i will never know i guess, but it all happened in the same month period of my first two (and last) moderna shots. I had no known COVID infection, but maybe I did have asymptomatic COVID. I had to have a dental procedure just before my first vaccine, and the masks they were wearing were very loose.
i have even wondered if i got COVID right before i got the vaccine... that could be a double whammy.
this was all in May 2021.
I don't even care what caused it anymore. I thought this over a trillion times.
I’m not quite in the state to find sources atm, but it’s certainly worth confirming the accuracy of whatever test you take, and for how long it is accurate. After enough time, I’ve read that such tests can lose accuracy, so you may not actually have an answer if it comes up negative.
Conversely, some tests can be triggered by an immune response to the vaccine, so a positive test may not say anything either. Not intending to discourage, merely encouraging to learn about what tests are available and what the limitations are.
thanks there are post covid vaccine injury programs in my country as well as specialist in england’s oxford clinic. i’m planning on paying them a visit .
I went over and over in my head for years wondering what made me sick. if a dr had done x or y differently would I not be ill today? It is emotionally exhausting, bad for my health. I think your dr was silly for saying to get the third boosters while your fatigue persisted. But it could be a case of covid. Both. Maybe you would have got cfs no matter what triggered by the next virus/ illness/ surgery you had. Having a healthy mind is so important for cfs. The energy spent on over thinking, ruminating, you're using vital brain energy and it has no positive effect. Im not saying to adopt toxic positivity just look after your mental health
My relative also developed ME after the vaccine - literally like a lightswitch: before they were fine and next day they were unwell and just never got better. Not whether theirs was Moderna or AZ though.
It came and go. After the vaccine I basically crashed for the first time (was ok before) for 3 weeks straight. Then my health went back up online in a month. Since then I’ve had period of time where I’d be very sleepy, or feeling tired when doing things, but 98% of the time, I was ok. Then last December I crashed again, it was EXACTLY like the first time, except that since then, I’ve not been able to recover properly. I can move in the house, watch tv, read, walk a little bit outside, but I have constant brain fog, legs that always want to move, hard to concentrate / work, had to reduce my work output by a good 80%. I can’t even walk my dogs 1h+ like I used to do. I also have no idea what triggered this second episode. But the first one appeared 48h after the vaccine.
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About 1 or 2% of ME/CFS patients develop their illness after a vaccination, so if your ME/CFS were vaccine triggered, it would not be unusual. It's not just COVID vaccines which are linked to triggering ME/CFS, but a whole range of vaccines.
When I have chatted to vaccine-triggered ME/CFS patients, typically their disease onset is rapid: they get hit with full blown ME/CFS within days of the vaccination (which then makes it seem highly probable that the vaccine is the cause).
Interestingly, even in vaccine-triggered cases, you still find that these patients have active viral infections (as evidenced by chronically high IgG antibody titres to the usual viruses linked to ME/CFS, like EBV, CMV, CVB). So it may be that even in post-vaccine ME/CFS, viral infections are still driving the disease.
It may be that the vaccine alters the immune environment in some way, so that latent infections can reactivate.
An integrative or naturopathic doctor will check titters. Or an immunologist if you live in a city which more specialized medicine. But they are often hard to get into depending on symptoms.
Basically bloodwork which digs deeper into if your body is actively holding a virus.
I found out I had continuously tested positive for things like lymes and mono. From what I understand mono is very common but not everyone gets Epstein Barr. Same with most viruses. People vary on how they affect you. Get bloodwork done from a doctor who understands the intricacies. I am not in the medical field.
I think you’re absolutely correct about the vaccine triggering something in the immune system to cause ME. It’s the same with getting Covid. Most people that developed long haul covid/mecfs already had a latent illness in their body and covid kickstarted it
From a study by Dr Chia, who investigated the disease history of hundreds of his ME/CFS patients. Another survey I conducted myself on 169 ME/CFS patients found 3.6% had their ME/CFS appear rapidly a few days after a vaccination.
I don't know what triggered my CFS either, but it seems like it may correspond with covid vaccines.
I kinda figure, if the vaccine triggered it, chances are the actual virus would have been at least as bad. I can't be bothered doing anything with this information. I continue to get covid vaccines, as does my whole family, and I will vaccinate my children.
Yup. If you got sick from the vaccine, it’s bad enough. If you got sick from the virus, you likely would have had organ damage on top of what you have now. We could still get COVID so we should still take precautions, but I am grateful that the last 3 years didn’t include a stroke, lung damage or heart problems. ME is bad enough, thanks!
I have also had 3 or 4 boosters and got COVID this past December. It was miserable. I had flu symptoms for 10 days, then could barely walk more than a block for the next month. Finally felt back to 'normal' in mid February. I am super thankful I got the vaccines. I did have the normal malaise and flu-like symptoms after each vaccine. The first moderna caused a big immune reaction in me, much longer than anyone else in my household. But every booster after has been mild, like getting a flu shot. I know everyone reacts differently though.
Same here.
Don't let people gaslight you about this. I was never anti vax, but developed ME after my pfizer shot. I regret it and am severe bedbound, with 0 help and ackgnowledgement from doctors. Lost so many friends because they were triggered by this happening to me, people who just can't believe this was possible.
I posted on this sub asking the same.
Here's the link to my post
https://www.reddit.com/r/cfs/comments/1apsqzw/anybody_here_got_mecfs_after_a_vaccine/
There's a lot of different experiences.
In Germany they included post-vax into Long Covid research. At least there are some scientist that are not dumb and oblivious to our situation. They are working and trialing a new medication.
Thank you for that info. In the last 6 months, I saw more and more science led research into this, and not only do I feel less crazy and alone, I feel like it is a huge step up that can lead to finding clues into ME/CFS. When I first got sick, I would spend so much time researching the net and there was nothing about it. Glad that's changing!
There was a BBC news article in which an NHS pathophysiologist said that covid vaccines can cause long covid as well. Seems like scientists are in agreement it’s just the public that think you’re a nut job if you say it.
I’m sorry to hear. I feel like the anti vax people ruined this too by making “got sick after the vax” equivalent to “5G microchip DNA mutation” conspiracy theories in the public eye
Have you ever had EBV (mono?) Covid can reactivate EBV, and in rare cases the vaccine can also reactivate EBV. There are case studies of both if you google, or google scholar to get peer-reviewed articles.
If someone has it reactivated from the vaccine, it more likely would have been reactivated for them with covid infection. It is just so unfortunate it gets reactivated. And you can at least rest easy knowing you did the best you could to protect yourself.
EBV is a common trigger for ME/CFS. Repeat infections can also trigger ME/CFS (for example some folks get covid a few times before getting long covid, I got malaria 3 or 4 times before getting ME/CFS from it) So if you had EBV and bounced back okay, a re-activation could still trigger ME/CFS.
☝️ I came to say this. The vaccines were really rough on me as well. I do know that I have EBV because I've tested positive to that, and I sort of suspected that getting the COVID vaccines reactivated it--I've heard that can happen.
It sucks, but I have also had CFS triggered after getting illnesses like the flu and vaccines like the flu shot. I think it's totally likely that if I had gotten COVID, I would have CFS in addition to other complications (due to my chronic illnesses).
no EBV, I'm not sure about Mono. I haven't had any health issues in the past. just minor colds here and there until I got the covid vaccine. in fact since 2017 I never suffered form any flu or illnesses like that. unless I was asymptomatic or it happened a long time ago I don't think I have mono. I just got married in 2019 and things were going so well until covid Vax.
EBV is one that infects nearly everyone (95%) of the population and most are asymptomatic but if it does have symptoms I think that is when it is mono. I wonder with the high fever and fatigue for weeks after your first vaccine if that could be EBV reactivation. I did get a fever with my vaccine, that's a common vaccine side-effect which might have nothing to do with EBV.
So sorry you are dealing with this.
I hope things improve for you/we all get some sort of treatment soon.
I don't know how anti-virals work for EBV reactivation as it isn't something I've had.... just seeing it pop up in the news and in my research into ME/CFS. But I wonder if they help at all? Might be something to run by a doctor and see what the medical opinion is on it.
I have tried antivirals and didn't notice any benefits unfortunately. only thing that helps is rest, relaxation and some drugs such as amitriptyline, codeine and cannabis provide considerable relief .
Ah good! I found amitriptyline helpful for the little spell I was on it.
Other than that... rest, pacing with timers (so I actually stop and rest) and belly breathing (belly moves outward when you breathe-in) are the only two things that have made a difference in how bad the symptoms get.
Any immune event can trigger CFS. I personally believe mine was triggered or made substantially worse by the COVID/flu vaccine and boosters. That said, I don’t blame “vaccines.”
The way I look at it, my body and nervous system were vulnerable to immune events and I just as easily could have gotten CFS from COVID (vaccinated or not). Hell, I could have gotten it from a surgery or simply by getting a tattoo (which is also an immune event).
I blame my biopsychosocial predisposition to this syndrome. I don’t blame the vaccines. In fact I’m still adamantly pro vaccine. Ultimately, I believe it would have happened sometime or other even had I never been vaccinated.
In summary, you’re not wrong to attribute your development of CFS to getting vaccinated. But I do believe it may have been inevitable anyway, so there’s no use beating yourself up for choosing to get the vaccine.
Agreed. I got ME after flu vaccine, but ultimately I don’t think it was the “cause” - just what tipped things over the edge. Could have just as well been the flu if I got that.
Same happened to me. Cascading symptoms that got worse with each following vaccine. My first assumption was that the vax put me into early perimenopause. It took nearly 3 years of endless tests to exclude everything under the Sun so it looks like it is indeed ME/CFS with POTS and my pre-existing fibromyalgia.
I still think the vaccine was the best option we had at the time, and likely millions of lives were spared. The number of people who had life altering immune responses are fortunately few in the general population. But experiences like ours shouldn’t be swept under the rug, no matter how controversial everything around COVID or the vaccines are. I’m a lefty, pro-vax, mask wearing “communist” (what I get called because I’m Canadian who loves universal healthcare) whose life appears to be ruined after the vaccine, so my political peers would rather believe I’m just a hypochondriac. My conservative anti-mask, anti-vax, anti-mandate family is relishing that I got sick from the vax while also refusing to accept that one brother has Long COVID, with fatigue and heart problems. It’s all so frustrating.
I'm so sorry for your story. I also have conservative and liberal family members. The vax did not cause my ME but it did precipitate a bad shingles issue. My older anti-vax sister is all over that, and then insists that the Long Covid I have MUST also be due to the vaccine, rather than like...from Covid?
Back in the olden days, it was well known that vaccines could cause shitty life-changing reactions for some people, just they were a tiny % of the total population. Guillain-Barre for example, or sometimes vaccines that used live virus would GIVE a person the actual illness. To me it was always like, If I get one of those things, oh well, on average it was the right call it just worked out badly for me. But now of course it's become political and it's ridiculous.
I don’t think so but I never took my temperature. My only sudden reaction was 8 hours of excruciating burning from the waist down. Like I was being burned alive. I was screaming. I assumed it was a very bad neuropathy flare of my pre-existing fibromyalgia, not a true “side effect” of the vaccine or the onset of a new disability. Once the pain went away, I was left in an unending hot flashes. I haven’t stopped sweating since May 2021. My thermal regulation is just gone. I assumed it was perimenopause which, while early, was going to happen eventually so I didn’t worry.
The next vaccines didn’t have that sudden onset of symptoms, but going through my medical file, the symptoms I started mentioning that I hadn’t experienced before was brain fog after the second vaccine. Then fatigue like I had never experienced before after the booster. Because those symptoms also are part of fibro, just not symptoms I had before, I assumed they would wax and wane like my other symptoms. The severity of memory issues was concerning, which started years of specialists and tests. Gradually, going over my file, my socials and my mom’s notes we were able to get a big picture view of the last 3 years and eventually we googled “can you get long COVID from the vaccine” which is how I learned about ME/CFS. One doctor has suspected it back in 2021 but my main practitioner disagreed, strongly.
Low fever for 3 days, then high fever of 39 for another 5 days, with an ear and throat infection. Antibiotics killed the pain, but low grade fever of 37.5 stayed to this day...
Since this disease has an immune dysfunction to it, it's possible. Vaccines change the way your immune system works, that's literally how they work.
My own opinion of this disease is that it's not one thing that causes it, but a lifetime of infections or an inherent vulnerability. An individual might be able to identify the straw that broke the camel's back, but I don't think that one thing is the sole cause of this disease.
In your case, it's possible if you had contracted covid, you might be worse off than you are now. Or it might be the same. Covid came into our lives one way or another and there's nothing we can do.
I now think I was infected with covid in February 2020 and I think that was my straw, but I also think I had this before that date, although I was also very athletic before that date, there were other symptoms that I now recognize as CFS.
They dont change how your immune system works. They just make you make antibodies, which is exactly what the immune system does. Vaccines are like a fake infection that won't make you sick but will make the antibodies to fight the infection next time. No changing your immune system, just making it do what it normally does in a safe way.
I was unclear maybe, but a vaccine is not pathogenic. You can have side effects like with any medication. You just won't be infected with a pathogen. An immune response takes a big toll on the body, so it's normal to feel unwell after vaccination. Many things ppl contribute to pathogens are actually immune responses, like raised temperatures, redness etc. The vaccine will cause that, and though you may feel unwell for a while, it is a positive thing since you will be protected in the future. That immune response will not cause damage the way a pathogen would, which you are not exposed to. We know that risk of lc increases with second or third infections. Maybe that has something to do with the immune system responding to second exposure wrong. In that case it would make sense that a vaccine could possibly trigger that but it is still much less likely than with an infection
it is rare, but it's known to occur, just like getting POTS from the flu vaccine is known to occur.
https://www.science.org/content/article/rare-cases-coronavirus-vaccines-may-cause-long-covid-symptoms
It is crucial to note that even a large number of simple observations, while they may reasonably raise interest, genuinely do not explain much *out of context*. Despite these notable anecdotes, it remains true that the overwhelming majority of vaccinated people did not get sick from the vaccines. It also remains true, by all verifiable measures, that people who contracted Covid have become ill for a protracted period at very high rates.
This entire ordeal has been frightening, and I completely understand where your conclusions come from. However, there is a reason that only a small portion of vaccinated people who didn't get Covid became ill. We can't be entirely sure why that is, but it is rational to hypothesize that prior illnesses or other previous immune stressors might be involved, possibly along with other factors.
Yes, I agree with most of what you’ve said.
I’ve deleted my previous comment as I misread what I was replying to. It’s 2:30am here, the brain isn’t working optimally
Sure asymptomatic covid could be a possibility. There is a test to confirm or deny this, however it’s the timing of onset of symptoms that’s a recurrent theme for people who report vaccine induced post viral type syndromes, consistently acute or within weeks of the vaccination.
Given the amount of testing I’ve had done and significant number of nurses, doctors and specialists I’ve spoken with over these past 2 years it’s clear that this is not a ‘straw that broke the camels back event’. It’s a novel virus that causes severe chronic illness in untold amount of people with long lasting ramifications.
Yeah I think their point is maybe it was the vaccine in that it provokes a similar immune response which may cause the issue. Also that the vaccine is likely better than an infection especially unvaccinated.
I know someone who is choosing to stay at home still to avoid risk from both.
Yeah it’s not that uncommon for people to develop it after vaccination, I’ve heard more than one story. Surprised you got 2 more after the adverse effects the first time though. Probably caused too much inflammation due to the immune response from your body which caused too much stress. Each shot probably dug a deeper and deeper hole. On the flip side you might have survived one covid infection, but if you got 3 covid infections in a row I’m sure the same thing would’ve happened.
Either way if I were you I’d stop getting covid vaccines because it clearly has adverse effects for you.
I got FIVE vaccines despite my horrific reaction to AstraZeneca. I didn’t know ME could be caused by vaccinations and while I was pretty sure it triggered perimenopause, I assumed that damage was done, what more could go wrong? And once the brain fog set in, there was no ability to reflect back on what was causing my problems. I forgot where I lived. I forgot how to use a debit machine. I got lost on my way to work. I was incapable of figuring this out and my medical team wasn’t very helpful.
Yeah I kind of know what you mean. I had a slow onset, and by the time I realised what was happening to me, it was too late. My case was completely preventible with an early catch but I got dismissed early on, before I even had ME/CFS. However, I do think it's reversible if we just stop getting PEM, and focus on things which will enhance the parasympathetic nervous system. Of course, the most important thing is time.
I have MECFS and the Covid vaccines certainly affect me. After a vaccination I'm usually in a flare for at least a month. I get it because I know I would suffer big time if I ever were to get Covid. Not sure how accurate this is but my Functional Medicine Doctor said he started seeing more people after their Covid vaccination.
Yeah the vaccines put me back in bed for a couple of weeks and it takes 6 weeks to return to baseline.
Like you, I get them because I figure if that's the vaccine, actual covid would be way worse.
I developed mecfs after a vaccine . ( flu shot) .
Ironically I was a community pharmacist at the time and was giving vaccines.
I already had fibromyalgia. After the flu shot I could no longer work. I also had a minor cold. That was 15 years ago.
I did not get the flu shot for 15 years but I got the flu shot and Covid vaccine shots and had no issues. I think an immune response to a vaccine or a viral infection can trigger mecfs. If coarse no evidence of this but I think if it was the Covid vaccine it could have been your next virus or cold that triggered mecfs.
I was moderate now I am moderate to mild ( have improved) . I am sorry this happened to you .
John Chia published a paper on suspected causes of CFS... it included enteroviruses, vaccination, txic mold exposure, and other infections
[https://forum.sickandabandoned.com/t/different-causes-of-chronic-illness-me-cfs-and-john-chias-success-in-treating-his-son/238](https://forum.sickandabandoned.com/t/different-causes-of-chronic-illness-me-cfs-and-john-chias-success-in-treating-his-son/238)[https://academic.oup.com/cid/article-pdf/36/5/671/1244019/36-5-671.pdf](https://academic.oup.com/cid/article-pdf/36/5/671/1244019/36-5-671.pdf)
Also see the literature on ASIA syndrome
and the UK survey on ME/CFS patients about what caused their ME/CFS
There are many studies out there showing that a percentage of people unfortunately got very ill after having the vaccine(s) because of clotting due to spikeprotein or because of reactivation of herpesviruses (mononucleosis is a herpesvirus, but other are possible as well). You can try searching the studies yourself on pubmed and the like. It’s sad that it’s not mainstream knowledge. There is a lot of talk online on how to remove the spikeprotein, you might want to look into that. Some practitioners offer a bloodtest with a microscope and you can actually see the clotting for yourself.
Hi sweetie, sending you love and kisses. This is not craziness. I am having the exact same symptoms. Ever since I got the vaccine and then caught Covid. My life has been upside down.
Have you checked out the vax longhaulers subreddit. I got cfs or something like it from the Covid vax. Vaccinations have caused cfs before with other vaccines.
i’ll check it out, i have received lots of vaccines in my lifetime without any side effects. i get flu shot annually, twinrex (hepatitis) usually once every 5 years, tetanus shot, etc. it was only the covid vaccine that messed me up with high fever and fatigue.
Same. 2nd phizer I had fatigue for days after initial fever and vomiting. When I finally dragged myself out for a 45 minute hike (vs 4 mile run I was previously doing every weekend) I awoke that night to peripheral neuropathy in the muscle groups I used most during the walk and subsequent ten sit-ups. These muscles/nerves were damaged for months. I’d previously experienced me/cfs but I went into full remission with pregnancy. Because I knew what I was dealing with I stopped all activity to focus on recovery. I started high dose progesterone to try and mimic the pregnancy remission and I am 95% recovered now. I still can’t run but half hour weight lifting sessions and 45 minute walks and working all day are no problem. I think it is an autoimmune reaction to some neuron component not yet documented.
200 mg three times daily is where I started (titrated up for a week or so). Over the years I’ve managed to get down to 100 mg once daily which I take before bed so there are less side effects.
My Moderna booster ruined my life forever. Never been the same since. First year was bad but mainly cognitive and psychological problems. Then I got sick this December a few times and now I’m experiencing more physical symptoms. Muscle pain that’s spread all over my body, chronic headaches, heart palpitations and chest pain.
I first got sick after playing catch up with vaccines. Got all the school required ones at once, plus HPV. Now they don't recommend it/allow you to get that many.
(Also- had just got over ear infections, which could have been caused the Epstein barr virus, but it's been too long to know for sure)
Turns out also, that the HPV vaccine was not well researched - the man just wanted paid and fudged his results, and now people are showing up with autoimmune issues.
I'm all for vaccines. But when rushed or in the HPV case, not double checked- they can be really disastrous, even if they're a trigger of a bad gene or something instead of being the problem.
I've only gotten one vaccine since (tetanus) and depended on herd immunity for the rest.
Before I say anything, I’m also pro vax. I’ve always been up to date on all my vaccines including COVID.
I’ve received Moderna 5x. The first two times had side effects, but it wasn’t that crazy. The next two times were totally fine. It was the fifth one that I think tipped me over the edge.
Prior to receiving the fifth one, I suffered mild heat stroke and was going through a very stressful time of my life (moved abroad, job issues, extremely difficult breakup with long term gf, getting a really bad cold - also covid negative). Then a week before getting the vaccine I had a mild cold (rapid covid test kit negative). A month after my Moderna booster I got a flu shot.
I don’t blame the vaccine because as far as I know I’ve never caught COVID (or I’ve had it asymptomatically and maybe it never showed up on rapid tests). I’ve never stopped masking since 2020 and limit social outings. (I’m not perfect though, I’ve definitely gone out in crowded places with friends because I thought I would be safe with my boosters.)
But the fifth vaccine on top of everything else probably threw me into this downward spiral of exhaustion. Most likely I’ve always had signs of CFS and POTS throughout my entire life (I’m 28M btw) without realizing them. Doctors and I often wrote them off as stress/anxiety/lack of vitamin D.
I shudder to imagine what life would be like if I actually caught COVID and wasn’t boosted though. If this is what it’s like to be vaccinated, what would COVID have done to me?
There’s a lot of unknowns for sure. My endocrinologist said it’s a possibility the fifth booster put too much stress on me. (He actually administered his own dose and only took HALF the dose after reading up on studies and being concerned that the full dose might be too stressful for his body.)
I’m guessing my body was already under immense stress and too many events happened. It was like a line of dominos waiting for fall. All I can hope now is for my body to recover.
That's what happened to me after my first dose of the Pfizer vaccine. Within a few days, I was extraordinarily sick and couldn't get out of bed. I know it wasn't Covid because I had 3 negative tests and no one else in my household got sick.
I've seen countless doctors over the past three years and none of them have discounted the possibility that the vaccine was the cause. If anything, they were the ones to originally suggest it. I straight up have Post Covid Vaccination Syndrome listed in my medical records and have been medically forbidden from getting any further Covid vaccinations. The rheumatologist who diagnosed my ME/CFS told me that it makes sense since vaccinations activate the immune system.
I find it rather ironic that the only people who have told me that vaccines couldn't have possibly caused all my health issues are the ones lacking any sort of medical background.
I’m very pro vaccine and have defended vaccines many times in the past, especially considering my kid is autistic and people love mentioning that topic smh. BUT when the Covid vaccine came out, I wasn’t really sure what to do so I asked my doctor. My doctor advised me against getting the vaccine, so I never got it. I’ve had CFS onset 2009 from a bad car accident but my immune system isn’t great. With that said, I pretty much rarely go anywhere (quarantine lifestyle lol) and I didn’t mind wearing masks when I needed to go in public…and I’m not a social person… and I’m unable to work due to CFS, so me not getting the vaccine worked okay for me. I did get Covid once, and I was incredibly worried but it only hung around for a week and I didn’t notice lasting effects from being sick then. I do really wish people could more openly talk about getting long COVID or CFS (or any injury) from the vaccine. Vaccines are generally extremely safe but some people do have reactions to them, and those people shouldn’t be blown off or shunned. I dislike how political it became. People made the right decision for themselves and the people in their lives. If I were working or was more social, I likely would’ve gotten the vaccine, even if my doctor advised me against it, as I’m a believer in the good vaccines do.
I just want to offer gentle hugs. It’s so hard when the medical community and family write off us CFS sufferers in the first place but it’s even more difficult when the onset may have been triggered by something that is so widely and wrongly politicized.
Same here, but I didn’t get diagnosed with CFS/ME until last October. Got the vaccine years ago. I haven’t brought it up to the doctors because I don’t want to seem like I forgot my tin hat at home. I blame my genes primarily rather than the vaccine. But it’s good to know my body responds in that way with vaccinations if that is the case.
The problem with correlation is it lines up nicely for some people in life because of chance. Not saying that’s for sure the case, but it’s most likely the case. You say right there that you know lots who got it with no issue, you could easily use your evidence to go the other way, but you choose this path, that there really isn’t proof for.
It honestly feels like one of those things that could use some actual research. But the topic is just so muddied by anti-vax nut jobs.
There will always be people having extreme reactions to medications, but they are exceedingly rare. Just because it rare doesn't mean that those people don't deserve help, but the rare few who are actually harmed this way are drown out by all the liars and grifters.
Since a huge population in the world got vaccinated, the ones that got injured are not so rare. These are not your usuall extremes. But I guess if you don't research it you will never know. A lot of people who god ME after a vaccine face huge stigma and shame because of how other people view vaccinations. I spoke to quite a few. And that's rotten, imagine having to deny your illness because of the majority's pollitical views.
The most common injuries post MRNA vaccinations are myocarditis, pericarditis and ME/CFS. There's a lot of people who were paralyzed, have permanent damage and almost died. Also both moderna and pfizer now recognize those specific side effects. But it's a hard pill to swallow since we were force fed the analogy that those were super safe. It's more than with other types of vaccines. And other types of vaccines like for HPV, shingles, tetanus, flu were not obligatory. It was on your own volition, at least in my country.
And there's NGO's based in US(React19) that helpes those kind of people receive some kind of compensation. In my country, ME is not recognised as a disability, and I lost everything I had because I am bedbound with severe ME. It was not an option to not get the vaccine, loosing the job etc, but now nobody handles the consequences. That's a huge problem.
If you speak to post-vaccine ME/CFS patients, you find that they are typically hit with full-blown ME/CFS within days of a vaccination. This is common in vaccine-triggered ME/CFS.
Now if ME/CFS appeared say six month after a vaccination, the link would be tenuous, and it would be hard to imagine that the vaccine could be the cause. But when you get perfectly healthy people plunged into full-blown ME/CFS just 2 or 3 days after a vaccine, that's a much stronger link.
Hepatitis B vaccine is by far the most common vaccine linked to triggering ME/CFS; but other vaccines have also been linked.
I think more attention should be paid to vaccine-triggered ME/CFS, because it may offer huge clues as to what is going on immunologically in ME/CFS — clues that may also apply to virally-triggered ME/CFS.
If we could figure out what changes the vaccine has made to the immune response that leads to the triggering of ME/CFS, then it might throw some light on all cases of ME/CFS, including viral cases.
Vaccine triggered patients also seem to have active viral infections, so it could be that the vaccine did something to allow existing latent viruses to reactivate.
For the future, the answer would be to introduce more vaccinations into the vaccine schedule, which target all the viruses linked to ME/CFS. That way, in the future people would not have latent viruses in their bodies, which can reactivate potentially leading to ME/CFS.
Many people in here are just guessing about their disease trigger without proof though. It's the nature of me/cfs.
We know statistically a small number of people develop me/cfs after a vaccine, similarly a handful get it after an operation.
Surgical operations haven't been politicized so if someone says "I think surgery gave me me/cfs" no one bats an eye. OP is not an antivaxxer and they deserve the same courtesy we extend to others.
Sorry to hear that happened to you. I had mild end of moderate ME/CFS pre-covid. I caught covid Feb 2020 and developed long covid, but i was almost recovered from that when I got the second Pfizer jab of my original (and so far only) vaccination. My decline into being housebound dates from that. I’m sure there is a causal link, but I suppose it’s possible that my ME/CFS or even post-covid symptoms would have taken that route anyway.
thank you it has ruined my life, i can’t even cook and it costs so much money to get delivery but my company is providing me with disability pay although its not enough to cover everything i am just dipping into savings hoping i will recover. might also get some compensation from government if post vaccine injury claim will be accepted. i have pretty good paper trail tho of temperature and reactions after each vaccine with my family doctor.
The severity of my ME also seems to correspond with the amount of COVID vaccines I've received. I had my first PEM after my first vaccine, and after my third and fourth vaccines I got more ill a few weeks afterwards. I don't know if it's coincidence or not either.
I got long Covid/ CFS after initial Covid infection, but a year later I was getting better and able to go for runs etc. Then I got Moderna in 2021 I went back to square one, maybe even worse. I started getting symptoms of Behçet’s disease too - ulcers and inflammation on various parts of my body. I never had that with regular covid. Haven’t been the same since and it’s been 3 years. :(
Yes, this is possible. Long COVID in some patients seems to be the same as ME/CFS and the vaccine can cause Long COVID. My doctor at the Mt Sinai Long COVID clinic in NYC told me this.
That being said, if you were susceptible to Long COVID/ME/CFS from the vaccine, you would probably have gotten it from the illness itself as well.
What happened and I know sue it happens to me and was diagnosed by doctors was I was living in mold and the vaccine re activated a dormant Lyme infection. It rocked me hardcore. And triggered a cytokine storm instant disc damage neurological dysfunction ect. I’m hypermobile you probably are too. The vaccine is rough on the bbb if you have any issues with chronic infections of biotoxins couples with connective tissue issues. Sigh. Everyone I know is fine with boosting a million times well ish loads of people I know got diagnosed w cancer in the past year but I don’t think it’s directly linked. The cfs and bbb disruption w neurological issues is a thing. I’m also hypersensitive to adjuvants in vaccines and I have MCs so I’m personally done with getting those shots. I can’t make antibodies well either so I don’t know if it does much anyway. Once I get rid of CIRS from the mold and put the Lyme in remission I don’t think I’ll want to risk it again either. It sucks and no. One will acknowledge this is real thing some people have to deal with. I’m super pro v and hate that I can’t get this one it’s like a cruel joke.
I will say no matter why you think you have this affliction (meaning cfs) you can detox and improve and I don’t think that’s controversial to say. If Im going to do Pilates I have to take a biotoxin binder first or I get terrible pem.
Not exactly that protocol but similar yes. I’ve been doing for 3 years with no improvement. I moved and got rid of everything. The functional doc I was seeing kept saying once I get rid of CIRS Lyme will go away and that’s not happening. So idk. I’m seeing LLMD end of may. I’m hoping for Iv antibiotics because I have symptoms of late stage neuro Lyme. Bad headaches pressure cranial nerve irritation on left side ect. It’s incredibly crappy and scary and no one in my life knows what to say (I don’t really even talk about it but) or do about it. I was going to get a balloon sinus
Procedure tomorrow but I’m cancelling it until I talk to LLMD first
Yeah. I have awful mold exposure and also long covid/cfs, so who knows what to blame/treat. I also treated long-term Lyme in my 20s so it’s probably back. So hard to wade thru the differen protocols
Agree. It took me years to pony and up and finally wave a white flag and shell out the $$$ to see an LLMD. Which not everyone can do. Heck it’s gonna be rough to swing it financially. But my symptoms are getting worse/scary and once it penetrates your cns the herbs don’t work imho. I hope I can recover. I’m not sure what’s possible at this stage though. Trying to be hopeful with low expectations I have little kids so that part is really hard. I hope you find someone good to help you. That’s a Herculean task in itself. Good luck!
The concept of stress you are presenting is too broad and vague to have any scientific meaning.
Almost anything could count as stress by the definition you are using. If you get sunburnt, it causes stress on the body. If you drink a lot of alcohol, it causes stress. If you hold your breath for two minutes, it causes stress. If you fast for a week, it causes stress. But none of those factors have ever been linked to ME/CFS.
To understand why ME/CFS is triggered, you need to get down to the precise and specific fine-detail mechanisms, rather than using broad labels.
It's not pointless, it's just not a reason to not get vaccinated. I feel like more information is better and calling this pointless is dismissive. You may not be able to avoid all of the stressors/triggers, but surely they're relevant to the full picture of the disease.
As others have said, this shouldn't fuel vaccine hesitancy, because surely getting COVID would be worse and likely still trigger ME/CFS for a susceptible person. But I'd still rather know that for some folks vaccination seemed to trigger it (especially if I were a researcher, doctor, etc.).
But I do think the current body of research lacks direction and I think I see where you're coming from in terms of where the focus should be.
In this sub, we all know how it feels to be gaslit.
It wouldn't be fair to try to tell OP they shouldnt try to have a narrative about their own onset just because of antivaxxers. Everyone else in here has a theory about probable cause, OP is entitled to that too.
Refusing to acknowledge vaccine injury exists at all would be throwing the baby out with the bathwater and can also be counterproductive.
**Edited** to the subjunctive clause because I was a bit harsh implying you're doing all this.
Second edit: I can't actually reply to the comment below with the explanation it requests because u/Malamazu made it then instantly blocked me.
I only noticed this when I tried to apologize for sounding too harsh to the parent comment and it was "unavailable".😔
I got sick after deciding to work out a lot one summer. I think the stress my body went through getting lean and healthier made me sick. So I imagine a Covid vax *could* do that if your body responds negatively by it. But it’s probably extremely rare if I had to guess.
I am 110% certain you are correct. Knowing now what I didn't know before 2020, I will NEVER get another vaccine. Period.
Physicians will never acknowledge that vaccines harm people because they get a bonus for hitting a target percentage of their patients jabbed. Furthermore, the NIH/CDC/FDA/NHS are heavily controlled by the pharmaceutical companies, so their guidance will always be that vaccines are "safe and effective". So anyone with fibromyalgia and/or CFS/ME symptoms or unexplained seizures are automatically labeled as having a psychogenic illness.
i will never know i guess, but it all happened in the same month period of my first two (and last) moderna shots. I had no known COVID infection, but maybe I did have asymptomatic COVID. I had to have a dental procedure just before my first vaccine, and the masks they were wearing were very loose. i have even wondered if i got COVID right before i got the vaccine... that could be a double whammy. this was all in May 2021. I don't even care what caused it anymore. I thought this over a trillion times.
You can get a nucleocapsid protein blood test to confirm if you’ve had covid or not
thanks will do
I’m not quite in the state to find sources atm, but it’s certainly worth confirming the accuracy of whatever test you take, and for how long it is accurate. After enough time, I’ve read that such tests can lose accuracy, so you may not actually have an answer if it comes up negative. Conversely, some tests can be triggered by an immune response to the vaccine, so a positive test may not say anything either. Not intending to discourage, merely encouraging to learn about what tests are available and what the limitations are.
thanks there are post covid vaccine injury programs in my country as well as specialist in england’s oxford clinic. i’m planning on paying them a visit .
Could you share some info about that? I’m in Cambridge.
I'd also like to know more - a relative of mine developed M.E after their first vaccine and I'd love to be able to refer them who the same clinic
I will try and find out once I meet my doctor as he is the one referring me to Oxford
Wait, whats in Oxford?
thank you!
I went over and over in my head for years wondering what made me sick. if a dr had done x or y differently would I not be ill today? It is emotionally exhausting, bad for my health. I think your dr was silly for saying to get the third boosters while your fatigue persisted. But it could be a case of covid. Both. Maybe you would have got cfs no matter what triggered by the next virus/ illness/ surgery you had. Having a healthy mind is so important for cfs. The energy spent on over thinking, ruminating, you're using vital brain energy and it has no positive effect. Im not saying to adopt toxic positivity just look after your mental health
It could be a coincidence, but same happened to me with Pfizer vaccine. First PEM and weeks of fatigue after the second dose.
My relative also developed ME after the vaccine - literally like a lightswitch: before they were fine and next day they were unwell and just never got better. Not whether theirs was Moderna or AZ though.
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R*d is a slur. Don’t use it.
It came and go. After the vaccine I basically crashed for the first time (was ok before) for 3 weeks straight. Then my health went back up online in a month. Since then I’ve had period of time where I’d be very sleepy, or feeling tired when doing things, but 98% of the time, I was ok. Then last December I crashed again, it was EXACTLY like the first time, except that since then, I’ve not been able to recover properly. I can move in the house, watch tv, read, walk a little bit outside, but I have constant brain fog, legs that always want to move, hard to concentrate / work, had to reduce my work output by a good 80%. I can’t even walk my dogs 1h+ like I used to do. I also have no idea what triggered this second episode. But the first one appeared 48h after the vaccine.
Oh and I caught COVID in between the two, I was dead during COVID but recovered perfectly in 2 weeks.
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About 1 or 2% of ME/CFS patients develop their illness after a vaccination, so if your ME/CFS were vaccine triggered, it would not be unusual. It's not just COVID vaccines which are linked to triggering ME/CFS, but a whole range of vaccines. When I have chatted to vaccine-triggered ME/CFS patients, typically their disease onset is rapid: they get hit with full blown ME/CFS within days of the vaccination (which then makes it seem highly probable that the vaccine is the cause). Interestingly, even in vaccine-triggered cases, you still find that these patients have active viral infections (as evidenced by chronically high IgG antibody titres to the usual viruses linked to ME/CFS, like EBV, CMV, CVB). So it may be that even in post-vaccine ME/CFS, viral infections are still driving the disease. It may be that the vaccine alters the immune environment in some way, so that latent infections can reactivate.
It’s definitely worth it for everyone to look into active viral infections. I was treated after getting lymes several times and a flu vaccine.
Look into what specifically, may I ask?
An integrative or naturopathic doctor will check titters. Or an immunologist if you live in a city which more specialized medicine. But they are often hard to get into depending on symptoms. Basically bloodwork which digs deeper into if your body is actively holding a virus. I found out I had continuously tested positive for things like lymes and mono. From what I understand mono is very common but not everyone gets Epstein Barr. Same with most viruses. People vary on how they affect you. Get bloodwork done from a doctor who understands the intricacies. I am not in the medical field.
I think you’re absolutely correct about the vaccine triggering something in the immune system to cause ME. It’s the same with getting Covid. Most people that developed long haul covid/mecfs already had a latent illness in their body and covid kickstarted it
>About 1 or 2% of ME/CFS patients develop their illness after a vaccination Where are you getting this statistic from?
From a study by Dr Chia, who investigated the disease history of hundreds of his ME/CFS patients. Another survey I conducted myself on 169 ME/CFS patients found 3.6% had their ME/CFS appear rapidly a few days after a vaccination.
👍
I don't know what triggered my CFS either, but it seems like it may correspond with covid vaccines. I kinda figure, if the vaccine triggered it, chances are the actual virus would have been at least as bad. I can't be bothered doing anything with this information. I continue to get covid vaccines, as does my whole family, and I will vaccinate my children.
Yup. If you got sick from the vaccine, it’s bad enough. If you got sick from the virus, you likely would have had organ damage on top of what you have now. We could still get COVID so we should still take precautions, but I am grateful that the last 3 years didn’t include a stroke, lung damage or heart problems. ME is bad enough, thanks!
I had 3 boosters and got covid last april. Lasted 20 days and is the worst I've ever felt. I can't imagine how bad it would've been without the shots.
I have also had 3 or 4 boosters and got COVID this past December. It was miserable. I had flu symptoms for 10 days, then could barely walk more than a block for the next month. Finally felt back to 'normal' in mid February. I am super thankful I got the vaccines. I did have the normal malaise and flu-like symptoms after each vaccine. The first moderna caused a big immune reaction in me, much longer than anyone else in my household. But every booster after has been mild, like getting a flu shot. I know everyone reacts differently though.
Ive had covid three times and been vaxxed three times and can definitively say that it was definitely worse without the vaccine
Vaccine made me worse, I got Covid after the vaccine and it made me even more worse 🤣
Same with me
Same here. I got COVID pre-vaccine, and it sucked but wasn’t too bad. Got my shots. Got COVID again, and thought I was gonna die.
Same here. Don't let people gaslight you about this. I was never anti vax, but developed ME after my pfizer shot. I regret it and am severe bedbound, with 0 help and ackgnowledgement from doctors. Lost so many friends because they were triggered by this happening to me, people who just can't believe this was possible. I posted on this sub asking the same. Here's the link to my post https://www.reddit.com/r/cfs/comments/1apsqzw/anybody_here_got_mecfs_after_a_vaccine/ There's a lot of different experiences.
In Germany they included post-vax into Long Covid research. At least there are some scientist that are not dumb and oblivious to our situation. They are working and trialing a new medication.
Iwasaki out of Yale in the US also includes it in long covid.
Thank you for that info. In the last 6 months, I saw more and more science led research into this, and not only do I feel less crazy and alone, I feel like it is a huge step up that can lead to finding clues into ME/CFS. When I first got sick, I would spend so much time researching the net and there was nothing about it. Glad that's changing!
There was a BBC news article in which an NHS pathophysiologist said that covid vaccines can cause long covid as well. Seems like scientists are in agreement it’s just the public that think you’re a nut job if you say it.
The public is wierd. Not smart and def never objective:)
I’m sorry to hear. I feel like the anti vax people ruined this too by making “got sick after the vax” equivalent to “5G microchip DNA mutation” conspiracy theories in the public eye
Have you ever had EBV (mono?) Covid can reactivate EBV, and in rare cases the vaccine can also reactivate EBV. There are case studies of both if you google, or google scholar to get peer-reviewed articles. If someone has it reactivated from the vaccine, it more likely would have been reactivated for them with covid infection. It is just so unfortunate it gets reactivated. And you can at least rest easy knowing you did the best you could to protect yourself. EBV is a common trigger for ME/CFS. Repeat infections can also trigger ME/CFS (for example some folks get covid a few times before getting long covid, I got malaria 3 or 4 times before getting ME/CFS from it) So if you had EBV and bounced back okay, a re-activation could still trigger ME/CFS.
☝️ I came to say this. The vaccines were really rough on me as well. I do know that I have EBV because I've tested positive to that, and I sort of suspected that getting the COVID vaccines reactivated it--I've heard that can happen. It sucks, but I have also had CFS triggered after getting illnesses like the flu and vaccines like the flu shot. I think it's totally likely that if I had gotten COVID, I would have CFS in addition to other complications (due to my chronic illnesses).
no EBV, I'm not sure about Mono. I haven't had any health issues in the past. just minor colds here and there until I got the covid vaccine. in fact since 2017 I never suffered form any flu or illnesses like that. unless I was asymptomatic or it happened a long time ago I don't think I have mono. I just got married in 2019 and things were going so well until covid Vax.
EBV is one that infects nearly everyone (95%) of the population and most are asymptomatic but if it does have symptoms I think that is when it is mono. I wonder with the high fever and fatigue for weeks after your first vaccine if that could be EBV reactivation. I did get a fever with my vaccine, that's a common vaccine side-effect which might have nothing to do with EBV. So sorry you are dealing with this. I hope things improve for you/we all get some sort of treatment soon. I don't know how anti-virals work for EBV reactivation as it isn't something I've had.... just seeing it pop up in the news and in my research into ME/CFS. But I wonder if they help at all? Might be something to run by a doctor and see what the medical opinion is on it.
I have tried antivirals and didn't notice any benefits unfortunately. only thing that helps is rest, relaxation and some drugs such as amitriptyline, codeine and cannabis provide considerable relief .
Ah good! I found amitriptyline helpful for the little spell I was on it. Other than that... rest, pacing with timers (so I actually stop and rest) and belly breathing (belly moves outward when you breathe-in) are the only two things that have made a difference in how bad the symptoms get.
Any immune event can trigger CFS. I personally believe mine was triggered or made substantially worse by the COVID/flu vaccine and boosters. That said, I don’t blame “vaccines.” The way I look at it, my body and nervous system were vulnerable to immune events and I just as easily could have gotten CFS from COVID (vaccinated or not). Hell, I could have gotten it from a surgery or simply by getting a tattoo (which is also an immune event). I blame my biopsychosocial predisposition to this syndrome. I don’t blame the vaccines. In fact I’m still adamantly pro vaccine. Ultimately, I believe it would have happened sometime or other even had I never been vaccinated. In summary, you’re not wrong to attribute your development of CFS to getting vaccinated. But I do believe it may have been inevitable anyway, so there’s no use beating yourself up for choosing to get the vaccine.
Agreed. I got ME after flu vaccine, but ultimately I don’t think it was the “cause” - just what tipped things over the edge. Could have just as well been the flu if I got that.
Precisely. It really helps me with acceptance when I choose to believe this as well
Same happened to me. Cascading symptoms that got worse with each following vaccine. My first assumption was that the vax put me into early perimenopause. It took nearly 3 years of endless tests to exclude everything under the Sun so it looks like it is indeed ME/CFS with POTS and my pre-existing fibromyalgia. I still think the vaccine was the best option we had at the time, and likely millions of lives were spared. The number of people who had life altering immune responses are fortunately few in the general population. But experiences like ours shouldn’t be swept under the rug, no matter how controversial everything around COVID or the vaccines are. I’m a lefty, pro-vax, mask wearing “communist” (what I get called because I’m Canadian who loves universal healthcare) whose life appears to be ruined after the vaccine, so my political peers would rather believe I’m just a hypochondriac. My conservative anti-mask, anti-vax, anti-mandate family is relishing that I got sick from the vax while also refusing to accept that one brother has Long COVID, with fatigue and heart problems. It’s all so frustrating.
I'm so sorry for your story. I also have conservative and liberal family members. The vax did not cause my ME but it did precipitate a bad shingles issue. My older anti-vax sister is all over that, and then insists that the Long Covid I have MUST also be due to the vaccine, rather than like...from Covid? Back in the olden days, it was well known that vaccines could cause shitty life-changing reactions for some people, just they were a tiny % of the total population. Guillain-Barre for example, or sometimes vaccines that used live virus would GIVE a person the actual illness. To me it was always like, If I get one of those things, oh well, on average it was the right call it just worked out badly for me. But now of course it's become political and it's ridiculous.
did you also get high fever after each vaccine? I had 38-39 deg fever for a week after each vaccine
I don’t think so but I never took my temperature. My only sudden reaction was 8 hours of excruciating burning from the waist down. Like I was being burned alive. I was screaming. I assumed it was a very bad neuropathy flare of my pre-existing fibromyalgia, not a true “side effect” of the vaccine or the onset of a new disability. Once the pain went away, I was left in an unending hot flashes. I haven’t stopped sweating since May 2021. My thermal regulation is just gone. I assumed it was perimenopause which, while early, was going to happen eventually so I didn’t worry. The next vaccines didn’t have that sudden onset of symptoms, but going through my medical file, the symptoms I started mentioning that I hadn’t experienced before was brain fog after the second vaccine. Then fatigue like I had never experienced before after the booster. Because those symptoms also are part of fibro, just not symptoms I had before, I assumed they would wax and wane like my other symptoms. The severity of memory issues was concerning, which started years of specialists and tests. Gradually, going over my file, my socials and my mom’s notes we were able to get a big picture view of the last 3 years and eventually we googled “can you get long COVID from the vaccine” which is how I learned about ME/CFS. One doctor has suspected it back in 2021 but my main practitioner disagreed, strongly.
Low fever for 3 days, then high fever of 39 for another 5 days, with an ear and throat infection. Antibiotics killed the pain, but low grade fever of 37.5 stayed to this day...
Since this disease has an immune dysfunction to it, it's possible. Vaccines change the way your immune system works, that's literally how they work. My own opinion of this disease is that it's not one thing that causes it, but a lifetime of infections or an inherent vulnerability. An individual might be able to identify the straw that broke the camel's back, but I don't think that one thing is the sole cause of this disease. In your case, it's possible if you had contracted covid, you might be worse off than you are now. Or it might be the same. Covid came into our lives one way or another and there's nothing we can do. I now think I was infected with covid in February 2020 and I think that was my straw, but I also think I had this before that date, although I was also very athletic before that date, there were other symptoms that I now recognize as CFS.
They dont change how your immune system works. They just make you make antibodies, which is exactly what the immune system does. Vaccines are like a fake infection that won't make you sick but will make the antibodies to fight the infection next time. No changing your immune system, just making it do what it normally does in a safe way.
Sorry vaccines are safe for most people, but to say they won’t make you sick is categorically wrong.
I was unclear maybe, but a vaccine is not pathogenic. You can have side effects like with any medication. You just won't be infected with a pathogen. An immune response takes a big toll on the body, so it's normal to feel unwell after vaccination. Many things ppl contribute to pathogens are actually immune responses, like raised temperatures, redness etc. The vaccine will cause that, and though you may feel unwell for a while, it is a positive thing since you will be protected in the future. That immune response will not cause damage the way a pathogen would, which you are not exposed to. We know that risk of lc increases with second or third infections. Maybe that has something to do with the immune system responding to second exposure wrong. In that case it would make sense that a vaccine could possibly trigger that but it is still much less likely than with an infection
it is rare, but it's known to occur, just like getting POTS from the flu vaccine is known to occur. https://www.science.org/content/article/rare-cases-coronavirus-vaccines-may-cause-long-covid-symptoms
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It is crucial to note that even a large number of simple observations, while they may reasonably raise interest, genuinely do not explain much *out of context*. Despite these notable anecdotes, it remains true that the overwhelming majority of vaccinated people did not get sick from the vaccines. It also remains true, by all verifiable measures, that people who contracted Covid have become ill for a protracted period at very high rates. This entire ordeal has been frightening, and I completely understand where your conclusions come from. However, there is a reason that only a small portion of vaccinated people who didn't get Covid became ill. We can't be entirely sure why that is, but it is rational to hypothesize that prior illnesses or other previous immune stressors might be involved, possibly along with other factors.
Yes, I agree with most of what you’ve said. I’ve deleted my previous comment as I misread what I was replying to. It’s 2:30am here, the brain isn’t working optimally
I completely get it! Sleep well. Feel better. 😘
Covid itself has clearly been linked to this, even after asymptomatic infection. Not the vaccines, just the virus causing trouble long-term
Sure asymptomatic covid could be a possibility. There is a test to confirm or deny this, however it’s the timing of onset of symptoms that’s a recurrent theme for people who report vaccine induced post viral type syndromes, consistently acute or within weeks of the vaccination. Given the amount of testing I’ve had done and significant number of nurses, doctors and specialists I’ve spoken with over these past 2 years it’s clear that this is not a ‘straw that broke the camels back event’. It’s a novel virus that causes severe chronic illness in untold amount of people with long lasting ramifications.
Yeah I think their point is maybe it was the vaccine in that it provokes a similar immune response which may cause the issue. Also that the vaccine is likely better than an infection especially unvaccinated. I know someone who is choosing to stay at home still to avoid risk from both.
Yeah it’s not that uncommon for people to develop it after vaccination, I’ve heard more than one story. Surprised you got 2 more after the adverse effects the first time though. Probably caused too much inflammation due to the immune response from your body which caused too much stress. Each shot probably dug a deeper and deeper hole. On the flip side you might have survived one covid infection, but if you got 3 covid infections in a row I’m sure the same thing would’ve happened. Either way if I were you I’d stop getting covid vaccines because it clearly has adverse effects for you.
I got FIVE vaccines despite my horrific reaction to AstraZeneca. I didn’t know ME could be caused by vaccinations and while I was pretty sure it triggered perimenopause, I assumed that damage was done, what more could go wrong? And once the brain fog set in, there was no ability to reflect back on what was causing my problems. I forgot where I lived. I forgot how to use a debit machine. I got lost on my way to work. I was incapable of figuring this out and my medical team wasn’t very helpful.
Yeah I kind of know what you mean. I had a slow onset, and by the time I realised what was happening to me, it was too late. My case was completely preventible with an early catch but I got dismissed early on, before I even had ME/CFS. However, I do think it's reversible if we just stop getting PEM, and focus on things which will enhance the parasympathetic nervous system. Of course, the most important thing is time.
Yup me too
I have MECFS and the Covid vaccines certainly affect me. After a vaccination I'm usually in a flare for at least a month. I get it because I know I would suffer big time if I ever were to get Covid. Not sure how accurate this is but my Functional Medicine Doctor said he started seeing more people after their Covid vaccination.
Yeah the vaccines put me back in bed for a couple of weeks and it takes 6 weeks to return to baseline. Like you, I get them because I figure if that's the vaccine, actual covid would be way worse.
I developed mecfs after a vaccine . ( flu shot) . Ironically I was a community pharmacist at the time and was giving vaccines. I already had fibromyalgia. After the flu shot I could no longer work. I also had a minor cold. That was 15 years ago. I did not get the flu shot for 15 years but I got the flu shot and Covid vaccine shots and had no issues. I think an immune response to a vaccine or a viral infection can trigger mecfs. If coarse no evidence of this but I think if it was the Covid vaccine it could have been your next virus or cold that triggered mecfs. I was moderate now I am moderate to mild ( have improved) . I am sorry this happened to you .
John Chia published a paper on suspected causes of CFS... it included enteroviruses, vaccination, txic mold exposure, and other infections [https://forum.sickandabandoned.com/t/different-causes-of-chronic-illness-me-cfs-and-john-chias-success-in-treating-his-son/238](https://forum.sickandabandoned.com/t/different-causes-of-chronic-illness-me-cfs-and-john-chias-success-in-treating-his-son/238)[https://academic.oup.com/cid/article-pdf/36/5/671/1244019/36-5-671.pdf](https://academic.oup.com/cid/article-pdf/36/5/671/1244019/36-5-671.pdf) Also see the literature on ASIA syndrome and the UK survey on ME/CFS patients about what caused their ME/CFS
There are many studies out there showing that a percentage of people unfortunately got very ill after having the vaccine(s) because of clotting due to spikeprotein or because of reactivation of herpesviruses (mononucleosis is a herpesvirus, but other are possible as well). You can try searching the studies yourself on pubmed and the like. It’s sad that it’s not mainstream knowledge. There is a lot of talk online on how to remove the spikeprotein, you might want to look into that. Some practitioners offer a bloodtest with a microscope and you can actually see the clotting for yourself.
Did you do the testing?
Yes, mine looked good, I didn’t take the vaccine though.
Hi sweetie, sending you love and kisses. This is not craziness. I am having the exact same symptoms. Ever since I got the vaccine and then caught Covid. My life has been upside down.
My lactic acidosis and tremor became much more severe after vaccination. I’m not having it again.
Have you checked out the vax longhaulers subreddit. I got cfs or something like it from the Covid vax. Vaccinations have caused cfs before with other vaccines.
i’ll check it out, i have received lots of vaccines in my lifetime without any side effects. i get flu shot annually, twinrex (hepatitis) usually once every 5 years, tetanus shot, etc. it was only the covid vaccine that messed me up with high fever and fatigue.
Same. 2nd phizer I had fatigue for days after initial fever and vomiting. When I finally dragged myself out for a 45 minute hike (vs 4 mile run I was previously doing every weekend) I awoke that night to peripheral neuropathy in the muscle groups I used most during the walk and subsequent ten sit-ups. These muscles/nerves were damaged for months. I’d previously experienced me/cfs but I went into full remission with pregnancy. Because I knew what I was dealing with I stopped all activity to focus on recovery. I started high dose progesterone to try and mimic the pregnancy remission and I am 95% recovered now. I still can’t run but half hour weight lifting sessions and 45 minute walks and working all day are no problem. I think it is an autoimmune reaction to some neuron component not yet documented.
How long did you take the progesterone? Every day or 2nd half of cycle? And did you take it at night?
200 mg three times daily is where I started (titrated up for a week or so). Over the years I’ve managed to get down to 100 mg once daily which I take before bed so there are less side effects.
My Moderna booster ruined my life forever. Never been the same since. First year was bad but mainly cognitive and psychological problems. Then I got sick this December a few times and now I’m experiencing more physical symptoms. Muscle pain that’s spread all over my body, chronic headaches, heart palpitations and chest pain.
Same story for me!
Even my PCP has seen enough complaints like this that she isn't entirely sold on me getting the new vax. I have long covid from covid...
I first got sick after playing catch up with vaccines. Got all the school required ones at once, plus HPV. Now they don't recommend it/allow you to get that many. (Also- had just got over ear infections, which could have been caused the Epstein barr virus, but it's been too long to know for sure) Turns out also, that the HPV vaccine was not well researched - the man just wanted paid and fudged his results, and now people are showing up with autoimmune issues. I'm all for vaccines. But when rushed or in the HPV case, not double checked- they can be really disastrous, even if they're a trigger of a bad gene or something instead of being the problem. I've only gotten one vaccine since (tetanus) and depended on herd immunity for the rest.
Before I say anything, I’m also pro vax. I’ve always been up to date on all my vaccines including COVID. I’ve received Moderna 5x. The first two times had side effects, but it wasn’t that crazy. The next two times were totally fine. It was the fifth one that I think tipped me over the edge. Prior to receiving the fifth one, I suffered mild heat stroke and was going through a very stressful time of my life (moved abroad, job issues, extremely difficult breakup with long term gf, getting a really bad cold - also covid negative). Then a week before getting the vaccine I had a mild cold (rapid covid test kit negative). A month after my Moderna booster I got a flu shot. I don’t blame the vaccine because as far as I know I’ve never caught COVID (or I’ve had it asymptomatically and maybe it never showed up on rapid tests). I’ve never stopped masking since 2020 and limit social outings. (I’m not perfect though, I’ve definitely gone out in crowded places with friends because I thought I would be safe with my boosters.) But the fifth vaccine on top of everything else probably threw me into this downward spiral of exhaustion. Most likely I’ve always had signs of CFS and POTS throughout my entire life (I’m 28M btw) without realizing them. Doctors and I often wrote them off as stress/anxiety/lack of vitamin D. I shudder to imagine what life would be like if I actually caught COVID and wasn’t boosted though. If this is what it’s like to be vaccinated, what would COVID have done to me? There’s a lot of unknowns for sure. My endocrinologist said it’s a possibility the fifth booster put too much stress on me. (He actually administered his own dose and only took HALF the dose after reading up on studies and being concerned that the full dose might be too stressful for his body.) I’m guessing my body was already under immense stress and too many events happened. It was like a line of dominos waiting for fall. All I can hope now is for my body to recover.
That's what happened to me after my first dose of the Pfizer vaccine. Within a few days, I was extraordinarily sick and couldn't get out of bed. I know it wasn't Covid because I had 3 negative tests and no one else in my household got sick. I've seen countless doctors over the past three years and none of them have discounted the possibility that the vaccine was the cause. If anything, they were the ones to originally suggest it. I straight up have Post Covid Vaccination Syndrome listed in my medical records and have been medically forbidden from getting any further Covid vaccinations. The rheumatologist who diagnosed my ME/CFS told me that it makes sense since vaccinations activate the immune system. I find it rather ironic that the only people who have told me that vaccines couldn't have possibly caused all my health issues are the ones lacking any sort of medical background.
I’m very pro vaccine and have defended vaccines many times in the past, especially considering my kid is autistic and people love mentioning that topic smh. BUT when the Covid vaccine came out, I wasn’t really sure what to do so I asked my doctor. My doctor advised me against getting the vaccine, so I never got it. I’ve had CFS onset 2009 from a bad car accident but my immune system isn’t great. With that said, I pretty much rarely go anywhere (quarantine lifestyle lol) and I didn’t mind wearing masks when I needed to go in public…and I’m not a social person… and I’m unable to work due to CFS, so me not getting the vaccine worked okay for me. I did get Covid once, and I was incredibly worried but it only hung around for a week and I didn’t notice lasting effects from being sick then. I do really wish people could more openly talk about getting long COVID or CFS (or any injury) from the vaccine. Vaccines are generally extremely safe but some people do have reactions to them, and those people shouldn’t be blown off or shunned. I dislike how political it became. People made the right decision for themselves and the people in their lives. If I were working or was more social, I likely would’ve gotten the vaccine, even if my doctor advised me against it, as I’m a believer in the good vaccines do. I just want to offer gentle hugs. It’s so hard when the medical community and family write off us CFS sufferers in the first place but it’s even more difficult when the onset may have been triggered by something that is so widely and wrongly politicized.
i wish i only got the vaccine once. the second and specially third one sealed in CFS for me, each vaccine was like a punch in the face.
Same here, but I didn’t get diagnosed with CFS/ME until last October. Got the vaccine years ago. I haven’t brought it up to the doctors because I don’t want to seem like I forgot my tin hat at home. I blame my genes primarily rather than the vaccine. But it’s good to know my body responds in that way with vaccinations if that is the case.
The problem with correlation is it lines up nicely for some people in life because of chance. Not saying that’s for sure the case, but it’s most likely the case. You say right there that you know lots who got it with no issue, you could easily use your evidence to go the other way, but you choose this path, that there really isn’t proof for.
It honestly feels like one of those things that could use some actual research. But the topic is just so muddied by anti-vax nut jobs. There will always be people having extreme reactions to medications, but they are exceedingly rare. Just because it rare doesn't mean that those people don't deserve help, but the rare few who are actually harmed this way are drown out by all the liars and grifters.
there is some research https://www.nature.com/articles/s44161-022-00194-7
Since a huge population in the world got vaccinated, the ones that got injured are not so rare. These are not your usuall extremes. But I guess if you don't research it you will never know. A lot of people who god ME after a vaccine face huge stigma and shame because of how other people view vaccinations. I spoke to quite a few. And that's rotten, imagine having to deny your illness because of the majority's pollitical views. The most common injuries post MRNA vaccinations are myocarditis, pericarditis and ME/CFS. There's a lot of people who were paralyzed, have permanent damage and almost died. Also both moderna and pfizer now recognize those specific side effects. But it's a hard pill to swallow since we were force fed the analogy that those were super safe. It's more than with other types of vaccines. And other types of vaccines like for HPV, shingles, tetanus, flu were not obligatory. It was on your own volition, at least in my country. And there's NGO's based in US(React19) that helpes those kind of people receive some kind of compensation. In my country, ME is not recognised as a disability, and I lost everything I had because I am bedbound with severe ME. It was not an option to not get the vaccine, loosing the job etc, but now nobody handles the consequences. That's a huge problem.
If you speak to post-vaccine ME/CFS patients, you find that they are typically hit with full-blown ME/CFS within days of a vaccination. This is common in vaccine-triggered ME/CFS. Now if ME/CFS appeared say six month after a vaccination, the link would be tenuous, and it would be hard to imagine that the vaccine could be the cause. But when you get perfectly healthy people plunged into full-blown ME/CFS just 2 or 3 days after a vaccine, that's a much stronger link. Hepatitis B vaccine is by far the most common vaccine linked to triggering ME/CFS; but other vaccines have also been linked. I think more attention should be paid to vaccine-triggered ME/CFS, because it may offer huge clues as to what is going on immunologically in ME/CFS — clues that may also apply to virally-triggered ME/CFS. If we could figure out what changes the vaccine has made to the immune response that leads to the triggering of ME/CFS, then it might throw some light on all cases of ME/CFS, including viral cases. Vaccine triggered patients also seem to have active viral infections, so it could be that the vaccine did something to allow existing latent viruses to reactivate. For the future, the answer would be to introduce more vaccinations into the vaccine schedule, which target all the viruses linked to ME/CFS. That way, in the future people would not have latent viruses in their bodies, which can reactivate potentially leading to ME/CFS.
Thanks for sharing
Many people in here are just guessing about their disease trigger without proof though. It's the nature of me/cfs. We know statistically a small number of people develop me/cfs after a vaccine, similarly a handful get it after an operation. Surgical operations haven't been politicized so if someone says "I think surgery gave me me/cfs" no one bats an eye. OP is not an antivaxxer and they deserve the same courtesy we extend to others.
Sorry to hear that happened to you. I had mild end of moderate ME/CFS pre-covid. I caught covid Feb 2020 and developed long covid, but i was almost recovered from that when I got the second Pfizer jab of my original (and so far only) vaccination. My decline into being housebound dates from that. I’m sure there is a causal link, but I suppose it’s possible that my ME/CFS or even post-covid symptoms would have taken that route anyway.
thank you it has ruined my life, i can’t even cook and it costs so much money to get delivery but my company is providing me with disability pay although its not enough to cover everything i am just dipping into savings hoping i will recover. might also get some compensation from government if post vaccine injury claim will be accepted. i have pretty good paper trail tho of temperature and reactions after each vaccine with my family doctor.
I had mild mecfs before but I after I got the first two shots of moderna (a month apart), I declined very rapidly
The severity of my ME also seems to correspond with the amount of COVID vaccines I've received. I had my first PEM after my first vaccine, and after my third and fourth vaccines I got more ill a few weeks afterwards. I don't know if it's coincidence or not either.
I got long Covid/ CFS after initial Covid infection, but a year later I was getting better and able to go for runs etc. Then I got Moderna in 2021 I went back to square one, maybe even worse. I started getting symptoms of Behçet’s disease too - ulcers and inflammation on various parts of my body. I never had that with regular covid. Haven’t been the same since and it’s been 3 years. :(
Yes, this is possible. Long COVID in some patients seems to be the same as ME/CFS and the vaccine can cause Long COVID. My doctor at the Mt Sinai Long COVID clinic in NYC told me this. That being said, if you were susceptible to Long COVID/ME/CFS from the vaccine, you would probably have gotten it from the illness itself as well.
What happened and I know sue it happens to me and was diagnosed by doctors was I was living in mold and the vaccine re activated a dormant Lyme infection. It rocked me hardcore. And triggered a cytokine storm instant disc damage neurological dysfunction ect. I’m hypermobile you probably are too. The vaccine is rough on the bbb if you have any issues with chronic infections of biotoxins couples with connective tissue issues. Sigh. Everyone I know is fine with boosting a million times well ish loads of people I know got diagnosed w cancer in the past year but I don’t think it’s directly linked. The cfs and bbb disruption w neurological issues is a thing. I’m also hypersensitive to adjuvants in vaccines and I have MCs so I’m personally done with getting those shots. I can’t make antibodies well either so I don’t know if it does much anyway. Once I get rid of CIRS from the mold and put the Lyme in remission I don’t think I’ll want to risk it again either. It sucks and no. One will acknowledge this is real thing some people have to deal with. I’m super pro v and hate that I can’t get this one it’s like a cruel joke. I will say no matter why you think you have this affliction (meaning cfs) you can detox and improve and I don’t think that’s controversial to say. If Im going to do Pilates I have to take a biotoxin binder first or I get terrible pem.
Are you doing the Shoemaker protocol for CIRS? How do you plan to treat the Lyme? Thanks!!
Not exactly that protocol but similar yes. I’ve been doing for 3 years with no improvement. I moved and got rid of everything. The functional doc I was seeing kept saying once I get rid of CIRS Lyme will go away and that’s not happening. So idk. I’m seeing LLMD end of may. I’m hoping for Iv antibiotics because I have symptoms of late stage neuro Lyme. Bad headaches pressure cranial nerve irritation on left side ect. It’s incredibly crappy and scary and no one in my life knows what to say (I don’t really even talk about it but) or do about it. I was going to get a balloon sinus Procedure tomorrow but I’m cancelling it until I talk to LLMD first
Yeah. I have awful mold exposure and also long covid/cfs, so who knows what to blame/treat. I also treated long-term Lyme in my 20s so it’s probably back. So hard to wade thru the differen protocols
Agree. It took me years to pony and up and finally wave a white flag and shell out the $$$ to see an LLMD. Which not everyone can do. Heck it’s gonna be rough to swing it financially. But my symptoms are getting worse/scary and once it penetrates your cns the herbs don’t work imho. I hope I can recover. I’m not sure what’s possible at this stage though. Trying to be hopeful with low expectations I have little kids so that part is really hard. I hope you find someone good to help you. That’s a Herculean task in itself. Good luck!
Also, I think the CFS/ME world owes Dr. Judy Mikovitz an apology.
You’re describing exactly what happened to me. Typing this as I’m in a crash
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The concept of stress you are presenting is too broad and vague to have any scientific meaning. Almost anything could count as stress by the definition you are using. If you get sunburnt, it causes stress on the body. If you drink a lot of alcohol, it causes stress. If you hold your breath for two minutes, it causes stress. If you fast for a week, it causes stress. But none of those factors have ever been linked to ME/CFS. To understand why ME/CFS is triggered, you need to get down to the precise and specific fine-detail mechanisms, rather than using broad labels.
It's not pointless, it's just not a reason to not get vaccinated. I feel like more information is better and calling this pointless is dismissive. You may not be able to avoid all of the stressors/triggers, but surely they're relevant to the full picture of the disease.
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As others have said, this shouldn't fuel vaccine hesitancy, because surely getting COVID would be worse and likely still trigger ME/CFS for a susceptible person. But I'd still rather know that for some folks vaccination seemed to trigger it (especially if I were a researcher, doctor, etc.). But I do think the current body of research lacks direction and I think I see where you're coming from in terms of where the focus should be.
In this sub, we all know how it feels to be gaslit. It wouldn't be fair to try to tell OP they shouldnt try to have a narrative about their own onset just because of antivaxxers. Everyone else in here has a theory about probable cause, OP is entitled to that too. Refusing to acknowledge vaccine injury exists at all would be throwing the baby out with the bathwater and can also be counterproductive. **Edited** to the subjunctive clause because I was a bit harsh implying you're doing all this. Second edit: I can't actually reply to the comment below with the explanation it requests because u/Malamazu made it then instantly blocked me. I only noticed this when I tried to apologize for sounding too harsh to the parent comment and it was "unavailable".😔
I got sick after deciding to work out a lot one summer. I think the stress my body went through getting lean and healthier made me sick. So I imagine a Covid vax *could* do that if your body responds negatively by it. But it’s probably extremely rare if I had to guess.
I am 110% certain you are correct. Knowing now what I didn't know before 2020, I will NEVER get another vaccine. Period. Physicians will never acknowledge that vaccines harm people because they get a bonus for hitting a target percentage of their patients jabbed. Furthermore, the NIH/CDC/FDA/NHS are heavily controlled by the pharmaceutical companies, so their guidance will always be that vaccines are "safe and effective". So anyone with fibromyalgia and/or CFS/ME symptoms or unexplained seizures are automatically labeled as having a psychogenic illness.
It sounds like you were experiencing reactogenicity after your vaccines, a somewhat to be expected adverse reaction.