This is a project I have been working on for a while.
Grateful to David Tuller and the local hosts: Vera Kindlon (Assoc trustee), Audrey Lodge, Ashling O’Leary & Michelle Dinn, Sarah Warde, Orla Ní Chomhraí (Assoc trustee) & Ruth Flood @roothflud . 👍
@tomkindlon one of the most important factors imho is presence of PEM. That makes for a big difference in managing symptoms / trying to live with LongCovid or ME or CFS
This was the week I learned about ExWell Medical, an exercise programme that older people are referred to by their GPs often after covid infections. The programme has an induction that includes baseline fitness test with no monitoring of heart rate, blood pressure etc (according to a friend). Surely this is contraindicated for #LongCovid#ME etc? @longcovid
@oftencalledcathy it was a bit cynical response on this irresponsible way of testing. Analogy to Shoot them all and God will sort them out 🫣 @longcovid
Second, is a "duel" task test a typo? I mean, it does often feel like I'm dueling with certain doctors, but I hope they don't make it a literal duel! ⚔️
PS. They also offer a "cognative" test which is cause for concern…
I don't care about spelling errors from regular folks - I make them too! But errors in official documents make me feel like they don't pay attention to details, so I worry that they also don't pay attention to patients?!
@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.
"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."
Study of 11 #LongCovid vs 34 healthy patients transcriptome at day 14 of Covid infection. "We identified 26 upregulated genes in patients experiencing long COVID. Dysregulated pathways including complement and fibrinolysis pathways and IL-7 upregulation."
"The Long-COVID group showed fewer correct responses, made more task attempts, and invested more time in the iVR-based OLM task than the Control group. Delayed memory was more severely altered than immediate memory in Long-COVID participants."
“A range of conditions including Guillain-Barré syndrome/cognitive deficit/insomnia/anxiety disorder/encephalitis/ischaemic stroke/mood disorder exhibited a pronounced increase in long-term risk”
"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.)
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".
2/
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.”
"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."
"Passive transfer of IgG from patients to mice led to increased sensitivity & pain, mirroring patient-reported symptoms. Similarly, mice injected with IgG showed loss of balance & coordination, reflecting donor-reported dizziness"