My daring/foolish second Shingrix dose

ME/CFS, vaccinations, and immune dysfunction

“Hi, Paul!” the pharmacist called out when I entered my quiet little neighbourhood pharmacy. “Ready for your second dose of Shingrix?”

“Hell no,” I laughed.  “I’m actually nervous! That first dose was rough.”

“I know, I know,” she said. “We’ve actually seen quite a few people choose not to get dose two because of the side effects of the first.”

Good to know.

“And I’m really sorry to say this,” she added gently, “but the second dose is often worse.”

Not good to know.  But I already did. That’s partly why I waited so long. The other reason is that my first dose side effects were a bit extreme. Shingrix vaccination against shingles is notorious for strong side effects, but mine were ridiculous.

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Today’s post is my exploration of why immune system fuckery is probably my least bad explanation for my chronic health problems, and how that hypothesis is my Shingrix experience supports that speculation. If you’re new here, the important context is that my illness is a lot like long COVID but hit me after a severe respiratory tract infection in 2015.

The absurdly shitty side effects of the first dose

My first Shingrix dose was almost six months ago, the longest I could possibly wait before getting the second. If you miss your deadline, you have to start over!  [Apparently not. My pharmacist told me that, but … nope, you just don’t.] I procrastinated because I was truly spooked.

The side effects weren’t just rough: they seemed to make my usual health bullshit permanently worse.  I didn't just have a savagely sore shoulder a day or two of feeling sick. I felt sick for two weeks, and then never fully recovered.

But hey, I was half-protected from shingles, so… yay?  (Or maybe one dose offers less than half the protection you get from a match set? Or maybe more?  🤷🏻‍♂️)

That post-vaccination malaise — which many of you know all too well, but not everyone has had the displeasure — is extremely similar to my usual symptoms. So it just feels like my usual problems got dialed up a lot in the short term, and then moderately ever since. Numbers: if I was cruising along with a badness score of 5 before the vaccine, it shot up to 8 after the jab, then I spent a couple weeks at a 7, and then finally settled at a 6… permanently.

I just never saw 5 again.  I miss 5.  (I also miss 1 through 4, but I can hardly remember what they're like anymore.)

"If the second dose is worse than the first," I told my sympathetic pharmacist, "then I’m really going to regret this."

"Sure you want to go ahead?"

"Yes.  I also really, really don’t want shingles."

I hate to blame any vaccine for anything

Shingrix was my worst experience with vaccine side effects, but not the first. I’ve had a rough ride with other vaccinations over years, but especially the COVID vaccinations.

I am uneasy writing about my vaccine side effects, because I do not want to seem as fearful of vaccines as I feel. I don’t want to stoke any of the fires of vaccine hesitancy. I don’t want to give a single militant antivaxxer the slightest satisfaction or ammunition. I don’t want to be mistaken for one of those antivaxxers who say: “I’m not anti vaccine, but [vomits antivax talking points].”

And I’m risking all that based on my highly unreliable personal anecdotes.

I truly cannot know that Shingrix actually did a number on me, or if that's even possible. There's no doubt that it feels like it did, but maybe my post-vaccine decline had nothing to do with the vaccine.  Maybe my December was going to be grim no matter what.  As a card-carrying skeptic, it’s in my contract that I must now pound the table while shouting correlation is not causation!

There’s no conclusive science on this, but here are some research-inspired reasons to be very cautious about concluding that vaccines might cause prolonged malaise:

• It’s clear that at least some vaccine side effects are some kind of kooky psychosomatic self-fulfilling prophecy. There’s a bunch of data on this, and it’s all rather weird. Probably the most dramatic example: people experienced many “vaccine side effects” even when the were actually getting a placebo. Another good recent example: fear of vaccination side effects predicts side effects! The scared people get the side effects. That’s scary!

• The HPV vaccine allegedly causes severe and prolonged side effects consisting of many non-specific symptoms. And maybe it does. But a Danish analysis of case reports concluded that it’s more likely that the symptoms were a nocebo caused by media hype about side effects, rather than the vaccine itself.

• This isn’t about a vaccine, but I think it’s a great adjacent example: the ongoing controversy about the cholesterol-wrangling drugs (statins). Do they cause muscle pain? In one corner looking enraged: an army of frustrated patients with their compelling anecdotes (and I know some of them). In the other corner, calm and clinical: hard evidence undermining those stories big time, like the one that showed that statins didn’t boost muscle risks in patients unaware they were taking them.

You could be forgiven for reading the above and thinking, “Wow, I guess everyone who ever claimed to have vaccine side effects is a deluded fool.” As well all, know medicine is a perfect gentleman, and would never twist the facts to gaslight “difficult” patients, especially woman and other weirdos with their weirdo complaints. 🙄

Now swinging the pendulum back the other way…

Vaccine side effects are obviously real, and they definitely include feeling just generally awful, so it’s not exactly crazy to think some people might get it worse/longer — for biological reasons, not psychological ones.

Maybe my vaccine seemed to cause a severe reaction because it did. Not every correlation is a coincidence. Correlation may not equal causation, “but it sure is a hint” (Tufte). In fact, it is one third of any causation puzzle. Formally, establishing causation requires three things:

1. a correlation (association)

2. knowing the effect followed the cause (directionality)

3. eliminating flukes (non-spuriousness)

Ticking off all three is a high bar, rarely cleared by science. (Establishing non-spuriousness is particularly tricky and fuzzy.) And actually it’s even more complicated (see this charming explanation of the Hill criteria using xkcd comics.)

Life is rotten with correlations, and many of them have an explanation other than cause and effect. But not all of them. Literally every casual relationship is also a correlation! True story.

xkcd #552 by Randall Munroe

And there is some indirect evidence that vaccines do, in fact, tinker with immune function in ways that could be a problem for some people…

Vaccines and ME/CFS

I can’t find any rigorous documentation of vaccines exacerbating chronic unexplained illnesses like myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). There are anecdotes, of course. For what little it is worth, #ME Action reports:

A subset of people with myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS) are reporting adverse effects from getting vaccines and boosters from all manufacturers. There are also rare reports of people without pre-existing conditions developing Long COVID and ME/CFS symptoms after getting a COVID vaccine, and we suspect the same underlying immunological response is at play.

And it really is clear — and this just in — that folks with long COVID probably do have significant immune system dysfunction.  (Reminder: there’s so much overlap between ME/CFS and long COVID that they are practically the same topic.) Yin et al. found three examples:

1. “Profound changes” in T-cells strongly suggesting an “ongoing immune response” was present in the long-COVID patients.

2. But, weirdly, that persistent response was probably not to COVID, but to other pathogens, like herpesvirus (e.g. Epstein-Barr virus).  It may also be a prolonged autoimmune response.

3. And yet there was also evidence of lingering COVID infection (viral reservoirs), inferred from higher SARS-CoV-2 antibody levels, and from “exhausted” T-cells (which may be  implicated in ME/CFS).

And this probably isn’t all just a COVID thing.  Many viral infections have a “long” version, powered by similar mechanisms to varying degree. It’s just that COVID is common, severe, and in the spotlight.

Vaccine side effects vs infection complications

If viral infections can provoke immune dysfunction in some people … then vaccines probably can too. Because most vaccine side effects are tame versions of what infections also do to people.  For instance, flu vaccines cause Guillain-Barré syndrome once in a blue moon.  Guess what else causes the dreaded GBS? And much more often? 

Influenza itself. 

This simple principle is greatly under-appreciated.  Hundreds of millions of people fear vaccine side effects without understanding that infections cause even more of the same (I did for years).  We call them side effects if they are caused by vaccination, and complications if they are caused by infection, but they have the same nature.

That insight is a game-changer for a lot of people.

The wide brush explanation for that is clear: both vaccines and infections challenge the immune system, which doesn’t always go well. Vaccines are gentler and simpler than infections, so they don’t push as hard, and so there’s less collateral damage, but it’s the same mechanics.  Just like it’s almost impossible to put out fires without some water damage, immune function often involves some collateral damage.

My reluctant hypothesis

Considering all of the above, two things seem quite plausible to me:

1. I’ve been suffering from some kind of immune system fuckery for many years now.

2. Any vaccine or infection has the potential to make that worse.

And the ferocity of my vaccine side effects, and their similarity to my symptoms, tend to support both of the above.

I have 36.2% confidence in this hypothesis. Not great. But also more than I have in several other explanations for my chronic health problems.

But I went ahead and got Shingrix #2 anyway! So brave! Or foolish!  They're so hard to tell apart.

So how is it going with Shingrix #2?

Just fine!

I had one day of full blast malaise, and I’ve been fine ever since. Better than my pre-dose-two baseline, in fact. I’ve had two more quite good days now.

I was more afraid of this vaccine than I have ever been of any medical procedure, a perfect storm for a nocebo … which just didn’t happen.

Go figure. 🤷🏻‍♂️