Tom Kindlon @tomkindlon.bsky.social · 20m4/ What sleep dysfunction in ME/CFS feels like #mecfs #cfs #pwme 020
Tom Kindlon @tomkindlon.bsky.social · 52m3/ COGNITIVE DYSFUNCTION "BRAIN FOG" IN ME/CFS #mecfs #pwme #cfs #brainfog 120
Tom Kindlon @tomkindlon.bsky.social · 1h3/ What cognitive dysfunction (brain fog) in ME/CFS feels like #mecfs #cfs #pwme #brainfog 150
Reposted by Tom KindlonME/CFS Science @mecfsscience.org · 10/10/20261) 🇩🇪 The German Society for ME/CFS (Deutsche Gesellschaft für ME/CFS) has its own small research program to fund smaller exploratory studies. €30,000 is awarded each year. Only researchers affiliated with an institution in Germany can apply. Deadline: 15 november. 1213
Tom Kindlon @tomkindlon.bsky.social · 1hIt has quite often seemed like many proponents of biopsychosocial approaches like GET and graded activity-oriented CBT didn’t want much biomedical research, particularly the type that would challenge their theories e.g. Royal Colleges report on CFS. Not very admirable. #MEcfs #PwME #CFS 181
Reposted by Tom KindlonME/CFS Science @mecfsscience.org · 7h1 🇳🇴) In this Norwegian study, therapists using a psychosomatic approach to ME/CFS expressed "concern about how current approaches might be viewed if future research were to establish a treatable biological dysfunction." 43310
Tom Kindlon @tomkindlon.bsky.social · 1h2/ POST-EXERTIONAL MALAISE (PEM) IN ME/CFS #mecfs #pem #postexertionalmalaise 142
Tom Kindlon @tomkindlon.bsky.social · 1h2/ What post-exertional malaise (PEM) in ME/CFS feels like #mecfs #pem #PostExertionalMalaise 170
Tom Kindlon @tomkindlon.bsky.social · 2hThe team at La Trobe University in Australia, including Drs Sarah Annesley & Daniel Missailidis, have published a study acknowledging funding from ME Research UK, which provides evidence of altered lipid metabolism in ME/CFS. Read more tinyurl.com/yv4mmvtn #ChronicFatigueSyndrome #MEcfs #CFS #PwME 284
Tom Kindlon @tomkindlon.bsky.social · 2hThanks Tony. I hadn’t been conscious I could do that now so good to know. I have just implemented it. Cheers 010
Tom Kindlon @tomkindlon.bsky.social · 2hME Research UK: As part of our Symptom Saturday series over the past 2 months, we’ve been exploring research insights into the core symptoms of ME/CFS. For ease of access & sharing, we’ve collated & summarised the info. Follow link for full overview. tinyurl.com/MEcoresympto... #MEcfs #CFS #PwME 183
Reposted by Tom KindlonKirsty Hall @kirstyhall.bsky.social · 3hMECFS eats your life. I have a medical appointment tomorrow. So today is 'not spaffing all my energy even though I really want to get on with other stuff' + showering. Tomorrow is 'do the thing'. Tuesday, and quite likely Wednesday is 'recover from the thing'. Half the week eaten by 1 hour. 0317
Tom Kindlon @tomkindlon.bsky.social · 2h🧵 ME Research UK As part of our Symptom Saturday series over the past 2 months,we’ve been exploring lived experiences relating to core symptoms of ME/CFS.For ease of access & sharing, we’ve collated & summarised the info.Follow link for full overview. tinyurl.com/MEcoresympto... #mecfs #pwme #cfs 1/ 282
Reposted by Tom KindlonDidier @medidier.bsky.social · 6hNice surprise (cont.) 👍 Thanks for sharing @tomkindlon.bsky.social as always! 021
Reposted by Tom KindlonDidier @medidier.bsky.social · 9hYep. A classic. I think we have known this for at least 5 years? (And any patient since day 1 of getting sick and moving into the toilet). 043
Tom Kindlon @tomkindlon.bsky.social · 15hLow Vasopressin in Myalgic Encephalomyelitise/Chronic Fatigue Syndrome Vasopressin is also known as antidiuretic hormone www.endocrinepractice.org/article/S153... Screenshot from AMMES October 2026 newsletter #MEcfs #PwME #CFS #MyalgicEncephalomyelitis #ChronicFatigueSyndrome 0289
Tom Kindlon @tomkindlon.bsky.social · 15hDoes Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Represent a Poly-Herpesvirus Post-Virus Infectious Disease? www.mdpi.com/1999-4915/17... Screenshot from AMMES October 2026 newsletter #MEcfs #PwME #CFS #MyalgicEncephalomyelitis #ChronicFatigueSyndrome 4125
Tom Kindlon @tomkindlon.bsky.social · 15h"Liaison psychiatry" by K. Johnstone @kjohnstone.bsky.social mecfs.substack.com/p/liaison-ps... Screenshot from AMMES October 2026 newsletter #MEcfs #chronicillness #hiddenillness #invisibleillness #PwME 0105
Tom Kindlon @tomkindlon.bsky.social · 16h3/ A screenshot of most of page 2 from British Psychological Society ME/CFS Guidelines (September 2026 Update) meassociation.org.uk/wp-content/u... #MEcfs #PwME #CFS #MyalgicEncephalomyelitis @drjogreer.bsky.social 021
Reposted by Tom KindlonDavid Tuller @davetuller1.bsky.social · 21hWTF, Springer Nature? Removing offensive language about patients being "combative" and "reproachful" is not enough. You need to explain why the language was there in the first place. virology.ws/2026/10/10/t...virology.wsTrial By Error: Springer Nature Removes Description of "Fatigue" Patients as "Combative" and "Reproachful" | Virology BlogBy David Tuller, DrPH A month after publishing a German-language article about chronic fatigue syndrome as part of a larger project, Springer Nature has rem ... 36724
Tom Kindlon @tomkindlon.bsky.social · 18h2/ Extract from British Psychological Society ME/CFS Guidelines (September 2026 Update) meassociation.org.uk/wp-content/u... #MEcfs #PwME #CFS #MyalgicEncephalomyelitis 2132
Reposted by Tom KindlonME/CFS San Diego @mecfssd.bsky.social · 02/10/2026CDC NHIS Redesign Public Comment due Oct 20: Proposed 2028 changes would remove questions on fatigue, cognition, hearing aids & mobility supports impacting representation. www.cdc.gov/nchs/nhis/ab...cdc.gov2028 NHIS Questionnaire RedesignNHIS is updating the survey to modernize its data collection process 001
Reposted by Tom KindlonME/CFS San Diego @mecfssd.bsky.social · 05/10/2026"Patient Knowledge, Doctor Ignorance": argues patients can develop more scientifically informed knowledge of ME/CFS than doctors because medical systems fail to produce & transmit that knowledge. www.sciencedirect.com/science/arti...sciencedirect.com 063
Reposted by Tom KindlonME/CFS San Diego @mecfssd.bsky.social · 08/10/2026@solveme.bsky.social Ramsay Research Grants: Applications open for ME/CFS research grants: $50K PhD, up to $100K postdoc/new or returning faculty, and up to $150K collaborative awards. Deadline Nov. 13, 2026. solvecfs.org/research/ram...solvecfs.orgRamsay Research Grants - Solve ME/CFS InitiativeThe Ramsay Program has been successful in attracting new scientists to the field of ME/CFS, providing much-needed funding for researchers to engage with the science of the disease and build pilot data... 022
Reposted by Tom KindlonME/CFS San Diego @mecfssd.bsky.social · 08/10/2026Norway Parliament Demonstration 10/28: @meforeningen.bsky.social ME Parents & Norwegian Covid Association protest a joint ME/fatigue guideline, calling for separate guidance for ME and post-infectious illness with PEM. www.me-foreldrene.no/markering-pa...me-foreldrene.noMarkering på Eidsvolds plass!Etter innspill fra medlemmene, planlegger vi en markering foran Stortinget i slutten av oktober. Markeringen vil ha tre hovedparoler: – Stopp felles retningslinje for ME og langvarig utmattelse – E… 021
Reposted by Tom KindlonME/CFS San Diego @mecfssd.bsky.social · 09/10/2026@mecfsclinicmn.bsky.social 2027 Virtual Conference: Jan/21-22/27, free for disabled medical professionals working <10 hours/week. A chance for clinicians and therapists to learn ME/CFS diagnosis and treatment; Dr. Tam plans to retire by 2032. www.mecfsclinicmn.org/conferencemecfsclinicmn.orgEventshttps://www.mecfsclinicmn.org/Conference 002
Reposted by Tom KindlonME/CFS San Diego @mecfssd.bsky.social · 09/10/2026Amsterdam Long COVID Conference: Mechanistic trials and biology; ME was discussed on its own and as an LC phenotype. New $8M DoD program. thesicktimes.org/2026/10/06/b...thesicktimes.orgBiological pathways and mechanistic trials centered at new Long COVID conference in Amsterdam - The Sick TimesResearchers, clinicians, and advocates gathered for the inaugural conference of the International Society for Long COVID and Post-Acute Infection Syndromes in the Netherlands in late August. The four-... 032
Reposted by Tom KindlonME/CFS San Diego @mecfssd.bsky.social · 10/10/2026@davetuller1.bsky.social interviews George Monbiot: about investigation of patient mistreatment, medical dismissal, outdated treatment approaches, & failure to translate scientific progress into better care. www.youtube.com/watch?v=Maae...youtube.comInterview with George Monbiot about Guardian column on ME/CFSYouTube video by David M Tuller 054
Reposted by Tom KindlonME/CFS San Diego @mecfssd.bsky.social · 10/10/2026PRIME ME/CFS Neurology Webinar: Researchers discuss brain & nervous system findings, imaging and potential implications for diagnosis & treatment. 10/28, 2–5 pm GMT. Register: us02web.zoom.us/webinar/regi...us02web.zoom.us 073
Reposted by Tom Kindlon#MEAction Network @meactnet.bsky.social · 01/10/2026We're excited to bring you a new art workshop on Oct. 29 at 12 PM EST. We have a Halloween theme to celebrate spooky season! One of our wonderful volunteers & #pwME, Orion Romero, will host. ow.ly/2zFU50ZTl4T All you need is pencil, paper & way to join online! #art #spoonie #MECFS 066
Reposted by Tom Kindlon#MEAction Network @meactnet.bsky.social · 05/10/2026We are thrilled to bring you 2 new webinars from Denise Lopez- Majano & Kim Moy. "Things We Caregivers Wish We Had Known" w/ Denise on Nov. 1 at 3pm ET. “Being on the Same Team: Strengthening Relationships Through Chronic Illness” w/ Kim on Nov. 15 at 3 pm ET. Registration coming soon! 0139
Reposted by Tom KindlonAlem Matthees @alemmatthees.bsky.social · 10/10/2026(1/2) @mecfsscience.org wrote an interesting series of articles about the dark history of psychosomatic medicine including peptic ulcer, rheumatoid arthritis, heart disease, cancer, schizophrenia, autism, diabetes, epilepsy, asthma, and multiple sclerosis. A worthy addition might be tuberculosis.mecfsscience.orgAll blog posts in the category psychosomatic medicine - ME/CFS ScienceAll blog posts in the category ‘Psychosomatic Medicine’ can be found here. Read about the influence of psychosomatic medicine on the illness ME/CFS. 34815
Reposted by Tom KindlonSonic J she/her @sonic25.bsky.social · 10/10/2026I'd add that the "therapies" we were prescribed actively harmed us, and made many of us permanently worse, a clear violation of the Hippocratic Oath. 084
Tom Kindlon @tomkindlon.bsky.social · 10/10/2026Abandoned, dismissed and gaslighted: there is no excuse for the way ME sufferers have been betrayed www.theguardian.com/commentisfre... Screenshot from AMMES October 2026 newsletter #MEcfs #PwME #CFS #MyalgicEncephalomyelitis #ChronicFatigueSyndrome 25518
Reposted by Tom Kindlonemily fraser 🌿🐌✨ @emilyesfraser.bsky.social · 09/10/2026Required reading for doctors, journalists, & anyone who cares about anyone w/ ME or Long Covid ⬇️ Includes excellent history of #GreatestMEdicalScandal & how the ignorance of doctors re #MECFS is continually renewed through informal (mis)training + biased media www.sciencedirect.com/science/arti...sciencedirect.com 25522
Reposted by Tom KindlonIrish ME/CFS Association @irishmecfsassoc.bsky.social · 09/10/2026We have given €54,000 from our research fund to the Solve ME/CFS Initiative over the years. #mecfs #pwme #cfs 042
Reposted by Tom KindlonRebel @rebellionista.bsky.social · 09/10/2026Surprisingly, this is actually quite good! 074
Reposted by Tom KindlonJulia Métraux @juliametraux.bsky.social · 08/10/2026Looking for an employment lawyer who has supported people with Long Covid for an article I'm working on who would have 15 minutes to speak Monday-Wednesday next week. Please reach out at jmetraux@motherjones.com 1146115
Reposted by Tom KindlonAlyssa Erin @alyssaaerinn.bsky.social · 09/10/2026If you understand a person with lactose intolerance can "technically" drink a glass of milk but that doesn't mean they'll tolerate the lactose... then you understand a person w PEM not tolerating activity. Just because we "can", doesn't mean We Can #MEcfs #LongCovid 0259
Tom Kindlon @tomkindlon.bsky.social · 09/10/2026"The survey has identified multiple different ways that psychologists can potentially give that support & help people with ME/CFS" Extract from British Psychological Society ME/CFS Guidelines (September 2026 Update) meassociation.org.uk/wp-content/u... #MEcfs #PwME #CFS #MyalgicEncephalomyelitis 44012
Tom Kindlon @tomkindlon.bsky.social · 09/10/2026From Ireland Characterizing Host Inflammatory Bioprofiles in People With Postacute Sequelae SARS-CoV-2 Infection (PASC) onlinelibrary.wiley.com/doi/10.1155/... Screenshot from latest Science for ME weekly update #LongCovid #PASC #PwLC #postcovid #postcovid19 1114
Tom Kindlon @tomkindlon.bsky.social · 09/10/2026From the US Neurocognitive Indices of Long COVID: Dysregulated Engagement of Inhibitory Control and Oscillatory Slowing www.mdpi.com/2673-4087/7/... Screenshot from latest Science for ME weekly update #LongCovid #NeuroPASC #COVIDBrain #PASC #PwLC #postcovid #postcovid19 1115
Reposted by Tom KindlonBateman Horne Center @batemanhornecenter.bsky.social · 06/10/2026Being upright can trigger dizziness, brain fog, and other symptoms for people with orthostatic intolerance (OI). POTS is one form of OI. BHC’s Clayton Powers, DPT, explains more: youtu.be/Gh4vpKsLbr8 Consult your care team before changing your management plan. 1132
Reposted by Tom KindlonBateman Horne Center @batemanhornecenter.bsky.social · 07/10/2026Following September’s “Coffee” with a Clinician on assessing OI and dysautonomia, we’re revisiting an important distinction: POTS is one type of dysautonomia, but orthostatic intolerance is broader than POTS. Learn why a “normal” test may not tell the whole story: bit.ly/4egSlcU 0207
Reposted by Tom KindlonBateman Horne Center @batemanhornecenter.bsky.social · 08/10/2026Timothy’s Shared Wisdom from our October 6 support group explores unpredictability, mindful attention, small choices and the strength it takes to face ongoing illness. Full recaps are emailed at the end of the month. Sign up: bit.ly/3POhK4d 082
Reposted by Tom KindlonMark Faghy @profmarkfaghy.bsky.social · 08/10/2026We're looking for a Research Associate in Human Physiology, Immunology, and Long COVID to join our research team at Loughborough University: lnkd.in/e3uBjs9z Please share widely!lnkd.inLinkedInThis link will take you to a page that’s not on LinkedIn 0911
Reposted by Tom Kindlonemily fraser 🌿🐌✨ @emilyesfraser.bsky.social · 08/10/2026Run a fraudulent trial to promote harmful snake oil over valid treatments for a disabling disease. Accuse patients who question you of harassment to avoid handing over the raw data that will expose you. Get the media to cover the story as “patients are harassing scientists!” #GreatestMEdicalScandal 13112
Reposted by Tom KindlonSolve M.E. @solveme.bsky.social · 05/10/2026📣Big news from Solve’s research team re: an upcoming funding opportunity for researchers studying #MECFS, #LongCovid, and associated conditions! Stay tuned for more info on October 6 & click the link to learn more about our Ramsay Research Grant Program. ow.ly/WnOh50ZUEte 085