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Tom Kindlon
@TomKindlon
95% of tweets on #MyalgicE or #chronicillness. With ME 33 years, housebound 28 yrs. trustee 25 yrs. 26 publications in peer-reviewed journals
MEpedia entry w/ socials linksme-pedia.org/wiki/Tom_Kindl…Joined May 2007

Tom Kindlon’s Tweets

Being sick in The US is not only a "Full-Time Job," but requires a full time income to pay for it. Those who can least afford high deductibles & out of pocket costs are faced with financial stressors that often adversely impact health. #NEISvoid #LongCovid #Dysautonomia #CRPS
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"'Being Sick Is a Full-Time Job': A Job Analysis of Managing a Chronic Illness" (2021) onlinelibrary.wiley.com/doi/abs/10.111 "The purpose of this study was to identify the duties, tasks, knowledge, skills, abilities, & resources needed for patients to manage #chronicillness" #chronicallyill
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A writer with ME & Fibromyalgia has written, HellSans, a new science fiction novel (haven't read it myself). Some links amazon.com/HellSans-Ever- amazon.co.uk/HellSans-Ever- publishersweekly.com/9781915202215 Don't forget to use AmazonSmile & support charities if buying with Amazon #PwME #MEcfs
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If you want an explanation for “A lot of vomit” check out my piece for John Scalzi’s The Big Idea, which explores the origins of HellSans: whatever.scalzi.com/2022/10/14/the #HellSans #CripLit #JohnScalzi #blog #TheBigIdea #Allergy #Allergies
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"More recently, patient activism, combined with new data on the underlying biology of the illness, has resulted in changes in treatment guidelines and a renewed focus on ME as a biologically grounded post-viral disease." #MECFS #LongCovid #DecodeME
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Really thorough article from @PatrickFreyne1 in @IrishTimes, with valuable historical account of the medical misogyny towards #MECFS from @b_m_hughes. Plus the text-to-speech button on the page is helpful for #brainfog as well as visual impairments 👍 irishtimes.com/health/your-we
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This online discussion starts in 30 minutes wherever you are in the world. "Together we will discuss the successes of early AIDS activism, especially through the ACT UP movement (the AIDS Coalition to Unleash Power)..." 1/
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I'm on a panel today at Cambridge--about patient advocacy and activism. Here are the details: cser.ac.uk/events/hidden-
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Helping to recruit 25,000 people to the world's largest #MyalgicEncephalomyelitis DNA study. Thank you @NowYouSeeM_E for this great film! If you haven't already, please take part: decodeme.org.uk/portal/ You can also support by helping us by spreading the word!
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If you have M.E, also known as Chronic Fatigue Syndrome, please sign up to this DNA study! @DecodeMEstudy, a new DNA study, has been launched in attempt to understand this debilitating illness once and for all. Also behind this is @actionforme, @EdinburghUni & @CGATist.
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Medscape: "#LongCOVID Experts: 'So Incredibly Clear What's at Stake'" medscape.com/viewarticle/98 "When [woman with #MEcfs after Covid] has ME/CFS-related crashes, known as post-exertional malaise, after even minor physical or mental exertion, she says she becomes 'a dummy'" #CFS
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I’ve been doing this for decades, that pain never ever goes away you just get really good at masking it from everyone. #MEAwarenessHour #tellmenottogiveup #pwme #LongCovid
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“The early months were particularly difficult. ‘Every time I would see a runner on the side of the road,I felt like I had been kicked in the stomach because I miss it so much’”-woman with #MEcfs after Covid I’ve had similar experiences watching the sports I used to play pre #CFS twitter.com/lunalouieloon/…
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“The early months were particularly difficult. ‘Every time I would see a runner on the side of the road,I felt like I had been kicked in the stomach because I miss it so much’”-woman with #MEcfs after Covid I’ve had similar experiences watching the sports I used to play pre #CFS
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MECFS + Long Covid patients: undercounted, neglected medically, socially and financially. • “When faced with a new complex disease and a lot of unknowns, [medical professionals’] default is to psychologize it, gaslight it, attribute it to something else.” theguardian.com/society/2022/o
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“When I got diagnosed – that’s when support came, that’s when acceptance came. That’s when I tried to make my life better, when I forgave myself for not fixing my neurological disease with my attitude” - Diagnosis (after 5 years) really helped me too #MEcfs #PwME
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"One of Italy’s best-known #Covid #experts had, in other words, failed to give credence to the experiences of #LongCovid patients until he himself became one." #SARSCoV2 #mass #disabling theguardian.com/society/2022/o
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Press release (October 11): “Cartoonist Tessa Brunton’s New YA Graphic Memoir Notes from a Sickbed Portrays Chronic Illness with Honesty and Humor” globenewswire.com/news-release/2 #chronicillness #spoonie
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An excerpt from the new book! Trying to keep plans with an unpredictable chronic illness 🫠
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Four black and white comic panels showing a woman in bed or on the couch having to cancel plans over and over, and apologizing.
Four black and white comic panels showing a woman in bed or on the couch. She talks to a friend on the phone who asks if she would just prefer not to be invited to events. In the last two panels she types on her laptop - she is canceling another hang out and she looks angry as she types. She slams the laptop closed.
A black and white panel of the woman on the couch, her laptop now closed, saying "GOD! What fucking calendar are you on? What is the fucking timetable upon which you mysteriously fucking operate!"
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“We believe this [contact with us] could fast track support for people with ME/#CFS and also those with #LongCovid, ensuring learnings from #MECFS are taken advantage of, and that progress for people with Long Covid doesn't leave those with ME/CFS behind” #postviralillness #PwME
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The World ME Alliance has today written to @DrTedros of the @WHO congratulating his recent stance on #LongCovid, but calling on him to recognize the links with #MyalgicE, the ongoing devastation this disease causes and meet with us to #LearnFromME. europeanmecoalition.com/world-me-allia
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Because of recording glitches, there was no video of yesterday's talk at Cambridge. So...we're doing Tuller 2.0 this afternoon at 2pm (UK time). Same talk! Same me! So if you didn't attend yesterday, here's another chance...
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@davidtuller1 will be repeating yesterday's talk "Medically Unexplained Symptoms and Epidemiological Sleight of Hand" today at 2pm. eventbrite.com/e/medically-un @Eventbrite
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Interview with Dr. Natalie Eaton-Fitch [of NCNED in Australia]: Repurposed Drugs and the treatment of ME #MyalgicEncephalomyelitis #LDN #MEcfs #CFS
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🗣️ "The use of repurposed Low-Dose Naltrexone (LDN) started in the later 1980s after the positive effects of LDN were reported. LDN has multiple biological functions, including the release of endorphins and immunomodulation." 💊 -Dr. Natalie Eaton-Fitch forums.phoenixrising.me/threads/interv
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The #PACEtrial’s “findings became the global standard of care.Yet other scientists questioned its validity & demanded the journal release the study’s raw data. It took a court to make that happen, & in 2018 a new analysis revealed that exercise & therapy were not at all the cure”
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#MEAction’s press team has corresponded with the SF Chronicle reporter for months on the backstory for this piece. We've had so many discussions on the abysmal state of ME clinical care, research and what we need going forward. We're thrilled see it live! bit.ly/3EZRPPc
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“The title of his [Dafoe’s] series [of photos of himself, which won a prize] speaks to the urgency he and many others are trying to convey. Dafoe calls his startling, singular images “ The Living Death.” #MyalgicEncephalomyelitis #MEcfs #CFS #SevereMEcfs
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SF Chronicle Article About ME/CFS! Yesterday the SF Chronicle published a major article about ME/CFS and long COVID featuring me and my family. It is titled "A long-hidden disease is pulled from the shadows by its cousin, long COVID" sfchronicle.com/health/article
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“Dafoe revealed extraordinary details of living with #severeME in [a scientific journal].’I haven’t been able to tolerate the sound of another person’s voice without being sedated in 7 years,’he wrote.’All humanity has been taken from me by #MECFS.I live only to continue living’”
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SF Chronicle Article About ME/CFS! Yesterday the SF Chronicle published a major article about ME/CFS and long COVID featuring me and my family. It is titled "A long-hidden disease is pulled from the shadows by its cousin, long COVID" sfchronicle.com/health/article
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#LongCovid has been a #gamechanger to #MECFS. “frontline healthcare workers, people who know a lot…have lingering symptoms that are so similar to #ME…and these doctors are not fooled by traditional medical folklore that psychotherapy will do the trick.”
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I really appreciate this each time! I'm really sorry the crowdfunding does not take PayPal but requires a card--I can't do anything about this. That's not much of an issue in US but I know it is in Europe. Most Berkeley campaigns aren't getting funds from Europe--just mine.
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Doneren aan @davidtuller1 ? Dit kan weer via onze bankrekening. Wij dragen het dan weer af. IBAN: NL85 INGB 0004 2869 57 t.n.v. ME/cvs Vereniging te Zuurdijk o.v.v. gift David Tuller Dat kan tot en met 29 oktober. Waarom doneren? me-gids.net/nieuwsartikel/ #ME #MEcvs #PwME
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“Potential mechanisms for exertional intolerance other than deconditioning include altered autonomic function (eg, chronotropic incompetence, dysfunctional breathing), endothelial dysfunction, and muscular or mitochondrial pathology” #LongCovid #PostCovid #Postviralillness
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"The findings ... suggest that exercise capacity was reduced more than 3 months after SARS-CoV-2 infection among individuals with symptoms consistent with LC [#LongCovid] compared with individuals without LC symptoms, with low confidence." jamanetwork.com/journals/jaman
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“We propose a simple solution which explicitly removes the perception of optionality in meeting basic standards in the care and service of ME/#CFS patients. It takes the form of official guidance called ‘Rights and Obligations in ME/CFS’” #MEcfs #PwME #MyalgicEncephalomyelitis
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Rights and Obligations in ME/CFS: Overcoming normalised disregard for standards doctorswith.me/rights-and-obl
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