Posted by Nicola Griffith
https://nicolagriffith.com/2025/05/12/some-thoughts-on-post-viral-syndromes/
http://nicolagriffith.com/?p=77500
As far as I’m aware I’ve never had Covid but I have twice been through long-term post-viral illness and have some thoughts I’d like to share. Those with ME/CFS and/or Long Covid and/or MS may or may not—we’re all so different, and different viruses will lead to different long-term sequelae—find some of this helpful.
Before we go any further: Please remember I am not a medical professional, merely someone who’s learnt some stuff related to my own particular sets of physical dysfunctions. Approach what you read here critically: do not do anything you learn from this post until you’ve done your own reading—there are many (many!) high quality open-access articles available if you search—and then talked to an actual medical professional. Clear? Good.
The first time I went down with a mystery illness I was 8 or 9. I was always a hyperactive child: one of those nightmare children who barely slept (I still sleep much less than most people—though a vast amount more than I did) and was always getting into trouble because I just wouldn’t stop. I had no off switch, really. Always running, jumping, rolling, climbing, singing at the top of my lungs. The only time I was still was when I was reading. Then one day I got a headache that got worse and worse, with a fever that went up and up. And up. By the time the ambulance got me to the hospital it was at 106 and climbing. I remember lots of white coats, ad people rushing about, and the horrors of an ice bath, but mostly I remember the headache—it was scream-worthy pain. And then the blood tests—every couple of hours—as they tried to figure out what was wrong and how to treat it. I was hospitalised for about five days. (I think. I honestly don’t remember.) Eventually the fever and pain went down; the cause remained a mystery.
I remember being sluggish for a few days, just really tired (a novel and interesting thing to me at the time). But I went back to school. And then a week or two later it happened again. Again the fever. Again the endless blood tests as they tried to identify what everyone assumed was an infectious agent. Again eventually it passed and, again, the virus (I assume) remained unidentified.
This time, though, when I went home I was too tired to get out of bed. After some weeks I was allowed to go to school for three hours in the morning but had to come home at lunch time. And even that was taxing. The fatigue was overwhelming; it felt like lying under an iron door that people kept adding weights to. It was tiring to breathe, to talk, to think. I couldn’t hold a book up long enough to read. It was at this point that I started to have dreams of an automatic bed I could ride around in, that cold adjust to a sitting position, that had a built-in reading arm and light, and a tube in the headboard I could suck on for things like water or tea so I didn’t have to lift a cup oro even my head. This lasted a while.
As I turned ten I was back to normal. Mostly. I was doing all the sports, back to not sleeping much and getting into mischief at all hours of the day. But I felt…different. For the first time in my life I felt occasionally fragile. Any childhood illness (cold, flu, stomach bug) would hit me really hard.
Eventually the memory of it all faded: just one of those weirdnesses of childhood. My immune system stayed slightly wonky—I got Epstein Barr and instead of recovering after a couple of days I was extremely ill for three weeks; I got a chest cold that turned to pleurisy; I got migraines that would leave me vomiting for two days every month. I just adjusted to it all, as young people do.1
I left home. Was in a band. Lived a…let’s just say alternative sort of life. Took a manual labouring job (for a while). Was in a band. Did martial arts—I looked and would have seemed to most people perfectly normal and healthy. But I wasn’t. I was prone to passing out, bad headaches, and abrupt fatigue that rest didn’t immediately relieve. By this time that was just normal for me; I didn’t think about it much.
Fast forward to age 28. I’d been in the US the previous summer for seven weeks where I’d met Kelley, and come back to losing my job, the death of my little sister, and getting a new, very stressful job (caseworker at a street-drugs agency—helping meth and heroin users). And I was missing Kelley and stressed over the upcoming choice between her, or my partner of ten years. Either choice would devastate me and hurt at least one other. Stress is a mild word for how I felt.
And then I got a virus. It felt a bit like flu—fever, chills, aches, headache, cough—but it wasn’t, and it was the worst virus I’d had as an adult. (Looking back, in light of all I know now, I’m guessing it was a corona virus—just not SARS-CoV-2.) And I didn’t get better. Suddenly I was back in the nine-year-old’s world of being crushed by fatigue, of feeling as though air didn’t have enough oxygen in it, of so many aches and pains and dizziness and absolutely no stamina at all. I was unable to work; I went on disability until it ran out.
I was diagnosed with post-viral syndrome, and then myalgic encephalomyelitis (ME). Everyone I knew—my friends, my (previous) work colleagues, my family (except my partner, right there, and Kelley, four thousand miles away)—did not believe I was ill. I looked fine, and every now and again for an hour to two I was fine, talking, laughing, cooking a meal. But the bill always came due. And every now and again some odd set of muscle groups would just…stop working properly: double vision, racing heartbeat, erratic heartbeat, unable to regulate my temperature, throwing up for no particular reason, getting cognitive weirdness. (I went to a 3-day convention in Birmingham and forgot to pack: literally, I got on the train with nothing but my wallet—no contact lens case or solution, no glasses, no clean clothes, no toothbrush. I just…spaced. I would forget ordinary words for things—like ‘chair’—or forget what I was saying in the middle of a sentence.)
Over a period of about two years all this gradually improved—to a point. I remained prone to all the above symptoms; I never walked more than half a mile again; and never ran at all, ever again. And then I started to develop other, more neurological symptoms: more double vision; clumsiness; having a hard time remembering what I was talking about when I got tired; weird paraesthesias—tingles, swarms of prickles, absolute intolerance of heat, dangerously erratic heartbeat, weird cramps and weakness—and then I began to limp. Six months later, on my first book trip to the UK, I started to fall down.
I was diagnosed with MS.
Here’s the thing: it’s been generally accepted for a while now that MS is the result of a combination of genetic predisposition; environmental factors; and some kind of bodily insult—whether emotional stress, a virus, or an injury. Many people believe MS is in fact the end-point of post-EBV syndrome—and while that of course is possible, I’ve always believed that my MS began with that coronavirus back in February 1989. Or perhaps the virus when I was 9. The point I’m trying to make is that the basic inflammatory syndrome is caused by a virus—a virus that does one or both of two things: flares up every now and again from some internal reservoir, and/or triggers an overly aggressive inflammatory immune response.
And if you look at what ME/CFS/LC/MS have in common you can see a pattern: metabolic dysfunction (how the body uses glucose vs. lipids for energy; it also affects ATP and mitochondria), epithelial permeability (whether we’re talking about the digestive system, pulmonary system, or urinary tract), aggravated inflammatory responses (whether we’re talking of the nervous system—neuroinflammation—or joints), and more.
I do not use any of the usual disease-modifying drugs (DMTs) for MS. I don’t respond well to them. I can’t use NSAIDs (ditto).2 I have had to find a variety of workarounds—many of which insurance won’t pay for because they are old and out-of-patent drugs (such as low-dose naltrexone (LDN)) or are nutraceuticals (such as ubiquinol, that is, reduced CoQ10) that are not patentable and so no one will bother running clinical trials.
Naltrexone when prescribed at the usual dosage of 50 – 150 mg is used to treat substance abuse disorders. At low doses (0.5 – 6mg) its pharmacological action is quite different. Take a look, for example at this piece on the various therapeutic utilisations of LDN and this piece on its properties as a glial cell modulator. LDN is a drug for which you need a prescription, and because it’s not a commercially viable product for Big Pharma it must be compounded, but most decent-sized towns and of course cities will have at least one compounding pharmacist—and it’s very cheap (working out at a dollar a day or less). I take one 3.75mg capsule daily—it doesn’t really matter whether you take it with or without food, in the morning or at bed time, though personally I’ve found I sleep better if I take it first thing rather than late at night.
So what does LDN do for me? One, and most importantly, within two weeks of starting it I went from having spent once a week or so for the last five years waking up at two n the morning to spend the night throwing up, having diarrhoea, and semi passing out from a kind of shock, to…never doing that again. Okay, almost never: once every year or two when I’ve subjected my system to intolerable stress and had too much to drink and eaten high-histamine food I know I don’t deal with well it’ll happen. Once every two years compared to once every week? Worth a dollar a day. How does it work? Basically it reduces epithelial permeability—or ‘tightens the holes in a leaky gut’.
But LDN has other properties. As for example a glial cell modulator it can also improve the protections of the blood-brain barrier. It reduces neuroinflammation, joint inflammation, and pain. Is it a miracle? No. Does it help? Oh, yes. And more to the point LDN is extremely well-tolerated.3 And whether or not it’s a coincidence, in the years since I’ve been taking LDN my hearth rhythms have stabilised considerably.
In terms of lipid metabolism, well, there are a variety of ways to approach improvement. The first thing I tried was diet: for many years I kept to a very low-carb regimen of vegetables and protein and good fats. (You can read all about that here.) But like most mere mortals, the better I felt the more likely I become to let things slip (“But, hey Doc, I feel so good now on these drugs I think I’ll come off them because I do’t need them any more…”). My diet is still very good in terms of what I eat—but it’s also bad with the number of ‘treats’ I allow myself: wine, beer, ice cream; potato chips and shortbread at the weekend; and sandwiches sometimes when we go out for lunch or are travelling. As a result, I’ve gained about twenty pounds in the last six or seven years. Oh, well.
There’s a vast amount of research beginning to accumulate to suggest that interrupting various parts of the metabolic cycle—whether with statins, or metformin, or GLP-1 receptor agonists (e.g. semaglutide) and/or GIPs (such as terzepatide), and at least one very promising new drug currently under investigation4 can be very helpful with various inflammatory processes, including neuroinflammation. I’ve just started a low-dose statin; assuming I can tolerate it I’m hoping it will help.
I’ve experimented with a variety of nutraceuticals over the years but if I had to pick only two it would be vitamin D (2,000 µg daily) and ubiquinol, a reduced form of CoQ10 (x 200 mg daily) which, amongst many other Good Things, facilitates production of adenosine triphosphate (ATP)—which is sort of like the money that keeps the cellular economy going; the currency and energy of life. I rarely get that the-air-has-no-oxygen feeling anymore.
The other thing is stress and energy management. This is probably the hardest thing of all because, optimally, it requires you to stop doing things—even things you love—before you get tired. Sub-optimally, stop as soon as you notice you’re getting tired. Absolutely vitally, one hundred percent necessary—and I cannot stress this enough—do not ever redline. Never, ever run your battery flat. You will set yourself back months or even years, or even wreak permanent, irretrievable damage. I’m speaking from experience here. Please don’t be me. This also applies to stress. If you have to change your job, if you have to lose friends—whatever it takes, and I’m serious about this—reduce your stress. Stress will kill you—it’s what kills even healthy people. And if you’re still reading this post it’s probably because you’re not healthy.
Sleep, too, is part of this. There are a million books, videos, lectures and articles on the Importance of Sleep. I’m not gong to lecture you here except to say: pay attention. Do the best you can.
Finally, exercise. This is a tricky one; those newly sick should consult an experienced professional; preferably a physical therapist who specialises in neuro-rehabilitation. Those of us with long-term post-viral syndromes, whether the sort that’s undifferentiated (not underestimated, not inconsequential, just to be clear) like ME or LC, or the Oh-fuck-well-here-it-is specific sort like MS, will go through different phases: relative wellness, pseudo-relapses, relapses, aggravations, deteriorations, improvements, exacerbations, and back again. Sometimes it will be most important to have absolute rest: do nothing. But often it would be beneficial to do something—and that will vary from very short and very gentle breathing exercises all the way through to cardio and High-intensity interval training. As I say, please consult a professional. But please don’t ever give up on the idea of some exercise at some point. Exercise might be the single most important healthful activity (after, y’know, eating, drinking, breathing, and sleeping) you can do.
So that’s basically it. Find a good healthcare team; surround yourself with people who love you and believe you; try not to despair. And do what you can to mitigate some of the crap that one visit from one tiny little viral particle once upon a time is still heaping upon you. There are things you can do. You are not helpless. There is hope. You are still you and you deserve a good life.
I wish you luck.
https://nicolagriffith.com/2025/05/12/some-thoughts-on-post-viral-syndromes/
http://nicolagriffith.com/?p=77500
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