The Australian ME/CFS and Long COVID (AusME) Registry is an online study of individuals aged 12yrs+ with ME/CFS or Long COVID, as well as healthy volunteers.
NIH has "failed to publish any research that furthers our understanding of the underlying cause of long Covid and the vast majority of clinical trials they’ve launched are for drugs that people have already tried and found unhelpful."
"NIH should reevaluate how it allocates funding to diseases and base allocations on objective patient burdens."
"I have spent my career studying infectious diseases that fall under the heading of neglected tropical diseases. Now I have a neglected disease — long Covid — an incurable (for now and for me) disease."
One of my worst PEM crash days today (ME/CFS) where any way of keeping myself entertained while resting feels ‘too much’.
Only thing I’ve managed is 1 episode of Astrid: Murder in Paris (awesome show) and several hours of live streams of birds’ nests (thank you, BBC Spring Watch!) Just haven’t been able to manage the mental processing of words very well. Short concentration span too.
Could not have foreseen that today would be a crash day, let alone so severe. I was planning on a longer walk today, pushing my baseline up. Was looking forward to it. Yesterday was a milder crash day, so the whole weekend has been a fuzzy blur.
Of course, I’m craving companionship right now but would also be way too overstimulated by it. Sensory and information processing is so bad on days like today.
No one besides one loved one will see me today. This is why ME/CFS is invisible. I not only look about the same as when I’m well, but people don’t see me when I’m at home, sick. It helps me recover but doesn’t help other people understand.
"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."
on a New York Times article on a new, major National Academies report, "Long-Term Health Effects of #COVID19: Disability & Function Following #SARSCoV2 Infection"
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"
The authors emphasise orthostatic changes in cerebral blood flow, electrocortical activity, heart rate variability, or oxygen extraction, among other physiological changes, can occur in the presence of a completely normal blood pressure or heart rate response on head-up tilt table testing
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