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?!
@mecfs@halcionandon@longcovid I haven't. I'm using 3x 600mg Acetylcysteine daily, which gives me Energy. And cold showers in the morning which helps mitigating symptoms.
Ok I see. Im glad it works for you. She recommends testing to see levels first and prefers pregnenolone in general from the Dr Myhill pages I read. I guess it depends on what you have going on.
There is also the small problem of DHEA being illegal in Australia & only available as a compounded prescription. The laws changed recently and I didn’t know. Not sure about pregnenolone.
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“
4/
Extract:
“There is little evidence to suggest that poor fitness is the explanation for PEM – the characteristic worsening of symptoms following exertion – which in many cases does not involve physical
activity at all …”
@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
"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
Neurologically triggered PEM can occur without exceeding a heart rate threshold and is not the result of ventilatory anaerobic threshold problems.
Heart rate-based pacing is helpful for PEM triggered by physical activity, not for PEM triggered by cognitive, sensory, or emotional exertion. The only thing that works for my neuro PEM is timers and carefully calibrating the types of activities I do.
"In this work, an interventional method is developed to identify & remove the traveling microthrombi using targeted-magnetic microbubbles (TMMBs) & an interventional magnetic catheter”
New pre-print:
Circulating microclots are structurally associated with Neutrophil Extracellular Traps and their amounts are strongly elevated in long COVID patients
"Our study revealed that NETs may be a component of circulating FAM, suggesting that higher NETs formation promotes the stabilization of FAM in the circulation, leading to deleterious effects which (in part) may contribute to the symptoms of LC."
"We found people with #longCOVID are using commercial fitness tracking technologies in unanticipated ways to collect data such as heart rate, number of steps and sleep quality”
“(Contd) These technologies were used to understand the enigmatic long COVID illness and manage symptoms through pacing energy through finding correlations between activities and their impact on their self-tracked data."
"We performed whole-body positron emission tomography imaging in a well-characterized cohort of 24 participants at time points ranging from 27 to 910 days after acute SARS-CoV-2 infection using the radiopharmaceutical agent [18 F]F-AraG, a selective tracer that allows for anatomical quantitation of activated T lymphocytes"
From Germany:
Targeted metabolomics identifies accurate CSF metabolite biomarkers for the differentiation between #COVID19 with neurological involvement and CNS infections with neurotropic viral pathogens
"The observed metabolic alterations in CSF, combined with changes in standard CSF parameters, lend further support to the notion that neurological deficits in #neuroCOVID patients are mediated by host-derived factors rather than viral replication in CNS."
@tomkindlon@longcovid@covid19@auscovid19 I have shared the invitation to the post Covid seminar, in the Swedish Facebook group for long Covid, as well in my normal Facebook flow.