Tom Kindlon

95% of posts on #MyalgicEncephalomyelitis, #LongCovid or #chronicillness. With ME/CFS 37 years, severely affected 31 years. Health has deteriorated post Covid (March 2022).  Irish ME/CFS Association* trustee 29 years.  26 publications in peer-reviewed journals.  MEpedia entry which has links to my social media accounts (among other things): https://me-pedia.org/wiki/Tom_Kindlon   #ChronicFatigueSyndrome #MECFS #PwME #fedi22 *[email protected]

Facebook page: https://www.facebook.com/TomKindlonMECFS/
Twitter: https://twitter.com/TomKindlon
Instagram: https://www.instagram.com/tomkindlon/
Bluesky: https://bsky.app/profile/tomkindlon.bsky.social

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Published at

2026-07-22T19:15:23+02:00

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Last Notes

2026-06-06 00:19:28 CEST

From the US
"These findings challenge the hypothesis that preexisting mental health conditions are responsible for long‐COVID"
https://onlinelibrary.wiley.com/doi/10.1002/jmv.70970
Screenshot from Science for ME weekly update
Hashtags:
@npub17l9…q7gy
#LongCovid #PASC #PwLC #postcovid #postcovid19 #PostCovidSyndrome #LC #Covidlonghaulers #longhaulers #COVIDBrain #NeuroPASC
#Coronavirus
#COVID19 #COVID #COVID_19 #COVIDー19 #SARSCoV2 #auscovid19 #CovidIsNotOver
https://assets.disabled.social/media_attachments/files/116/699/813/339/055/706/original/e446f57adc3edd09.png

2026-05-26 13:13:04 CEST

Health is Political by Brittani James
“Long COVID Changed Everything”
https://www.blog.brittanijamesmd.com/p/long-covid-changed-everything
Description from Science for ME @npub1d6z…kwup update:
Good blog post by Family Medicine physician Dr. Brittani James on what illnesses such as #LongCovid & ME reveal about medicine's limits.
#pwme #mecfs @npub1m6m…xked @npub17l9…q7gy

2026-05-15 16:35:54 CEST

Thanks to my mum for getting everything ready for our family
#TeaPartyForME2026 on #BlueSunday2026 (on Sunday).
We’re doing it in aid of the Irish ME/CFS Association @npub1r7f…mvq8
https://www.idonate.ie/fundraiser/BlueSunday2026fortheIrishMECFSAssociation
but other worthy charities are available (see:
https://the-slow-lane.com/donation-pages )
#MEcfs #CFS #PwME #BlueSunday @npub1m6m…xked
https://assets.disabled.social/media_attachments/files/116/579/086/609/568/079/original/12b7311d01a074a3.png

2025-11-11 02:42:12 CET

From Germany:
Transcriptome analysis of classical blood cells reveals down-regulation of proinflammatory genes in the classical monocytes of Long-COVID patients
https://www.frontiersin.org/journals/immunology/articles/10.3389/fimmu.2025.1710783/abstract
Screenshot from latest Science for ME weekly update
@npub17l9…q7gy
#LongCovid #PASC #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #COVIDBrain #NeuroPASC
#Coronavirus
#COVID19 #COVID #COVID_19 #COVIDー19 #SARSCoV2 #auscovid19 #CovidIsNotOver
https://assets.disabled.social/media_attachments/files/115/528/514/543/791/536/original/d5b8430856601c41.png

2025-04-15 03:42:32 CEST

From Germany:
Abnormal Coronary Vascular Response in Patients with #LongCOVID Syndrome – a Case-Control Study Using Oxygenation-Sensitive Cardiovascular Magnetic Resonance
https://www.sciencedirect.com/science/article/pii/S1097664725000523
Image is from latest Science for ME weekly update
Hashtags:
@npub10ng…m7ge
#PASC #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #COVIDBrain #NeuroPASC
@npub1ezt…4taf #Coronavirus
#COVID19 #COVID #COVID_19 #COVIDー19 #SARSCoV2 #CovidIsNotOver
@npub15gr…ztdn #auscovid19
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2025-04-14 16:53:16 CEST

From ME Research UK:
Second place in ME Research UK's Founders' Science Writing Award went to Krista Clarke, who is a postdoctoral research fellow at the University of Surrey. Here is Krista's entry on the development of quantitative diagnostic biomarkers for ME/CFS: https://tinyurl.com/38455t5u
#MEcfs @npub1gxp…cjhq
https://assets.disabled.social/media_attachments/files/114/336/873/848/806/611/original/70ebb80ec19f0852.png

2025-04-13 02:23:40 CEST

"Exercise Actually Makes Chronic Fatigue Syndrome Worse"
https://www.youtube.com/watch?v=wxSwYUennBA
Image is from April 2025 AMMES Newsletter
@npub1gxp…cjhq
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
https://assets.disabled.social/media_attachments/files/114/327/797/867/979/887/original/58411d654c1bf9b3.png

2025-03-08 23:58:28 CET

- reply

3/
“Many [with ME/CFS] experience medical gaslighting, misdiagnoses, and treatments that fail to account for the disease’s hallmark symptom: post-exertional malaise (PEM)—where even minor exertion can lead to debilitating symptoms and functional decline.”
#MECFS
@npub1gxp…cjhq

2025-03-08 19:38:00 CET

🧵
"Far From Rare: A Common Disease Hidden in Plain Sight: Why ME/CFS Needs to be Recognized Now"
https://batemanhornecenter.org/a-common-disease-hidden-in-plain-sight/
Comment: While there is possibly nothing new here for many of us, I think it does summarise a lot of the important issues in the field
@npub1gxp…cjhq
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
1/
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2025-02-18 01:07:28 CET

"Most participants grieved for lost hobbies, abilities and opportunities and most participants spoke about inconsistent, fluctuating educational support for their ME/CFS needs"
https://research.manchester.ac.uk/en/studentTheses/what-is-the-psychological-and-educational-impact-of-being-an-emer
Screenshot from latest Science for ME weekly update
@npub1gxp…cjhq
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
https://assets.disabled.social/media_attachments/files/114/021/967/696/220/703/original/d68272333c07d9e8.png

2025-02-14 19:12:01 CET

🧵
Unusual but sympathetic paper:
Language Matters: What Not to Say to Patients with Long COVID, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, and Other Complex Chronic Disorders
https://www.mdpi.com/1660-4601/22/2/275
@npub1gxp…cjhq
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @npub10ng…m7ge
#LongCovid #PASC #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #COVIDBrain #NeuroPASC
1/
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2024-10-23 20:46:21 CEST

- reply

5/
Simon McGrath, a close friend of mine who has lived with ME and written about it for 20 years, tells me
I never know how much it is safe for me to do. It’s like I’m surrounded by an electric fence that will trigger a bad day if I touch it. But the fence is invisible, and moves every day.
@npub1gxp…cjhq #MEcfs #PwME

2024-10-23 19:06:19 CEST

- reply

4/
“A brief conversation with a friend, or washing their hair, or a sudden movement causes their symptoms to flare. This intensifies a fatigue that sleep cannot alleviate, and heightens their muscle or joint pain, headaches, or sensitivities to food, light or sound.”
#MEcfs #PwME
@npub1gxp…cjhq

2024-10-23 17:54:21 CEST

- reply

3/
“some lie still in their darkened rooms, masks on to protect them from their light sensitivity, keeping within their limited energy level, unable to tolerate sound, food and touch – lives spent in the shadows, barely lived.”
#MEcfs #CFS #PwME
@npub1gxp…cjhq

2024-10-23 17:26:25 CEST

- reply

2/
“Worse, when we don’t ignore them, we blame them, telling them that they are all free to rise from their beds and wheelchairs, to walk away from the city. Doctors tell them they can free themselves of the disease by changing their belief systems. Make the effort, they say, and you will regain your health and previous lives.”
@npub1gxp…cjhq #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

2024-10-13 18:47:42 CEST

- reply

5/
[Person with ME] “‘says many people are stuck in the past, believing that the condition is purely psychological.
‘It's the stigma that we're all lazy and we just need to exercise ourselves back to wellness that has stopped us getting the help we need’"
#PwME #MEcfs
@npub1gxp…cjhq

2024-10-13 18:28:13 CEST

- reply

4/
“During the inquest into Maeve's death, the coroner Deborah Archer said it became clear to her that there were no specialist hospital or hospices, beds, wards or other health care provision in England for patients with severe ME”
#SevereME #SevereCFS #SevereMECFS
@npub1gxp…cjhq #mecfs

2024-10-13 17:34:48 CEST

- reply

3/
“People with severe ME can be in constant pain, have hypersensitivity to touch and light, feel extremely weak and sometimes have difficulty speaking or swallowing. There are many different symptoms which cause significant disruption to everyday life”
#SevereME #PwME
@npub1gxp…cjhq #mecfs

2024-10-13 17:05:54 CEST

🧵
Sympathetic BBC article on severe ME:
'I'm too tired to chew food but still can't get care for my ME'
https://www.bbc.com/news/articles/cn03pxk1g4xo
#SevereME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @npub1gxp…cjhq
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2024-09-19 13:25:46 CEST

New US research:
Impact of COVID-19 on #MyalgicEncephalomyelitis / #ChronicFatigueSyndrome-like illness prevalence: A cross-sectional survey
https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0309810
#MEcfs #CFS #PwME @npub10ng…m7ge
#LongCovid #PwLC #postcovid @npub1gxp…cjhq
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