@tomkindlon@disabled.social
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tomkindlon

@tomkindlon@disabled.social

95% of posts on #MyalgicEncephalomyelitis, #LongCovid or #chronicillness.

With ME/CFS 35 years, severely affected 29 years. Health has deteriorated post Covid (March 2022).

Irish ME/CFS Association* trustee 26 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 *IrishMECFSAssociation@mastodon.ie

This profile is from a federated server and may be incomplete. Browse more on the original instance.

tomkindlon, to disabled
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On , please remember that not all disabilities are visible.

@chronicillness
@spoonies
@disability


@mecfs
@longcovid

tomkindlon, to mecfs
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Shared with permission

@mecfs

tomkindlon, to mecfs
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🧵
"ME/CFS Isn't Just Misunderstood, It's Actively Neglected"

https://www.popsugar.com/fitness/mecfs-post-covid-49344168

'Beth Pardo is among the people who developed ME/CFS after contracting COVID.' 'Pardo went from running ultramarathons to being unable to leave her bed'

@mecfs

@longcovid

tomkindlon,
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4/

"The very term "chronic fatigue" undermines the severity of the illness, painting an inaccurate picture of cumbersome burnout, as opposed to the debilitating reality, which leaves many bed-ridden or requiring a wheelchair."

@mecfs

tomkindlon, to mecfs
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Recording of sympathetic 5-minute clip from Channel 4 news tonight (a national UK station)

https://youtu.be/3bPNjc4dRRs?si=n37MHuwE4nRXsW-n

Thanks to Jo Bruce & the team including Chris Ponting

@mecfs

tomkindlon, (edited ) to mecfs
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Sadly Michael VanElzakker posted this on Oct 22 after a similar Covid study came out:

"I've been recruiting for this same study in ME patients since before the pandemic, but people are not volunteering."

Please highlight widely 🙏

@mecfs

tomkindlon, to journalism
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David Tuller DrPH Interview with journalist Ed Yong

"Last month, Yong wrote an opinion piece for The New York Times in which he discussed what he learned as a from covering . He & I spoke earlier today about the Times piece, how he came to grasp the seriousness of long , & related stuff." 35 minutes.

https://youtu.be/Mdr4B32lfhc?si=cfiPGdnhC7AYL1DM

@longcovid

tomkindlon, to mecfs
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Extract from:

"Steps doctors and other medical professionals can take today to improve medical care for people with " by Naomi Harvey PhD

Read full e-letter here:
https://www.bmj.com/content/383/bmj.p2372/rr


@mecfs

tomkindlon, to covid19
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SARS-CoV-2–Specific Immune Responses in Patients With Postviral Syndrome After Suspected -19

Free:
https://shorturl.at/vHKM0

“Our data suggest that millions of Americans presenting with PVS resembling NeuroPASC were indeed exposed to at the beginning of the pandemic, and they deserve the same access to care and inclusion in research studies as patients with NP with confirmed diagnosis”

@covid @covid19 @longcovid

tomkindlon, to mecfs
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Sharing with permission, a message by Dr. Hwang (via @dakota_150 )

Dr Hwang was lead author of WASF3 disrupts mitochondrial respiration and may mediate exercise intolerance in myalgic encephalomyelitis/chronic fatigue syndrome

https://www.s4me.info/threads/wasf3-disrupts-mitochondrial-respiration-and-may-mediate-exercise-intolerance-in-myalgic-encephalomyelitis-chronic-fatigue-syndrome-2023-hwang-et-al.34776/page-11#post-495760

@mecfs

tomkindlon, to mecfs
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I have seen quite a lot of praise for this including most recently by a parent of two young adults with ME: The Long COVID Survival Guide
https://theexperimentpublishing.com/catalogs/fall-2022/long-covid-survival-guide/

@longcovid
@mecfs

tomkindlon, to Utah
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treatment trial recruiting in

A Randomized Double Blind Placebo Control Trial to Determine the Effects of Oxaloacetate on Improving Fatigue in Long COVID

Compensation: "Eligible participants will be compensated $50 for each in-person visit. At the end of the study, participants will be provided with a 45-day trial of oxaloacetate if they are interested"

https://batemanhornecenter.org/research/
@longcovid

tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

Now I've had 35 years (since age 16), 29 years with 🙁

We need more public & private* research money to speed up progress

Here's my story in Irish Independent

https://m.independent.ie/life/health-wellbeing/health-features/no-one-chooses-to-have-me-everything-changed-when-i-became-ill/34153140.html

*List of research funds

https://phoenixrising.me/myalgic-encephalomyelitis-chronic-fatigue-syndrome-mecfs-resources/research-charities/

@mecfs

tomkindlon, to mecfs
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ME/CFS, Long COVID and School

https://www.emerge.org.au/your-child-or-young-person-with-me-cfs-and-school/

I haven't read this myself so far.

@mecfs @longcovid

tomkindlon, to mecfs
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Full text published today:

Longitudinal cytokine and multi-modal health data of an extremely severe ME/CFS patient with HSD reveals insights into immunopathology, and disease severity

Free:
https://www.frontiersin.org/journals/immunology/articles/10.3389/fimmu.2024.1369295/full

Funded by the Open Medicine Foundation

@mecfs

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

1/

tomkindlon, to mecfs
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New:
An Unwanted but Long-Known Company: Post-Viral Symptoms in the Context of Past Pandemics in Switzerland (and Beyond)

Free full text:
https://www.ssph-journal.org/articles/10.3389/phrs.2024.1606966/full

@mecfs

@longcovid

tomkindlon, to longcovid
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Persistent immune and clotting dysfunction detected in saliva and blood plasma after COVID-19

Free fulltext:
https://www.cell.com/heliyon/fulltext/S2405-8440(23)05166-6

  • Significant IgA levels were detected in saliva, and IgG levels in plasma in COVID-19 cases, confirming convalescence.

  • Abnormal inflammatory and clotting responses were identified in both saliva and plasma fluids after SARS-CoV-2 infection.

@longcovid @covid19

1/

tomkindlon, to mecfs
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"Pseudoscience exacerbates the burden of disease: Victims of ME deserve better than dopey Dragons and ear seeds" by Charlotte Blease

https://thecritic.co.uk/pseudoscience-exacerbates-the-burden-of-disease/

@mecfs

tomkindlon, to mecfs
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Pleased to be able to support David Tuller DrPH to help him continue his important work on ME, , &
" "

He has particularly focused on (bio)psychosocial
claims/researchers:we've learned they need to be watched closely
https://crowdfund.berkeley.edu/project/42302

@mecfs @longcovid

tomkindlon, to mecfs
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New from UK team:

A systematic review of quantitative EEG findings in , and

Free full text:
https://www.sciencedirect.com/science/article/pii/S1388245724001445

@longcovid @mecfs

@fibromyalgia

tomkindlon, to mecfs
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An interview by David Tuller DrPH with patient advocate Anil van der Zee about his video (embedded at link) titled "The Prison of M.E." on living with severe ME made for the ME Awareness Day.

https://virology.ws/2024/05/14/trial-by-error-anil-van-der-zees-new-video-on-living-with-severe-me/

@severeme @mecfs

tomkindlon, to mecfs
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🧵
Has ME/CFS's Time Finally Come at the NIH? The Vicky Whittemore Interview

A 1-hour conversation between Cort Johnson & Vicky Whittemore from NIH who is "involved in virtually everything of consequence happening with at the NIH"

https://www.healthrising.org/blog/2024/05/13/nih-chronic-fatigue-syndrome-whittemore/
@mecfs


1/

tomkindlon,
@tomkindlon@disabled.social avatar

2/

Cort Johnson has also done a write-up of the interview in which he summarises:
“While ME/CFS’s time at the NIH has clearly not finally come, the news for ME/CFS in general is encouraging. Interest in it and post-viral diseases is up significantly. Vicky feels the field has grown enormously since 2015, and I agree. By bringing together consortiums and think tanks together, Vicky Whittemore is doing what she can with what she has.”
@mecfs

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🧵
New
Why the Psychosomatic View on / Is Inconsistent with Current Evidence and Harmful to Patients

Free full text:
https://www.mdpi.com/1648-9144/60/1/83

@mecfs

1/

tomkindlon,
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4/
"Many studies indicate that in the majority of ME/CFS cases, the disease begins with a viral infection, such as glandular fever, influenza (flu), or COVID-19. Therefore, infectious diseases are considered proven disease triggers of ME/CFS [12,42]."


@mecfs

tomkindlon,
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5/

"Lack of knowledge among medical professionals about the etiology, diagnostics, and treatment of ME/CFS [43,44] and the misclassification of ME/CFS as a psychosomatic illness often accompanied by the denial of the existence of ME/CFS as a clinical entity still prevents the disease from being diagnosed and adequately treated [45]."

@mecfs

tomkindlon, to mecfs
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New from Canada

Metabolomic and immune alterations in patients with

https://www.frontiersin.org/articles/10.3389/fimmu.2024.1341843/full

" patients exhibit persistent metabolomic abnormalities 12 months [later]"

"sarcosine & serine supplementations might have potential therapeutic implications"

@longcovid

@mecfs

tomkindlon,
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2/

Press release for this Canadian study Metabolomic and immune alterations in [ patients with ]:

https://www.ualberta.ca/folio/2024/02/sickest-long-covid-patients-face-symptoms-nearly-identical-to-chronic-fatigue-syndrome.html

@longcovid @mecfs

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