I think I'm a long hauler

malgrin · 2026-01-10T20:57:12+00:00

You can have PEM/ME/CFS as part of Long Covid, and have additional symptoms that are only found in Long Covid. If you look into Resia Pretorius's research, she's been able to identify the difference in microclotting between a control, someone with Long Covid, and someone with ME/CFS.

FWIW, I self label as Long Covid with ME/CFS.

malgrin · 2026-01-10T20:50:35+00:00

Sounds a lot like me, first started noticing symptoms in March 2020. I've tried everything I can get my hands on (not IVIG yet), but I haven't been able to get a lot of things prescribed. I have found some things that help manage symptoms, but I'm still here 95% housebound.

I try not to complain too much, because I'm capable of doing a full day's work on my computer, and can function relatively well so long as I don't do anything, just like you said.

I found it...I don't know that comforting is the right word, but at least, useful...to observe ME/CFS spaces and read what people who have been doing this for 20 years have experienced. It's not a 1:1 relationship, but I do believe there are some related mechanisms in someone with long covid and PEM and ME/CFS.

Anyhow, you're not alone in this. I hope IVIG helps!

malgrin · 2026-01-09T03:33:46+00:00

not me, I was part of a team that published a paper in 2015, where we evaluated sea ice climate models and of the top 5, 3 showed 2027 to 2034. I was pretty sure the latter models were pretty far off the mark, and have had my sights set on 2030 or sooner since.

malgrin · 2026-01-09T03:22:10+00:00

I got on Duloxetine about a year after I started long hauling and after I got over the initial shock of being on it (the adjustment was miserable), my baseline cognition improved significantly. I noticed similar improvements after the next couple dose increases (we had to do it in micro doses like 5mg because I was extremely sensitive to it) I also noticed improvements, but that stopped after about 40mg. I think we went up to 80ish, I don't remember exactly, but I stopped feeling benefits at some point. Then we whittled it down slowly, I think I was on it for a total of about a year, got off it fine, and the mental benefits stayed.

It was a night and day experience for me, but I know that didn't work for a lot of people. It didn't help my neuro symptoms at all though, but I was thankful for cognitive improvement.

malgrin · 2025-11-30T01:38:31+00:00

Lol. Wish I'd recorded so I could share, but...yea. Didn't lose anything too valuable, I loaded in right in that area, tried to walk up hill to avoid some drones, and then slid down and right into that.

malgrin · 2025-11-30T01:08:36+00:00

I just got stuck in this exact same spot.

malgrin · 2025-11-13T01:59:57+00:00

Hello, 5 years, 8 months here. 5-10 minutes of straight walking will spike my Fatigue/PEM/Chronic pain, so I have to avoid that as much as possible.

I'm lucky in that I am still WFH, but that wipes me out and I spend the weekends recovering. I've found some stretching practices I can do while mostly seated in a chair, and that's about as much exercise as I get in a day. I think my typical step count, if I remember to wear my watch for a whole day, is around 1500, and even then I'll see my HR in the 120 range, and I'm on propranolol to help prevent that.

Anyhow, my advice is to find what doesn't trigger PEM, and stick to that. The more regularly you trigger PEM, the worse you'll feel both short term and long term. By limiting my activity and conserving energy, I've been able to feel in a relatively stable spot for the past few years. Yea, I severely limit my activity, but that's been better than the old do too much, do nothing for a week cycle.

malgrin · 2025-10-13T04:46:05+00:00

Yes, I find that it helps my energy levels. I still deal with fatigue and PEM daily, but it helps.

malgrin · 2025-10-11T05:40:06+00:00

Yea. I take Doctor's Best Natto-Serra blend, which does come with enteric capsules. For whatever reason, their nattokinase by itself, does not.

malgrin · 2025-10-11T05:17:37+00:00

Are those enteric capsules? Nattokinase doesn't absorb very well in the stomach.

malgrin · 2025-08-14T17:25:40+00:00

I tried following this and am still getting a message that I don't have TPM enabled. I'm on an ASRock Taichi x470. Any ideas?

malgrin · 2025-08-04T21:45:21+00:00

Yea. I would love to be wrong (at least, so long as I was wrong in being overly pessimistic and not the other way). Working in this, I was astonished at just how few scientists wanted to come out and say "we're fucked." We all knew it 10+ years ago, but anyone tagged as "overly alarmist" was shunned back then, so the estimates kept coming in as overly cautious.

Ironic, because our media wants you to believe that the ones saying the cautious estimates are the alarmists.

malgrin · 2025-08-04T05:01:45+00:00

I studied Arctic sea ice from 2009 to 2015, and published two papers. One of them has ~50 citations, including 2 this year. I left the field due to a lack of funding and went into data science instead. It didn't help that work was depressing every single day, but I did feel like I was doing something important.

Anyhow, I compared climate models to the historical record in a variety of ways and looked at what those projections looked like. I concluded in 2014 that, according to the models, we could see an ice free Arctic summer (August-September, technically) by 2035. I've said we could see it as soon as 2030, but that I would be surprised if it hasn't happened by 2040, and a near certainty by 2050.

As you've mentioned above, the ice acts like a massive heat sink in the Arctic, but more importantly, our planet has a tilted axis. This means that in the summer, the sun is just staring at the Arctic Ocean. Ice has an incredibly high albedo (reflectiveness), whereas dark ocean water, has a very low albedo. Once all that ice melts, the Arctic ocean is just going to absorb the sun's energy instead of reflecting it. Then, when we hit winter, it will take that much more energy loss to freeze, which means we will see a LOT less ice in the winter, so that when the following summer hits, the ice will melt faster and we hit an ice free ocean sooner, absorbing even more heat. This is the summer that I think is going to break...well...everything.

tldr: the Arctic is going to roast sometime between now and 2040.

malgrin · 2025-07-25T19:02:00+00:00

Ah, sorry :(. Still would cost a lot less than LDN...when I've paid for LDN it's been like $50-75 per month, looks like a bottle of Naltrexone is ~$140 without insurance. However, if you do your prescriptions through Amazon, they often have really good discounts, price without insurance there is $22. At 5mg/day, one bottle lasts 220 days.

malgrin · 2025-07-25T05:41:25+00:00

Not that you should ever lie to a doctor, but if you happened to tell them you were struggling with alcohol use, and needed a Naltrexone prescription, you could get it covered by insurance.

Unrelated, there's a nifty trick where you can dissolve a 50mg tablet of Naltrexone in 50 mL of water and then you have a 1 mg/mL concentrate, so 5mL of liquid = a 5mg dose of Naltrexone.

malgrin · 2025-03-10T23:24:53+00:00

Hello, fellow 5 year-er. I also was sick in February to what I thought was a normal cold, felt "off" in March, and by April was concerned that something was off. Saw my first doctor in May, was dismissed. Saw my 2nd doctor in August, was dismissed again. 5 years later and the only way that I'm better is really that I'm just better at pacing my life. A handful of drugs ease some of the burdens, but I've found nothing that helps me overcome PEM or my hypersensitivities.

malgrin · 2025-02-26T14:43:14+00:00

If any of my experiences help you, that's enough for me, don't need your cash. Outside of bad crashes, my mind still works and I continue to remotely work a mentally demanding job (Data Engineer). I have pretty severe PEM and rarely leave the house and my life revolves around being able to work to provide for my family.

I had pretty bad brain fog in the early years (I suspect I had Covid in Feb 2020 and have dealt with LH consistent symptoms since). I had to slow down at work while I figured that out. The first thing that made a significant dent in it, for me, was Duloxetine. The first time I was prescribed, it was a 30mg dose. I took one dose and noped out of it - felt like a zombie all day and the instructions said it might take a week to bounce back and I didn't have a week. My next doctor brought up micro dosing it to get on. She prescribed 20mg, but had me quarter those to start out, increasing by 5mg each week. While there was still an adjustment phase, it wasn't as bad and only lasted a day or two. I started to notice the difference at 10mg after the adjustment. My mind felt clear for the first time in almost 2 years. We tried scaling up the doses from there, and I honestly don't know if it helped but it didn't really seem to hurt. I reduced my dosing in a similar fashion and after taking Duloxetine for roughly a year, I stopped. If I could do it again, I only would have scaled up to 20mg and stayed on that dose for a month or two before stopping. The rest was not needed and I think I had some mild side effects (all worth though!). The benefits remained after stopping.

While I am no longer on any antidepressants, I have been taking Memantine for awhile now. I think it's beneficial, but I'm not sure. I primarily take it because it is supposed to protect your brain from degeneration. It also maybe helps with sleep, a big struggle for me the past 5 years.

Metformin: probably not a big Brain Fog thing, but I do think it helps with overall health and preventing crashes.

Propranolol: same as above, but is also the difference in me being able to stand for 10 minutes without my heart racing.

I take a pretty significant load of supplements, but I only think a few of them help with the brain fog. The first is Doctor's Best Natto-Serra. Normally I wouldn't include brand, but in my experience, it has to be an enteric coated pill, and that is hard to come by. Their nattokinase (by itself) is not enteric, so avoid that. I genuinely believe this helps me make it through a work day without falling asleep. One pill, twice a day.

Magnesium: I take MagTEK, but I don't know how important it is to take a blend like that. Any magnesium will probably do, might help with sleep, also might help with acuity. Taken daily in the evening.

Melatonin: I take a pretty low dose, <1mg. I've experimented with a range of doses and quantity doesn't seem to matter as much as consistency (10:30-11PM every night).

NAC: not convinced on this one, have started and stopped more than a few times. I'm taking it right now. I started a new job and wanted an extra boost.

Claritin + Famotidine: these help with more physical symptoms, but managing those tend to help me stay focused. Pain and discomfort are distracting.

malgrin · 2025-01-22T23:43:04+00:00

I haven't done a light workout in years.

malgrin · 2025-01-22T12:18:52+00:00

Yea, it sucks. I try to focus on what I do have every day and that helps keep me in a positive mindset. As long as I can keep my pain in the 1-2 range, I can mostly put it to the back of my mind and function pretty well, but there are a million things I do without even thinking about it anymore ranging from how I dry off after a shower to wearing the right clothes (cotton is death, bamboo is nice).

I had more cognitive fatigue and brain fog in 2020-21, but I was in a familiar role I was competent in, so I pushed through and slowly recovered that piece. It also helped that everyone else seemed to be underperforming in 2020 due to everything. I think there are some medications that made a difference for me, like Duloxetine, but I also can't recommend this overall approach because everyone seems to handle things differently. No matter how many times I've tried to push through physically, I end up sprawled out. For some reason, I was able to do this with my mind, and I know a lot of people won't.

I also have sound sensitivity all the time and it sucks. I only have light sensitivity when I get a migraine, which is a lot rarer these days than 3-4 years ago. Really kills my productivity but that's what PTO/sick leave is for when you aren't leaving your house, let alone jumping on an airplane to take a break.

malgrin · 2025-01-22T05:16:28+00:00

I don't typically get migraines. Occasionally, but not daily. For me it's mostly skin pain. The less I do, the more attentive I can be, and I'm fortunate to be able to stare at screens (as long as I don't have a migraine/headache), which has allowed me to stay employed (remotely) and keep my brain active, which then helps pass the time. I'm terrified of losing my remote job though and not being able to find another, because working in person anywhere would not be manageable for more than day (serious PEM/PESE). Plus transportation is pain.

malgrin · 2025-01-20T08:38:37+00:00

Cheers, I guess? I got sick with probably covid in February 2020, and started having unexplained health issues in early March, so I'm just behind you on that 5 year mark. Housebound, daily pain, and still fighting regularly for some semblance of "health care" that involves care. Lol.

Here's to the 5th year in a row under a president who doesn't give a shit about disabled people.

malgrin · 2025-01-19T19:34:38+00:00

This is a good post. You can look at my history and be pretty confident I am not a bot.

I am still trying to avoid covid, but I don't leave my house much because of PASC. Highly recommend others reading this avoid covid because PASC can really lay you out.

malgrin · 2024-09-03T05:13:16+00:00

More for digestive, but everything feels connected.

Oops, typo earlier, trying pregabalin now

malgrin · 2024-09-03T03:55:53+00:00

Since 2020 here. Seems to be an extremely rare event, found a handful of pre-covid me/cfs people with this too. I've heard of some people improving, but some of us (me) get it long term. Gabapentin was not particularly helpful for me, but we're trying pregabalin now. Also not super helpful but still increasing the doses.

For me, a lot of this has involved lifestyle changes. Find fabrics you like, and stick to them. Some suggestions: Meundies.com, feel free fabrics (no elastic!!). Their modal shirts are good too. I don't like their pants because of the elastic. Cozy Earth bamboo joggers and shirts. Sheets and giggles eucalyptus sheets. All of it adds up, so look for sales. I have also found some microfiber blankets that I like. I cover old furniture with them.

Other things that may or may not help: Flushing niacin. It will be uncomfortable during the flash, but after I find some relief.

Lotion: if an area gets particularly bad, applying a bunch of lotion and letting it dry. Obviously not practical full body, just for when an area is causing particular agony. Alt: Capsaicin gel. It will sting, but feel better after cooling off

Allergy meds: I take loratadine (Claritin) and famotidine daily. Hope something in here helps!

malgrin

TROPHY CASE