Your Path to Managing #LongCOVID Starts Here
A resource for people struggling with the lingering effects of COVID-19
Source: @SalvMattera
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#LongCovid
146 posts115 participants2 posts today
Press release from Brazil:
"Even the mild form of #COVID19 tends to cause an imbalance in the cardiovascular system and requires attention"
https://www.eurekalert.org/news-releases/1078107
Full paper:
Impact of @COVID_19 on heart rate variability in #PostCovid ...
https://www.nature.com/articles/s41598-024-82411-w
Hashtags:
@longcovid
#LongCovid #PASC #PwLC #postcovid19 #LC #PostCovidSyndrome #longhaulers #COVIDBrain #NeuroPASC
@covid19 #Coronavirus
#COVID #COVIDー19 #SARSCoV2 @novid@chirp.social #novid @novid@a.gup.pe #CovidIsNotOver
@auscovid19 #auscovid19
Replied to Tom Kindlon
If your doctor, or the doctor of someone you know, is still suggesting exercise therapy for CFS or fatigue in general, that recommendation has now officially had peer review label it
Outdated and misleading content; review unsuitable for clinical decisions
the full review: https://hbprojecttalk.wordpress.com/2025/03/13/iag-submission/
main author https://mastodon.online/@hildabast h/t @tomkindlon
Study finds long COVID patients feel pressure to prove their illness is real.
"People living with long COVID often feel dismissed, disbelieved, and unsupported by their health care providers, according to a new study from the University of Surrey."
Study: https://journals.sagepub.com/doi/10.1177/13591053251325112
Source: https://archive.md/vEAsQ
ZoomWelcome! You are invited to join a webinar: Exploring Long COVID Treatments: First-line, Promising, and Experimental. After registering, you will receive a confirmation email about joining the webinar.Panelists:
David Putrino, PhD - Professor in the Department of Rehabilitation and Human Performance at the Icahn School of Medicine at Mount Sinai in New York City and is the Nash Family Director of the Cohen Center for Recovery from Complex Chronic Illness. David trained as a physiotherapist in Australia before completing a PhD in Neuroscience. Since the beginning of the COVID-19 pandemic in 2020, David has been recognized globally as a leading expert in the assessment, treatment and underlying pathophysiology of Long COVID. His team has managed the care of over 3000 people with Long COVID and published multiple peer-reviewed scientific papers on the topic. In 2019, he was named "Global Australian of the Year" for his contributions to healthcare.
Leo Galland, MD - Physician at Leo Galland MD in New York City, international bestselling author, and recipient of the Linus Pauling Award from the Institute of Functional Medicine. Leo has been diagnosing and treating Long COVID patients since 2021 and brings a functional medicine approach to Long COVID management, with areas of focus on the gut microbiome, mitochondrial health, and tickborne diseases.
Stuart Malcolm, MD - Physician and Medical Director at RTHM. Clinic Stuart has treated hundreds of Long COVID patients since March of 2020 and brings a wealth of experience, knowledge and a true passion for care to the table. He has a particular interest in endothelial and mitochondrial dysfunction, iron dysregulation, EBV reactivation and SARS-CoV2 viral antigen persistence in this patient group.
Jennifer Curtin, MD - RTHM Chief Medical Officer and Cofounder. Jennifer’s area of clinical focus has been ME/CFS, Long COVID, and frequently co-morbid conditions like POTS. She’s a member of the ME/CFS Clinician Coalition and on the Scientific Advisory Board of MEAction. Her patient-centered approach integrates the latest research findings into clinical practice for IACCs.
Infektionen wie #Grippe oder #Corona können das #Gehirn auch langfristig beeinträchtigen – besonders bei älteren Menschen.
Forschende am #Helmholtz-Zentrum für #Infektionsforschung untersuchen, wie #Virusinfektionen kognitive Funktionen beeinflussen und das Risiko für #Demenz oder #Alzheimer erhöhen.
Bewegung, Lernen und Impfungen können helfen, das Gehirn zu schützen.
I have ME/CFS and I've experienced similar disbelief from others, including doctors, since 1990.
("but you don't *look* sick ...")
I am so sorry that Long Covid patients are going through the same thing! 
https://medicalxpress.com/news/2025-03-covid-patients-pressure-illness-real.html
"People living with long COVID often feel dismissed, disbelieved, and unsupported by their health care providers, according to a new study from the University of Surrey."
“It’s A Bloodbath”: Trump Administration Slashes Millions in NIH Funding for Maternal Health, HIV, and Other Research
" Trump and his RFK-led HHS also shuttered its Long Covid office, which worked on curing Long Covid and streamlining Covid-related public health efforts …"
Includes links to multiple stories about these cuts.
Kreativ und inklusiv mit bestem Beispiel vorangehen:
Das tut die Markuskirche in #Marburg
Dort wird am 29.3. ein spiritueller Raum geschaffen für Menschen, die sonst nur noch wenig am sozialen und religiösen Leben teilnehmen können.
Danke, liebe Markusgemeinde und UND Marburg! 
Mark Vink is amazing to be able to do papers like this while bedbound with ME 
"Are CBT and a group physical and mental health rehabilitation programme effective treatments for long COVID? Rethinking of a systematic review"
Hashtags:
@longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #COVIDBrain #NeuroPASC @mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
This evening, I gardened.
It started with weeding a small patch. Then I planted a tree. Then I carried on weeding. Then I mowed.
And it was all too much but I'm glad I did.
I am a bit out of breath. I am a bit sore. It is nice to feel my body in a way that aches with effort rather than illness.
I am certain I will pay for all this will in the days to come but for now I'm happy and I carry with me the pulse of the garden under my hands.
“We did the not-sexy, behind-the-scenes work that it takes to make the federal government function well,” the staffer said. “We made sure doctors at the VA are talking to scientists and researchers and epidemiologists at CDC and NIH — that they’re learning from each other. It was a very, very cost effective way to make sure that people are talking to each other and that we’re making the best use of federal resources.”
#longcovid
Das ist ein schwerer Schlag für die Forschung zu #COVID19 und v.a. zu #LongCovid, auch wenn es nicht wirklich überraschend kommt: Die Trumpisten lassen die Finanzierung der Forschungsprojekte zu diesen Themen auslaufen.
Das dafür zuständige HHS teilte dem ScienceMagazine mit: „Die COVID-19-Pandemie ist vorbei, und das HHS wird nicht länger Milliarden von Steuergeldern verschwenden, um auf eine nicht existierende Pandemie zu reagieren, die die Amerikaner schon vor Jahren hinter sich gelassen haben. Das HHS setzt Prioritäten bei der Finanzierung von Projekten, die Präsident Trumps Auftrag erfüllen, unsere Epidemie chronischer Krankheiten zu bekämpfen und Amerika wieder gesund zu machen.“
"Make America Healthy Again" oder MAHA ist natürlich die von dem Impfgegner RFK jr gegründete Wahlplattform, die nun von den Trumpisten übernommen worden ist.
Replied to Tom Kindlon
Here's another "literally brain responses are slower" result, a great one to pair with the reaction/response time slowdown, when trying to convince gamers and car drivers and sports players that COVID-19 is something to avoid:
This could suggest a form of accelerated central auditory aging in COVID-19
Our findings suggest that PASC may alter the central auditory pathway and lead to slower conduction and elevated auditory neurophysiology responses at the midbrain, a pattern associated with the typical aging process.
Notably, the younger and older groups did not differ on other dimensions of the ABR, including peak and inter-peak latencies, suggesting that heightened gain is not comorbid with deficient synaptic transmission
Delayed neural conduction time and increased central gain in the midbrain could give rise to functional cortical processing disparities in PASC
the V/I ratio increase in the PASC groups, particularly the younger subjects, potentially exceeds central changes that are expected to occur with natural aging. Indeed, in the PASC group, the younger subjects patterned similarly to the older subjects.
https://www.nature.com/articles/s41598-025-93664-4
h/t the most admirable @tomkindlon
NatureAltered auditory brainstem responses are post-acute sequela of SARS-CoV-2 (PASC) - Scientific ReportsThe Post-acute Sequela of SARS-CoV-2 (PASC) syndrome, also known as Long-COVID, often presents with subjective symptoms such as brain fog and cognitive fatigue. Increased tinnitus, and decreased hearing in noise ability also occur with PASC, yet whether auditory manifestations of PASC are linked with the cognitive symptoms is not known. Electrophysiology, specifically the Auditory Brainstem Response (ABR), provides objective measures of auditory processing. We hypothesized that ABR findings would be linked to PASC and with subjective feelings of cognitive fatigue. Eighty-two individuals, 37 with PASC (mean age: 47.5, Female: 83%) and 45 healthy controls (mean age: 38.5, Female: 76%), were studied with an auditory test battery that included audiometry and ABR measures. Peripheral hearing thresholds did not differ between groups. The PASC group had a higher prevalence of tinnitus, anxiety, depression, and hearing handicap in addition to increased subjective cognitive fatigue. ABR latency findings showed a significantly greater increase in the wave V latency for PASC subjects when a fast (61.1 clicks/sec) compared to a slow click (21.1 clicks/sec) was used. The increase in latency correlated with cognitive fatigue scores and predicted PASC status. The ABR V/I amplitude ratio was examined as a measure of central gain. Although these ratios were not significantly elevated in the full PASC group, to minimize the cofounding effect of age, the cohort was median split on age. Elevated V/I amplitude ratios were significant predictors of both predicted PASC group classification and cognitive fatigue scores in the younger PASC subjects compared to age-matched controls providing evidence of elevated central gain in younger individuals with PASC. More frequent tinnitus also significantly predicted higher subjective cognitive fatigue scores. Our findings suggest that PASC may alter the central auditory pathway and lead to slower conduction and elevated auditory neurophysiology responses at the midbrain, a pattern associated with the typical aging process. This study marks a significant stride toward establishing an objective measure of subjective cognitive fatigue through assessment of the central auditory system.
Doctors still can't fully tell me what is wrong or what my health is going to look like in 5, 10, 20, 30 years. To this gov't I don't exist. I do not matter. My suffering is an inconvenient truth and their solution is to just ignore it.
And I am not alone.
#LongCOVID #COVID #Healthcare
RE: https://bsky.app/profile/did:plc:6vwezbhj7wwowu4sbur5npjk/post/3llad4mfqak2b
Bluesky SocialBluesky
“Federal health officials said Tuesday they are pulling back $11.4 billion in #COVID19 -related funds for state and local public health departments and other health organizations throughout the nation” #longCovid
https://apnews.com/article/hhs-covid-pandemic-trump-cdc-309fedec9383dc4fdacba6e9ca2b5309
AP News · Trump administration says it will pull back billions in COVID funding from local health departments
“The #COVID19 pandemic is over, and HHS will no longer waste billions of taxpayer dollars responding to a non-existent pandemic that Americans moved on from years ago,” —U.S. Department of Health and Human Services. #longCovid
https://apnews.com/article/hhs-covid-pandemic-trump-cdc-309fedec9383dc4fdacba6e9ca2b5309
AP News · Trump administration says it will pull back billions in COVID funding from local health departments
REMINDER: Am 27.03.2025 findet die 2. Veranstaltung des Ministerium für Arbeit, Gesundheit & Soziales #NRW zum Thema "Long- und Post-COVID, Post-Vac und ME/CFS: Angebote für Betroffene" von 10.00 bis 12.00 Uhr online statt.
Die Veranstaltung vermittelt Wissen, praxisnahe Selbstmanagement-Strategien und Ressourcen, damit Betroffene informierte Entscheidungen treffen und besser mit ihrer Erkrankung umgehen können.
Kostenlos anmelden: www.lzg.nrw.de/11773517
Door een slechtere periode waarin ik geen puf had om langer rechtop te zitten, heeft het lang geduurd, maar eindelijk weer eens een kleurplaat af. Nu bedenken of ik hem zo laat of het watereffect van de Inktense potloden ga uitproberen....
My #LongCovid life. #kleurenvoorvolwassenen
· #LongCOVID and myalgic encephalomyelitis (#MECFS) have similarly impaired vascular function
· Long COVID prevalence is not declining
· Damage to the glymphatic system — which clears waste from the brain — and the blood-brain barrier may contribute to neurocognitive impairment in people with Long COVID
https://thesicktimes.org/2025/03/25/research-updates-march-25/
The Sick Times - Chronicling the Long Covid crisis · Research updates, March 25 - The Sick TimesA new study in The American Journal of Medicine found that people with Long COVID and myalgic encephalomyelitis (ME) have similarly impaired vascular function. The small study assessed the blood vessel response of 17 people with Long COVID, 17 with ME, and 17 controls. The authors concluded that the impaired endothelial function (i.e., poor functioning