currentbias, to random
@currentbias@open-source-eschaton.net avatar

"Some people also experience damage to multiple organs including the heart, lungs, kidneys, skin, and brain."

The US Department of Health and Human Services in 2021 regarding PASC/long covid's ADA eligibility:

https://www.hhs.gov/civil-rights/for-providers/civil-rights-covid19/guidance-long-covid-disability/index.html

justyourluck, to random
@justyourluck@masto.ai avatar

I've been thinking I may stop using the term altogether and using exclusively.

robotistry,

@beadsland @justyourluck

is the American acronym - other health organizations in other countries use different acronyms.

Every acronym is associated with different criteria - different lengths of time, different combinations of symptoms, different criteria for new-onset symptoms.

unifies the patient experience under one name, so we literally have a common name as well as a technical term.

tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

Mitochondrial Dysfunction and Coenzyme Q10 Supplementation in Post-Viral Fatigue Syndrome: An Overview

Free fulltext:
https://www.mdpi.com/1422-0067/25/1/574

Note: The lead author "is medical adviser to Pharma Nord (UK) Ltd"

@mecfs
@longcovid

@fibromyalgia

1/

tomkindlon, to mecfs
@tomkindlon@disabled.social avatar
BlackAzizAnansi, to random
@BlackAzizAnansi@mas.to avatar

So I see everyone who was "over covid" is suddenly sick over the holidays.

Lorrrraaaaine,

@BlackAzizAnansi
best I can suss these people think the following:
-it feels like a cold, must be a cold
-the more I expose myself sans NPIs the more immunity will build & eventually there will be zero symptoms
-everybody, including people older & more vulnerable than me seem fine, so it must be fine
-I’m vaccinated so that’s why it’s not severe & it will protect me from this so-called #longCovid
-I’m healthier than those that get #PASC
-I’m special
🙄
#christmas2023 #misanthrope🎄🎄☃️😷😷

DenisCOVIDinfoguy, to auscovid19
@DenisCOVIDinfoguy@aus.social avatar

A Bad Blood Vessel – Neuroinflammation Connection Shows Up in Long COVID.

“To our knowledge, ours is the first study to provide direct evidence that processes related to neuroinflammation and vascular dysfunction are directly related in post-acute sequelae of COVID-19 (PASC) long COVID.”

@auscovid19

Source: https://www.healthrising.org/blog/2023/12/20/blood-vessel-neuroinflammation-long-covid/

tomkindlon, to longcovid
@tomkindlon@disabled.social avatar

Mechanisms underlying exercise intolerance in Long : an accumulation of multi-system dysfunction

https://shorturl.at/AGOVZ

is associated with reduced measures of exercise performance and skeletal muscle oxidative capacity in the absence of evidence of microvascular dysfunction, suggesting mitochondrial pathology. There was evidence of attendant ANS dysregulation in a significant proportion”

@longcovid

tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

Microvascular Capillary and Precapillary Cardiovascular Disturbances Strongly Interact to Severely Affect Tissue Perfusion and Mitochondrial Function in ME/CFS Evolving from the -19 Syndrome

Free:

https://www.preprints.org/manuscript/202312.0791/v1

@mecfs

@longcovid

@mecfs_de

tomkindlon,
@tomkindlon@disabled.social avatar

2/
A hypothesis article describing a vicious cycle of circulatory disturbances leading to "a particular kind of perfusion disturbance - capillary ischemia-reperfusion - which has a high potential of causing mitochondrial dysfunction by inducing sodium- & calcium-overload in skeletal muscles”

@mecfs @longcovid @mecfs_de

tomkindlon, to novid
@tomkindlon@disabled.social avatar

Incidence & burden of long in Africa: a systematic review and meta-analysis

https://shorturl.at/hxIK9

“fatigue was most common symptom (35.4%) which represents the most debilitating symptom, & the first reason patients seek for medical assistance…concerning as,in Africa,it has the potential to lead to important impairment in productivity & further loss of economic agency”

@longcovid
@covid19

tomkindlon, to mecfs
@tomkindlon@disabled.social avatar
tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

UK questionnaire that is now open people who have been diagnosed with ME/CFS or long Covid

https://www.qualtrics.manchester.ac.uk/jfe/form/SV_6thFs23wnA95Lca

Takes a while to complete supposedly but you can complete it in stages.

Principal investigator has ME and it is funded by the MEA so Association

@mecfs

@longcovid

tomkindlon, to covid19
@tomkindlon@disabled.social avatar

“we have demonstrated that there were no statistically significant differences in the retinal microvasculature of patients with syndrome compared to healthy cohorts. Furthermore, no significant structural differences were observed in the macular retinal nerve fibre layer (RNFL) & ganglion cell layer (GCL) of the study participants”

https://www.mdpi.com/2313-433X/9/11/234

@longcovid
@covid19

tomkindlon, to novid
@tomkindlon@disabled.social avatar

Persistent cognitive slowing in patients: longitudinal study over 6 months

https://shorturl.at/gJRUX

“Patients showed cognitive slowing indicated by longer reaction times compared to control participants (r = 0.51, p < 0.001) in a simple-response tonic alertness task & in all more complex tasks requiring speeded performance”

@longcovid
@covid19 @novid

tomkindlon, to longcovid
@tomkindlon@disabled.social avatar

Understanding progression with longitudinal peripheral blood mononuclear cell proteomics: Changes in the cellular proteome over time

https://shorturl.at/lrtS6
“fatty acid metabolism, OXPHOS, glucose metabolism disorder, & insulin resistance, remained altered […] consistent with previous reports on [] showing a chronic & self-perpetuating metabolically imbalanced non-resolving condition defined by mitochondrial dysfunction”
@longcovid

trendless, to Pcs

"High risk" has been twisted to focus exclusively on the potential for "severe" acute COVID (aka hospitalization for), ICU stays, and mortality, entirely omitting the high risk of morbidity conferred by reinfection after reinfection: organ and other compounding systemic damage, newly-developed cancer / autoimmune disease / chronic illness, and any other sequelae that slip through the diagnostic cracks.

#EveryoneIsHighRisk

#LongCovid #LongCovidIsCovid #LongSARS #PostCovid #PASC #PCS

tomkindlon, to saltlakecity
@tomkindlon@disabled.social avatar

(, )

trial recruiting

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

https://redcap01.brisc.utah.edu/ccts/redcap/surveys/?s=KFTMHC4DWERJK93T

@longcovid

tomkindlon, to saltlakecity
@tomkindlon@disabled.social avatar
bhawthorne, (edited ) to random

Long Covid’s fatigue and PEM appear to be similar or identical to other post-infectious disease syndromes such as ME/CFS. The problem is that medical researchers are specialized by body system and there are very few people who even seem to know about post-infectious diseases syndromes, let alone study it. You would think that ID specialists would, but they seem to be focused on immediate issues associated with acute infections, and not about the long-term multi-system deficits that those infections can result in for many people. The result is that those suffering from these syndromes are either assumed to have mental health issues (we often do, but as a consequence not as a precipitating factor) or painted as malingerers.

This is not a new concept, as evidenced by this 35-year old review paper: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2428896/

CastlTrAstonDrs, to random
@CastlTrAstonDrs@med-mastodon.com avatar

@Nature
Multiple infections with may Lead to .Old Scars caused havoc to🫀

PDF
PDF

CastlTrAstonDrs,
@CastlTrAstonDrs@med-mastodon.com avatar

Spectrum of Pathophysiology of Cardiovascular Involvement Due to & -. Chronic inflammatory🫀 involvement affects a much broader segment of previously well people who may had only an acute infection . The symptoms commonly develop after a delay of weeks or months after a period of relative recovery from the acute phase. Symptoms related to the 🫀 system : exertional dyspnoea, exercise intolerance, chest tightness, pulling or burning chest pain & palpitations

tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

Please Help David Tuller, Our Champion!

Link to donate: https://crowdfund.berkeley.edu/project/40018

Image taken from the American ME and CFS Society November 2023 newsletter

@mecfs

tomkindlon,
@tomkindlon@disabled.social avatar

2/
I've just donated to the crowdfunder for David Tuller DrPH https://crowdfund.berkeley.edu/project/40018

He has shown he has a:
-good skill set for this type of work

-good knowledge base from following the field closely for many years

-an appetite as it can be very draining

Proponents of exercise/psychologicalisation/etc are still around

@mecfs @longcovid

ToveHarris, to random German
@ToveHarris@mastodon.social avatar

Study: Regardless of variant, half of long-COVID patients fail to improve after 18 months

"At 1.5 year after infection, patients had no clinically meaningful decline in severity of long COVID, and 57% (245/429) of patients failed to improve 1.5 years after infection, with no differences between variants," the authors wrote.

https://www.cidrap.umn.edu/covid-19/study-regardless-variant-half-long-covid-patients-fail-improve-after-18-months

Private
EricCarroll,

@longcovid now let's do intensity, not duration. When symptoms are present how bad are they?

In the past three years how have your symptom intensity evolved?

EricCarroll, to longcovid

One-Year Adverse Outcomes Among US Adults With Post–COVID-19 Condition vs Those Without COVID-19 in a Large Commercial Insurance Database

https://jamanetwork.com/journals/jama-health-forum/fullarticle/2802095

> During the 12-month follow-up period, 2.8% of the individuals with PCC vs 1.2% of the individuals without died, implying an excess death rate of 16.4 per 1000 individuals.

@longcovid

tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

"Treatment Harms to Patients with / " by

David F Marks (an eminent academic psychologist)

https://opastpublishers.com/open-access-articles/treatment-harms-to-patients-with-myalgic-encephalomyelitischronic-fatigue-syndrome.pdf

Professionals have let down patients by not alerting everyone to this issue

@mecfs

1/

tomkindlon,
@tomkindlon@disabled.social avatar

13/

"7) "There is evidence that ME/CFS and share a common symptomatology and, possibly, similar aetiology [26]." Physicians and others who are treating patients with PASC need to made aware of the possible risks and harms that may ensue from the use of GET with or without CBT."

@mecfs @longcovid

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