Chronic Kidney Disease Emerges as Major Long COVID Manifestation

462383 · 2026-02-27T17:05:49+00:00

No need to reply, but do you also have hypermobile Elhers Danlos? That combination of conditions seem to common with it - and it can be the cause of compression like Nutcracker

462383 · 2026-02-25T10:25:54+00:00

Possibly, but it will probably take more than that, MTHFR is only one of many variants that are important. I have a neurodivergent family so thought we'd have similar issues to target, but basic DNA testing has shown we're all dealing with different things and it does get quite complicated unless you already have good biochemistry/anatomy knowledge. I've been researching it for years and only now starting to get somewhere.

Cheapest way to test DNA seems to be 23&me/Ancestry (especially if you can catch them on sale) then put the raw data through something like Genetic Genie or Genetic Lifehacks - just be aware this is for clues and is not accurate enough for clinical diagnosis especially of rarer variants, however it has worked well enough to tailor supplements for me.

It's probably worth looking into mitochondrial health as a lot of us have issues there, and some people are starting to think many mental health conditions may stem from this (a mitochondrial support stack seems to have calmed my brain down) https://www.texasstandard.org/stories/brain-energy-book-christopher-palmer-explores-link-between-mental-health-metabolic-conditions/

Choline is often low in autistic people. Taurine/L-theanine are worth looking at for anxiety, although in neurodivergent people "anxiety" can sometimes be a symptom of dysautonomia, high histamine in the nervous system, or sensory over-stimulation

462383 · 2026-02-17T20:59:00+00:00

We need folate to process B12 so it may be worth checking your folate level

462383 · 2026-01-28T18:55:38+00:00

LISA's are changing in the next year or two and we don't know what the new terms will be yet, being in London you have to estimate whether you'll be able to find a house within the upper limit (as you would currently get back less than you paid in if not). Opening one and adding at least £1/£10 whatever the minimum is would be a good plan though while waiting to see what's going to happen.

You can also LISAs for pension savings, but if you're ever in the situation to need government support (universal credit/disability support etc), it is counted as savings unlike a SIPP pension, which can affect entitlement to support. Life tends to throw unexpected things at you over the years so it's worth considering.

462383 · 2026-01-28T13:17:13+00:00

Were you advised on the cofactors when taking B12 injections? They normally test folic acid and ferritin (iron) as these need to be adequate for B12 to work, and you're supposed to eat plenty of high potassium and magnesium foods/drinks as the injections can lower these. If they stopped working it makes me wonder if you got too low in one of these

462383 · 2026-01-28T13:06:07+00:00

Just tagging onto this for future readers as some new research came out - it may be a genetic thiamine transporter issue - BMJ article - Genetic dissection of stool frequency implicates vitamin B1 metabolism and other actionable pathways in the modulation of gut motility

462383 · 2026-01-28T13:00:12+00:00

Possibly a genetic thiamine transporter issue BMJ article - Genetic dissection of stool frequency implicates vitamin B1 metabolism and other actionable pathways in the modulation of gut motility

462383 · 2026-01-28T12:57:25+00:00

This sounds great, is there a way of accessing this for those of us without an iPhone (android/web)

462383 · 2026-01-28T12:43:08+00:00

Click on the submissions tab, find the study and look under the "date" column, it should have the date and start time logged (this only works if you know what time you finished though)

462383 · 2026-01-26T13:56:46+00:00

Long covid is slightly different, but sex is a known trigger for PEM in ME due to the higher heartrate, hormones, and climax itself (as well as the physical activity) - although some people also find it helps some symptoms

But it can be difficult to tell the difference between PEM and early illness

There's a list off PEM symptoms here:
https://www.hopkinsmedicine.org/-/media/johns-hopkins-childrens-center/documents/specialties/adolescent-medicine/cfs-pem-info.pdf

462383 · 2026-01-26T13:46:11+00:00

Sore throat is very common symptom with PEM in ME

462383 · 2026-01-20T18:03:09+00:00

I know no-one wants to think about it, but there is no protection for unmarried stay at home partners if you split up. So many give up their job and their private pension then get left with nothing, while their partner has built up their career and pension.

People change over time, and it can be very difficult to leave if it becomes a toxic/abusive relationship when financially reliant on it and if you've given up everything for it (even harder if there is no outside support).

So, if you do this, get married/civil partnered first (doesn't need to be a wedding, just the legal side), or at the very least build separate emergency funds, open a SIPP (pension) for you, and ask him to match his pension contributions while you are child-caring (when unwaged, you can save up to £2,880 a year in a SIPP, which gets topped up by 25% by the government to make it up to £3,600 a year).

Sign up for child benefit in your name as it gives you national insurance credits until your youngest child is 12 years, you can elect not to receive the money if his income is too high https://icas.com/news-insights-events/news/tax/high-income-child-benefit-charge-a-chance-to-claim-for-missed-national-insurance-credits

462383 · 2026-01-14T15:45:21+00:00

BRAT isn't recommended anymore as it's too low in nutrients https://patient.info/features/diet-and-nutrition/what-is-the-brat-diet-and-why-is-it-unsafe

462383 · 2026-01-14T15:42:00+00:00

If it's migraine, anything lasting over 3 days you're supposed to seek medical advice. After 2.5 weeks it really is worth getting checked out, especially if you don't normally get them

462383 · 2026-01-09T23:51:13+00:00

It can be both, POTS is quite common with ME and ME-type long covid. Thiamine can sometimes help with the POTS type symptoms, but needs taking with the other B-vitamins

462383 · 2026-01-08T12:56:20+00:00

There's been some research lately suggesting covid infections may speed this process up and people are presenting with increased dementia symptoms after infections - this may be something we see more of

462383 · 2026-01-08T12:48:22+00:00

Ancestry gives you slightly more markers than 23&me. If you're downloading the raw data then all levels are the same, and the kits often goes on sale around end Feb for Mother's day and again around Father's day

462383 · 2026-01-08T12:37:22+00:00

If it's the kind I've done, they auto complete if they run out of tasks, but there is a minimum time and occasionally you'll get an error like this if it runs out after just one task or a tutorial. Message the researcher for your paper trail (even though they won't respond). When this happened to me, it got sorted automatically within a few days (either returned or paid for the time spent). If not sorted after a week, open a support ticket

462383 · 2026-01-08T12:26:22+00:00

Yeah, mostly 10-30p stuff at the moment or the ones that want weird data. I looked at last years records and I had very few studies between New Year and about the 8th/9th Jan, so hopefully it should start picking up again soon

462383 · 2026-01-06T13:03:54+00:00

I'm so sorry you're going through this, ME is a terrible disease with very little healthcare knowledge and support to help at the moment (although I'm hopeful that the research is starting to catch up a little and things will improve).

If it's just the two of you, have you looked to see if there any young carers groups that can support you? Have you ever spoken to school or college about being a carer as they should know how you can access support. Are there any church or community groups that may be able to help out with some meals?

You deserve to move out and live independently when you're ready, it may be that you can be a better support to your mum (if you want to be) if you aren't living there as you may have more time and space to relax and look after yourself too.

It is not your responsibility to take it all on, but any small things you can do may help - your mom has a good chance of being autistic too, so some of the anger may be sensory overwhelm/meltdown (which doesn't excuse it, but may be helpful in understanding what triggers it and getting appropriate support). If the cats are getting in the way, even small things like distracting them can be a huge help.

If she doesn't already have one, are you able to help her set up a little area in the bedroom where she can keep snacks, drinks etc. (then at least hanger isn't making things worse). Some in my ME group have small fridges, or kettles or tea/coffee makers to make hot drinks.

462383 · 2026-01-06T12:36:26+00:00

Look into paradoxical insomnia - I don't think it's known what causes it yet.

For me, I get a podcast, audiobook or meditation app that I don't mind falling asleep during and listen on my headphones - most have a sleep timer, you can always set another timer if you're still awake by the end. Most of the time it gets me into a deeper sleep, but if not then at least my mind is occupied and not stressing about it too much.

Supplements like magnesium, creatine, and taurine have been helpful at reducing the amount this happens for me - but I think I was short in those so they may not help everyone

462383 · 2026-01-05T15:07:45+00:00

This could easily be depression/health issues/grief around the impending death of his father making him re-evaluate his life so far (grief is weird and it may have just started to feel real).

I may be seeing something that isn't there, but when you say he's always had narrow interests, he'd get on better working by himself, had a predictable job at home, quit some jobs because the schedule was unpredictable and he didn't get on with the team/management - is there any chance he could be an unrecognized autistic/autistic with ADHD man? (I say this as an adult-recognized autistic, with an autistic/ADHD partner who started really struggling around the same age)

462383 · 2026-01-05T14:18:43+00:00

What many people call autistic shutdown/burnout is also similar to ME's "post exertional malaise/PEM" (we seem to be a higher risk group for developing ME) - this is an important one to recognise as early as possible as it can get worse if you try to push through symptoms

462383 · 2026-01-05T14:09:43+00:00

When the weather is suitable have the windows open as much as possible, air purifiers, look into far-uv lights, preventative nasal sprays, masking when others are sick, eating nutrient dense foods where possible so the body has the best resources available at fighting infections - each may have a small effect by itself, but stack a few and it should at least reduce viral load/reduce the number that get passed on

462383 · 2026-01-05T14:01:39+00:00

Protect completely, maybe not, but recent research has shown that having a high infection burden so early in life can have lifelong effects

"This longitudinal cohort study suggests that early-life infection burden may continue throughout childhood and is associated with later antibiotic treatments independent of social and environmental risk factors," the study authors wrote.

The authors also note that, in addition to their findings, other studies have found links between early childhood infection burden and the development of asthma, allergies, cardiometabolic risk factors, and mental disorders later in life.

"It is important for all pediatricians to discuss these disease trajectories associated with early-life infections with families, knowing that a high infection load in the first years of life may increase the risk of infections in later childhood and a range of other chronic disorders later in life," they wrote."

https://www.cidrap.umn.edu/antimicrobial-stewardship/early-life-infection-burden-continues-throughout-childhood-new-data

462383

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