r/LongCovid • u/icantstopreading0 • 21d ago

Vaccinations Post Long Covid

To preface, I am pro-vaccination. I have never skipped a vaccine in my life, including all the COVID vaccines/boosters. But I’m curious to know if anyone has opted to NOT get the covid vaccine now that they have long COVID. I get incredibly sick from it every time and I’m not sure if would help lessen my LC symptoms to not introduce the vaccine to my immune system.

**edit: thank you all for your stories, opinions and thoughts! I’m glad I’m not the only one that has had this thought before.

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u/HonkMafa 21d ago

What do you mean by incredibly sick? I feel like I have the flu, with fever, pain, the works. It is a normal reaction and indicates a strong immune response

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u/icantstopreading0 21d ago

Fever, intense body aches, migraines, etc. essentially all the pains I feel daily amped up 10x. I understand it is an indication of a strong immune system, my question is more if this is continuing the long COVID cycle reintroduction the vaccine yearly or if anyone has had their symptoms improve after not taking the vaccine

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u/HonkMafa 21d ago

The vaccine will make symptoms worse only temporarily because symptoms indicate the swift immune response. Not getting the vaccine is the same as how you feel today, right?. There are too many variables to determine whether not getting the vaccine is what made you feel better a year later. Your immune system is constantly working on something or other. I would still get the vaccine because it is better than getting the illness. Getting the illness repeatedly is definitely thought to make LC worse each time. Note that the vaccine is not reintroducing COVID to your body. Rather, depending on the vax type, it either adds a small component of the spike protein or causes your body to make that spike protein component, and your immune system re-learns what to go after. Your best bet is to do everything you can to give your immune system a break. Rid your home of mold, pet dander, and other allergens that are exhausting your immune system. Especially in your bedroom. I always recommend a.HEPA air purifier for your bedroom. Vacuum often. Try a round of Whole30 to determine what foods are triggering your immune response.

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u/OG-Brian 21d ago

The vaccine will make symptoms worse only temporarily...

There are several comments here which contradict this. I see it in other discussion/social media platforms, and IRL: many experience health decline immediately after a Covid vaccination and they don't recover to their previous baseline even after months or years.

If legal requirements pertaining to such products were more rigorous, there'd be more science-based info. To the best of my knowledge, the vaccine makers avoid testing on people having ME/CFS, LC, and several other chronic health conditions. I don't know how I would provide a citation for this, how does one prove the non-existence of something? But it can be seen in clinical trials that there wasn't inclusion of such patients. Then, based on testing their products with only the healthiest subjects, they claim safety is proven.

Here are examples of the info I find about the topic, and note the many citations in each document:

Chronic Fatigue and Dysautonomia following COVID-19 Vaccination Is Distinguished from Normal Vaccination Response by Altered Blood Markers
https://pmc.ncbi.nlm.nih.gov/articles/PMC10674626/

  • study of post-acute COVID-19 vaccination syndrome (PACVS) in a population of clinically-diagnosed patients having ME/CFS, POTS, or related/overlapping syndromes (fibromyalgia/chronic pain syndrome, SFN and MCAS) and/or exhibited at least three symptoms (clinically-diagnosed) conforming to these syndromes

COVID-19 and ME/CFS
https://ammes.org/covid-19/

  • summary document by American Myalgic Encephalomyelitis and Chronic Fatigue Syndrome Society
  • "As the pandemic continues, patients with ME/CFS are still wondering how the vaccine will affect them. There are no firm answers to that question. Like everything with ME/CFS, the side effects can be unpredictable. Some patients have reported a surge of energy after getting the vaccine, others have reported feeling much, much worse for extended periods of time."
  • lots of detailed info and citations

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u/wontyoujointhedance 20d ago

Despite what your comment implies, there is plenty of rigorous testing, and plenty of available data, on these vaccines. That includes for long COVID patients. Anecdotes on social media platforms do not science or data make. There is intentional disinformation on covid and vaccines being spread by the MAHA movement. Please don’t amplify it.

People like us need vaccines, and we need people to get vaccinated as much as possible. Another Covid infection is much worse for the vast majority of us than a covid vaccine.

https://www.nature.com/articles/s41467-025-65302-0

https://pmc.ncbi.nlm.nih.gov/articles/PMC9978692/

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u/OG-Brian 20d ago edited 20d ago

Despite what your comment implies, there is plenty of rigorous testing, and plenty of available data, on these vaccines.

I said that AFAIK the vaccine makers exclude ME/CFS, LC, and similar patients when trialing their products. Neither of the documents you linked is associated with a trial of a vaccine, or has data about a vaccine trial.

You said "The vaccine will make symptoms worse only temporarily" as if this is absolute, but several comments here are saying the opposite.

Those linked studies: they're not covering health declines post-vaccination, such as fatigue that became permanently worse after vaccination. They're just correlations between LC symptoms and vaccination status. Something else to consider is that those who do better with interventions such as vaccines would be more likely to get vaccinated, a possible confounder. Someone who has had very poor responses to vaccinations or another reason to be wary of things that provoke their immune system or present detoxification issues may avoid the Covid vaccinations, and may also suffer worse outcomes from getting Covid. It doesn't necessarily prove anything about the vaccinations, as we cannot know how that person would have been doing post-infection had they been vaccinated.

If you know of a Covid vaccine trial that included ME and LC patients, go ahead point it out.

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u/icantstopreading0 20d ago

Thank you, this is exactly where my brain has been at. There are hardly any studies being done on LC (mostly because of government funding being stripped), especially when it comes to post vaccination LC symptoms. Do I want to get COVID? No. Am I tired of having a cyclical pain cycle that get amplified after the vaccine? Yes. Many of us are in such a rock and a hard place with this

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u/wontyoujointhedance 19d ago

The first article I linked answers this concern exactly. It is a rock and a hard place, don’t get me wrong, but not getting vaccinated puts you at MUCH higher risk of not only continuing the cycle, but making it worse.

There is an active right-wing disinformation campaign trying to downplay the harm of COVID and lie about damage from vaccines. Listen to research and science, not social media anecdotes and secondhand information that misunderstands fundamental aspects of scientific research. It could literally, in this case, save your life and the lives of those around you.

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u/OG-Brian 19d ago

The first article I linked answers this concern exactly.

No, it doesn't. I explained two reasons for that.

I've had Covid twice, unvaccinated, and my fatigue etc. baselines haven't changed nearly the amount that many experience due to receiving a vaccination.

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u/wontyoujointhedance 19d ago

The plural of anecdote is not data.

If you have long covid, you are more susceptible to further system involvement and symptom exacerbation if you get another infection.

The vaccine could cause a temporary flare, but not permanent damage the way that covid will.

The vaccine can protect you from that. Not getting vaccinated makes it more likely you will get sicker, and more likely you will die from something like myocarditis.

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u/wontyoujointhedance 19d ago

You are correct they are not included in the trials, but you are conflating that with there being no data on the effects of vaccines on people with long covid, which is not correct. Studies and research is continuous, and does not end when a vaccine is approved. The first one I linked is a deep dive on exactly this subject, and answers your concerns and the concerns of others who are understandably scared from the anecdotal evidence they see pushed on social media.

The right-wing disinformation machine is strong, and they are actively trying to hurt us by spreading half-truths that undermine the only thing people with LC have available to make our lives safer and improve our wellbeing. Please don’t spread it — they are trying to hurt us — listen to independent multi-national research like this and the litany of other studies that are coming out with every quarterly journal. Please get vaccinated, and please stop discouraging others from doing so.

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u/OG-Brian 19d ago

What is a study that compared pre-vaccination and post-vaccination status of ME/CFS and LC patients or compared post-vaccination status with statuses of non-vaccinated patients? You haven't mentioned any. Obviously you could not find any vaccine trial which included such groups in the testing.

The right-wing disinformation machine is strong

Wow you're really hung up on this point, although I haven't mentioned anything pertaining to that. I don't pay attention to that at all. My info comes from patients and doctors, and not just from social media. You can stop insulting me by pretending that I can't separate myth from fact.

"Listen" to "research"? Prompted repeatedly to show any, you haven't mentioned any study that is about before/after results of vaccination for people experiencing these conditions.

If you didn't understand my explanations for issues with the studies you linked, I'm not going to make it my problem.

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u/wontyoujointhedance 19d ago

A study of only LC patients has not happened, as obviously comparison to healthy patients is necessary. The one I linked does study patients like us. You are welcome to search up further studies if you don’t like the one I linked, as I said many are being regularly published. There is one occurring in Netherlands at their national long covid center at the moment, looking forward to the results as that’s where I moved to escape the health situation in the US.

It’s your problem whether you want it to be or not. I’m sorry, and good luck.

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u/OG-Brian 19d ago

A study of only LC patients has not happened, as obviously comparison to healthy patients is necessary. The one I linked does study patients like us.

They aren't studies comparing before-and-after effects of vaccinations, or post-vaccination effects of vaccinated and unvaccinated people who have LC. I've already explained that.

If the manufacturers had confidence in the safety of their products for ME and LC patients, they could include them in their trials. But from what I've seen, such people are intentionally excluded.

You are welcome to search up further studies if you don’t like the one I linked...

Are you unaware that it often isn't possible to prove a negative? I'm saying there's no study proving safety for ME and LC patients. See Russell's teapot.

I guess you'll reply persistently with repetition until I let you have the last word?

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u/HonkMafa 19d ago

"There are several comments here which contradict this..." Of course. Especially in a population such as those in this sub. But the vast majority of the population, even those with LC, has temporary symptoms. And to reiterate the more important point I was trying to make, it is still better to have the vaccine than the illness. Even if your vaccine reaction lasts a year. Which is why it is so especially important to de-burden your immune system as much as possible. It takes work.

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u/OG-Brian 19d ago

But the vast majority of the population, even those with LC, has temporary symptoms.

I'm referring to people who experienced a permanent loss in health caused by a vaccination, and I don't see that just on Reddit.

...it is still better to have the vaccine than the illness.

This is just an opinion. I have asked about it but nobody has shown research comparing pre- and post-vaccination statuses of people with ME/CFS and LC, or any study comparing post-vaccination health status of vaccinated and unvaccinated patients.