"Complex, infection-associated chronic conditions affecting multiple body systems are not new, and Long COVID shares many features with such conditions as [ME/CFS], #fibromyalgia, and [#POTS ]. Current theories about the pathophysiology of these conditions include immune dysregulation, neurological disturbances, cardiovascular damage, gastrointestinal dysfunction, metabolic issues, and mitochondrial dysfunction."
Extract from comments by Dr Binita Kane in this popular Guardian article today:
"‘I could bench-press 100kg. Now, I can’t walk’: Lucy’s life with #longCovid ."
"Before the pandemic, Lucy Keighley ran a gym, worked as a personal trainer and went on gruelling, exhilarating runs. But after three and a half years of illness, she isn’t sure she will ever recover"
2/
This thorough Guardian article tells the story of Lucy Keighley and also presents a typical Long Covid patient story based on responses the Guardian has received from readers.
2/
"Our study reports a close association between exercise hyperventilation and [Exercise ventilatory inefficiency] as a permanent and distinctive sign of a proportion of asymptomatic survivors after 34 months. Even if this phenomenon has been documented, the pathophysiological mechanism is still unclear." @longcovid#LongCovid
2/
"Remarkably, IgG transfer from the two subgroups, which are characterized by higher plasma levels of neuronal proteins and leukocyte activation markers, induced pronounced and persistent sensory hypersensitivity with distinct kinetics. Conversely, IgG transfer from the third subgroup, which are characterized by enriched skeletal and cardiac muscle proteome profiles, reduced locomotor activity in mice without affecting their motor coordination"
Long #Covid Support:
Research Involvement Consultancy
"We make it easy to involve people with #LongCovid in your research and help ensure your study is relevant, robust and keeps the patient voice at the centre."
2/
"Our research advisers are all people with Long Covid who are trained in Patient Involvement in Research and have practical experience of being involved in various studies. Book a slot in one of our regular scheduled online advice sessions."
"Interestingly, several symptoms characterizing Long-COVID19 mirror the Postural Orthostatic Tachycardia Syndrome [POTS] that represents the most common form of dysautonomia causing orthostatic intolerance …
The autonomic symptoms reported after SARS-CoV-2 infection are often underestimated by patients and unrecognized by treating physicians."
“The absence of epistemological humility leaves an unacknowledged gap between patients’ lived experiences and the (lack of) medical knowledge about their illnesses.
This gap leaves the provider vulnerable to bias. Racialized, gendered, classed notions about whose bodies are “really” sick may begin to prevail."
"(Contd) In line with this assumed chronicity, 85% of patients reporting complaints two months after COVID-19 still reported symptoms one year after their symptom onset"
"we applied the advanced imaging technique [Diffusion Microstructure Imaging] to uncover microstructural changes after #COVID19 infection, with the observation of different patterns in a cohort of patients with and without PCC [Post-COVID-condition]"
Betsy Ladyzhets collates information on numbers and types of #LongCovid studies, and describes a website https://longcovidstudies.net that lists observational & interventional Long #Covid studies around the world to help people find ones they might participate in
"The parents try to navigate in an unfamiliar world, searching for someone to believe in them and their child, and describe the relief when their child's condition is confirmed. The findings also demonstrate the depth of suffering, not only for the child but also for the whole family."
The Australian ME/CFS & #LongCOVID (AusME) Registry is an online study of individuals aged 12yrs+ with ME/CFS and Long #COVID, as well as healthy volunteers
"U.S. is turning its back on long COVID. We'll pay the price if we don't act."
"There is a hidden public health crisis in America that we can no longer ignore. And that is the crisis of long COVID-19
… about 16 million people throughout our country have long COVID-19. It affects people of all ages and from all backgrounds. And we don’t know why."
@oldperl@longcovid
Am 7. Oktober, als ich von dem hamaSS-Anschlag noch nichts wusste, erzählten in einer Stuttgarter S-Bahn von Long-Covid betroffenre Frührentner, in der psychosomatischen Reha schärfte ihnen die Psychologin ein "Sie müssen die Formulierung 'Ich muß' komplett aus ihrem Wortschatz streichen."
"Although evidence suggests persistent autoantibodies can be associated with post-#COVID symptoms,the clinical relevance of their presence seems modest at this stage”