Create accountLogin

Recent searches

No recent searches

Search options

Only available when logged in.
beige.party is one of the many independent Mastodon servers you can use to participate in the fediverse.
A home to friendly weirdos. The Grey Gardens of the Fediverse (but beige). Occasionally graphically cacographic. Definitely probably not a cult (though you'll never be 100% sure). Beige-bless 🙏

Administered by:

Server stats:

445
active users

beige.party: AboutProfiles directoryPrivacy policy

Mastodon: AboutGet the appKeyboard shortcutsView source codev4.3.7

#LongCovid

131 posts95 participants1 post today
Public
Tom Kindlon

(Boston, Massachusetts)
Research study on the effectiveness of abrocitinib vs placebo for improving severe fatigue in adults with Long COVID

Image is from MassME April Newsletter

massmecfs.org/newsletters/922-

Hashtags:
@longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #COVIDBrain #NeuroPASC

@covid19 #Coronavirus
#COVID19 #COVID #COVID_19 #COVIDー19 #SARSCoV2

Long COVID Research Study at Beth Israel Deaconess Dr. Dan Barouch at Beth Israel Deaconess is starting a research study on the effectiveness of abrocitinib vs placebo for improving severe fatigue in adults with Long COVID. You might be eligible if you are over 18 years of age, have had Long COVID symptoms for more than 2 months, and have not recently tested positive for COVID-19. Participants will provide blood samples and answer questionnaires during 6 visits over 4 months. Compensation of up to $75 and a parking voucher is available for each study visit. For more information contact: BIDMC-CVVRTRIAL@bidmc.harvard.edu or call 617-735-4610.
Replied in thread
Public
datum (n=1)

@themaskerscomic this is really remarkably solid data

The cohort included 297,920 SARS-CoV-2-positive individuals and 915,402 SARS-CoV-2-negative controls. Every individual had at least a six-month follow-up after cohort entry

With a range of risk ratios from roughly +25% to +200%! That's up to triple the risk!

children and adolescents [...] infected with SARS-CoV-2 exhibited increased risks for a range of post-acute cardiovascular outcomes, with RR [risk ratio] between 1.26 and 2.92

and things have not gotten better with newer variants:

similar cardiovascular outcomes in children infected with the Delta and Omicron variants

nature.com/articles/s41467-025 also via @TRyanGregory

NatureCardiovascular post-acute sequelae of SARS-CoV-2 in children and adolescents: cohort study using electronic health records - Nature CommunicationsPost-acute sequelae of SARS-CoV-2 infection affecting the cardiovascular system have been reported, but evidence in young people is limited. Here, the authors quantify the incidence of a range of outcomes in children and adolescents using electronic health records from the United States.
#COVIDIsNotOver#COVID#SARSCoV2
Public
ahimsa

"ME/CFS, ties to Long COVID are the focus of ongoing research studies"

accesspress.org/me-cfs-ties-to

Recent findings from NIH study show that COVID infection leads to more cases of ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome)

New incidence cases of ME/CFS were 15 times higher than pre-pandemic levels

@mecfs @longcovid

Access Press · ME/CFS, ties to Long COVID are the focus of ongoing research studies | Access PressUnderstanding the effects of Long COVID may also mean understanding what is called ME/CFS. ME/CFS is myalgic encephalomyelitis/chronic fatigue syndrome. […]
#COVID19#LongCovid#PostCovid
Continued thread
Public
Jeanine B. aus H.

Hinzu kommt das Tragen von #FFP2 Masken. Es sollte selbstverständlich sein, ist aber durch Desinformation und Framing 'verpöhnt', wenn man das so diplomatisch betiteln möchte.

Ich würde mich sehr freuen, wenn ihr meine Petition #HygieneNeuDenken chng.it/fFZ4YcTDxW unterschreibt und natürlich teilt ♥

Die Intention ist und bleibt weiterhin, Menschen vor gesundheitlichen Beeinträchtigungen und dauerhaften Behinderungen zu bewahren.

#LongCovid#PostCovid#PCS
Public
Tom Kindlon

New from Germany:

Brainstem Reduction and Deformation in the 4th Ventricle Cerebellar Peduncles in Long COVID Patients: Insights into Neuroinflammatory Sequelae and “Broken Bridge Syndrome”

medrxiv.org/content/10.1101/20

@longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #COVIDBrain #NeuroPASC
@covid19 #Coronavirus
#COVID19 #COVID #COVID_19 #COVIDー19 #SARSCoV2 @novid@chirp.social #novid @novid@a.gup.pe #CovidIsNotOver
@auscovid19 #auscovid19

1/

medRxiv · Brainstem Reduction and Deformation in the 4th Ventricle Cerebellar Peduncles in Long COVID Patients: Insights into Neuroinflammatory Sequelae and "Broken Bridge Syndrome"Post-COVID Syndrome (PCS), also known as Long COVID, is characterized by persistent and often debilitating neurological sequelae, including fatigue, cognitive dysfunction, motor deficits, and autonomic dysregulation (Dani et al., 2021). This study investigates structural and functional alterations in the brainstem and cerebellar peduncles of individuals with PCS using diffusion tensor imaging (DTI) and volumetric analysis. Forty-four PCS patients (15 bedridden) and 14 healthy controls underwent neuroimaging. Volumetric analysis focused on 22 brainstem regions, including the superior cerebellar peduncle (SCP), middle cerebellar peduncle (MCP), periaqueductal gray (PAG), and midbrain reticular formation (mRt). Significant volume reductions were observed in the SCP (p < .001, Hedges' g = 3.31) and MCP (p < .001, Hedges' g = 1.77), alongside decreased fractional anisotropy (FA) in the MCP, indicative of impaired white matter integrity. FA_Avg fractional anisotropy average tested by FreeSurfer Tracula, is an index of white matter integrity, reflecting axonal fiber density, axonal diameter and myelination. These neuroimaging findings correlated with clinical manifestations of motor incoordination, proprioceptive deficits, and autonomic instability. Furthermore, volume loss in the dorsal raphe (DR) and midbrain reticular formation suggests disruption of pain modulation and sleep-wake cycles, consistent with patient-reported symptoms. Post-mortem studies provide supporting evidence for brainstem involvement in COVID-19. Radtke et al. (2024) reported activation of intracellular signaling pathways and release of immune mediators in brainstem regions of deceased COVID-19 patients, suggesting an attempt to inhibit viral spread. While viral genetic material was detectable, infected neurons were not observed. Matschke et al. (2020) found that microglial activation and cytotoxic T lymphocyte infiltration were predominantly localized to the brainstem and cerebellum, with limited involvement of the frontal lobe. This aligns with clinical observations implicating the brainstem in PCS pathophysiology. Cell specific expression analysis of genes contributing to viral entry (ACE2, TMPRSS2, TPCN2, TMPRSS4, NRP1, CTSL) in the cerebral cortex showed their presence in neurons, glial cells, and endothelial cells, indicating the potential for SARS-CoV-2 infection of these cell types. Associations with autoimmune diseases with specific autoantibodies, including beta 2 and M 2 against G protein coupled alpha 1, beta 1, beta 2 adrenoceptors against angiotensin II type 1 receptor or M1,2,3 mAChR, among others, voltage-gated calcium channels (VGCC) are known (Blitshteyn et al. 2015 and Wallukat and Schminke et al. 2014). These findings support the "Broken Bridge Syndrome" hypothesis, positing that structural disconnections between the brainstem and cerebellum contribute to PCS symptomatology. Furthermore, we propose that chronic activation of the Extended Autonomic System (EAS), encompassing the hypothalamic-pituitary-adrenal (HPA) axis and autonomic nervous system, may perpetuate these symptoms (Goldstein, 2020). Perturbations in this system may relate to the elevation of toxic autoantibodies AABs (Beta 2 and M 2), specific epitopes of the COVID virus's SPIKE protein and Cytokine storm of IL-1, IL-6, and IL-8 in their increased numbers (1,000->10,000) Further research is warranted to elucidate the underlying neuroinflammatory mechanisms, EAS dysregulation, and potential therapeutic interventions for PCS. Keywords: Long COVID, Brainstem, Cerebellar Peduncles, Diffusion Tensor Imaging, Neuroinflammation, Broken Bridge Syndrome, Extended Autonomic System (EAS) ### Competing Interest Statement The authors have declared no competing interest. ### Funding Statement This study was funded by OTTO Research Group ### Author Declarations I confirm all relevant ethical guidelines have been followed, and any necessary IRB and/or ethics committee approvals have been obtained. Yes The details of the IRB/oversight body that provided approval or exemption for the research described are given below: 2022-100867-BO-ff 1. Ethics approval was granted by the Ethics Committee of the Hamburg Medical Association, Germany, on September 5, 2022, under the title "MRI Biomarkers in Chronic Fatigue," by Prof. Dr. Rolf Stahl. 2. The project complies with the ethical and professional requirements. The Ethics Committee approves the project. The Ethics Committee operates on the basis of German law and professional regulations, as well as in accordance with ICH-GCP. I confirm that all necessary patient/participant consent has been obtained and the appropriate institutional forms have been archived, and that any patient/participant/sample identifiers included were not known to anyone (e.g., hospital staff, patients or participants themselves) outside the research group so cannot be used to identify individuals. Yes I understand that all clinical trials and any other prospective interventional studies must be registered with an ICMJE-approved registry, such as ClinicalTrials.gov. I confirm that any such study reported in the manuscript has been registered and the trial registration ID is provided (note: if posting a prospective study registered retrospectively, please provide a statement in the trial ID field explaining why the study was not registered in advance). Yes I have followed all appropriate research reporting guidelines, such as any relevant EQUATOR Network research reporting checklist(s) and other pertinent material, if applicable. Yes All data produced in the present study are available upon reasonable request to the authors All data produced in the present work are contained in the manuscript
Public
Broadwaybabyto

This is the longest I’ve ever gone without publishing an article, and the stress of not having anything ready is weighing heavy on my heart

It’s ironic considering how often I write about the importance of resting and listening to your body when it needs a break.

I’m so grateful for the Disabled Ginger community, but my body and brain clearly need a break.

I sit down to write everyday, and so far all I have is 30+ drafts with titles, a few images and (at best) two lines of actual content.

This is the harsh reality of chronic illness. It doesn’t matter how much you WANT to do something… if your body says “No”… Its a No.

You can’t try harder your way out of it. You can’t play through the pain.

The more you try to fight your body, the harder and longer the crash.

If you’re struggling to rest right now, take this as a sign to unplug. Relax. Recharge. Give your body what it’s crying out for and do it without the guilt.

We will all be here for you when you’re ready.

Sharing my article on radical rest from the archives, because I need the reminder & maybe so does someone else:

disabledginger.com/p/its-time-

The Disabled Ginger · It's Time to Throw Away the 'Coulda, Woulda, Shouldas' and Practice Radical RestBy Broadwaybabyto
#chronicillness#disability#selfcare
Public
Broadwaybabyto

I understand wanting to go 'back to normal'. Pandemics are traumatizing and scary. Of course people want to forget them.

But they don't end when we decide we've had enough. The threat doesn't go away because we have 'Covid fatigue' or because we’re sick of masking.

We must stop denying the reality that Covid is still with us, still killing and still disabling people.

We must work on our collective trauma and push for common sense measures like masks in healthcare, free respirators and tests and clean air in public spaces.

“Back to normal” isn’t working. It’s a mirage. The comfortable lie.

But we can move towards a new normal together. One where everyone is safer and healthier. It’s not too late.

#covidisnotover#covidisairborne#longcovid
Public
Tom Kindlon

"Cards2Warriors has a special program called Happy Mail, where they send snail mail cards to those [who are ill] who need encouragement & cheer"

Links:
cards2warriors.org/
cards2warriors.org/happy-mail

Image from Institute for Neuro-Immune Medicine e-bulletin

#chronicillness @chronicillness
@spoonies
#chroniclife
#Spoonielife
#hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll @mecfs
#MEcfs @longcovid
#LongCovid @fibromyalgia
#Fibromyalgia #Fibro #FMS #FM

Chronic Illness Support Have you heard of Cards2Warriors? We want to highlight the special work this nonprofit does for those affected by rare or long-term illnesses —including patients, caregivers, siblings, and medical professionals. Cards2Warriors has a special program called Happy Mail, where they send snail mail cards to those who need encouragement and cheer. It doesn't matter which of the 7,000+ rare or long-term illnesses you've been diagnosed with —Cards2Warriors welcomes YOU and wants to shower you with some snail mail support! Open to warriors worldwide, with an option for digital cards. Learn more and sign-up here.
ExploreLive feeds
About