@trendless I got a Garmin specifically because people I know with chronic illness were using it for pacing! But if they already have something that works then that's a bonus. Also, unrelated to your specific q, there are several presentations on YouTube from Dr Ric Arsenau that are extremely helpful. He is an me/cfs and Long Covid specialist in Vancouver.
@trendless No LC experience, but speaking from MEcfs:
b) I'm not really sure what counts are surface-y where you or the family member lives, so I'll just recommend having the thyroid checked and checking for a B12 vitamin shortage. At least over here, surprisingly many doctors don't check for B12 shortage because it's rare and it takes years to develop because there's a large storage in your body. But I've heard so many people with ME tell me about managing their shortage, that I think it's more common than is known.
My theory is that many people get ME/cfs after EBV, and EBV can also ruin the stomach over time. Maybe other viruses can do that too? Certain parts of the stomach are needed for creating intrinsic factor, which is essential for being able to absorb B12, so without IF you can't get enough of it through food or regular supplements. If B12 gets too low, one gets anemic and it just gets worse and worse, with nerve and brain damage etc. B12 injections or B12 supplements under the tongue solve at least that problem so easily, that it's always worth looking into.
Also it might be worth it to check some patients websites for people with ME/cfs, many contain a list of the most important things to check for in blood tests!
a) I think the unpleasant answer is lots of trial and error and learning over the span of months or years, unfortunately. And you're probably already aware of all the pacing guides. But some things I've adapted to:
Tracking my heart rate. I've found many guides that explain that you need to measure your resting heart rate and then always stay below that + a certain amount of beats or % added. This hasn't worked for me, it was simply impossible (maybe because of pots too). But I've found some numbers for me that predict things quite well. If I go over 140, good job I messed up, there's going to be consequences, possibly a crash. If I go over 130, better watch out and rest asap, maybe I can escape severe consequences. If I remain between 60-120 as much as possible, I'm doing okay.
Not just the immediate heartrate, but also the pattern of how quickly it rises has helped. If I do a very small task in my house, and my heart is 90-110, that's okay. But some days I start the small task and within a few minutes I'm already going near 130. It's a sign that I wasn't as rested or well off that day as I thought, and I need to rest and be careful. Over months I've come to expect certain heart values with certain activities and if the heart rate starts to differ from that, I quickly know: oh, oh! before going too far.
Heart rate variability seems to give way more predictable and accurate information to many ME-ers, but it's hard to measure with cheap and convenient equipment. I have a bracelet that measures it so-so with a measurement they call 'stress'. It gives me information about how heavy something was to do the day after mostly. Usually my graph has blue/green bars, but when I do something that was unexpectedly tough for my body, I spike in yellow/orange bars the day after, or sometimes even the night immediately after the activity.
I think there's value in body signs that aren't easily tracked with accurate measurements. It's a feeling you build over time. Noticing that your body feels very heavy, or that your muscles are cramped, or that nausea rises if fatigue is too bad, or your body temp is starting to get low, or that tremors are coming to your hands, general dizziness -it could be anything. Noticing these in time as a sign of pre-crashing/too fatigued, helps with making the consequences less dire. For example, when I feel my body gets too cold, I get a warm water bottle and wrap myself in blankets. I might feel silly doing that, but it prevents me from losing even more energy on keeping the body warm.
It might help to note down these kind of body functions at first, to start seeing a pattern, although they start to feel very familiar over the years.
Anyway, I won't spam you any more 😆 , but these were the things that I thought of immediately. I'll add some extra hashtags, maybe someone else has some more information?
> Loblaw Companies Ltd. set an all-time high for the second time this week as Canada’s biggest grocer rallied on a fourth-quarter earnings beat and expansion plans.
I can't begin to say how much this gouging infuriates me. I shop sales, so I know what the prices were in the past and the almost doubling of a lot of items. I paid 2.50 for a medium-sized tomato. Not to mention how incensed I get when my groceries are delivered to find appalling amounts of shrinkflation ON TOP of the rise in price.
They say the economy is fabulous. For whom????
And we are helpless to stop it and no one will regulate this.😡 :headdesk:
• In 2018, Boom et al. stated that ethylmercury does not cross the blood-brain barrier.
• Ethyl- and methylmercury cross the blood-brain barrier using the same LAT system.
• To date, 22 studies show that ethylmercury exposure results in mercury in the brain.
🔗 Examining the evidence that ethylmercury crosses the blood-brain barrier; Janet K. Kern a b c, David A. Geier a b, Kristin G. Homme d, Mark R. Geier; Environmental Toxicology and Pharmacology
Volume 74, February 2020 https://www.sciencedirect.com/science/article/abs/pii/S1382668919301875
For anyone who wants to help test, I'd like to trial using Matrix for a voice chat at some point this weekend. If you've got an account on #ZeroesCA, you can get on https://talk.zeroes.ca without much friction. For folks elsewhere, all you need is a Matrix account on a federated server.
> We enrolled 33 post-COVID patients, all self-reporting cognitive difficulties, and a matched control group (N = 27) for cognitive and psychological assessments. Our findings revealed significant attention deficits in post-COVID patients across both neuropsychological measurements and experimental cognitive tasks, evidencing reduced performance in tasks involving interference resolution and selective and sustained attention. Mild executive function and naming impairments also emerged from the neuropsychological assessment. Notably, 61% of patients reported significant prospective memory failures in daily life, aligning with our recruitment focus. Furthermore, our patient group showed significant alterations in the psycho-affective domain, indicating a complex interplay between cognitive and psychological factors, which could point to a non-cognitive determinant of subjectively experienced cognitive changes following COVID-19.
> Dell's "return to office" mandate has left employees confused about which offices they can use and the future of their jobs – and concerned the initiative is a stealth layoff program that will disproportionately harm women at the IT giant.
> The Wistar Institute's associate professor Mohamed Abdel-Mohsen, Ph.D., has demonstrated, with his lab and collaborators, a connection between viral damage to the gut and premature biological aging.
> the investigative team analyzed colon, ileum, stool, and blood samples from people living with chronic HIV infection and well-matched controls. Their analysis revealed a significant connection between disrupted gut microbiomes, increased intestinal permeability (leaky gut), and faster biological aging.
> Notably, they observed a connection between accelerated biological aging and the microbiomes of both the colon and ileum, but not the fecal microbiome. This suggests that the location of the microbiome significantly impacts its effects and highlights the importance of sampling intestinal tissues to accurately understand the connection between the microbiome and age.
🔗 Shalini Singh et al, Distinct intestinal microbial signatures linked to accelerated systemic and intestinal biological aging, Microbiome (2024). DOI: 10.1186/s40168-024-01758-4
> Scientists are investigating whether an oral drug sprinkled with gold nanoparticles could one day treat neurodegenerative diseases like Parkinson's and multiple sclerosis.
@trendless Interesting especially as I have MS. Expect it will need more research, clinical trials. I find the different areas of research to be fascinating. Never stop learning.
> Patients with Long Covid symptoms produce an antiviral protein called interferon-γ persistently until their symptoms resolve.
Abstract: after acute infection with severe acute respiratory syndrome coronavirus-2 (SARS-CoV-2), a proportion of patients experience persistent symptoms beyond 12 weeks, termed Long Covid. Understanding the mechanisms that cause this debilitating disease and identifying biomarkers for diagnostic, therapeutic, and monitoring purposes are urgently required. We detected persistently high levels of interferon-γ (IFN-γ) from peripheral blood mononuclear cells of patients with Long Covid using highly sensitive FluoroSpot assays. This IFN-γ release was seen in the absence of ex vivo peptide stimulation and remains persistently elevated in patients with Long Covid, unlike the resolution seen in patients recovering from acute SARS-CoV-2 infection. The IFN-γ release was CD8+ T cell–mediated and dependent on antigen presentation by CD14+ cells. Longitudinal follow-up of our study cohort showed that symptom improvement and resolution correlated with a decrease in IFN-γ production to baseline levels. Our study highlights a potential mechanism underlying Long Covid, enabling the search for biomarkers and therapeutics in patients with Long Covid.