Covid-19 and Ehlers Danlos Syndrome

September 19, 2023 12:41 AM

I have hEDS. For me, it's not too bad. I'm reading an article that (if I understand it) says the spike protein in covid (and the vaccines) damages collagen in a way that isn't an issue for most people but is for people with EDS. I have been getting all my shots. (I am also still masking fastidiously.)

My existing symptoms possibly related to long covid:
- Getting creakier much faster these past few years
- heart not steady when I can hear it at bedtime sometimes
- recurring candida that isn't going away whereas before it would go away

Also:
- You understand that covid is not over, that covid spreads like cigarette smoke, etc.
- You have an above average knowledge of covid and/or EDS and/or a solid grasp of science.
- You are not my doctor but you care more than my GP doctor does. I have a doctor appointment next week. I do not have a specialist doctor I can ask (the waitlist is long).
- The specialist doctors in this paper say don't do it.

If you were me, would you continue getting shots? Why or why not? Are there any related papers I should know about?

"CONCLUSION
Regarding SARS-CoV-2 infection and vaccine injection(s) in people with EDS, we can conclude that although EDS is a rare genetic pathology, with an overall incidence of approximately 1 in 5000 people (highly variable incidence depending on the type of EDS), we have observed that a very high number of people suffering from the most severe cases of long COVID (post-infection or post-vaccination sequelae) presented with EDS. As mentioned earlier, EDS is systemic and directly linked to abnormalities in the connective tissue of genetic origin (production of collagen). It seems to us quite possible that the deficiency in proteins of the extracellular matrix, which target membrane integrins, confers an exacerbated "sensitivity" to the viral or vaccine Spike protein also capable of targeting integrins, potentially leading to cell death, via caspase-3 or other activation. Notably, the Spike protein binds to alpha-5 beta-1 and alpha-V beta-3 integrins, which are integrins also targeted by collagen (partially denatured, exposing its cryptic/hidden RGD motifs), being deficient in people with EDS. Thus, it seems to us that any anti-Covid-19 vaccination booster for these high-risk people is not desirable, the benefit/risk balance being extremely unfavorable. In the case of SARS-CoV-2 infection, early outpatient treatment (e.g., high vitamin D supplementation) of these people seems appropriate [20-22]. "

posted by anonymous to Health & Fitness (16 answers total)

This is not a related paper directly, but Denise the co-founder of Dreamwidth (and rahaeli on Bluesky) has EDS and has been posting prolifically about interactions between EDS and COVID vaccination and techniques for managing them, with many PubMed citations. It seems like she could be a very useful resource for you. She seems most prolific on Bluesky so if you're not on there you might pick up an invite code from the post in MetaTalk.
posted by Rhedyn at 1:37 AM on September 19, 2023

I’m always suspicious of papers that say “we’re seeing a lot of patients like THIS” but fail to provide any data to back up that anecdote. This is an editorial, not a scientific paper. There’s no patient data supplied, and there isn’t a specific vaccination that they point to. So, at base, I am suspicious.

Now on to why I will get the new vaccine despite having EDS. Even if I am not able to source Novavax, which is my first choice, the dose of spike protein in the vaccine is incredibly small compared to the dose of even a mild case of covid. If I am rolling the dice, I’m going to minimize the chance that I will get a particularly bad roll. Having kept up with the research around EDS and covid, I remain convinced that getting it is a far greater threat to me than vaccination. The amount of spike in an mRNA vaccine is less than an hour’s worth of what my own body would produce, and that’s probably being generous.

I will note that I have made the opposite choice in regards to cipro - if I am not literally dying from a bacterial infection that is resistant to every other drug I will not take it. Because the evidence for the bad outcomes with EDS is overwhelming and well established. I mention this because EDS impacts a lot of my medical decisions, and I don’t want you to think that because I am continuing to choose vaccination it’s because I am not keeping up with the current research. And yes, care a lot more than any of my doctors.

I think it is possible that I have some lingering impact from the previous many doses of vaccine. But we are living through a pandemic. It would be unusual and weird if my health wasn’t impacted, and I view it as choosing the less harmful path. I’m giving it until the end of the month to find out what happens with novavax. If it’s still in limbo, I will go ahead with mRNA. This editorial doesn’t sway me. If it had an actual patient data set or was more than opinion piece, I would dig deeper into the authors to see what other work they have done.
posted by Bottlecap at 2:32 AM on September 19, 2023 [20 favorites]

My partner has hEDS and has taken all the vaccine doses available to her in the UK. She would take more if offered, very similar reasoning to Bottlecap's.

I'm also slightly sceptical of the article for promoting treatment of covid with vitamin D when I've seen a phase 3 RCT find no protective effect. I'm not up to speed with all the research on this, so maybe there's more positive evidence now, but it caught me eye.
posted by knapah at 2:48 AM on September 19, 2023 [8 favorites]

A short browse through researchgate makes these guys look a bit like Covid- and mRNA Covid vaccine-obsessed crackpots. One of them has a paper out in which he claims that the mRNA vaccines cause “mRNA DISEASE” and asks, “What examinations [in autopsies] should be requested in order to establish the causal link between the injection and the death?”—the clear implication being that there is such a link. Another writer has articles claiming to have established a link between Covid/spike protein vaccines and Alzheimer’s, Parkinson’s, etc. I’m sure if I dig deep enough one of them will claim to demonstrate that the Kanye/Kim split-up was caused by mRNA vaccines for Covid

I would not be convinced by, and certainly wouldn’t be making and critical health decisions based on, anything these guys wrote.


I also wonder what makes you think you have or have had long Covid? Those symptoms also come with aging and it may be that you’re noticing things more and are in some sense looking for things that could possibly be stuffed into the “long Covid bag.”
posted by slkinsey at 4:11 AM on September 19, 2023 [6 favorites]

This particular article I would ignore - it’s conjecture with no data behind it. I might look through some of the footnoted articles to see if there’s anything more solid out there, or the authors’ other publications, but otherwise at most I’d chalk this up as “interesting hypothesis, keep an eye out for actual data someday.”

Beyond that I can only defer to the lived expertise of many people with EDS in my life, who are all getting vaccinated as early and often as their various countries allow, with their doctors’ support.
posted by Stacey at 4:12 AM on September 19, 2023 [1 favorite]

The unsteady heartbeat could be long COVID, but could also be associated with POTS (postural tachycardia syndrome), which is often a co-morbidity of EDS. Might be worth checking this out.
posted by JJZByBffqU at 4:37 AM on September 19, 2023 [5 favorites]

I'm a covid avoider and research scientist, so fluent in science papers. This is speculation and opinion, a letter to the editor from a crank., no more. Ignore and move on.

The disease is MUCH more of a risk to us autoimmune patients then the spike protein alone. Get the shot.
posted by Dashy at 4:55 AM on September 19, 2023 [13 favorites]

Not sure if anecdata is helpful, but I have EDS and asthma and I've had like 4 vaccines as well as covid once after those vaccines.

I had terrible joint pain for about a day with a couple of the vaccines, and then when I got covid it was pretty typical (for late 2022). Very bad sinus symptoms was my main complaint which made it very hard to sleep for a few nights even with cold medication, no loss of smell, was testing negative by day 7/8. It definitely sucked but it seemed to suck more for relatives who got it from us who hadn't been boosted (they were sick a couple days longer and lost their sense of smell). I felt like I had some residual throat symptoms (like hoarse voice) that took a while to go away (like a month or so), and as well this unique feeling fatigue that was just like a part of me but didn't make me sleepier for that time as well, but I had a toddler who was still keeping me up at night and I suspect if I could have really rested it might not have lingered so long. I was able to go about my daily life fairly normally after a week and one day realized I felt completely better, I'm very grateful for that.

I'm in my early 40s, and have noticed increased creakiness and propensity to injury with daily activities and am working on slowly increasing my strength so that I'm better protected against those issues as I age. I also have orthostatic hypertension that is related to EDS and I am learning how to manage it, that's been a lifelong issue that I didn't pinpoint until I was older, consuming more salt and electrolytes more generally really helps me as does not overdoing physical activity. Menstrual cycle changes have been widely reported and I have maybe noticed too post-covid, but with my age it's hard to blame covid when I'm hitting peri-menopause as well.

Anyway I know it's really hard to throw these decisions about vaccines on top of all the considerations related to having EDS and other health conditions tied to it, I hope you get some answers and relief from your symptoms.
posted by lafemma at 6:36 AM on September 19, 2023

I am a librarian and work in a medical library, and one of the things I do at work is help people locate and evaluate the quality of scientific literature. This article, an editorial, is basically riffing--they wrote a few paragraphs speculating about a mechanism by which something could be going on. There's no experiment, no study, no data, no actual people/patients, no nothing backing it up. Even if the journal is peer reviewed (I didn't check), this article was probably not--you don't peer review book reviews, letters, editorials, etc.

Which is to say: this is very likely not something that a responsible doctor would take into account when making decisions about your care. Not only is it not high-quality evidence, it doesn't really contain any evidence at all. And, as other folks have noted, there's arguably a pattern of the authors being anti-vaccine cranks. It's kind of in "monkeys might fly out of my butt" territory.

I'm not a doctor, and I'm not your doctor, but if I were you I'd get the vaccine. I'd also note that I'm rolling the dice and waiting (at least for a week or two) to see if Novavax becomes available, because I've had to take a day or more off work after getting the Pfizer boosters and I don't hate the idea of pushing the peak of protection from infection later into the winter and spring. But if I was very concerned about the effects of another infection I'd probably spring for the mRNA vaccines that are available immediately.
posted by pullayup at 6:50 AM on September 19, 2023 [5 favorites]

I know lots of people with Ehlers Danlos Syndrome, and they are all grabbing COVID vaccine boosters with both hands,

because Ehlers Danlos Syndrome puts you more at risk of complications from COVID.

(Ehlers Danlos Syndrome can cause cardiac/heart/circulation problems, COVID can cause long term/permanent cardiac/heart/circulation problems, the two combined is seriously bad news.)
posted by chariot pulled by cassowaries at 7:38 AM on September 19, 2023 [2 favorites]

I know A LOT of chronically ill/Disabled people in person and online, and the only people I know avoiding COVID vaccines with robust medical backing to do so are

a) people with life threatening allergies to Polyethylene glycol (PEG);

b) people who developed Guillain-Barré syndrome from a previous COVID vaccination. (Note that you can also develop Guillain-Barré syndrome from influenza vaccine OR from catching influenza.)
posted by chariot pulled by cassowaries at 7:41 AM on September 19, 2023 [1 favorite]

I am not a doctor or medical researcher but I have a diagnosed connective tissue condition and suspected hEDS. And a really good, thorough, well informed, and nerdy rheumatologist. I will be getting the newest COVID booster when available, probably Pfizer. The vaccine causes pretty severe fatigue and joint pain within hours of getting it, and can put me out of commission for 2-3 days. Each one is less problematic in this respect. I got COVID a few months ago and was shocked that I had it because the symptoms were so mild. Being immunocompromised, autoimmune, etc. I credit the vaccine with the mildness. I honestly have more inflammatory issues from the common cold I think.

If you would never get COVID the vaccine might arguably cause undue challenges to the body. But because I might get COVID I prefer the planned challenge than the unplanned and possibly more severe one.
posted by crunchy potato at 8:14 AM on September 19, 2023 [2 favorites]

I'm careful about masking etc., but my spouse goes to work and is somewhat less cautious than I am. First he and then I caught covid, after three whole years of avoiding it. There's no way for me to have avoided it, unless I lived alone.

My chronic condition (not EDS) took a marked longlasting turn for the worse the month I had my first two covid shots, when the vaccinations first became available. It's impossible to know whether the vaccination was responsible, as some other things happened then, too, but it's quite possible there was a connection, probably autoimmune.

I still think it was the right decision to get the vaccination, as the only true alternative in the long run was to eventually get covid without the vaccination, which would certainly have had even worse effects on me. I will continue to get covid vaccinations, probably one every six months, until we get a new vaccine for the areas of the coronavirus that don't mutate much so we can quit playing catch-up with updated versions.
posted by metonym at 10:55 AM on September 19, 2023 [2 favorites]

I can't speak to the spike protein, but I am very serious about avoiding covid as much as possible. I am holding out for a Novavax booster this fall.
posted by Former Congressional Representative Lenny Lemming at 6:29 PM on September 19, 2023

I have EDS, and yeah, I've been grabbing every vaccine I can get and will continue to do so, for the same reasons people have given above. Even if there was some small chance that the vaccine might have some negative side-effects (which is a tiny but real risk with any vaccine), it seems clear that the negative effects of Covid are likely to be much much worse.
This research doesn't sound convincing to me, but even if it did, you have to bear in mind that it's not a choice between the risk of a vaccine and no risk, it's a choice between the risk of the vaccine and the risk of Covid.
Anecdotally, a friend of mine who has EDS and MCAS, which makes her go into anaphylaxis on a fairly regular basis, was advised to get her vaccines, even though they thought there was a significant risk of it triggering a dangerous reaction. They did it in hospital with a crash cart standing by, but they did it. (She was fine). That's how much her doctors didn't want her to get Covid.
If you have EDS and any of its associated conditions, you want as much protection from Covid as you can get.
posted by BlueNorther at 6:26 AM on September 20, 2023 [1 favorite]

Not a response to your question but, as someone with vEDS, I'm happy I read AskMefi since I was completely unaware of the interactions. Thanks for the question and the helpful responses, everyone.
posted by DeepSeaHaggis at 5:20 PM on September 20, 2023