Library ghost with a love of SFF.
Often low on energy due to #MECFS--may be slow to respond. #CripTime
#NEISvoid #Disabled #pwME #EDS #POTS
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HEADER: Two sculptures facing each other against a background of tress. Sculptures: white letters shaped & connected to look like humans sitting facing one another, with faces not filled in, suggesting openness.
The pillow writers group has published a new collection called Near-Life Experiences: The Pillow Writers Anthology, Issue 2. This ebook is available on Amazon. All proceeds go to #MEAction.
https://www.s4me.info/threads/meaction-usa-near-life-experiences-the-pillow-writers-anthology.46166/
The second Pillow Writers Anthology (USA link) is now available on Amazon. All proceeds go to #MEAction. Update, adding more Amazon links for other countries: - UK Amazon link - Canada Amazon link Description from the Amazon page: Near-Life Experiences: The Pillow Writers Anthology is a...
Metabolic neuroimaging of myalgic encephalomyelitis/chronic fatigue syndrome and Long-COVID
Screenshot from latest Science for ME weekly update
@longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #COVIDBrain #NeuroPASC
@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
Article from Dec 2020:
"A century of COVID-19: what history tells us about the long-term effects of a pandemic"
https://gero.usc.edu/2020/12/08/century-covid-pandemic-risk/
“The fact that this cohort of people had elevated risks of disease even more than six decades after the pandemic indicates that maternal exposure to the infvirus appears to have had wide-ranging and long-lasting health effects on offspring"
#1918Flu #longCOVID #MECFS #COVID19 #Influenza #H1N1 #longFlu #NEISvoid #pwME
I barely have the energy to ask for help. It’s been over a year and a half since Long COVID brought my cancer back
- it responds to infections so I knew getting COVID could kill me and it almost did.
I can’t seem to get back in my feet. I get closer and closer only to be knocked down again.
I’m afraid I’m going to die of a treatable cancer. Or die from my body tissue not getting enough oxygen although I am back to using it 7 hours a day in addition to when I’m asleep.
Good morning citizens of dystopia. I need your help.
For the 10th month in a row I have not my monthly GoFundMe goal in time to pay my med bills.
Particularly chemo & oncologist bills, which is also the only monitoring & care I get for Long COVID.
Late bills mounting for regular bills. I’m about to put groceries for my 2 sets of twins on a credit card.
Please help me.
Internal tremors & vibrations in #longCOVID: a cross-sectional study
“In a cross-sectional study of people with long #COVID, we found internal tremors were a common symptom, affecting 37% of participants”
@longcovid
#LongCovid #PwLC #PostCovidSyndrome #LC #PASC #postcovid @covid19
#COVIDー19 #COVID19 #COVID #COVID_19 #SARSCoV2 @novid #novid #CovidIsNotOver #CovidBrain
Importance Internal tremors and vibrations symptoms have been described as part of neurologic disorders but not fully described as a part of long COVID. Objective To compare demographics, socioeconomic characteristics, pre-pandemic comorbidities, new-onset conditions, and long COVID symptoms between people with internal tremors and vibrations as part of their long COVID symptoms and people with long COVID but without these symptoms. Design A cross-sectional study, Listen to Immune, Symptom and Treatment Experiences Now (LISTEN), of adults with and without long COVID and post-vaccination syndrome, defined by self-report. Setting Hugo Health Kindred, a decentralized digital research platform hosting a network of English-speaking adults interested in contributing to COVID-related research. No geographic limitation applied. Participants The study population included 423 participants who enrolled in LISTEN between May 2022 and June 2023, completed the initial and the conditions and symptoms surveys, reported long COVID, and did not report post-vaccination syndrome. Exposure Long COVID symptoms of internal tremors and vibrations. Main outcomes and Measures Demographics, pre-pandemic comorbidities, and current conditions, other symptoms, and quality of life at the time of surveys. Results Of the 423 participants (median age, 46 years [IQR, 38-56]), 74% were female, 87% were Non-Hispanic White, 92% lived in the United States, 46% were infected before the Delta wave, and 158 (37%) reported “internal tremors, or buzzing/vibration” as a long COVID symptom. Before long COVID, the groups had similar comorbidities. Participants with internal tremors were different from others in having worse health as measured by the Euro-QoL visual analogue scale (median: 40 points [IQR, 30-60] vs. 50 points [IQR, 35-62], P = 0.007), having financial difficulties caused by the pandemic (very much financial difficulties, 22% [95% CI, 16-30] vs. 11% [7.3-15], P < 0.001), often feeling socially isolated (43% [95% CI, 35-52] vs. 37% [31-43], P = 0.039), and having higher rates of self-reported new-onset mast cell disorders (11% [95% CI, 7.1-18] vs. 2.6% [1.2-5.6], Bonferroni-adjusted P = 0.008) and neurologic conditions (including but not limited to seizures, dementia, multiple sclerosis, Parkinson’s disease, neuropathy, etc.; 22% [95% CI, 16-29] vs. 8.3% [5.4-12], Bonferroni-adjusted P = 0.004). Conclusions and Relevance Among people with long COVID, those with internal tremors and vibrations have several other associated symptoms and worse health status, despite having similar pre-pandemic comorbidities, suggesting it may reflect a severe phenotype of long COVID. Question Do people with long COVID symptoms of internal tremors and vibrations differ from others with long COVID but without these symptoms? Findings In this cross-sectional study that included 423 adults with long COVID, 158 (37%) reported having “internal tremors, or buzzing/vibration,” had worse quality of life, more financial difficulties, and higher rates of new-onset mast cell disorders and neurologic conditions, compared with others with long COVID but without internal tremors and vibrations. Meaning Internal tremors and vibrations may reflect a severe phenotype of long COVID. ### Competing Interest Statement Dr. Harlan Krumholz and his spouse are co-founders of, and have equity in, Hugo Health, the personalized health data-platform company that developed the Hugo Health Kindred platform. Dr. Krumholz is a scientific advisor to, and his spouse is an officer with, Hugo Health. His involvement in this study is overseen by the Yale Conflict of Interest Committee. In the past three years, Harlan Krumholz received expenses and/or personal fees from UnitedHealth, Element Science, Eyedentifeye, and F-Prime. He is a co-founder of Refactor Health and is associated with contracts, through Yale New Haven Hospital, from the Centers for Medicare & Medicaid Services and through Yale University from the Food and Drug Administration, Johnson & Johnson, Google, and Pfizer. Dr. Rohan Khera is an Associate Editor of JAMA. He receives support from the National Heart, Lung, and Blood Institute of the National Institutes of Health (under award K23HL153775) and the Doris Duke Charitable Foundation (under award, 2022060). He also receives research support, through Yale, from Bristol-Myers Squibb and Novo Nordisk. He is a coinventor of U.S. Provisional Patent Applications 63/177,117, 63/428,569, 63/346,610, and 63/484,426. He is a co-founder of Evidence2Health, a precision health platform to improve evidence-based cardiovascular care. Dr. Akiko Iwasaki is a co-founder and consults for RIGImmune, Xanadu Bio and PanV, she consults for Paratus Sciences, InvisiShield Technologies, and is a member of the Board of Directors of Roche Holding Ltd. ### Funding Statement This study was in part funded by the Howard Hughes Medical Institute Collaborative COVID-19 Initiative, and grants from the National Institute of Allergy and Infectious Diseases (R01AI157488 to Dr. Akiko Iwasaki). ### 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: The Yale University Institutional Review Board gave ethical approval for this work. 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 Code and deidentified data to reproduce machine learning analyses in the present study are publicly available. Other deidentified data in the present study are available upon reasonable request to the authors. <https://github.com/aditharun/tremors-ml>
Jeri Dansky
Tom Kindlon
Thomas
Metropia
Eric Topol
Tinu - Empress of Twerk