Stay sharp, stay safe; get caught up on #Covid prevention and news. This week:
-UK: 5 dead from Arcturus
-WHO: 1 in 10 infections result in #LongCovid, 100s of millions “will need long term care”
-Hospital outbreaks 2 weeks after ditching masks
-Australia: $50M to study #LongCovid impacts
-Global deaths approach 7M
-4-25% of kids get long covid; many had no symptoms
-Florida Surgeon General personally falsified vaccine study results
Six year ago, I returned to NIH in Bethesda, where I started my career as a science writer, to be a patient in an ambitious study to understand the patho-biology of post-infectious myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).
The study included 30+ researchers & many substudies, and was essentially a fishing expedition to understand what goes wrong to make us so sick (like bedbound-for-years sick). 1/24
#LongCovid is, in many cases, ME/CFS. In May 2020, @Bether and I warned that this would happen in pages of the Washington Post. The article was extremely well-read - it was on the homepage for over 24 hours, a rarity - but it also hit the same weekend the George Floyd protests started. If not for the protests, I'm quite certain we would've gotten good TV and radio pick-up (broadcast people look at the top articles on WaPo and NYT and follow those stories). 19/
I lament the lost opportunity here. If the study ends up revealing key patho-biology of ME/CFS (please g*d, I hope it does), that information could have informed the studies of #LongCovid now underway. Instead, we now have to wait for a journal to accept the article & publish it. 20/
My mother works in a nursing home in The Netherlands.
Her co-worker got #covid, which resulted in blood clots, a leg amputation and diabetes. Another co-worker stopped working due to #LongCovid after an ICU stay. Many more have to call in sick very often, my mother too.
Residents are starting to get strokes more often than before.
Most of the nursing personnel didn't get vaccinated because they believed it would make them infertile.
Nobody masks. Everyone there believes #covid19 is mild.
The Emerge Australia Research Digest (094):
"summarises research studies investigating the impact of
exercise on post-exertional malaise, offering invaluable insights into exercise pathophysiology for both ME/#CFS & #LongCOVID...also highlights the long-awaited report from the parliamentary inquiry into Long COVID, which also includes a recommendation for more research & patient support for those living with #MECFS"
“Reported deaths from #covid (have) fallen by 95 percent since the beginning of this year... but an estimated one in ten infections now lead to what is commonly known as #LongCovid, “which suggests that hundreds of millions of people will need long-term care.”
WHO chief Tedros Adhanom Ghebreyesus
People have convinced themselves that all COVID risks are passed, but only some have. More need to realize the long-term risks of repeated infections.
@barubary Yep - just found it myself! :D Thanks very much. It's been many a decade since I last really worked with Perl and with #longcovid#brainfog , trying to remember the simple things can be tricky!
Bottom line: I apparently have a reactivating of EBV (Epstein Barr virus) or CMV (Cytomegalovirus; or both, it happened after the first time I had COVID) which caused a lot of inflammation, EVERYWHERE but ultimately led to congestive heart failure.
PERMANENT Congestive heart failure. (Still waiting for test results on any damage to my kidneys)
I’m extremely fortunate it was caught in its early stages, EXTREMELY FORTUNATE.
(2 of 3)
I’m not ‘average’ in terms of health; I’m 68, have had Multiple Sclerosis over 40 years, have Hashimoto’s disease, kidney problems, and a rare bleeding disorder. I was always in a group at higher risk from COVID.
Please, when you’re out in public, if you’re feeling the least bit ‘off’, wear a mask. For people like me, for people like my son who is my caregiver & is somehow blaming himself for getting exposed at work. . .
Masks aren’t a 100% solution but they do make a huge difference for so many of us.
Long COVID’s Lingering Impact: Brain Function Changes Can Persist for Months
People with long COVID have abnormal brain activity during memory tests, months after their initial COVID-19 infection, with less activity in the regions normally used for memory tasks, but more activity in other areas of the brain.
"In those who had been diagnosed with mild COVID-19, artery and central cardiovascular function were affected by the disease two to three months after infection. Side effects include stiffer and more dysfunctional arteries that could lead to cardiovascular disease development."
Deadline for comments is June 26th. If you know of anyone who has Long COVID please pass this along to them or to someone who cares for them. We need to make our government organizations see how urgent it is to start developing treatments for this.
Next panelist: 38-yo, active lifestyle before long covid, spent significant time in ICU. Things that have made clinical trials more difficult for them: accessibility, financial and otherwise; in-person visits that could be done via telehealth.
Also:
–says some studies are expensive; one would've cost patient between $3-10,000.
Caller continues... also says more outreach is needed when trial results are available, so that medical professionals can be aware; says clinical trials need to take into account diversity of participants.
Strong, well-researched, scary piece on Long Covid, which is no freaking joke; one of my loved ones is struggling with what I suppose is a relatively mild case and this creates quality-of-life problems you don’t want to have.
@timbray@hko My suspicion is that the "popular" media's only take-away from this will be "Oh, see, #LongCovid isn't that special, it has happened for other virus infections too" ...