@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 mecfs
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🧵
New research from Germany, Spain & the Netherlands

Autoantibodies to selenoprotein P in suggest selenium transport impairment and acquired resistance to thyroid hormone

Free fulltext:
https://www.sciencedirect.com/science/article/pii/S2213231723001970

@mecfs

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tomkindlon,
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2/

In the image is the full abstract for:

Autoantibodies to selenoprotein P in suggest selenium transport impairment and acquired resistance to thyroid hormone

https://www.sciencedirect.com/science/article/pii/S2213231723001970

@mecfs

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ME Research UK e-newsletter - June 2023 (29 June 2023)

https://www.meresearch.org.uk/e-newsletter-june-2023/

@mecfs

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From the Open Medicine Foundation:

We're proud to share one of Open Medicine Foundation's (OMF) pioneering patient-centric projects, "Characterizing Non-Restorative Sleep in Post-Viral Disease to Advance Intervention Innovations," focusing on sleep disturbances in & . 👉

https://www.omf.ngo/mecfs-sleep-disturbance-study

@mecfs @longcovid

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🧵
"Dr Nina Muirhead: ME Patient & Advocate in the UK"

I've heard Dr Muirhead say a lot of similar things before but still useful to have a doctor, particularly a consultant, saying them

From April 2023 but pretty timeless

@mecfs

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tomkindlon,
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2/

Extract:
Dr Muirhead:
"I developed ME after a bad bout of EBV (also known as mono or glandular fever) in September 2016 from which I did not recover. I thought I would get better & continued to work & exercise eventually becoming severely affected by summer 2017.​
​
"I did not recognise that I had ME because I had not been taught about it at medical school, my symptoms were multisystem and debilitating.​"
​
@mecfs

tomkindlon,
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3/

"Prior to having ME I did not believe in it as a real physical condition & was shocked as to how misinformed the medical profession are & how widely the disease is misdiagnosed, under recognised & underestimated by healthcare providers.​"

@mecfs

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ME Association

ME/CFS Research Published 20 – 26 June 2023

It’s been another incredibly busy week for research, with 10 new ME/ studies & 20 new studies.

Paper 10 is on circulating microRNAs (miRNAs) expression in ME/CFS, these are short non-coding RNA sequences which are involved in the regulation of gene expression helping cells to control the type & amounts of proteins they make.

https://meassociation.org.uk/rryj

@MECFS

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New:

Pre-pandemic activity on a / support forum is highly associated with later activity on a support forum for a variety of reasons: a mixed methods study.

https://medrxiv.org/content/10.1101/2023.06.30.23292087v1

@mecfs @longcovid

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Invest in ME Research @invest_in_me_research conference – highlights part 2 by ME Research UK

https://www.meresearch.org.uk/invest-in-me-conference-highlights-part-2/

@mecfs

tomkindlon, to pots
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New from New Zealand:
“High incidence of autonomic dysfunction & in patients with : Implications for management and healthcare planning”

https://www.amjmed.com/article/S0002-9343%2823%2900402-3/fulltext

“Study presents a detailed prospective evaluation of autonomic symptoms, function & [health-related quality of life] in those with with comparison to those with & healthy controls”
@longcovid @pots

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🧵
New from US:

Symptoms and signs of dry eye in US veterans with Myalgic encephalomyelitis/chronic fatigue syndrome

"Individuals who met criteria for ME/ had more severe ocular surface pain, but similar signs of DE [dry eye], compared to controls. This suggests nerve, & not tear, abnormalities contribute to ocular surface pain in "

https://iovs.arvojournals.org/article.aspx?articleid=2790532

1/

tomkindlon,
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2/
Table 1.

Dry eye (DE) questionnaire scores in the ME/ & control groups

OSDI Ocular Surface Disease Index
DEQ-5 Dry Eye Questionnaire 5
NRS Numerical Rating Scale
NPSI-E Neuropathic Pain Symptom Inventory modified for the Eye

@MEcfs

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🧵
New US research:
Cognitive impairment in post-acute sequelae of COVID-19 & short duration patients is mediated by orthostatic hemodynamic changes

Free fulltext https://frontiersin.org/articles/10.3389/fnins.2023.1203514/full

@mecfs @longcovid

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tomkindlon,
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2/

"Compared to healthy controls, the disease cohorts had significantly lower cognitive efficiency scores immediately following the orthostatic challenge"

See this figure

One would expect some "training effects" i.e. improvement from repeating tests, as seen in controls


@mecfs @longcovid

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From: Decode ME Study

Some participants may be recontacted over the next week, as we are now inviting more to donate DNA – read more about this update in our blog post here:

https://rb.gy/y2anp

There is still time to sign up to : https://rb.gy/o10l2

@mecfs

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New from NCNED (Australia):
"Altered TRPM7-Dependent Calcium Influx in Natural Killer Cells of / Patients"

Free fulltext:
https://www.mdpi.com/2218-273X/13/7/1039

@mecfs

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New from Latvia:
"Circulating miRNAs Expression in / "

https://www.mdpi.com/1422-0067/24/13/10582

"6 out of the 8 selected miRNAs were differently expressed" in vs controls

"MiRNA levels directly correlated with disease severity"

@MEcfs

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"Causal Effects between Gut Microbiome and / : A Two-Sample Mendelian Randomization Study"

Abstract:
https://www.frontiersin.org/articles/10.3389/fmicb.2023.1190894/abstract

Paraprevotella & Ruminococca-ceae_UCG_014 were positively associated with ME/CFS risk

@mecfs

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New:
Comparison of serum acylcarnitine levels in patients with myalgic encephalomyelitis/chronic fatigue syndrome and healthy controls: a systematic review and meta-analysis

Free fulltext:

https://translational-medicine.biomedcentral.com/articles/10.1186/s12967-023-04226-z

"The patient group had significantly lower serum acylcarnitine levels when compared with the control group"

@mecfs

1/

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New:
Posttreatment Lyme disease syndrome and
/ : A systematic review and comparison of pathogenesis

"This study adds to the expanding literature on the post-active phase of infection syndromes, which suggests that chronic illnesses such as & ME/ have similar pathogenesis despite different infectious origins"

Free fulltext:
https://onlinelibrary.wiley.com/doi/full/10.1002/cdt3.74

@lyme @mecfs

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New from Sweden:

"We conclude that COVID-19 triggered reactivation of dormant HAdV* in the oral mucosa of chronic fatigue patients indicating an exhausted dysfunctional antiviral immune response in ME/CFS, allowing reactivation of adenovirus upon stress encounter such as COVID-19"

Full text not available yet
https://www.frontiersin.org/articles/10.3389/fmed.2023.1208181/abstract

@mecfs
@longcovid

*human adenovirus

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New from Australia

What lies beneath: White matter microstructure in pediatric / using diffusion MRI

Free fulltext:
https://onlinelibrary.wiley.com/doi/10.1002/jnr.25223

@mecfs

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The NHS must provide mandatory training on ME/CFS – @MECFSMedEd
submission to the APPG

http://surl.li/ieovd

“The doctors involved are not bad people, they simply don’t know anything about ME/CFS, and they assume (reasonably enough, one would think) that if ME/CFS were really serious, someone would have told them about it. So they fail to understand that the patients they see are in fact severely ill”

@mecfs

tomkindlon,
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@vegos_f06 @MECFSMedEd Press the go to link button in green at bottom

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