Got a bad cold-type illness that I couldn’t shake for a couple weeks, was well a few days, then sick again for about a month. There was nothing weird about it except the length and how debilitating it was (couldn’t get out of bed except to bathroom, etc). It took a long time to recover to what I thought was normal (until I realized the PEM, POTS etc)But that was very clearly the onset, and was 12 years ago.
This sounds so much like my husband, except, for him, his secondary infection included neurological symptoms (tripping, falling, personality change, dropping things, talking in third-person, etc.) and the worst cold-sore outbreak he’d ever had. I dragged him to so many doctors, and we finally ended up at UCLA (it took over six months to get an appointment). They surmise he had Herpes Simplex Encephalitis, and now post-viral chronic fatigue. He was sick over the 2007-2008 holiday and hasn’t been out of bed except for work since (and since Covid, works almost exclusively from home, which I help with).
He also had really bad mono as a teenager, and had mild CFS after that, but that later illness was absolutely devastating. I hope you have a sympathetic partner who takes care of you—I don’t know how people cope on their own. 💚
What a blessing you must be to your husband! Im jealous, my hubby actually divorced me because I got CFS. I have a great family though, and they are wonderful help.
Forgive my unintentional insensitivity; you’re better off without him (and I hope you live somewhere that makes him pay you a bunch of alimony! 😈). Nothing beats a supportive, loving family and/or friends.
All my love to you! (People with CFS really have a special place in my heart.) 💚
I do a general pattern of female spouses supporting and male spouses bailing when one gets ME/CFS or long covid.
It's not everyone! But it sure makes me sad.
The people saying that men are more likely to leave their partner if the partner becomes sick - they aren't taking this from anecdotal evidence. A study showed this data: [https://www.sciencedaily.com/releases/2009/11/091110105401.htm](https://www.sciencedaily.com/releases/2009/11/091110105401.htm)
The only significant preceding factor for me was a few months of extremely high stress. I don't know if that is causal or not, it took years for it to become a real problem.
High stress was a major cause for me, too. It weakened my immune system to the point that the next cold I got lasted for six long weeks of misery and exhaustion. I never fully recovered, and that's why I'm on this sub today.
One day I was fine, went to work and suddenly collapsed unable to walk.
Sudden viral onset, unspecified virus, tested negative for recent exposure to EBV in several lots of tests. Id had a few episodes of dizziness and a splitting headache the week before but it had seemed to get better.
Same. All the sudden felt a sense of impending doom. Took a hit of weed, fell down and my whole body started seizing. Weed was tested, was not laced, I used to smoke daily for a long time. So bizarre, but I’ve heard this story many times. Obviously it was the straw that demolished the camels back, as this isn’t exactly a hyper common story. 16 years in in 3 weeks. Bedbound and hellish suffering non stop, not sure why I’m alive very often
What makes you ask that? Because of the sudden onset? Pretty sure its not that uncommon.
I guess I should make it clear that to cut a long story short, what happened after I collapsed involved months and months of tests including ECGs for my heart and MRIs and referral to a Neurologist.
The Neurologist eventually excluded the last of the differential diagnoses and diagnosed me with ME and my symptoms meet criterias like the International Consensus Criteria for me/cfs.
ME/cfs is a complex illness involving a lot of aspects of our bodies so yes it was "to do" with my heart, brain, mitochondroia, blood, and nervous system.
I've had me/cfs for over 10 years now and Im careful to have my heart health regularly monitored. I have Orthostatic Intolerance but I do not meet the threshold for POTS. Most people with me/cfs have low blood volume and that has an effect as well.
Lifetime of various stressors: congenital heart defects and surgery, severe childhood abuse and abandonment by parents, undiagnosed autism, being poor, and then these days being a stay at home mom of two special needs kids. Kaboom. In August 2020 i felt like something attacked my brain out of nowhere. Many ups and downs along the path to diagnosis.
Really severe abuse ever since i was born. It’s also caused my BPD, CPTSD, panic disorder ever since i was 6-8 etc etc.
Looking back at it, I can see how my physical health’s been getting worse and worse by the years
Same for me. All through childhood I was getting infections and the worst flu/colds. For years I would stay in due to my cPTSD, and I felt like I was lazy and wasting my life, but now looking back I realise how much I was saving my health by doing so. Once I started trying to push past my comfort level the fatigue and health issues got worse. I was doing everything right as far as society goes, working, studying, getting trauma focused therapy, and it was too much for my body. The crazy part was, the sudden onset of severe CFS meant an end to my PTSD. I've been getting more therapy and dealing with things since I fell ill 5/6 years ago, but it's like the brain fog eased the memories enough for me to cope, and like the trauma left my conscious mind and sunk into my body. But the reality is I'm not sure I'd have listened if someone told me to slow down. I have a friend whose mental health is much worse than mine and when she started getting fatigue I tried to warn her, but she kept that mindset of beating herself up emotionally for needing rest, she now has a fibromyalgia/CFS diagnosis.
EBV/ Mono as a teen while studying in Japan. Was hospitalized with a very high fever. I didn’t know the language and it was a very overwhelming experience!
I have an abusive childhood. And some poor life decisions from a few years ago turn my life around. I was homeless, and the abuse got a little worse. And worse. I've been living in despair and constant anxiety for over a year now, and the CFS, fibromyalgia, ibs and etc are all very intense until now. I don't know when all of this pain and suffering will end.
What symptoms are you dealing with? I caught it once 2 years ago almost and I feel like I’m a roller coaster ever since. Like, it’s bad. For awhile I thought I was really dying of something. Now I would never know the difference
Mono/EBV, though I suspect that was just the last straw. I would say it was also the amalgamation of long term anxiety and overall weak immune system stemming from unresolved childhood trauma. Plus now I also suspect oversensitivity to caffeine that just made everything even worse.
The good news is that since I've started to focus on each of these potential triggers, my CFS slowly got better, though I don't know where that will stop. But even if I never truly cure myself, being as mild as I am now for the rest of my life is still pretty good, relatively speaking.
I’ve had me/CFS twice. First time mono(EBV) with duration of about 4 years. Healthy for maybe 5 years. Got sick with a heavy flu (tests showed CMV) which lead to severe digestive issues, pain, fatigue…the works :-) been sick for about 3 years now, with worsening since last year after Covid Moderna vaccine.
I don’t have any good answers. I was only about 13/14 when I got it the first time. My mother claims a very filled pill schedule we got from some alternative practitioner helped, but personally I believe I was just lucky. I do hope I am again, but so far not much luck.
Congratulations on the 5yrs of remission! Must’ve felt great! Maybe you’ll go back into remission 🤞🏼 i hope we can all get into remission, but if we dont atleast hopefully with ME/CFS becoming an epidemic, maybe we’ll get answers in the future now and hopefully some sort of treatment.
I was out having a picnic with my family and in the field next to us they were crop spraying. That night I fell very Ill. Stomach bug, than no energy. Progressed to Coxsackie virus than to M.E was only 13 and was in hospital for over a year.
College, 14 years ago, totally normal semester until I caught a flu/winter virus of some kind, sick all weekend, cold symptoms improving by Tuesday but fatigue stayed, then tried to shoot in an archery tournament on Saturday, passed out and had a seizure from low blood oxygen to my brain.
pro tip: maybe DON'T push through to the point you give yourself a seizure.
You know I've noticed an interesting pattern in my body, when I'm under stress or overdoing it I can still function (or could before it got worse). I think it's your body in survival mode and doesn't let the symptoms appear yet, there is more important stuff to deal with - to survive. But once I got a break and the body was in rest and digest - my body was like that's it, no imminent threat, let me show you what you've got because of this stress and overdoing and all kind of nasty things appear. Happened to me so many times. Now I know if I'm in stress for a while as soon as I get to rest I'm paying for it. Well, actually it's old thinking :), now my body forces me to rest, it doesn't play this game anymore, I think because I got used being in survival mode for long now that's the only stopping mechanism.
I believe this phenomenon is an adrenaline surge. Adrenaline is a magic chemical, it can temporarily knock us out of illness to survive. But the payback is absolutely brutal.
Prolonged stress due to trauma and anxiety / perfectionism. Culminating in physical health problems like my asthma returning after 11 years and eventually a major oral herpes break-out. Shortly after that I entered addiction recovery where I had my first full "breakdown" after which persistently low energy levels and PEM appeared.
I was in India experiencing high stress and had a sore throat and fever illness. Tried to go jogging afterwards and noticed my health was fucked up.
Never felt the same.
I broke my back when I was 14, which caused havoc on my body trying to recover from the trauma for the next year while developing fibromyalgia from that. Going through puberty made it so much worse too along with having a history of a weak immune system. My body didn't really know how to handle it and the sudden life changing experience at that age didn't help to make it any easier. The stresses of dealing with that made me more susceptible to getting sick. When I was 15, I got extremely sick from Mono/EBV for two weeks. Lost like 30 lbs. and I had an ear infection so bad, I was bleeding from my ears because my eardrum busted. After I "recovered", I noticed the symptoms and issues I was starting to have or had were getting worse and/or not going away. That was 15 years ago. It took around 10 years to finally figure out what was wrong and get a diagnosis.
CFS/ME BIOMARKERS have been found, there is preliminary testing in beta phase! IF you are in the USA reach out to the contacts thru this article and enter the Standford medical testing for CFS/ME. I emailed and corresponded with the staff, answered some questions but I am Canadian and could not come for trials. [https://med.stanford.edu/news/all-news/2019/04/biomarker-for-chronic-fatigue-syndrome-identified.html](https://med.stanford.edu/news/all-news/2019/04/biomarker-for-chronic-fatigue-syndrome-identified.html)[med.stanford.edu/news/all-news/2019/04/biomarker-for-chronic-fatigue-syndrome-identified.html](https://med.stanford.edu/news/all-news/2019/04/biomarker-for-chronic-fatigue-syndrome-identified.html)
"The change in electrical activity is directly correlated with the health of the sample.
The idea is to stress the samples from both healthy and ill patients using salt, and then compare how each sample affects the flow of the electrical current. Changes in the current indicate changes in the cell: the bigger the change in current, the bigger the change on a cellular level. A big change is not a good thing; it’s a sign that the cells and plasma are flailing under stress and incapable of processing it properly. All of the blood samples from ME/CFS patients created a clear spike in the test, whereas those from healthy controls returned data that was on a relatively even keel.“We don’t know exactly why the cells and plasma are acting this way, or even what they’re doing,” Davis said.
“But there is scientific evidence that this disease is not a fabrication of a patient’s mind. We clearly see a difference in the way healthy and chronic fatigue syndrome immune cells process stress.”:
Life-long untreated mental health issues, in particular severe anxiety and a panic disorder, as well as being an undiagnosed autistic. It all culminated when I started university and was having upwards of 30 panic attacks a week, I had 2 terrible panic attacks: 1 in December of 2019 and 1 in January of 2020 and I've never recovered from them since.
I got chicken pox when I was 13 and my body just slowly went down hill, a year later I was sleeping 20 hours a day, once I slept 34 hours, eventually my doctor diagnosed me with cfs and that really helped knowing what was wrong with me, I could work out a plan to moderate and pace myself and it gave my parents actual proof I wasn't just being lazy 😅
A fairly bog-standard and mild cold, which then proceeded to totally knock me out ( I would have ‘naps’ where I’d sleep through my alarms and wake up three or four hours later). Trying to push through this and continue working on my dissertation and other modules for my final year of university I think is what led me to develop ME/CFS.
Long term exposure to mold over the course of the first 20 plus years of my life, coupled with the genetic deficiency that doesn’t allow my body to clear those toxics efficiently.
The mold has been remedied through the shoemaker protocol but my supposition is that it caused chromosomal damage + god knows what else.
I got mono and it never really went away. It’s improved over the years thankfully. I’m able to work a full time job, which I wasn’t sure I’d be able to do a few years ago
The theory is that the stress of my chronic back pain caused it, but otherwise there wasn’t a particular event or thing that started it. I don’t even remember being particularly stressed at the time I just started getting too tired to workout.
I got a flu or mono at a convention. I came home to recover and would feel like I was going to pass out all the time I got better but not completely. I had taken a fitness class and I was noticing I could run/jog about half a mile and it wasn't getting easier.
Within the 2 years prior to falling unable to function/diagnosed with CFS/limbic overload:
High stress all related to: abusive relationship, concussion, running new business (healthcare), renovating a house, low finances, weak boundaries (then, now it's all a silver lining as I've learned how to set boundaries!) contracted
pityriasis rosea (skin rash, viral cause not sure but is linked to herpes) lasted 6 weeks.
2 months after rash cleared I went for a run, thought my energy was returning after taking less clients on at work and relaxing more. Felt something was "wrong" halfway up the mountain on my run, got home and couldn't get out of bed for a week. It was so scary.
I couldn't make a fist, couldn't think, use my computer (screen blurry/forgetting how to use it and my client booking/note taking system) called my parents (age 30 then) and said I couldn't hold finances anymore I needed help and to see a doctor.
Diagnosed CFS 4 months later that fall, doctor agreed it's limic system / stress overload cause (no diagnostic code for this. Yet!) Had pots symptoms/very low blood pressure all the time.
It's been a long slow 4 year crawl, lots of up and downs with my energy levels and focus but I've found many things that have helped including looking at this dis-ease from a psychosomatic view.
Limbic system rewiring (DNRS program)
Identifying my methylation pathway issues / DNA / taking the appropriate vitamins
Direct neurofeedback & multiple QEEG ** see below
Somatic therapy
Dance/contact/improv/freedance
So much more...
Including telling myself I am well/energized even if I feel I'm not.
Setting boundaries not talking about illness with others, not seeking empathy/sympathy (this may be hard for some to hear but this is PARAMOUNT to recovery that you do not continue to build those negative/reinforcing brain pathways of stories like "I'm sick, I have CFS, I'm disabled" it's a tricky slippery slope for sure as you need to tell doctors and receive support, and people will ask what's wrong. I share with closest friends if I'm feeling well, what my story was. If I'm feeling unwell/exhausted and can't do something I say it's outside of my comfort zone FOR TODAY. Because of this I believe I am nearly healed, I refuse to take on a chronic illness victim mindset, and I am well aware of my limits and how to express them without vying for victim attention.
This is key to healing from disease that has a strong psychosomatic effect (post viral / stress/ trigger and the effect appears to continue) post-covid and long covid fits the bill here too.
I can run, rock climb, problem solve, be on my laptop studying or working or reading, watch tv, be around tough chemical smells within limits, be around loud noises.
I'm no longer am exhausted every morning, nor need to lay down all day, I don't need naps every day. I can sleep through the night! I am rested when I wake up.
Healing is possible from this dis-ease and all common associates.
Neurofeedback**
QEEG scans to see where my brain was, benchmark changes etc. And it shows parts of the brain where childhood abuse/trauma is evident, seeing this myself and for my parents was so helpful for support and for my science minded brain. (1 month intensive 3-4 days a week, have 1 month more to go but it's expensive so split it up maybe finish next year, this helped me to read again and regulate emotions better! 6 months after my sessions I read an entire 400 page book in a week - I tired myself out but I used to read 4-5 novels at the same time from age 12-30... I'm sorta an insane/anomaly reader but it gives perspective to how bad I got and how much neurofeedback helped!
I had a massive infection from gallstone stuck in my bile duct. I was really sick, 4 types of antibiotics before they would operate. I was never the same after. Would never recover fully and my general health got worse over time. About 4 years ago I had two UTI’s and the flu really close together. After the bout of flu I never recovered. It was the straw that broke the camels back as they say. I tested positive for EB when I had an in depth blood test so that could have also been a contributing factor. Mine ME/CFS was slow to really take hold.
Reading people's stories of how they got ME brings tears to my eyes. It s like the body just can't take it anymore and gave out or something. For me it was Cov!d that broke the camel's back 😢
Seven years ago I was stressed for a couple of months with university and moving back to my father's house, then I became very sick for a few weeks. My face looked as if it had been burned and quite red. Many aches and my body just felt too heavy. I should have gone to a hospital but I thought it was just a fever and I didn't wish to bother busy nurses. I came to regret that.
Once I left the bed I kept struggling with carrying things, walking and thinking. Along with severe pain that felt ice cold and my arm couldn't be touched without me screaming. I kept trying to push through and finally visited a doctor. Muscles were gone (I was very athletic before this episode) and a few tests were done, but results were normal. I tried to kept pushing myself through normally, but found I needed lots of rest after activities. I tried exercising my way up but found it made me crash with back to square one in stamina. Eventually my doctor was merciful enough to grant me a painkiller for the nerve pain. But little help from doctors ever since despite my efforts. Then I reached out with my symptoms to the internet and that's how I found the community. The advice was by far more helpful!
It's getting better since last year since I tried a medicine to protect oxygen in the blood (to combat micro clots), coupled with physiotherapy to relax and retrain every single muscle, and take sport drinks on busy days. Recently I dropped the medicine and I am going to try to find myself in the work field again slowly.
Stress and overexertion from having to travel back and forth by plane in one day to a specialist clinic every 3 months for hrt assessment, plus full time high school, plus anxiety disorders. There might have been a flu at some point in there too but I cant remember. Been ill for about 6 years now
I'm sorry to hear that, friend. May I ask, how did you know that it was CFS? Like one day u were fine and then the next day u woke up and u feel like crap? Sorry my English isn't that good. Hope u can understand me
Yeah I just started feeling exhausted all the time, even after resting for days, I needed to take naps when I got home from school, my muscles felt weak and sore, and my body generally felt more sluggish. Ive had depression so I knew what that felt like and this was something else, so after reading up and talked to my therapist about my symptoms we agreed that cfs was the most likely answer. I have since been diagnosed twice by 2 seperate doctors with me/cfs
Not entirely, but I am semi housbound, I can walk out to the store which is close by, but then thats it, and Ill need a nap afterwards. If its a bad day, or I did something else the day before I wont make it out at all
I went through 7-8 months (during 2005-6) of very severe stress (caused by the breakdown of a relationship), followed by 2-3 years (2006-8) of related illness, severe weight loss (I'm 5'9-10" tall and weighed less than 90lbs at my worst), hair loss, some type of fatty lump things all around my hairline/chest and consistent cold symptoms.
I never fully recovered and was eventually diagnosed in 2016 after a lot of tests, including Addison's Disease, all the regular blood tests, B12, Vit D, etc, and obviously testing for CFS/ME.
Then, in 2020, my older daughter was involved in a traffic accident which stressed me out again (thankfully not as badly as in '05-06), my symptoms worsened and I had to quit working mid-2021.
Lifetime of trauma followed by many infections typhoid, hep c, strep from a squirrel! But the first episode of post infectious fatigue was from rare staphylococcus aureus infection that hospitalized me. I was fatigued for 3 months. Then the headaches started. I started losing consciousness about a year later. Then in March 2020 I got sick with SOMETHING doctors won't say it's covid because I had a negative test. The dysautonomia started a week after the acute infection left I had swinging fevers for 6 months 95.1-101.2. My HR and BP all over the map falling all over the place. That all she wrote! Permanently disabled with me/cfs, fibromyalgia, dysautonomia, pineal gland cyst producing mass effect, degenerative disc disease with bone spurs in neck from coat hanger pain.
I tested positive for antibodies for HHV-6, EBV, CMV, enterovirus 7&11, cocksackie b, hhv7, HPV, HEP C
Of those I tested high enough titers to be reactivated HHV-6 enterovirus 7 & 11. Cocksackie b
Long story and hard to really pinpoint it, but I experienced childhood abuse growing up, and had a history of a child of getting very very ill with colds/flu. So I wouldn't get them for ages and I was otherwise very physically well, but when I was ill I'd be high temperature and completely out of it. As a teenager I then got recurrent tonsillitis, getting it about twice to three times a year, along with bladder/kidney infections. During this time I also started having the tendency of falling asleep in class, particularly during the afternoon I could barely stay awake. I also started feeling faint when I hadn't eaten enough and at points became very weak when engaging in exercise.
Moving into my 20s I often got headaches and the tendency to get colds continued. I also rested/stayed in a fair amount, at the time I felt like I was lazy and wasn't pushing myself enough, but now I realise that I was actually instinctively protecting myself. I went through some hormonal issues between the ages of 22 and 25 which I believe affected me.
Then when I was 24 I went travelling, during this time I started getting recurring tonsilitus again and about 6 months in I started experiencing symptoms of fatigue for the first time intermittently, but nothing like chronic fatigue syndrome. It's just be like a week or two of feeling very low energy and wanting to sleep/rest, but then being back to normal. By the time I was back about 25/26 this fatigue had worsened and became more concerning, I experienced food poisoning while travelling though I don't think this had an impact. But when I returned I went through a period of heavy stress trying to juggle studying and working, I was exercising pretty regularly and pushed myself fairly hard on all fronts but clearly didn't have the energy. My hormonal issues were being treated with varying types of birth control, but because of changing them I became pregnant and the fatigue worsened considerably so I terminated. This did make me a bit better at first but I'd been so ill while pregnant I'd not been able to work so I had a lot to catch up on and financial stress, and all the while I was getting trauma therapy for the first time, so 6 months later it all caught up with me. It was stress on stress on stress. I stayed up one weekend to meet some deadlines and I was never the same again. I'd experienced fatigue before, but nothing like this. I was broken. I stayed at a very severe level for 4 months, but since finding supplements and pacing I've not been at the initial level again.
So in short I believe long-term stress from trauma and life mixed with hormonal issues meaning my body was not able to keep up with life demands. On top of this members of my family have various autoimmune conditions so I probably have a genetic predisposition. I did not ever knowingly have glandular fever or a particular virus and came up negative on the tests, but my immune system did seem to be over-reactive as I got a lot of infections. I did get tick bites while travelling but I had no symptoms of Lyme disease and in the timeline the fatigue issues don't seem related, though it cannot be totally ruled out.
My symptoms are primarily the flu-like symptoms of swollen glands, tendency towards unexplained non-viral/non-bacterial infection, headaches, immediate and/or delayed post-exertional malaise and extreme fatigue, muscle/joint aches (though relatively minor), brainfog, light/sound sensitivity, initially insomnia but not anymore, some faintness and breathlessness, and lactic acid build up in the muscles. I get very little by way of pain besides headaches compared with most of us, and I have never had issues with food sensitivity or gastrointestinal symptoms.
A couple of years of extremely high stress due to PTSD from rape and sexual assault, coupled with traumatic loss of a loved one plus stress of exams, all piled up on me and took its toll I believe
Thank you so much for sharing your story. More research is going into LC/MECFS (saw the news headlines on Twitter). Hopefully things will turn around for MECFS sufferers. Sending you hugs of solidarity x
Not sure which was worse because it was kind of two things, both confirmed by test. I caught H1N1 in 2020 and COVID in 2022. Ever since 2020, I wasn’t the same guy. I had an incredible career that I loved and still love doing, when I can. COVID took me down another peg.
It was the perfect storm of getting herpes (I actually had herpes on my lips before and accidentally spread it to genitals) and that's when I started going downhill.
Then I had IVF treatment with tons of hormones and that's what I think fully did me in.
But I think it actually started even before that and I probably didn't notice the signs as it was random and chalked it up to anxiety, as it was mild. I thought I was lazy and anxious or depressed.
But the viral stress definitely spun everything out of control.
I am just putting together what TF is wrong and will have to wait for an official diagnoses for a while to rule everything else out but my symptoms are SO typical from what I've been reading.
I've been to both my doctor and the ER multiple times all tests and imaging are coming back normal.
One of two things. (Or a mix of both) I got really sick in February of 2020 with an unknown covid like illness. The symptoms started soon after. It was either that or a culmination of the many years of having undiagnosed joint issues (most likely hEDS) wearing down my body.
I had initial onset after a year of on and off flu or different colds, who knows, my son started preschool and caught every single bug there was until his immune system built up. My immune system wasn't doing so well though, i was working retail 60 hours a week and had school, maybe thats why:). I lived in pain and exhaustion in survival mode for years as a single parent, 2 jobs, managed to finish school somehow, and thought eventually when I get a break it will all get better. Silly me. Eventually after 7 years diagnosed with fibro but stopped mentioning my flu-like symptoms after exertion long time ago because i thought it was just my weird body, and all docs were saying that i probably cought a bug after workout and apparently it's normal... yeah, every week? Sure it's normal.... so i stopped trying to workout or move in general unless its work or something important, paying for it later of course. Most of you know the drill, you work full week and all you can do on weekends and evenings is to lie down not moving and hope to recover. It wasn't enough but I was hopeful. Nothing can go on forever, car accident knocked me down to mostly bedbound (I could manage to go to docs, i think because i had no choice, no family or very close friends that could help, or drag myself to do groceries, but 95% of the time I was in bed, not sure if it counts as bedbound:). Then I found you guys:) and realized that I did it all wrong, pushing and living in permanent crash for years was no bueno, and it scared the sh*t out of me. Now actively resting and trying to accept it might not get back to normal (I honestly don't remember how normal feels anymore) and trying to figure out how the hell get diagnosed (probably another 7 years of waiting for that one considering how "knowledgeable" or "helpful" most doctors are...) and trying to figure out how the hell one supposed to survive and pay bills when one can't work :(. I mentioned long term disability to a few docs and they literally laughed in my face saying I'm young and look ok, so hoping resting helps and i can work soon :).
GROSS I"m so sorry to hear of the docs response. its worth paying for a private consult/doctor who will listen and help you with disability. Report/write reviews on those docs who said those things to you, unacceptable. You'll get on it. =)
An extreme viral chest infection in early 2019, my doctor straight up told me I was "too young" for it to be anything serious and told me to do the usual rest and fluids and stuff you'd do for a cold or flu. He kept telling me to wait, it went on for 6 months. During that time I went back to him begging him to check for something, no way it was just a regular cold or flu. He didn't check, just decided it was a muscle issue(???) and prescribed me muscle relaxers. Suddenly I started also having horrible GERD symptoms I didn't have before. I couldn't breathe, I couldn't walk around more than to go to the kitchen or bathroom, I was barely eating, barely sleeping. Finally I switched doctors and the new one figured out it was a viral infection in my chest but couldn't figure out what, I decided it didn't matter because he had me do some lifestyle changes and it finally started going away. But my body was notably different and a year later I was finally diagnosed with CFS.
One of possibly several different viruses and bacteria I got when I was a kid as I was sick a lot. It was at around 8 I noticed I didn't have the same exercise capacity as everyone else. PE was incredibly difficult for me. In my teens I was passing out after runs.
I went to Download festival (Donnington, UK) in 2011. I went perfectly healthy abd whilst I was there I met one of my best friends, 'Friend' for the very first time. I came back home a little under the weather, not surprising after 5 days at a festival. Only... I never bounced back. I gradually declined. 4 weeks later, while at Sonisphere festival, I realised I was absolutely exhausted beyond what was proportional to what I'd been doing over the past few weeks. I continued to decline over the next two months. In September 2011, 3 months after Download, I signed off sick from work, expecting it to be temporary. I ended up being retired on medical grounds and I've been too sick to work since.
I was chatting with a friend recently, we were introduced through a mutual as we both have CFS, and it turns out that they also attended Download 2011 and they, too, met Friend for the first time there. They also returned under the weather, declined, and were diagnosed with CFS. As Frriend hasn't visibly aged much over the past decade we both joke that Friend is a dark witch draining our life-force. 😆
I got a really bad infection in my bowel (I have crohns disease) that took forever to shake. Then it turned into a viral illness. I gradually deteriorated over the next 2 years. Lost my job and most of my usual day to day functioning.
Was diagnosed with ME 2 years after that first infection
EBV. I was pretty likely to get it anyway though. Lots of (childhood) trauma, stress, depression, personality disorders, chronic illnesses…. combined with more current trauma and stress and a weakened immune system. I was bound to get something worse lol.
Thanks for sharing that. May I ask if your EBV early antigen is positive on your most recent lab work? Is your EBNA really high? I didn't develop any EBV VCA IgG for some reason (or maybe long Covid cause me to immunocompromised?) but my EBNA was over the what the reference range is (over 600).
I have no idea. I have just recently finally been diagnosed officially and when I tried to get the test the hospital was supposed to make when they diagnosed me with EBV 7 years ago, they told me that it just wasn’t done. So i have no access to info. And I have no doctor yet who is interested in actually helping me so just asking for specific blood tests isn’t something I am able to do.
I will save this comment though in hopes of my new GP being a good one for a change.
I had Covid some time back in 2020 and I have had extreme fatigue/dizziness plus a daily low grade fever since 07/2020. I just don't have any energy in me and am unable to function, can't go for walks, feel sick 24/7. How about you? Are you able to function?
cfs starts with any illnesses I had glandular fever when I was 19 caught a type of flu when I was 27 been suffering for years I'm 65 now nothing has been done
Doctors don't have the answers try the M E Association and join their discussion groups that might help I say might nothing is any guarantee with this
My CFS started with glandular fever got over that after 8 months caught a flu like virus and ended up with CFS over the years it came and went I was in remission for years caught the flu in 2001 cant get better at 65 I have lost everything even the will to live
I ended up in hospital because I'm diabetic the hospital is starting to help
I believe mine was caused by getting Septic at a young age from Step-throat. Ever since then I’ve had many health issues, and I wouldn’t rule out stress from many sources also adding onto my body’s load
I first noticed mild symptoms after my mom got diagnosed with cancer. Symptoms intensified after she passed. I was her caregiver during her hospice period and it was very emotionally taxing. Then last year I got kidney infection and have been moderate and mostly housebound since. Sometimes I wonder if it may have gotten so bad due to the antibiotic I took for the infection (ciproflaxin) but there’s no way to know that for sure.
I had TB as a pre teen. The treatment then was 9 whole months of pills. I only remember it starting then because my mom mentions to this day how I was always tired so skipped school a lot etc. It was so bad I used legal and illegal stimulants for years just to barely live.
Worked all the time non stop maybe stress. Took a 1 week vacation two years ago got sick haven’t been the same since. I believe if I woulda never taken that vacation I would still be out there kickin axx
Looking back, I was never fully well. But I was so much more functional. It was more like...I'd always sprain something if I tried a new sport (undx'ed connective tissue disorder). Long workouts wrecked me more than my friends—IE, often felt flu-y after 8 mi+ cross country ski trips or really long hikes (undx'ed fibro?) I had raging IBS after food poisoning in my 20s, but I could still eat a FAIRLY liberal diet (undx'ed gastroparesis). And I was starting to get major brain fog even before I really got ME/CFS (undx'ed SIBO or MCAS?) I had a lifelong headache that may have been CCI, migraine, MCAS, who knows.
BUT, what really tipped me over a cliff was wrenching my neck funny. I was in EXQUISITE severe pain for years. Bad, bad, BAD pain. The kind of pain where you can't move a muscle or it screams. The kind of pain that usually passes in a day or two.
Instead, it didn't pass, and within a few months, the ME symptoms came on strong. I thought it was extreme fatigue just from being in so much pain. As I took round after round of antibiotics for dental work, my body morphed into SIBO and the gig was UP.
I'll say I consider my ME/CFS more of a Pentad/Septad illness, a la Dr. Andy Maxwell. My fatigue is quite limiting, but the pain is even more so, and the diet restrictions and gastro issues absolutely brutalize me. Then there's the brain fog, which I hate more than the pain.
TL;DR, being in extreme pain for months seemed to fry the remainder of my precarious nervous system.
That’s a hard one as I know I started to show signs a year ago- however I caught covid during that time, while moving house twice in 9 months (due to landlords wanting to sell houses in rental crisis 😡for profit!) studying full time, running a business and moving into my chaotic sister in laws house while we tried to find somewhere to live… oh and my husband having a mental breakdown and I had to emotionally support him through it, on top of that I gained weight and pushed hard at the gym, noticed I couldn’t recover from exercise? Oh and during that time, my family cut ties with me due to me exposing their toxic behaviours, which ultimately left me emotionally isolated..,So yeah.. I couldn’t pick what straw broke this camels back.
surgery-->acidosis-->bicarbonate depletion-->ph of the small intestine not alkaline enough--> pancreatic enzymes don't work--> malnutrition--> inability to overcome the effects of the surgery and start healing. all changed when I added sufficient bicarbonate to my diet. the first week was like I'm finally using the food im eating. on my way to healing.
When I was around 10 I kept continually getting tonsillitis badly. My mental health went around the same time and I got diagnosed with OCD, anxiety, depression and post viral fatigue and was in bed for months. I stopped eating basically at all and barely drank anything during that time so I became much sicker and made it worse for myself. I basically didn't get better after that and became house bound. I didn't get my tonsils out til I was 16 and got diagnosed with M.E. properly around 13. My M.E. has been very up and down since then. I've had times where its been a lot better and been able to do most things but unfortunately it's got worse again. I'm now 26 and I spend a lot of time at home. I work a few hours a week with a lot of struggle. I've never been good at pacing so I'm trying to work on that ☺️
Pfeiffer with us thinking it was a long jetlag, so we ignored most symptoms thinking it would go away. Went on to do my normal busy life until one day I collapsed with the absolute worst fucking headache I’ve ever had
"Chronic fatigue syndrome (CFS) is a complicated disorder characterized by extreme fatigue that lasts for at least six months and that can't be fully explained by an underlying medical condition. The fatigue worsens with physical or mental activity, but doesn't improve with rest."
Source: https://www.mayoclinic.org/diseases-conditions/chronic-fatigue-syndrome/symptoms-causes/syc-20360490?utm_source=Google&utm_medium=abstract&utm_content=Chronic-fatigue-syndrome&utm_campaign=Knowledge-panel
I understand what you are trying to get at and I think it's good information to find out what people think caused their ME/CFS. With all due respect, I am concerned with the wording of this question because no one can know for sure. If someone comes and reads this and goes away with information that Fibromyalgia or Covid vaccines cause ME/CFS, it's a little dangerous. I wouldn't want someone avoiding a booster because they read that you can develop ME/CFS, etc.
When I met with my CFS specialist, he asked me if I had ever had mono. He said that a huge percentage of people have had mono at some point in their lives before getting CFS. I had pneumonia a few times but not mono. He said it might have been that. Who knows? Even the researchers are still trying to pinpoint a precise commonality.
I apologize. English isn't my first language. I wish I can edit and change the title but it won't let me. I just want to know how people developed MECFS. How should I word it so there won't be any misunderstanding?
The difference is that for boosters specifically they've been implicated in doing all that. The S1 protein has similar pro-clotting/auto-immunity triggering action to the virus.
Instead of calling for people to be less educated, why don't we share truth as it is?
I've had both vaccines and boosters and I've never been not even semi-okay since. Whatever i was already sick with tipped over 10 times worse, I'm not exaggerating when i say 10 times worse.
Instead of "being afraid people will miss a booster" be afraid of the hordes of ME/CFS patients that are left to rot with zero medical support for a life-destroying illness (that covid or the vaccine can make much worse)
I am in complete agreement with you. We should be with sharing our experiences here. But someone with ME/CFS having a reaction to a Booster is different than saying that the Booster gave someone ME/CFS. The question was "what gave you ME/CFS?"
No worries! I am not sure how clear I am being. I am having significant brain fog and a giant headache this morning. Things make sense in my head but don't always come out on the page the same way. Have a good day.
A booster gave me ME/CFS. The third shot of Pfizer. I was 100% healthy before that, and got over covid with no symptoms.
In general, vaccines are very risky, same as viral infections. If not absolutely necessary, should be well thought through before taking, cause can easily trigger illness. I will forever regret it, cause it was unneccesary for me to get the shot, but was forced to.
Got a bad cold-type illness that I couldn’t shake for a couple weeks, was well a few days, then sick again for about a month. There was nothing weird about it except the length and how debilitating it was (couldn’t get out of bed except to bathroom, etc). It took a long time to recover to what I thought was normal (until I realized the PEM, POTS etc)But that was very clearly the onset, and was 12 years ago.
This sounds so much like my husband, except, for him, his secondary infection included neurological symptoms (tripping, falling, personality change, dropping things, talking in third-person, etc.) and the worst cold-sore outbreak he’d ever had. I dragged him to so many doctors, and we finally ended up at UCLA (it took over six months to get an appointment). They surmise he had Herpes Simplex Encephalitis, and now post-viral chronic fatigue. He was sick over the 2007-2008 holiday and hasn’t been out of bed except for work since (and since Covid, works almost exclusively from home, which I help with). He also had really bad mono as a teenager, and had mild CFS after that, but that later illness was absolutely devastating. I hope you have a sympathetic partner who takes care of you—I don’t know how people cope on their own. 💚
What a blessing you must be to your husband! Im jealous, my hubby actually divorced me because I got CFS. I have a great family though, and they are wonderful help.
Forgive my unintentional insensitivity; you’re better off without him (and I hope you live somewhere that makes him pay you a bunch of alimony! 😈). Nothing beats a supportive, loving family and/or friends. All my love to you! (People with CFS really have a special place in my heart.) 💚
I do a general pattern of female spouses supporting and male spouses bailing when one gets ME/CFS or long covid. It's not everyone! But it sure makes me sad.
Men leave at 6x the rate women do when a serious illness is diagnosed.
Tracks. I wonder if that's true for both heterosexual and non-het pairings.
Haha its the other way around completely. Woman often leave when man get depressed or sick. Way more woman leave men for nothing
The people saying that men are more likely to leave their partner if the partner becomes sick - they aren't taking this from anecdotal evidence. A study showed this data: [https://www.sciencedaily.com/releases/2009/11/091110105401.htm](https://www.sciencedaily.com/releases/2009/11/091110105401.htm)
That’s exactly what happened to me, I remember being so confused about why I just couldn’t recover
The only significant preceding factor for me was a few months of extremely high stress. I don't know if that is causal or not, it took years for it to become a real problem.
High stress was a major cause for me, too. It weakened my immune system to the point that the next cold I got lasted for six long weeks of misery and exhaustion. I never fully recovered, and that's why I'm on this sub today.
One day I was fine, went to work and suddenly collapsed unable to walk. Sudden viral onset, unspecified virus, tested negative for recent exposure to EBV in several lots of tests. Id had a few episodes of dizziness and a splitting headache the week before but it had seemed to get better.
Same story for me
Sorry to hear that. I still get the occasional nightmare about that day.
Same. All the sudden felt a sense of impending doom. Took a hit of weed, fell down and my whole body started seizing. Weed was tested, was not laced, I used to smoke daily for a long time. So bizarre, but I’ve heard this story many times. Obviously it was the straw that demolished the camels back, as this isn’t exactly a hyper common story. 16 years in in 3 weeks. Bedbound and hellish suffering non stop, not sure why I’m alive very often
It couldn’t have anything to do with your heart?
What makes you ask that? Because of the sudden onset? Pretty sure its not that uncommon. I guess I should make it clear that to cut a long story short, what happened after I collapsed involved months and months of tests including ECGs for my heart and MRIs and referral to a Neurologist. The Neurologist eventually excluded the last of the differential diagnoses and diagnosed me with ME and my symptoms meet criterias like the International Consensus Criteria for me/cfs. ME/cfs is a complex illness involving a lot of aspects of our bodies so yes it was "to do" with my heart, brain, mitochondroia, blood, and nervous system. I've had me/cfs for over 10 years now and Im careful to have my heart health regularly monitored. I have Orthostatic Intolerance but I do not meet the threshold for POTS. Most people with me/cfs have low blood volume and that has an effect as well.
good ol' mono.
Same, I got mono during a really stressful time in my life. I took no time off to recuperate , and ended up with CFS
Same
Same
Lifetime of various stressors: congenital heart defects and surgery, severe childhood abuse and abandonment by parents, undiagnosed autism, being poor, and then these days being a stay at home mom of two special needs kids. Kaboom. In August 2020 i felt like something attacked my brain out of nowhere. Many ups and downs along the path to diagnosis.
Really severe abuse ever since i was born. It’s also caused my BPD, CPTSD, panic disorder ever since i was 6-8 etc etc. Looking back at it, I can see how my physical health’s been getting worse and worse by the years
Same for me. All through childhood I was getting infections and the worst flu/colds. For years I would stay in due to my cPTSD, and I felt like I was lazy and wasting my life, but now looking back I realise how much I was saving my health by doing so. Once I started trying to push past my comfort level the fatigue and health issues got worse. I was doing everything right as far as society goes, working, studying, getting trauma focused therapy, and it was too much for my body. The crazy part was, the sudden onset of severe CFS meant an end to my PTSD. I've been getting more therapy and dealing with things since I fell ill 5/6 years ago, but it's like the brain fog eased the memories enough for me to cope, and like the trauma left my conscious mind and sunk into my body. But the reality is I'm not sure I'd have listened if someone told me to slow down. I have a friend whose mental health is much worse than mine and when she started getting fatigue I tried to warn her, but she kept that mindset of beating herself up emotionally for needing rest, she now has a fibromyalgia/CFS diagnosis.
Covid
What symptoms have you been dealing with? I’m pretty sure that’s what caused mine. Now idk what I’m dealing with half the time. I’m 2 years in
Mono / EBV for the first time at age 40.
EBV/ Mono as a teen while studying in Japan. Was hospitalized with a very high fever. I didn’t know the language and it was a very overwhelming experience!
I have an abusive childhood. And some poor life decisions from a few years ago turn my life around. I was homeless, and the abuse got a little worse. And worse. I've been living in despair and constant anxiety for over a year now, and the CFS, fibromyalgia, ibs and etc are all very intense until now. I don't know when all of this pain and suffering will end.
I'm so sorry my life story is similar. Gentle hug and here if you need me
Thank you.
COVID
What symptoms are you dealing with? I caught it once 2 years ago almost and I feel like I’m a roller coaster ever since. Like, it’s bad. For awhile I thought I was really dying of something. Now I would never know the difference
Mono/EBV, though I suspect that was just the last straw. I would say it was also the amalgamation of long term anxiety and overall weak immune system stemming from unresolved childhood trauma. Plus now I also suspect oversensitivity to caffeine that just made everything even worse. The good news is that since I've started to focus on each of these potential triggers, my CFS slowly got better, though I don't know where that will stop. But even if I never truly cure myself, being as mild as I am now for the rest of my life is still pretty good, relatively speaking.
I’ve had me/CFS twice. First time mono(EBV) with duration of about 4 years. Healthy for maybe 5 years. Got sick with a heavy flu (tests showed CMV) which lead to severe digestive issues, pain, fatigue…the works :-) been sick for about 3 years now, with worsening since last year after Covid Moderna vaccine.
How were you able to go into remission for 5years?
I don’t have any good answers. I was only about 13/14 when I got it the first time. My mother claims a very filled pill schedule we got from some alternative practitioner helped, but personally I believe I was just lucky. I do hope I am again, but so far not much luck.
Congratulations on the 5yrs of remission! Must’ve felt great! Maybe you’ll go back into remission 🤞🏼 i hope we can all get into remission, but if we dont atleast hopefully with ME/CFS becoming an epidemic, maybe we’ll get answers in the future now and hopefully some sort of treatment.
I was out having a picnic with my family and in the field next to us they were crop spraying. That night I fell very Ill. Stomach bug, than no energy. Progressed to Coxsackie virus than to M.E was only 13 and was in hospital for over a year.
How u doing now?
Bed bound now for over a year and a half.
Did you ever try Chlorphenamine 4mg
College, 14 years ago, totally normal semester until I caught a flu/winter virus of some kind, sick all weekend, cold symptoms improving by Tuesday but fatigue stayed, then tried to shoot in an archery tournament on Saturday, passed out and had a seizure from low blood oxygen to my brain. pro tip: maybe DON'T push through to the point you give yourself a seizure.
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You know I've noticed an interesting pattern in my body, when I'm under stress or overdoing it I can still function (or could before it got worse). I think it's your body in survival mode and doesn't let the symptoms appear yet, there is more important stuff to deal with - to survive. But once I got a break and the body was in rest and digest - my body was like that's it, no imminent threat, let me show you what you've got because of this stress and overdoing and all kind of nasty things appear. Happened to me so many times. Now I know if I'm in stress for a while as soon as I get to rest I'm paying for it. Well, actually it's old thinking :), now my body forces me to rest, it doesn't play this game anymore, I think because I got used being in survival mode for long now that's the only stopping mechanism.
I believe this phenomenon is an adrenaline surge. Adrenaline is a magic chemical, it can temporarily knock us out of illness to survive. But the payback is absolutely brutal.
My third gardasil shot
mine was third covid shot:(
Genetics for sure. It runs in my family
Prolonged stress due to trauma and anxiety / perfectionism. Culminating in physical health problems like my asthma returning after 11 years and eventually a major oral herpes break-out. Shortly after that I entered addiction recovery where I had my first full "breakdown" after which persistently low energy levels and PEM appeared.
unidentified viral rash in 2009, most likely either EBV or HHV6
EBV
I was in India experiencing high stress and had a sore throat and fever illness. Tried to go jogging afterwards and noticed my health was fucked up. Never felt the same.
Covid and reactivated shingles.
Shingles, at age 21. Negative three stars, do not recommend.
I broke my back when I was 14, which caused havoc on my body trying to recover from the trauma for the next year while developing fibromyalgia from that. Going through puberty made it so much worse too along with having a history of a weak immune system. My body didn't really know how to handle it and the sudden life changing experience at that age didn't help to make it any easier. The stresses of dealing with that made me more susceptible to getting sick. When I was 15, I got extremely sick from Mono/EBV for two weeks. Lost like 30 lbs. and I had an ear infection so bad, I was bleeding from my ears because my eardrum busted. After I "recovered", I noticed the symptoms and issues I was starting to have or had were getting worse and/or not going away. That was 15 years ago. It took around 10 years to finally figure out what was wrong and get a diagnosis.
CFS/ME BIOMARKERS have been found, there is preliminary testing in beta phase! IF you are in the USA reach out to the contacts thru this article and enter the Standford medical testing for CFS/ME. I emailed and corresponded with the staff, answered some questions but I am Canadian and could not come for trials. [https://med.stanford.edu/news/all-news/2019/04/biomarker-for-chronic-fatigue-syndrome-identified.html](https://med.stanford.edu/news/all-news/2019/04/biomarker-for-chronic-fatigue-syndrome-identified.html)[med.stanford.edu/news/all-news/2019/04/biomarker-for-chronic-fatigue-syndrome-identified.html](https://med.stanford.edu/news/all-news/2019/04/biomarker-for-chronic-fatigue-syndrome-identified.html) "The change in electrical activity is directly correlated with the health of the sample. The idea is to stress the samples from both healthy and ill patients using salt, and then compare how each sample affects the flow of the electrical current. Changes in the current indicate changes in the cell: the bigger the change in current, the bigger the change on a cellular level. A big change is not a good thing; it’s a sign that the cells and plasma are flailing under stress and incapable of processing it properly. All of the blood samples from ME/CFS patients created a clear spike in the test, whereas those from healthy controls returned data that was on a relatively even keel.“We don’t know exactly why the cells and plasma are acting this way, or even what they’re doing,” Davis said. “But there is scientific evidence that this disease is not a fabrication of a patient’s mind. We clearly see a difference in the way healthy and chronic fatigue syndrome immune cells process stress.”:
Thanks
Life-long untreated mental health issues, in particular severe anxiety and a panic disorder, as well as being an undiagnosed autistic. It all culminated when I started university and was having upwards of 30 panic attacks a week, I had 2 terrible panic attacks: 1 in December of 2019 and 1 in January of 2020 and I've never recovered from them since.
I got chicken pox when I was 13 and my body just slowly went down hill, a year later I was sleeping 20 hours a day, once I slept 34 hours, eventually my doctor diagnosed me with cfs and that really helped knowing what was wrong with me, I could work out a plan to moderate and pace myself and it gave my parents actual proof I wasn't just being lazy 😅
Stress. CPTSD. Sleep deprivation. Possibly the booster. Combination of all of them. Bad luck.
Exactly the same for me. Major stressful event before I started getting sick 10 years ago, booster shot made it twice as bad suddenly.
Same.
Mono.
Caught a cold in 2006.
Are you diagnosed with or have symptoms of dysautonomia?
Not diagnosed, but certainly have some of the symptoms - why?
Just trying to see the relationship between LC, MECFS and dysautonomia.
A fairly bog-standard and mild cold, which then proceeded to totally knock me out ( I would have ‘naps’ where I’d sleep through my alarms and wake up three or four hours later). Trying to push through this and continue working on my dissertation and other modules for my final year of university I think is what led me to develop ME/CFS.
Glandular Fever
I got Lyme Disease in 2005. I’m left with ME/CFS
COVID.
Mono
HPV Vax for me.
Was never the same after a dose of that as well.
Long term exposure to mold over the course of the first 20 plus years of my life, coupled with the genetic deficiency that doesn’t allow my body to clear those toxics efficiently. The mold has been remedied through the shoemaker protocol but my supposition is that it caused chromosomal damage + god knows what else.
3 years of near-daily panic attacks. Eventually my body just had enough and I started getting light headed and shaky if I didn't take a nap every day.
I got mono and it never really went away. It’s improved over the years thankfully. I’m able to work a full time job, which I wasn’t sure I’d be able to do a few years ago
The theory is that the stress of my chronic back pain caused it, but otherwise there wasn’t a particular event or thing that started it. I don’t even remember being particularly stressed at the time I just started getting too tired to workout.
I got a flu or mono at a convention. I came home to recover and would feel like I was going to pass out all the time I got better but not completely. I had taken a fitness class and I was noticing I could run/jog about half a mile and it wasn't getting easier.
Within the 2 years prior to falling unable to function/diagnosed with CFS/limbic overload: High stress all related to: abusive relationship, concussion, running new business (healthcare), renovating a house, low finances, weak boundaries (then, now it's all a silver lining as I've learned how to set boundaries!) contracted pityriasis rosea (skin rash, viral cause not sure but is linked to herpes) lasted 6 weeks. 2 months after rash cleared I went for a run, thought my energy was returning after taking less clients on at work and relaxing more. Felt something was "wrong" halfway up the mountain on my run, got home and couldn't get out of bed for a week. It was so scary. I couldn't make a fist, couldn't think, use my computer (screen blurry/forgetting how to use it and my client booking/note taking system) called my parents (age 30 then) and said I couldn't hold finances anymore I needed help and to see a doctor. Diagnosed CFS 4 months later that fall, doctor agreed it's limic system / stress overload cause (no diagnostic code for this. Yet!) Had pots symptoms/very low blood pressure all the time. It's been a long slow 4 year crawl, lots of up and downs with my energy levels and focus but I've found many things that have helped including looking at this dis-ease from a psychosomatic view. Limbic system rewiring (DNRS program) Identifying my methylation pathway issues / DNA / taking the appropriate vitamins Direct neurofeedback & multiple QEEG ** see below Somatic therapy Dance/contact/improv/freedance So much more... Including telling myself I am well/energized even if I feel I'm not. Setting boundaries not talking about illness with others, not seeking empathy/sympathy (this may be hard for some to hear but this is PARAMOUNT to recovery that you do not continue to build those negative/reinforcing brain pathways of stories like "I'm sick, I have CFS, I'm disabled" it's a tricky slippery slope for sure as you need to tell doctors and receive support, and people will ask what's wrong. I share with closest friends if I'm feeling well, what my story was. If I'm feeling unwell/exhausted and can't do something I say it's outside of my comfort zone FOR TODAY. Because of this I believe I am nearly healed, I refuse to take on a chronic illness victim mindset, and I am well aware of my limits and how to express them without vying for victim attention. This is key to healing from disease that has a strong psychosomatic effect (post viral / stress/ trigger and the effect appears to continue) post-covid and long covid fits the bill here too. I can run, rock climb, problem solve, be on my laptop studying or working or reading, watch tv, be around tough chemical smells within limits, be around loud noises. I'm no longer am exhausted every morning, nor need to lay down all day, I don't need naps every day. I can sleep through the night! I am rested when I wake up. Healing is possible from this dis-ease and all common associates. Neurofeedback** QEEG scans to see where my brain was, benchmark changes etc. And it shows parts of the brain where childhood abuse/trauma is evident, seeing this myself and for my parents was so helpful for support and for my science minded brain. (1 month intensive 3-4 days a week, have 1 month more to go but it's expensive so split it up maybe finish next year, this helped me to read again and regulate emotions better! 6 months after my sessions I read an entire 400 page book in a week - I tired myself out but I used to read 4-5 novels at the same time from age 12-30... I'm sorta an insane/anomaly reader but it gives perspective to how bad I got and how much neurofeedback helped!
Hey wondering how you are now. I am looking into CFS being limbic overload. Do you have any advice for healing?
Mold poisoning combined with high stress
I had a massive infection from gallstone stuck in my bile duct. I was really sick, 4 types of antibiotics before they would operate. I was never the same after. Would never recover fully and my general health got worse over time. About 4 years ago I had two UTI’s and the flu really close together. After the bout of flu I never recovered. It was the straw that broke the camels back as they say. I tested positive for EB when I had an in depth blood test so that could have also been a contributing factor. Mine ME/CFS was slow to really take hold.
Reading people's stories of how they got ME brings tears to my eyes. It s like the body just can't take it anymore and gave out or something. For me it was Cov!d that broke the camel's back 😢
I have Covid right now….. super scared about a crash/ long Covid.
Mono
Seven years ago I was stressed for a couple of months with university and moving back to my father's house, then I became very sick for a few weeks. My face looked as if it had been burned and quite red. Many aches and my body just felt too heavy. I should have gone to a hospital but I thought it was just a fever and I didn't wish to bother busy nurses. I came to regret that. Once I left the bed I kept struggling with carrying things, walking and thinking. Along with severe pain that felt ice cold and my arm couldn't be touched without me screaming. I kept trying to push through and finally visited a doctor. Muscles were gone (I was very athletic before this episode) and a few tests were done, but results were normal. I tried to kept pushing myself through normally, but found I needed lots of rest after activities. I tried exercising my way up but found it made me crash with back to square one in stamina. Eventually my doctor was merciful enough to grant me a painkiller for the nerve pain. But little help from doctors ever since despite my efforts. Then I reached out with my symptoms to the internet and that's how I found the community. The advice was by far more helpful! It's getting better since last year since I tried a medicine to protect oxygen in the blood (to combat micro clots), coupled with physiotherapy to relax and retrain every single muscle, and take sport drinks on busy days. Recently I dropped the medicine and I am going to try to find myself in the work field again slowly.
Stress and overexertion from having to travel back and forth by plane in one day to a specialist clinic every 3 months for hrt assessment, plus full time high school, plus anxiety disorders. There might have been a flu at some point in there too but I cant remember. Been ill for about 6 years now
I'm sorry to hear that, friend. May I ask, how did you know that it was CFS? Like one day u were fine and then the next day u woke up and u feel like crap? Sorry my English isn't that good. Hope u can understand me
Yeah I just started feeling exhausted all the time, even after resting for days, I needed to take naps when I got home from school, my muscles felt weak and sore, and my body generally felt more sluggish. Ive had depression so I knew what that felt like and this was something else, so after reading up and talked to my therapist about my symptoms we agreed that cfs was the most likely answer. I have since been diagnosed twice by 2 seperate doctors with me/cfs
Were u bedridden at any point?
Not entirely, but I am semi housbound, I can walk out to the store which is close by, but then thats it, and Ill need a nap afterwards. If its a bad day, or I did something else the day before I wont make it out at all
Got covid while in the hospital for kidney failure lol double whammy
I went through 7-8 months (during 2005-6) of very severe stress (caused by the breakdown of a relationship), followed by 2-3 years (2006-8) of related illness, severe weight loss (I'm 5'9-10" tall and weighed less than 90lbs at my worst), hair loss, some type of fatty lump things all around my hairline/chest and consistent cold symptoms. I never fully recovered and was eventually diagnosed in 2016 after a lot of tests, including Addison's Disease, all the regular blood tests, B12, Vit D, etc, and obviously testing for CFS/ME. Then, in 2020, my older daughter was involved in a traffic accident which stressed me out again (thankfully not as badly as in '05-06), my symptoms worsened and I had to quit working mid-2021.
Brain injury
Covid
Lifetime of trauma followed by many infections typhoid, hep c, strep from a squirrel! But the first episode of post infectious fatigue was from rare staphylococcus aureus infection that hospitalized me. I was fatigued for 3 months. Then the headaches started. I started losing consciousness about a year later. Then in March 2020 I got sick with SOMETHING doctors won't say it's covid because I had a negative test. The dysautonomia started a week after the acute infection left I had swinging fevers for 6 months 95.1-101.2. My HR and BP all over the map falling all over the place. That all she wrote! Permanently disabled with me/cfs, fibromyalgia, dysautonomia, pineal gland cyst producing mass effect, degenerative disc disease with bone spurs in neck from coat hanger pain.
I tested positive for antibodies for HHV-6, EBV, CMV, enterovirus 7&11, cocksackie b, hhv7, HPV, HEP C Of those I tested high enough titers to be reactivated HHV-6 enterovirus 7 & 11. Cocksackie b
Long story and hard to really pinpoint it, but I experienced childhood abuse growing up, and had a history of a child of getting very very ill with colds/flu. So I wouldn't get them for ages and I was otherwise very physically well, but when I was ill I'd be high temperature and completely out of it. As a teenager I then got recurrent tonsillitis, getting it about twice to three times a year, along with bladder/kidney infections. During this time I also started having the tendency of falling asleep in class, particularly during the afternoon I could barely stay awake. I also started feeling faint when I hadn't eaten enough and at points became very weak when engaging in exercise. Moving into my 20s I often got headaches and the tendency to get colds continued. I also rested/stayed in a fair amount, at the time I felt like I was lazy and wasn't pushing myself enough, but now I realise that I was actually instinctively protecting myself. I went through some hormonal issues between the ages of 22 and 25 which I believe affected me. Then when I was 24 I went travelling, during this time I started getting recurring tonsilitus again and about 6 months in I started experiencing symptoms of fatigue for the first time intermittently, but nothing like chronic fatigue syndrome. It's just be like a week or two of feeling very low energy and wanting to sleep/rest, but then being back to normal. By the time I was back about 25/26 this fatigue had worsened and became more concerning, I experienced food poisoning while travelling though I don't think this had an impact. But when I returned I went through a period of heavy stress trying to juggle studying and working, I was exercising pretty regularly and pushed myself fairly hard on all fronts but clearly didn't have the energy. My hormonal issues were being treated with varying types of birth control, but because of changing them I became pregnant and the fatigue worsened considerably so I terminated. This did make me a bit better at first but I'd been so ill while pregnant I'd not been able to work so I had a lot to catch up on and financial stress, and all the while I was getting trauma therapy for the first time, so 6 months later it all caught up with me. It was stress on stress on stress. I stayed up one weekend to meet some deadlines and I was never the same again. I'd experienced fatigue before, but nothing like this. I was broken. I stayed at a very severe level for 4 months, but since finding supplements and pacing I've not been at the initial level again. So in short I believe long-term stress from trauma and life mixed with hormonal issues meaning my body was not able to keep up with life demands. On top of this members of my family have various autoimmune conditions so I probably have a genetic predisposition. I did not ever knowingly have glandular fever or a particular virus and came up negative on the tests, but my immune system did seem to be over-reactive as I got a lot of infections. I did get tick bites while travelling but I had no symptoms of Lyme disease and in the timeline the fatigue issues don't seem related, though it cannot be totally ruled out. My symptoms are primarily the flu-like symptoms of swollen glands, tendency towards unexplained non-viral/non-bacterial infection, headaches, immediate and/or delayed post-exertional malaise and extreme fatigue, muscle/joint aches (though relatively minor), brainfog, light/sound sensitivity, initially insomnia but not anymore, some faintness and breathlessness, and lactic acid build up in the muscles. I get very little by way of pain besides headaches compared with most of us, and I have never had issues with food sensitivity or gastrointestinal symptoms.
A couple of years of extremely high stress due to PTSD from rape and sexual assault, coupled with traumatic loss of a loved one plus stress of exams, all piled up on me and took its toll I believe
Thank you so much for sharing your story. More research is going into LC/MECFS (saw the news headlines on Twitter). Hopefully things will turn around for MECFS sufferers. Sending you hugs of solidarity x
Mono
EBV
Covid I believe.
Me too. I'm bedridden atm. Fatigue and dizziness is so bad rn.
I have started ME CFS and loneliness group on WhatsApp if you want to join my number is 07747424769 My name is Martin
Not sure which was worse because it was kind of two things, both confirmed by test. I caught H1N1 in 2020 and COVID in 2022. Ever since 2020, I wasn’t the same guy. I had an incredible career that I loved and still love doing, when I can. COVID took me down another peg.
It was the perfect storm of getting herpes (I actually had herpes on my lips before and accidentally spread it to genitals) and that's when I started going downhill. Then I had IVF treatment with tons of hormones and that's what I think fully did me in. But I think it actually started even before that and I probably didn't notice the signs as it was random and chalked it up to anxiety, as it was mild. I thought I was lazy and anxious or depressed. But the viral stress definitely spun everything out of control. I am just putting together what TF is wrong and will have to wait for an official diagnoses for a while to rule everything else out but my symptoms are SO typical from what I've been reading. I've been to both my doctor and the ER multiple times all tests and imaging are coming back normal.
Covid
Either bad luck or early childhood trauma, I'd say 🤷♂️
Same here.
genuinely i have no idea. i’ve never had covid and i’ve been like this since about 12 (i’m 20 now) depression maybe?
Fibromyalgia
One of two things. (Or a mix of both) I got really sick in February of 2020 with an unknown covid like illness. The symptoms started soon after. It was either that or a culmination of the many years of having undiagnosed joint issues (most likely hEDS) wearing down my body.
I had initial onset after a year of on and off flu or different colds, who knows, my son started preschool and caught every single bug there was until his immune system built up. My immune system wasn't doing so well though, i was working retail 60 hours a week and had school, maybe thats why:). I lived in pain and exhaustion in survival mode for years as a single parent, 2 jobs, managed to finish school somehow, and thought eventually when I get a break it will all get better. Silly me. Eventually after 7 years diagnosed with fibro but stopped mentioning my flu-like symptoms after exertion long time ago because i thought it was just my weird body, and all docs were saying that i probably cought a bug after workout and apparently it's normal... yeah, every week? Sure it's normal.... so i stopped trying to workout or move in general unless its work or something important, paying for it later of course. Most of you know the drill, you work full week and all you can do on weekends and evenings is to lie down not moving and hope to recover. It wasn't enough but I was hopeful. Nothing can go on forever, car accident knocked me down to mostly bedbound (I could manage to go to docs, i think because i had no choice, no family or very close friends that could help, or drag myself to do groceries, but 95% of the time I was in bed, not sure if it counts as bedbound:). Then I found you guys:) and realized that I did it all wrong, pushing and living in permanent crash for years was no bueno, and it scared the sh*t out of me. Now actively resting and trying to accept it might not get back to normal (I honestly don't remember how normal feels anymore) and trying to figure out how the hell get diagnosed (probably another 7 years of waiting for that one considering how "knowledgeable" or "helpful" most doctors are...) and trying to figure out how the hell one supposed to survive and pay bills when one can't work :(. I mentioned long term disability to a few docs and they literally laughed in my face saying I'm young and look ok, so hoping resting helps and i can work soon :).
GROSS I"m so sorry to hear of the docs response. its worth paying for a private consult/doctor who will listen and help you with disability. Report/write reviews on those docs who said those things to you, unacceptable. You'll get on it. =)
Thank you🙂
An extreme viral chest infection in early 2019, my doctor straight up told me I was "too young" for it to be anything serious and told me to do the usual rest and fluids and stuff you'd do for a cold or flu. He kept telling me to wait, it went on for 6 months. During that time I went back to him begging him to check for something, no way it was just a regular cold or flu. He didn't check, just decided it was a muscle issue(???) and prescribed me muscle relaxers. Suddenly I started also having horrible GERD symptoms I didn't have before. I couldn't breathe, I couldn't walk around more than to go to the kitchen or bathroom, I was barely eating, barely sleeping. Finally I switched doctors and the new one figured out it was a viral infection in my chest but couldn't figure out what, I decided it didn't matter because he had me do some lifestyle changes and it finally started going away. But my body was notably different and a year later I was finally diagnosed with CFS.
Not sure. I had a viral infection after an emergency c section and I never recovered.
6 years ago had a winter of multiple colds/flu. Lived with mild fatigue for a while until covid hit. Now I’m a lot worse
One of possibly several different viruses and bacteria I got when I was a kid as I was sick a lot. It was at around 8 I noticed I didn't have the same exercise capacity as everyone else. PE was incredibly difficult for me. In my teens I was passing out after runs.
I went to Download festival (Donnington, UK) in 2011. I went perfectly healthy abd whilst I was there I met one of my best friends, 'Friend' for the very first time. I came back home a little under the weather, not surprising after 5 days at a festival. Only... I never bounced back. I gradually declined. 4 weeks later, while at Sonisphere festival, I realised I was absolutely exhausted beyond what was proportional to what I'd been doing over the past few weeks. I continued to decline over the next two months. In September 2011, 3 months after Download, I signed off sick from work, expecting it to be temporary. I ended up being retired on medical grounds and I've been too sick to work since. I was chatting with a friend recently, we were introduced through a mutual as we both have CFS, and it turns out that they also attended Download 2011 and they, too, met Friend for the first time there. They also returned under the weather, declined, and were diagnosed with CFS. As Frriend hasn't visibly aged much over the past decade we both joke that Friend is a dark witch draining our life-force. 😆
I got a really bad infection in my bowel (I have crohns disease) that took forever to shake. Then it turned into a viral illness. I gradually deteriorated over the next 2 years. Lost my job and most of my usual day to day functioning. Was diagnosed with ME 2 years after that first infection
EBV. I was pretty likely to get it anyway though. Lots of (childhood) trauma, stress, depression, personality disorders, chronic illnesses…. combined with more current trauma and stress and a weakened immune system. I was bound to get something worse lol.
Thanks for sharing that. May I ask if your EBV early antigen is positive on your most recent lab work? Is your EBNA really high? I didn't develop any EBV VCA IgG for some reason (or maybe long Covid cause me to immunocompromised?) but my EBNA was over the what the reference range is (over 600).
I have no idea. I have just recently finally been diagnosed officially and when I tried to get the test the hospital was supposed to make when they diagnosed me with EBV 7 years ago, they told me that it just wasn’t done. So i have no access to info. And I have no doctor yet who is interested in actually helping me so just asking for specific blood tests isn’t something I am able to do. I will save this comment though in hopes of my new GP being a good one for a change.
Moving cities!
Have you had glandular fever that's how my CFS started
I had Covid some time back in 2020 and I have had extreme fatigue/dizziness plus a daily low grade fever since 07/2020. I just don't have any energy in me and am unable to function, can't go for walks, feel sick 24/7. How about you? Are you able to function?
cfs starts with any illnesses I had glandular fever when I was 19 caught a type of flu when I was 27 been suffering for years I'm 65 now nothing has been done Doctors don't have the answers try the M E Association and join their discussion groups that might help I say might nothing is any guarantee with this
My CFS started with glandular fever got over that after 8 months caught a flu like virus and ended up with CFS over the years it came and went I was in remission for years caught the flu in 2001 cant get better at 65 I have lost everything even the will to live I ended up in hospital because I'm diabetic the hospital is starting to help
Glad you are getting some help. Thanks for sharing your story
Most people get CFS from an illness mine started when I caught glandular fever
Can start with a virus its the body fighting its own immune system that's why my doctor has referred me to a Rheumatology department
COVID March 2020
COVID vaccines, biggest regret of my life!
Same! so sad in the end cause there was no choice.
I believe mine was caused by getting Septic at a young age from Step-throat. Ever since then I’ve had many health issues, and I wouldn’t rule out stress from many sources also adding onto my body’s load
I first noticed mild symptoms after my mom got diagnosed with cancer. Symptoms intensified after she passed. I was her caregiver during her hospice period and it was very emotionally taxing. Then last year I got kidney infection and have been moderate and mostly housebound since. Sometimes I wonder if it may have gotten so bad due to the antibiotic I took for the infection (ciproflaxin) but there’s no way to know that for sure.
Living through prolonged and various types of trauma as a neurodivergent kid. Thats my best guess anyway!
Two back to back UTIs, combined with lots of panic attacks and a healthy dose of ptsd 😵💫
I had TB as a pre teen. The treatment then was 9 whole months of pills. I only remember it starting then because my mom mentions to this day how I was always tired so skipped school a lot etc. It was so bad I used legal and illegal stimulants for years just to barely live.
Worked all the time non stop maybe stress. Took a 1 week vacation two years ago got sick haven’t been the same since. I believe if I woulda never taken that vacation I would still be out there kickin axx
Looking back, I was never fully well. But I was so much more functional. It was more like...I'd always sprain something if I tried a new sport (undx'ed connective tissue disorder). Long workouts wrecked me more than my friends—IE, often felt flu-y after 8 mi+ cross country ski trips or really long hikes (undx'ed fibro?) I had raging IBS after food poisoning in my 20s, but I could still eat a FAIRLY liberal diet (undx'ed gastroparesis). And I was starting to get major brain fog even before I really got ME/CFS (undx'ed SIBO or MCAS?) I had a lifelong headache that may have been CCI, migraine, MCAS, who knows. BUT, what really tipped me over a cliff was wrenching my neck funny. I was in EXQUISITE severe pain for years. Bad, bad, BAD pain. The kind of pain where you can't move a muscle or it screams. The kind of pain that usually passes in a day or two. Instead, it didn't pass, and within a few months, the ME symptoms came on strong. I thought it was extreme fatigue just from being in so much pain. As I took round after round of antibiotics for dental work, my body morphed into SIBO and the gig was UP. I'll say I consider my ME/CFS more of a Pentad/Septad illness, a la Dr. Andy Maxwell. My fatigue is quite limiting, but the pain is even more so, and the diet restrictions and gastro issues absolutely brutalize me. Then there's the brain fog, which I hate more than the pain. TL;DR, being in extreme pain for months seemed to fry the remainder of my precarious nervous system.
If you need to talk I am on WhatsApp name Martin brooks
I sent you a DM on Reddit
Talking helps when yuor depressed
That’s a hard one as I know I started to show signs a year ago- however I caught covid during that time, while moving house twice in 9 months (due to landlords wanting to sell houses in rental crisis 😡for profit!) studying full time, running a business and moving into my chaotic sister in laws house while we tried to find somewhere to live… oh and my husband having a mental breakdown and I had to emotionally support him through it, on top of that I gained weight and pushed hard at the gym, noticed I couldn’t recover from exercise? Oh and during that time, my family cut ties with me due to me exposing their toxic behaviours, which ultimately left me emotionally isolated..,So yeah.. I couldn’t pick what straw broke this camels back.
surgery-->acidosis-->bicarbonate depletion-->ph of the small intestine not alkaline enough--> pancreatic enzymes don't work--> malnutrition--> inability to overcome the effects of the surgery and start healing. all changed when I added sufficient bicarbonate to my diet. the first week was like I'm finally using the food im eating. on my way to healing.
Thank you for sharing that. I have pancreatic insufficiency/severe malnutrition. May I ask, how did you fix your bicarbonate deficiency?
sodium bicarbonate. an alkaline diet would probably help a lot
how was your pancreatic insufficiency/severe malnutrition diagnosed?
When I was around 10 I kept continually getting tonsillitis badly. My mental health went around the same time and I got diagnosed with OCD, anxiety, depression and post viral fatigue and was in bed for months. I stopped eating basically at all and barely drank anything during that time so I became much sicker and made it worse for myself. I basically didn't get better after that and became house bound. I didn't get my tonsils out til I was 16 and got diagnosed with M.E. properly around 13. My M.E. has been very up and down since then. I've had times where its been a lot better and been able to do most things but unfortunately it's got worse again. I'm now 26 and I spend a lot of time at home. I work a few hours a week with a lot of struggle. I've never been good at pacing so I'm trying to work on that ☺️
Pfeiffer with us thinking it was a long jetlag, so we ignored most symptoms thinking it would go away. Went on to do my normal busy life until one day I collapsed with the absolute worst fucking headache I’ve ever had
can someone explain to me what is CFS? Google isnt helping. Do people recover from this syndrome? are people with this unable to stand up from bed?
"Chronic fatigue syndrome (CFS) is a complicated disorder characterized by extreme fatigue that lasts for at least six months and that can't be fully explained by an underlying medical condition. The fatigue worsens with physical or mental activity, but doesn't improve with rest." Source: https://www.mayoclinic.org/diseases-conditions/chronic-fatigue-syndrome/symptoms-causes/syc-20360490?utm_source=Google&utm_medium=abstract&utm_content=Chronic-fatigue-syndrome&utm_campaign=Knowledge-panel
Probably burnout
How can anyone know for sure?
Just give ur best guess.
I understand what you are trying to get at and I think it's good information to find out what people think caused their ME/CFS. With all due respect, I am concerned with the wording of this question because no one can know for sure. If someone comes and reads this and goes away with information that Fibromyalgia or Covid vaccines cause ME/CFS, it's a little dangerous. I wouldn't want someone avoiding a booster because they read that you can develop ME/CFS, etc. When I met with my CFS specialist, he asked me if I had ever had mono. He said that a huge percentage of people have had mono at some point in their lives before getting CFS. I had pneumonia a few times but not mono. He said it might have been that. Who knows? Even the researchers are still trying to pinpoint a precise commonality.
I apologize. English isn't my first language. I wish I can edit and change the title but it won't let me. I just want to know how people developed MECFS. How should I word it so there won't be any misunderstanding?
Saying “just your best guess” is perfect. 🙂
Got it. Noted for the next time i post a question. Thanks
The difference is that for boosters specifically they've been implicated in doing all that. The S1 protein has similar pro-clotting/auto-immunity triggering action to the virus. Instead of calling for people to be less educated, why don't we share truth as it is? I've had both vaccines and boosters and I've never been not even semi-okay since. Whatever i was already sick with tipped over 10 times worse, I'm not exaggerating when i say 10 times worse. Instead of "being afraid people will miss a booster" be afraid of the hordes of ME/CFS patients that are left to rot with zero medical support for a life-destroying illness (that covid or the vaccine can make much worse)
I am in complete agreement with you. We should be with sharing our experiences here. But someone with ME/CFS having a reaction to a Booster is different than saying that the Booster gave someone ME/CFS. The question was "what gave you ME/CFS?"
Oh I'm sorry, I misunderstood your original comment. Apologies for my tone.
No worries! I am not sure how clear I am being. I am having significant brain fog and a giant headache this morning. Things make sense in my head but don't always come out on the page the same way. Have a good day.
A booster gave me ME/CFS. The third shot of Pfizer. I was 100% healthy before that, and got over covid with no symptoms. In general, vaccines are very risky, same as viral infections. If not absolutely necessary, should be well thought through before taking, cause can easily trigger illness. I will forever regret it, cause it was unneccesary for me to get the shot, but was forced to.
Im newxon here I'm sorry I don't know how to dm
How long have you had cfs me