken Umschau mit Frau Prof. Scheibenbogen über die dringende Suche nach Medikamenten für #MECFS und die immer wieder fehlenden finanziellen Möglichkeiten, um viele und vor allem benötigte größere Studien umzusetzen. www.apotheken-umschau.de/krankheiten-...

26/8/2025, 1:41:49 PM | 45 14 | View on Bluesky | view

LangzeitC (@langzeitc.bsky.social) reposted

Prof @scheibenbogen.bsky.social: "Wir waren noch nie so nah wie heute an wirklichen Durchbrüchen, wir verstehen jetzt Mechanismen der Krankheit [ #LongCovid / #MECFS], wir haben zugelassene Medikamente dafür. [...] Wir brauchen nur noch das Geld dafür." www.apotheken-umschau.de/krankheiten-...

26/8/2025, 4:22:34 PM | 60 31 | View on Bluesky | view

Ralf Wittenbrink (@ralfwittenbrink.bsky.social) reposted

„Es muss doch jetzt endlich mal vorwärtsgehen“ – die lange Suche nach Medikamenten gegen ME/CFS „Hunderttausende Menschen mit ME/CFS in Deutschland sehnen sich nach Besserung. Wo bleiben die Medikamente für ihre Erkrankung? Eine Forscherin macht Hoffnung.“ www.apotheken-umschau.de/krankheiten-...

26/8/2025, 2:08:39 PM | 133 47 | View on Bluesky | view

Tom Kindlon (@tomkindlon.bsky.social)

A BBC podcast titled "Access All: Disability News & Mental Health" asks if the DNA of people with ME is different. They interview Prof Chris Ponting @cgatist.bsky.social & participant Laura Boyles about the DecodeME study. Starts at 22.12 minutes www.bbc.com/audio/play/p... #MEcfs #PwME #CFS

31/8/2025, 12:21:02 PM | 18 10 | View on Bluesky | view

Tom Kindlon (@tomkindlon.bsky.social) reply parent

2/ Katharine Cheston is on Bluesky @kacheston.bsky.social

30/8/2025, 11:46:03 PM | 0 0 | View on Bluesky | view

Tom Kindlon (@tomkindlon.bsky.social)

"[Researcher] Katharine looks at how stigma & shame are experienced by analysing memoirs & conducting interviews with patients. She focuses on M.E. & other similar illnesses" from @chronicliving123.bsky.social chroniclivingtherapy.com/katharine-ch... #MEcfs #CFS #PwME #Spoonie #chronicillness

Katharine Cheston talks stigma and silencing Katharine looks at how stigma and shame are experienced by analysing memoirs and conducting interviews with patients. She focuses on M.E. and other similar illnesses. Her newer work looks at how (and why) this stigma is inflicted on patients, and explores medical publications and media coverage. I interviewed her to understand how the stigma is created and why. She comes at this from a literary studies and sociology perspective but her findings are relevant to therapists and anyone who works with patients or clients with these illnesses. Read Katharine's interview

30/8/2025, 11:42:55 PM | 14 4 | View on Bluesky | view

Tom Kindlon (@tomkindlon.bsky.social)

19-minute sympathetic podcast associated with a national Irish radio station Newstalk discussing 2 pieces of recent biomedical ME/CFS research www.newstalk.com/news/luke-on... #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

Photo of a woman in a hospital bed with an eye mask on and heavy noise defenders with the caption

30/8/2025, 10:10:26 PM | 17 6 | View on Bluesky | view

CarolC (@carolconnolly.bsky.social) reposted

Great 15min documentary on ME/CFS and Post Exertional Malaise

30/8/2025, 11:59:51 AM | 8 8 | View on Bluesky | view

Tom Kindlon (@tomkindlon.bsky.social)

Resources for Caregivers (M.E.), from @chronicliving123.bsky.social chroniclivingtherapy.com/resources-ca... #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #SevereME

Resources for Caregivers (M.E.) Prompted by Ian Nye (see the first article above) who commented that he'd found few resources for carers of people with M.E. I decided to track some down. I was helped by many people on twitter/X who shared their top tips and resources with me. The result is a list of UK and international helplines, books and online support groups. It includes some resources for those supporting the severe and very severe patients. Hopefully this will be a useful resource for therapists to share with clients. It's in our news section and on our resources page. Check out our resources for caregivers (M.E.)

30/8/2025, 12:42:29 AM | 9 4 | View on Bluesky | view

Tom Kindlon (@tomkindlon.bsky.social) reply parent

4/ This came in May but I’ve only gotten around to watching it in the last 24 hours.

29/8/2025, 3:55:59 PM | 7 1 | View on Bluesky | view

Tom Kindlon (@tomkindlon.bsky.social) reply parent

3/ Associated news article which includes a link to a separate but related 8.5-minute TVNZ Breakfast piece with Glenys Rumsey & ANZMES President, Fiona Charlton www.1news.co.nz/2025/05/12/m... #SevereME #ChronicFatigueSyndrome

29/8/2025, 3:06:02 PM | 8 1 | View on Bluesky | view

Tom Kindlon (@tomkindlon.bsky.social) reply parent

2/ Features Rose Silvester, Anna Brooks, ME patients Rhiannon Purves & Tammy Rumsey, family carer Glenys Rumsey & friend Holly Jackson. Glenys Rumsey is a retired nurse & has developed a shared care home for severe ME sufferers in her house. 16 min. #SevereME #CFS #PwME #MEcfs

29/8/2025, 3:00:37 PM | 4 2 | View on Bluesky | view

Tom Kindlon (@tomkindlon.bsky.social)

Hope to see a few of you at this 👋 #MyalgicEncephalomyelitis #ChronicFatigueSyndrome

29/8/2025, 2:57:26 PM | 3 1 | View on Bluesky | view

Tom Kindlon (@tomkindlon.bsky.social)

🧵 "ME/CFS: The mysterious illness trapping people in their bodies" Journalist Zoe Madden-Smith from Re: News @1newsnz.nzcow.com in New Zealand looks into the controversy about ME/CFS in a short but informative documentary youtu.be/DsOAq6cs564 #ChronicFatigueSyndrome #MEcfs #CFS #PwME 1/

29/8/2025, 2:29:13 PM | 26 8 | View on Bluesky | view

Irish ME/CFS Association (@irishmecfsassoc.bsky.social) reposted

Informal ME/CFS social meet-up in Dundalk hosted by Tom Kindlon @tomkindlon.bsky.social on Tuesday, September 9 irishmecfs.org/blog/dundalk... Hopefully we’ll see some of you there. #MEcfs #PwME #CFS #MyalgicEncephalomyelitis #ChronicFatigueSyndrome

29/8/2025, 1:33:49 PM | 1 1 | View on Bluesky | view

ME/CFS Science (@mecfsskeptic.bsky.social) reposted

1) 🇦🇺 The Australian research group of Christopher Armstrong just published a review on cerebral blood flow (CBF) in ME/CFS and orthostatic intolerance. About half of the ME/CFS studies reported a significant CBF decrease.

27/8/2025, 1:01:20 PM | 34 14 | View on Bluesky | view

ME/CFS Science (@mecfsskeptic.bsky.social) reposted

1) 7 new ME/CFS projects have received funding from the Dutch research agency ZonMw. All projects look high-quality and focus on different aspects such as the brain, muscle, microbiome, viruses, orthostatic intolerance, and the immune system. A brief overview 🧵

28/8/2025, 3:49:04 PM | 37 12 | View on Bluesky | view

Louise Fox 🦊 (@louise-fox.bsky.social) reposted reply parent

Chronic illness inspiration #ME/CFS #Quicksand

A comic with three panels, each panel showing two people stuck in separate puddles of quicksand, only their arms and heads visible. Panel one: Person one is flailing their arms shouting

28/8/2025, 7:59:59 PM | 19 6 | View on Bluesky | view

David Tuller (@davetuller1.bsky.social) reposted

Here's a post highlighting recent blogs worth reading from @julierehmeyer.bsky.social on Beth Mazur's death, @whitneydafoe.bsky.social on "real life," and @drelke.bsky.social on society's exercise obsession virology.ws/2025/08/28/t...

28/8/2025, 7:46:15 PM | 10 8 | View on Bluesky | view

David Tuller (@davetuller1.bsky.social) reposted

A major journal, eClinicalMedicine, published a meta-analysis claiming "high-certainty" evidence for exercise for Long COVID--even though the paper also acknowledged that most of the data used was of poor quality. Hm. I sent a letter to the journal. virology.ws/2025/08/27/t...

27/8/2025, 4:54:13 PM | 31 5 | View on Bluesky | view

Tom Kindlon (@tomkindlon.bsky.social)

#MyalgicEncephalomyelitis #PwME #MEcfs #CFS

The fact I want everyone to know this World ME Day is .... Fact: ME is an incapacitating illness.

28/8/2025, 9:18:19 PM | 10 4 | View on Bluesky | view

Tom Kindlon (@tomkindlon.bsky.social) reply parent

Another translation: “Researchers at Uppsala Uni have made important progress in understanding post-COVID and ME. Jonas Bergquist and his research group have identified biomarkers for inflammation in both cerebrospinal fluid and blood in patients with long-term problems after infections.”

28/8/2025, 4:00:35 PM | 8 3 | View on Bluesky | view

DecodeME (@decodemestudy.bsky.social) reposted

As we approach the end of August, the new DecodeME website, over on the University of Edinburgh, will now be the central place for our updates and contact information. You can find our new website here: decodeme.ed.ac.uk

New website! DecodeME's website has moved to the University of Edinburgh's site. Find the link in our bio.

22/8/2025, 3:07:54 PM | 23 14 | View on Bluesky | view

DecodeME (@decodemestudy.bsky.social) reposted

Our genetics results webinar recording is now available! Thank you to the 2500+ people who joined us live last week. For those who want to watch back, or who couldn’t attend you can find it on our new website, here: shorturl.at/Uh8xb

DecodeME 'The Results'. Post reads: 'Our Genetic Results webinar video and transcript are now available!'. Beneath this is an image of a clapperboard and an image of a transcript.

27/8/2025, 11:02:03 AM | 23 17 | View on Bluesky | view

DecodeME (@decodemestudy.bsky.social) reposted

Interested in supporting future ME/CFS research? @edinburgh-uni.bsky.social & @actionforme.bsky.social are expanding on DecodeME’s research through projects like SequenceME & Long Covid, which will use DecodeME data to study the entire genome. Help support future ME/CFS research: shorturl.at/rRFD9

Alt text: DecodeME post titled 'Support future ME/CFS research'. There is a picture of two hands and in between it is a green heart that says 'donate'. At the bottom of the graphic it says 'Donations will be used towards research projects such as the Genetics Centre of Excellence and Sequence ME and Long Covid.' Link in bio.

28/8/2025, 11:50:33 AM | 15 11 | View on Bluesky | view

Tom Kindlon (@tomkindlon.bsky.social)

A type of press release from Sweden: "Scientists found important biomarkers for postcovid" Google translation: www-uu-se.translate.goog/nyheter/2025... #LongCovid #MEcfs

Scientists found important biomarkers at postcovid 2025-08-11 hand holding blood tests Jonas Bergquist and his research group at Uppsala University has made important discoveries about the mechanisms behind postcovid and ME. Photo: Getty Images Researchers at Uppsala University have made important rampages in the understanding of postcovid and ME (myalgic encephalomyelitis). Jonas Bergquist and Hans Research Group have identified biomarkers for inflammation in the blood and the blood of their patients with long-term variants better for infection.

28/8/2025, 12:15:35 PM | 14 6 | View on Bluesky | view

sarah boothby (@swastrosarah.bsky.social) reposted

I've been reminded today of how informative this video is. Thank you @valerieeliotsmith.bsky.social for everything you and all the other contributors and makers of this film have done. I think the medical knowledge has moved on but as a context for the UK: www.dialogues-mecfs.co.uk/films/the-ta...

27/8/2025, 6:24:03 PM | 34 10 | View on Bluesky | view

Tom Kindlon (@tomkindlon.bsky.social)

An anonymous author with M.E. shares how she went from being a sceptic to really understanding the condition, from @chronicliving123.bsky.social chroniclivingtherapy.com/scepticism-u... #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

From sceptic to 'getting it' An anonymous author with M.E. shares how she went from being a sceptic to really understanding the condition. This path is one that many people face when they first get ill - thanks to widespread ignorance and misinformation about the condition and the way our culture shames people with this condition. It's vital we understand the impacts of this stigma and misinformation. It can delay diagnosis take even longer than necessary and exacerbate feelings of self doubt and shame about the illness. Our author found support in the online M.E. community and now contributes herself. Read 'From Scepticism to Understanding - the hard way'

28/8/2025, 12:40:59 AM | 15 9 | View on Bluesky | view

The Real McCoy (@rippermd41.bsky.social) reposted

As a patient with #MECFS and someone with an MD, I agree with Dr. Davenport. Post-exertional malaise (PEM) is the key element we need to educate providers on. Let me step you through why 🧵

Screenshot of tweets from Todd Davenport @sunsopeningband Maybe it's just another day ending in

Screenshot of tweets by Todd Davenport @sunsopeningband thread continues from previous photo it's to *get it right.* Sometimes that critique is pointed and direct. There's a lot of painful experiences and trauma out there. As someone studying a phenomenon I don't live with, the best I can do is be a knowledgeable and empathetic interloper. But an interloper nevertheless. Thread continues So it's with close partnership of people living with PEM that we can learn, grow, and do better. Patients don't have the obligation to deliver feedback on our mistakes in any certain tone or way. No heroes, no pedestals. Only our best. Here's to the pursuit of getting it right.

27/8/2025, 9:31:46 PM | 33 15 | View on Bluesky | view

Tom Kindlon (@tomkindlon.bsky.social)

Fact: You can't "push through" ME. #PwME #MyalgicEncephalomyelitis #MEcfs

The FACT I want everyone to Know this World ME Day is .... Fact: You can't

27/8/2025, 10:02:57 PM | 31 10 | View on Bluesky | view

Sten Helmfrid (@stenhelmfrid.bsky.social) reposted

@paulgarnerwoof.bsky.social argues that his case (n=1) shows that positive thinking and exercise will cure #MECFS. Here are some more comprehensive statistics from a recent survey. Graded exercise therapy (GET) is the worst intervention by far (n=299), and pacing is the best (n=803).

15/7/2025, 6:47:12 AM | 19 10 | View on Bluesky | view

Tom Kindlon (@tomkindlon.bsky.social)

"A married couple talks about the impact of M.E." from @chronicliving123.bsky.social chroniclivingtherapy.com/couple-talks... #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

A married couple talks about M.E.'s impact Ian and Michelle Nye have written an open and generous article about their experiences as a couple, navigating her M.E. diagnosis. The illness brought huge changes to their hopes expectations for the future. They talk about how they manage daily life as well as the larger choices they have had to make. Ian is a music therapist and reflects on how skills and insights he has developed in his working life help him to support Michelle. Read Michelle and Ian's article

27/8/2025, 6:18:47 PM | 5 6 | View on Bluesky | view

Tom Kindlon (@tomkindlon.bsky.social)

News Release 26-Aug-2025 Global analysis reveals overlooked hotspots at risk for long COVID due to early disability burdens www.eurekalert.org/news-release... Full paper: onlinelibrary.wiley.com/doi/10.1002/... #LongCovid #PASC

Graphical Abstract The COVID-related measure known as “years lived with disability” (YLDs) in 2021 may serve as an early warning sign of potential long COVID burden in the years that follow. This nonfatal health measure revealed that, from a global perspective, women (especially those over age 20) and adults aged 20–54 may have borne a higher share of COVID's long-lasting effects. Importantly, this burden was not equally distributed around the world. Low- and middle-income countries (LMICs), particularly in parts of Sub-Saharan Africa, experienced the highest age-standardized YLD rates, potentially associated with lingering COVID-related health problems. Notably, eight out of the ten hardest-hit countries in 2021 were LMICs. These disparities might reflect deeper structural vulnerabilities, such as limited healthcare access, which left some populations more exposed to the pandemic's long-term consequences. To tackle these global inequalities, the study calls for urgent action: improve rehabilitation services for those affected by long COVID, strengthen monitoring systems to track long COVID cases, and ensure that resources and care are shared fairly so that no area is left behind in the recovery process.

27/8/2025, 1:35:46 PM | 5 4 | View on Bluesky | view

Science for ME online forum (@scienceforme.bsky.social) reposted

Our latest News in Brief post has headlines and links to further reading for #MECFS and #LongCovid news, advocacy and research for the week of Aug. 18 - 24. Topics: News, advocacy and articles Coming events Research news and commentary & Published research www.s4me.info/threads/news...

24/8/2025, 8:49:11 PM | 9 6 | View on Bluesky | view

Tom Kindlon (@tomkindlon.bsky.social)

ME communication/caregiver survey to help with the development of a communication app Caregiver survey docs.google.com/forms/d/e/1F... ME patient survey docs.google.com/forms/d/e/1F... #LongCovid #MEcfs

Communication app in development An app is being developed to help people with ME and Long COVID (and similar) communicate their needs. The developers are requesting input from caregivers. Please fill out the short survey (google doc link below). Your responses will make this app as helpful as possible. ME Communication / Caregiver Survey Thanks for taking the time to help us today! We're creating a simple tool that will help people with ME and Long Covid communicate their needs when speaking is too hard. We'd love your input to make sure it truly helps. If you are a caregiver for a person with ME, this is the survey for you! https://docs.google.com/forms/d/e/1FAIpQLSfrTu82ubZYeDZZjSKHJUccv0QTq4rDp2OlQpGk8MDuHxThAg/viewform?pli=1 If able, the input of the person with ME you care for is of great value. The link so they can complete the survey People with ME SURVEY HERE.

27/8/2025, 1:08:19 AM | 8 10 | View on Bluesky | view

Tom Kindlon (@tomkindlon.bsky.social)

"What I Wish I’d Known the Day Dream and Disability Collided" themighty.com/topic/disabi... #Disability #chronicillness #Disabled #Spoonie

Katie D. • Follow Last updated: May 6, 2024 Digital painting of a woman. February 6, 2015 was the day my dream career and lifelong, but recently diagnosed disability collided. Extremely long and incredibly painful story short, in the months that followed, my life collapsed. Combine that with existing anxiety and depression, and I fell apart. Here’s what I wish someone had told me that day.

27/8/2025, 12:57:04 AM | 4 2 | View on Bluesky | view

Tom Kindlon (@tomkindlon.bsky.social)

Cerebral blood flow changes in A ME/CFS & OI vs healthy controls, & B ME/CFS with OI vs ME/CFS without OI From:Mapping cerebral blood flow in ME/CFS & orthostatic intolerance: insights from a systematic review translational-medicine.biomedcentral.com/articles/10.... #MEcfs #OrthostaticIntolerance

Cerebral blood flow changes in A ME/CFS and OI vs healthy controls, and B ME/CFS with OI vs ME/CFS without OI. Seven and 2 articles which studied OI only and ME/CFS + OI combined respectively did not report the difference in cerebral blood flow compared to healthy controls (Panel A). Four articles which studied ME/CFS + OI combined did not report the differences in cerebral blood flow between ME/CFS patients with OI compared to ME/CFS without OI (Panel B). CBF: cerebral blood flow, ME/CFS: myalgic encephalomyelitis/chronic fatigue syndrome, OI: orthostatic intolerance

27/8/2025, 12:37:55 AM | 12 7 | View on Bluesky | view

Open Medicine Foundation (OMF) (@openmedf.bsky.social) reposted

Please join the Community Symposium on the Molecular Basis of ME/CFS with opening remarks by Ronald W. Davis, PhD, Stanford University, followed by a welcome from Linda Tannenbaum, OMF CEO. 🗓️ September 5, 2025 ⏲️ 8:00 am – 2:30 pm PST 👉 Register here: ow.ly/9zRg50WIbO3.

Community Symposium on the Molecular Basis of ME/CFS Agenda

22/8/2025, 3:27:39 PM | 23 15 | View on Bluesky | view

#MEAction Network (@meactnet.bsky.social) reposted

Essential telehealth provisions are set to expire on September 30th 2025. Congress needs to hear from all of us that telehealth saves lives. Sample script and call instructions: www.meactions.org/telehealth #pwME #telehealth #disability #MyalgicE #LongCovid #congress #MECFS

26/8/2025, 5:16:28 PM | 53 43 | View on Bluesky | view

Tom Kindlon (@tomkindlon.bsky.social)

Thread: "News coverage of the NMCB research consortium on ME/CFS. Science editor of De Volkskrant, one of the largest papers in the Netherlands, interviews Jos Bosch consortium project leader" threadreaderapp.com/thread/19599... #MEcfs #CFS

26/8/2025, 12:00:04 PM | 1 1 | View on Bluesky | view

Tom Kindlon (@tomkindlon.bsky.social)

"3.4% of adults reported long COVID. Adults with long COVID more often reported being unable to work due to health or disability compared to adults without long COVID (p=0.0006)." onlinelibrary.wiley.com/doi/abs/10.1... Screenshot from latest Science for ME weekly update #LongCovid #PASC

Employment Status, Work Limitations, Cognitive Dysfunction, and Sickness Absenteeism Among US Adults With and Without Long COVID — Nicole D. Ford et al.

26/8/2025, 1:22:23 AM | 15 8 | View on Bluesky | view

Tom Kindlon (@tomkindlon.bsky.social)

"Substantial increases were observed in primary healthcare consultations in 2024 compared to prepandemic levels. Many of the conditions with the greatest excess are associated with post-acute COVID-19 sequelae" www.researchsquare.com/article/rs-7... Screenshot from Science for ME update #LongCovid

Excess primary healthcare consultations in Norway in 2024 compared to pre-COVID-19-pandemic baseline trends — Richard Aubrey White et al.

26/8/2025, 1:08:38 AM | 8 5 | View on Bluesky | view

Tom Kindlon (@tomkindlon.bsky.social)

From Germany: “Have you considered that it could be burnout?”—psychologization and stigmatization of self-reported long COVID or post-COVID-19 vaccination syndrome bmcmedicine.biomedcentral.com/articles/10.... Screenshot from latest Science for ME weekly update #LongCovid #PASC

“Have you considered that it could be burnout?”—psychologization and stigmatization of self-reported long COVID or post-COVID-19 vaccination syndrome — Büchner et al.

26/8/2025, 12:55:06 AM | 12 3 | View on Bluesky | view

Tom Kindlon (@tomkindlon.bsky.social)

From Iran: The silent legacy of COVID-19: exploring genomic instability in long-term COVID-19 survivors bmcinfectdis.biomedcentral.com/articles/10.... Screenshot from latest Science for ME weekly update #LongCovid #PASC

The silent legacy of COVID-19: exploring genomic instability in long-term COVID-19 survivors — Abiri et al.

26/8/2025, 12:46:31 AM | 3 1 | View on Bluesky | view

ME/CFS Science (@mecfsskeptic.bsky.social) reposted

1) Suppose this isn't a coincidence: - Olfactomedin 4 (OLFM4) Is a Biomarker for the severity of infectious diseases. - OLFM4 is also one of the few DecodeME hits for patients with an infectious onset.

25/8/2025, 7:57:45 AM | 26 7 | View on Bluesky | view

Adam (@abrokenbattery.bsky.social) reposted

Powerful and important work by Jeremy Jeffs, capturing life with severe ME. Upcoming exhibition — ‘Lives We Cannot Live,’ Oxo Tower Gallery, London, 24–28 Sept. Give him a follow or subscribe for updates on his upcoming book. mailchi.mp/16f8611232cc...

24/8/2025, 6:01:40 PM | 23 12 | View on Bluesky | view

Tom Kindlon (@tomkindlon.bsky.social)

Recap of “Support Group: Who am I? Identity and Chronic Illness” (July 15, 2025) batemanhornecenter.org/wp-content/u... #chronicillness #spoonies #mecfs #longcovid #chronicallyill #spoonie

25/8/2025, 3:42:04 PM | 0 3 | View on Bluesky | view

Tom Kindlon (@tomkindlon.bsky.social)

From ME Research UK @meresearchuk.bsky.social : ME Research UK-funded researcher Dr Jarred Younger has recorded a 15 minute explanation of deCodeME's recently published pre-print results. This covers background, method, results, and importance - tinyurl.com/5n6buzpj #MECFS #decodeME

25/8/2025, 2:46:01 PM | 16 8 | View on Bluesky | view

Tom Kindlon (@tomkindlon.bsky.social)

Incorporation of information about ME/CFS which reflects the biological nature of the disease into continued medical education (CME) may prevent health providers erroneously attributing the origins of ME/CFS to psychosocial causes. Read more: bit.ly/45X7jk5 #MEcfs #CFS #PwME

25/8/2025, 2:38:46 PM | 5 4 | View on Bluesky | view

Tom Kindlon (@tomkindlon.bsky.social)

From @meresearchuk.bsky.social Assistant Professor Rob Wüst, who is working on research funded by ME Research UK, spoke at the International ME/CFS Conference 2025 on skeletal muscle alteration in Long COVID and ME/CFS. Find out more: www.meresearch.org.uk/assistant-pr... #MEcfs #LongCovid

25/8/2025, 2:31:25 PM | 7 5 | View on Bluesky | view

Tom Kindlon (@tomkindlon.bsky.social)

TREATME: the Open Medicine Foundation's Mammoth ME/CFS and Long COVID Treatment Survey Results www.healthrising.org/blog/2025/07... Includes a summary plus an audio version of the full article & separately of the summary #LongCovid #MEcfs #CFS #PwME @openmedf.bsky.social @cortjohnson.bsky.social

25/8/2025, 1:18:25 PM | 11 8 | View on Bluesky | view

Tom Kindlon (@tomkindlon.bsky.social)

An integrative review on the orexin system and hypothalamic dysfunction in myalgic encephalomyelitis/chronic fatigue syndrome: implications for precision medicine www.explorationpub.com/Journals/ent... Screenshot from latest Science for ME weekly update #MEcfs #CFS #PwME

25/8/2025, 2:37:50 AM | 7 2 | View on Bluesky | view

Tom Kindlon (@tomkindlon.bsky.social)

"The growing adoption of symptom tracking technologies is producing vast datasets that capture behaviour patterns, environmental contexts, and physiological signals that can reveal disease dynamics." www.amjmed.com/article/S000... Screenshot from Science for ME weekly update #LongCovid #MEcfs

The Importance of ‘In the Now’ Prospective Symptom Tracking in Chronic and Post-Viral Conditions: A Commentary — Lawrence D. Hayes et al.

25/8/2025, 2:30:33 AM | 4 1 | View on Bluesky | view

Tom Kindlon (@tomkindlon.bsky.social)

Stanford Genome Technology Center - Community Symposium on the Molecular Basis of ME/CFS med.stanford.edu/sgtc.html stanford.zoom.us/webinar/regi... Screenshot from latest Science for ME weekly update #MEcfs #CFS

Stanford Genome Technology Center - Community Symposium on the Molecular Basis of ME/CFS Friday, Sept. 5, 8 AM - 2:30 PM Pacific Time Speakers will

25/8/2025, 2:25:31 AM | 7 3 | View on Bluesky | view

Tom Kindlon (@tomkindlon.bsky.social)

DecodeME @decodemestudy.bsky.social news institute-genetics-cancer.ed.ac.uk/decodeme institute-genetics-cancer.ed.ac.uk/decodeme-the... Screenshot from Science for ME weekly update #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

DecodeME DecodeME has sent an email explaining that

25/8/2025, 1:10:03 AM | 9 4 | View on Bluesky | view

Tom Kindlon (@tomkindlon.bsky.social)

The journal Scientific Reports has a special issue on post-actute infectious syndromes (PAIS). www.nature.com/collections/... Screenshot from Science for ME weekly update #LongCovid #MEcfs

Scientific Reports The journal Scientific Reports has a special issue on post-actute infectious syndromes (PAIS). It welcomes

25/8/2025, 12:56:15 AM | 10 5 | View on Bluesky | view

Tom Kindlon

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