Top Tweets for #COVIDPersistent

Writing this as the founder of a Long COVID org, a person with Long COVID for 6+ years, and someone who is TIRED of the BS happening between both the ME and LC orgs and individuals. First, I advocate for Long COVID. That is my orgs focus. I follow science, I believe science evolves and progresses, and I believe science requires admitting when we didn’t get it right. Second, I fully support IACC advocacy and will die on that hill. I fully appreciate and understand the history, and the roll that cross disease research plays in Long COVID, ME, and other IACCs. (Example: look at CAR-T used for one disease, now broadening out to Lupus and other rheumatological conditions). Third, however, I perhaps vary in feeling like each disease demands and deserves its own funding, advocates, and agenda while still also working alongside other similar disease communities for answers, without such work and efforts taking from the Long COVID pot, and especially so when those other disease communities are not contributing the same. The fighting is harming all of us. Old ways of thinking are harming all of us. Greed is harming all of us. So here are some of the problems happening. Long COVID= Long COVID ME = ME People with Long COVID can have ME (and POTS, cardiovascular disease, insomnia, MS, you name it it can co-exist). The same is true for ME, or any other condition being able to have Long COVID. The problem is when a community hijacks another disease or conflates the disease as “the same.” Example 1: using LC/ME makes it the same instead of saying Long COVID and ME in their own identifying contexts. Example 2: literally no other disease community says LC/ X (x being their other disease). This leads to more of #1 and them being seen as the same conditions. From people and orgs on socials, to every media publication not being able to discuss Long COVID without ME mentioned, it can feel like our disease is being stepped all over and we are being minimized, which is ironic given how the ME community has fought for recognition and help for decades and I get that’s why some of this is occurring but doing to us what most have felt has been done to them for decades is wild. Argument for #2 becomes well 50% of ppl with Long COVID have / meet criteria for ME. Okay, well 70% meet it for autonomic dysfunction, 40% for rheumatologic conditions, and we can keep going. The ME community doesn’t acknowledge this and again, no other disease communities are using this justification to speak for Long COVID. #3 ME orgs who have preached “nothing about us, without us” knowingly and purposefully take seats away from Long COVID orgs and advocates in key settings (it should happen nowhere). One example of this is an ME org putting forward NINE people from their org for the Long COVID Federal Advisory Committee and when I asked for a recommendation letter by said org, who at the time we worked with, I was told no because of this very reason. Another example would be on a non official working group many orgs were part off, which ALL Long COVID orgs ended up leaving collectively with letters of withdrawal calling out this behavior above and below and this direct situation. We were developing voting rules. One vote per org within the disease which then turned into a vote for the disease itself. So if there were 5 Long COVID orgs, and 3 vote yes and 2 no, the Long COVID vote would be yes for the working group and all other disease communities would do the same. Well, ME felt they should get multiple votes because they also represented Long COVID for which I responded then Long COVID gets the most votes and calls the program in entirety because we encompass every condition here. Another example would be me directly approaching an ME org MULTIPLE TIMES verbalizing the issues happening, asking them to stop, having the backing of other Long COVID org advocates and then being told to F off and they will do what they please. Continued …. 1/

MRI-Based Quantitative Assessment of Normal-Appearing White and Gray Matter Demyelination in Multiple Sclerosis, Parkinson’s Disease, Long COVID, and Normal Aging 🚨LongC0VID scars the brain like MS & Parkinson’s: advanced MRI reveals hidden myelin damage in “normal-looking” Gray matter! #BRAINDAMAGE ➡️This very interesting Russian study used macromolecular proton fraction (MPF) mapping, an advanced quantitative MRI technique sensitive to myelin content, to assess global alterations in normal-appearing Gray matter (GM) and White matter (WM) outside focal lesions. ➡️They compared four groups totalling 196 participants: - Multiple sclerosis (MS, n=42), - Parkinson’s disease (PD, n=16), - LongC0VID (LC, n=75), and - Healthy volunteers (n=63) representing normal aging, - Focused on tissue that appears normal on conventional MRI yet is known to show subtle damage in neurological disease and aging. ➡️Findings: - MPF mapping detected clear age- and disease-related differences in brain myelination, especially pronounced in Gray matter, and proved sensitive enough for reliable detection. - Significant MPF decreases (with WMH volume increases) occurred in global WM, WM-GM, and GM in normal aging (75–85 yrs) and in MS, PD, and LongC0VID patients, except no WM/WMH volume change in LongC0VID. - MS showed the largest MPF drop. - Among LongC0VID patients, those with depression or insomnia had the greatest global MPF reduction. - Peak myelination in healthy controls occurred at ~42–46 years. MPF strongly correlated with disability (EDSS) in MS (strongest in GM, r = –0.71) and with disease stage in PD. ➡️Conclusion: - MPF mapping detected age-related and disease-related differences in brain myelination. - Changes were particularly pronounced in Gray matter. - LongC0VID patients showed significant MPF reductions in global white matter, white-Gray matter, and especially Gray matter (without increased WMH volume). The greatest myelin loss occurred in those with depression or insomnia as post-COVID complications, demonstrating that LongC0VID causes measurable, hidden demyelination-like brain injury independent of atrophy, age, or gender. - The method proved sensitive enough for reliable detection of these differences. ‼️So, this is the first study to compare disease-dependent differences in global White- and Gray-matter myelination across MS, Parkinson’s, LongC0VID, and normal aging using quantitative MPF mapping. Controlling for age and gender isolated the specific disease effects on myelin loss from demographic factors. These MPF reductions were also independent of brain atrophy. Advanced MPF MRI thus reveals that LongC0VID, like established neurodegenerative diseases, produces measurable, widespread impairments in brain myelination, especially in Gray matter, proving that “normal appearing” post-COVID tissue is often not normal. It supplies objective neuroimaging evidence that moves LongC0VID beyond subjective symptoms, validates MPF mapping as a practical, sensitive biomarker for large-scale clinical monitoring, and underscores the need for advanced imaging to track neurological sequelae of SARSCoV2. #AvoidSars2 #AvoidReinfections https://t.co/ScIS1uhMYn

ATENCIÓ 19.41 h: La Torre Glòries de Barcelona va fer dijous «proves tècniques» per il·luminar-se amb la bandera espanyola i el missatge «CAMPEONES» si Espanya guanya diumenge la final del Mundial contra l’Argentina. 👉🏻 La projecció va durar uns quinze minuts i les imatges són reals. L’equip de comunicació de la torre ha confirmat que era un assaig per comprovar que el dispositiu funcionés correctament. 👉🏻 L’edifici és propietat privada de Merlin Properties. De moment, no consta cap participació de l’Ajuntament de Barcelona en la iniciativa. 🤔 Barcelona és la capital de Catalunya, no l’aparador del nacionalisme espanyol. Merlin pot ser propietària de l’edifici, però no de la ciutat ni del que representa. Convertir un dels símbols de l’horitzó barceloní en una pancarta de la selecció espanyola és una provocació absolutament innecessària.