Lynn Parramore's commends are spot on. Excellent !!
The referenced National Academy paper, as with most of their papers is hamstrung by the narrow charge they were given. ALL Academy papers suffer severely from this.
They were narrowly charged with long COVID. That is needed, but way overly narrow. They are disallowed from exceeding their charge even a little.
Further, it is very much based on economics and production, not on people's health!
I posted this thinking nobody would read it, but it’s doing the rounds online so let’s hope it spills into real life.
(I would have added an intro if I knew but everyone’s posting it with their own.)
It’s like the powers that be were giving us crumbs and now they’ve decided it’s time for the truth to start coming out.
We don’t have leaders or doctors that even know how to deal with these problems. I don’t have any answers with the world as it is other than “wear masks“
"We demonstrate significant microclot prevalence in ME/CFS and LC, with #LC patients exhibiting the highest concentration (18- and 3-fold greater than the healthy and ME/CFS groups, respectively). This finding underscores a common pathology across both conditions, emphasizing a dysregulated coagulation system."
A webpage with a thread of tweets on the paper "Monitoring treatment harm in #MyalgicE / #CFS: A freedom-of-information study of NHS specialist centres in England" from @mecfsskeptic
This is from posting pretty much solely on #MECFS , #LongCovid and related conditions and to a lesser extent chronic illness in general, which shows it is possible to build up followings on them, in case people either gave up on them or never tried.
@tomkindlon@longcovid@mecfs As someone with #fibromyalgia I find that we're mostly forgotten in the chronic illness community. While I would love to connect more, I have stopped talking about it because it's considered the "hysteria" of the modern era. I have some unique theories on what caused mine. But there is a much larger community around some illnesses than others.
I just unfollowed you because I’m not here to just read long posts and not have the chance to give any input on the disease I’ve had for 35yrs. You no longer value input from others.
"(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]"
@tomkindlon
Interesting! Great to see a study confirm anecdotal/survey evidence. Though worth noting that the sample size was too small to make any direct call on CFS: only one person had CFS before getting covid.
In 2022 Carl Jreidini wrote about taking the lead himself in his long Covid care and asked for "more collaborative, open-minded relationship with healthcare professionals".
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Karen Hargrave has written a response, “ #Longcovid: I’d rather have a well researched and well informed doctor than “become my own physician”, sharing her own and her husbands' experience with long Covid and ME/CFS, spending hours doing research and being more informed than the clinicians.”
"A new piece in The Conversation shows just how problematic it is when poorly done biopsychosocial studies claim to have documented that cognitive and/or behavioral therapies are effective—and when these questionable findings are published in high-impact journals. The headline of the article: “Success in treating persistent pain now offers hope for those with #LongCOVID.”
My response to that: “No it doesn’t.”"
It certainly is easy to fix a problem when you ignore 95% of what's happening and reduce it to simple fatigue and/or pain (which are basically the same thing anyhow, according to assorted quacks from the University of Otago.)
I am not enough of an expert to be sure, but this sounds to me like alarmist nonsense, a classic example of how on social media, we hear the most extreme hot takes
Blood brain barrier disruption and glutamatergic excitotoxicity in post-acute sequelae of #SARSCOV2 infection cognitive impairment: potential biomarkers & a window into pathogenesis
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"We have undertaken a comprehensive proof-of-concept prospective case–control study to investigate parallel changes in blood brain barrier permeability, neurochemicals, & white matter microstructure changes in #PASC CI [cognitive impairment] patients"
3/
"#PASC with CI [cognitive impairment] is associated with BBB [blood brain barrier] impairment, loss of WM [white matter] integrity, & inflammation at 3 months which significantly but not uniformly improved at 12 months. The loss of WM integrity is possibly mediated by BBB impairment & associated glutamatergic excitotoxicity"
"28.2% reported experiencing brain fog, who were generally older (mean brain fog 35.7 ± 11.9 years vs. 32.8 ± 11.6 years, p < 0.0001) and more likely to be female (OR = 1.2, p < 0.001)"
"Comorbidities included #longCOVID-19 (OR = 3.8, p < 0.0001), #concussions (OR = 2.4, p < 0.0001), and higher #migraine disability assessment scores (MIDAS) (+34.1%, all p < 0.0001)."
"At this point, we can mostly admit we “know we don’t know much” about PASC in older adults. Part of the reason for the lack of knowledge is the general limitations in the literature on #PASC"
“(Contd) The FMT group showed a decrease in ISI score (p<0.0001), PSQI (p<0.0001), GAD-7 (p=0.0019), ESS (p=0.0057) and blood cortisol concentration (p=0.035) from baseline to week 12, but there was no significant change in the control group."