I have had CFS for 6 years and my wife just developed it too

[Jjnz]

So far 15% of 27 responses,

 

[Learner1]

I agree with most of this. But there isn't any proof that viral re-activations cause ME/CFS, let alone cause ME/CFS to be contagious.

There are so many studies that show healthy controls with EBV, HHV-6, etc. re-activations and yet they have no symptoms.This has been shown with both high antibodies and PCR testing.

It seems like what is scientific fact, is that many healthy people have EBV and other viral re-activations for certain, but no symptoms. There have been dozens of studies showing this.

If there was proof, we'd all be well. What is true is that there are multiple subsets of patients with different triggers and drivers of this disease.

I have seen many patients' labs. I've seen a good number of them with untreated EBV and other herpes infections including many with untreated immunodeficiency. These people are quite ill, many for years, and a. nymber have been helped by treatment for the viruses and immunodeficiency. Not everyone of course.

It really doesn't matter that healthy people aren't bothered by these issues. Lucky them. But it undermines the unfortunate experiences of so many who are and who are wrongly dismissed by doctors and left untreated, losing hope.

The best thing is for patients to be treated as individuals, with access to testing to find the issues generating symptoms and treat them

And, ideally, family members should be tested as well, with the slightest development of symptoms. There is no proof these infections aren't contagious. Many are.

 

[Abrin]

IMO, if ME/CFS was caused by viruses that are contagious, than the number of people "catching" ME/CFS from those of us that have it would be much higher.

This is pretty much my opinion on this as well. I grew up in a household of four people (my parents, my brother and I) where two of us developed ME/CFS at two different times (my father and I) decades apart but still the other two people in the household never developed it. If ME/CFS really was contagious wouldn't the two other people in the household that I spent most of my lifetime with and also share genes with get it? Wouldn't we be hearing of a way larger group of caregivers getting it?

 

[Learner1]

It depends on environmental factors, stress,. etc. These viruses are not always active, and they wax and wane, striking when the body's defenses are down. I carried inactive EBV around for almost 40 years until chemotherapy for stage 3 cancer whacked my immune system and allowed the EBV to activate and trigger my ME/CFS.

 

[gbells]

Regarding the studies I think both the results that blood levels are low but that they are present and do reactivate are both valid. Stress certainly lowers immunity and accelerates it.

Regarding family member, remember we are talking about body fluids not respiratory droplets. I don't share body fluids with most of my family members and I suspect many others don't as well.

 

[gbells]

The question of why viruses under one set of circumstances cause disease but under another don't is a good one. Medicine doesn't have any cures for these viruses because they assume the viewpoint that because they exist in a lot of healthy people they can't cause disease. We don't want to go chasing false leads.

My own hypothesis is that while the body can handle a single apoptosis blocking virus, it gets overwhelmed when several of them are present.

I would love to set up a study where we induce ME by infecting mice with EBV and then add HHV6 after a few weeks. Instant ME.

 

[lenora]

Hi @Wayne....I tried to read the article, but I'm all out of free looks for this month, at least. I'm blocked apart from the photo of the young woman. Thanks for the story (synopsis?). I do feel sorry for people like her and like everyone else, I wish I could just wave a magic wand. I just hope it doesn't become swept under the medical carpet once again. Hope you're still fairly healthy. Yours, Lenora.

 

[lenora]

I posted this question to "stuff that works", be interesting to see what response it gets. http://url8256.stuffthatworks.healt...uHUVP-2BeDbWdqu8z8zqz-2B33US8K2eSxjMYJ3yac-3D

Well, Jjnz....I have to say the question about the eye color seems to have thrown almost everyone. I didn't go beyond that one. If skin tone is taken into question, one has to wonder if it's when a person is tanned say from the beach or skiing, or what their normal skin tone is. Surveys are very hard things to get answers to. Good luck and thanks for trying. Yours, Lenora.

 

[w john martin]

Viruses can be symptomatic in only a small percentage of those who are infected. For example, polio paralysis occurs in approximately 1 in 100 of those infected. Positive examples of intrafamily illnesses far outweigh the argument of excluding virus transmission because of the low frequency of symptomatic illness. The concept of stealth adaptation as a virus immune evasion/escape mechanism is now better understood, especially with regards to the long Covid-19 syndrome.

 

[lenora]

Hello Everyone.....The answer won't be found until research is able to give us what we need. I've pondered this "mystery" for way over 35 yrs. now, have worked with different organizations, have listened to multiple answers and cures (supposed), and yet we'll just have to wait until there is a proper scientific answer.

I agree with everyone, in some form, yet there are no real conclusions for either us now or those who may be affected in the near future. Like I've thought multiple times, I think there will be different answers and we'll have begin work with that. A big hand to all of the researchers who have chosen to make this their life's work.

The answer could be something as basic as some body systems aren't as strong as others...we're all affected by different viruses in different ways , and this can include surgeries, congenital issues and on it goes. Some people recover then have relapses. The answers are difficult. Let's hope progress will soon be made. Yours, Lenora.

 

[Jjnz]

Well, Jjnz....I have to say the question about the eye color seems to have thrown almost everyone. I didn't go beyond that one. If skin tone is taken into question, one has to wonder if it's when a person is tanned say from the beach or skiing, or what their normal skin tone is. Surveys are very hard things to get answers to. Good luck and thanks for trying. Yours, Lenora.

Eye color? That wasn't my question, it was do you live with another person with cfs, currently 10% of 75 votes. Still a tiny sample,

 

[Annavive]

Hello, I’m really sorry to hear you and your partner is both struggling with the same symptoms of ME/CFS.

I first came down with ME/CFS in 2015 (I was 14-15 at that time) and was diagnosed through the CCI but it was a very loose diagnosis since I was so young and only had been sick for around a year. I started developing symptoms after contracting something on a summer holiday, a few months passed and it started to look like a mild case of ME/CFS (which is serious in itself). I started going out with my best friend who became my bf at that time. Around 3 months into dating we started having sexual intercourse and just shortly after that he developed symptoms of ME/CFS that was the exact symptoms I had to the T: extreme fatigue, tachycardia (180+bpm), leg/muscle pain, on and off constipation, sneezing constantly, dysregulated temperature, exercise intolerance, constantly peeing and being dehydrated, severe brainfog, and many other typical CFS symptoms.

Both me and my mom was at that time also experiencing the same symptoms and all blood tests looked “normal”. We were so sure it was something cause me and my mom also developed these ME/CFS symptoms at the exact same time. After a whole year and some months we finally found out we had E. Coli EPEC which is known to cause immune dysregulation! It totally messes up with ur immune system and much more. When we found this out I had been broken up with my bf for months but we knew he also was struggling with our symptoms so we told him to also go get a stool test for this specific strand and yes you guessed it: he was positive. All of us got antibiotics treatment and we all lost all our CFS symptoms. I have contracted my ex again back in 2023 asking if he is still doing okay health wise and he never came down with CFS again! Unfortunately I came down with CFS again a few years ago after new infections and not finding out whatever I caught again. But at least I was in remission for years.

Another friend of mine with CFS also came down with the illness after being bitten by some animal (most likely a bat) anyway, he shared some drinks with a girl shortly after who went on to develop CFS.

Who knows if that was a coincidence or not. But what happened to me and my bf + mom was definitely not a coincidence. Some viruses and bacteria are harder to transfer and also takes regular close contact such as having sex to transmit.

Once an infection is chronic it’s usually harder for it to transfer since most virus likes to hide in deep tissue such as the vagus nerve, or other places. Dr. Chias lab and research on enteroviruses says that after 6+ months the infected person shouldn’t be contagious which could explain why so many partners of ME/CFS patients don’t have CFS themselves. It’s not as easy as “oh your partner has been having sex with u for 20 years and never gotten any symptoms, so it means whatever you have is not an ongoing infection” no.. it totally depends on the pathogen and how it operates: where it hides in your body and how easily it spreads. And ofc it also depends hugely on the partners immune system! A lot of people get for example covid without any symptoms. While others get really horribly sick. Sorry this post was so long

 

[Cipher]

After a whole year and some months we finally found out we had E. Coli EPEC which is known to cause immune dysregulation! It totally messes up with ur immune system and much more. When we found this out I had been broken up with my bf for months but we knew he also was struggling with our symptoms so we told him to also go get a stool test for this specific strand and yes you guessed it: he was positive. All of us got antibiotics treatment and we all lost all our CFS symptoms.

Thank you very much for sharing. I'm curious, what antibiotic did you use and for how long? Did you have any diarrhea?

 

[Annavive]

I had barely any diarrhea which is why it took so long for any doctor to even think of testing for this! I had only some days a month where I would have loose stool. It would be more chronic on and off constipation but not anything extreme. After getting the E. Coli EPEC confirmed no doctor in Norway was willing to treat it due to the belief “it will pass on it’s own”: months later and still very much sick we retested positive again and again. Eventually the GP treated it with ciprofloxacin for 2 weeks! I know Cipro is a no no in the chronic fatigue syndrome community, and the risk and damage it can cause people. But in me and my mom’s case it actually did the opposite, by curing us. It fully got rid of the E. Coli and potentially other chronic bacterial infections I might have gathered with it. I have later retested for this bacteria and been negative, even with my relapse that I got just a few years ago I still don’t have the same bacteria I had back then.

I believe in my humble opinion that multiple pathogens can manifest chronically and drive a dysfunctional immune system and mess up with ur central nervous system and bring ongoing inflammation.

In no way am I promoting antibiotics as any treatment option for CFS. This can be very dangerous and have made many patients permanently worse. I’m only sharing my story to explain how certain infections can become chronic and and drive all symptoms of ME/CFS for some. Sometimes it can be a virus other times it can be a bacteria, or both etc.

 

[lenora]

Hello Annavive......Thanks for your information. I'm rather burned out on doctors and tests at the moment, but if my Internist will check for this, I may go ahead and have the tests done.

I wonder if the E-Coli also extends to chronic sinus conditions? While I've had allergies for a number of years, this year has reached the point where I can't breathe b/c of them. I also can't sleep, which could be caused by the sinus condition. Indeed, I'm even afraid to approach my bed for sleep and while I've also had insomnia, this has reached the point of totally ridiculous.

Since I've been cleared for bi-polar illness twice, it's definitely the sinus problems. The other.....well, I can live with it, but this year has added a whole new dimension. (I'm 78 and been suffering for almost 45 years). It has changed course over the years, the pain is less for example (thanks to Gabapentin and its offspring), but there are so many other complications.

I never even expected to live this long....it has been a total shock to me. A good one as I have a fine family and know that I'm fortunate in that regard, but a surprise nevertheless. Because of my age, I'm a bit of a guinea pig so I'd be the most apt to try something like Cipro IF I can get it prescribed.

Congratulations to both you and your mother. I hope you have a newfound lease. Also, thanks for letting your boyfriend know. This is so important, humbling yes, but not letting others' lives be ruined is the best gift they ever (unknowingly) received. Thanks for the info. I wish you and your mother well. Yours, Lenora

 

[Mouse girl]

Sounds like you both have something else going on, some other unknown illness or perhaps Lyme?

You can't catch CFS. It has a genetic base, it isn't contagious. But there are so many undiagnosed illnesses and loads of non cfs illnesses get loped in to the cfs/me category. I've known people who think they have cfs and they ARE sick for sure but with something different as they don't meet the criteria and can do things no one with cfs can do. So......could be good news for you guys, maybe there is hope to get well.

But she didn't get it from you. Doesn't happen. People are born with the genes to develop the illness and any variety of pathogens can set it off, this is why people get sick after very different catalysts.

So, please don't feel guilty or anything. She could also have the genetics for it and caught it from other stuff, still not from you as you can't carry it. I don't know much about Lyme, so maybe that could be something, I don't know if that can transfer or not, I doubt it but could be. Loads of people get loped into the cfs/me thing so perhaps you guys have something else or perhaps she is developing something or something else. I hope you both can find some relief or help. Not fun being sick no matter what is going gone and I imagine very hard for you guys to both be sick. so sorry hon.

 

[Annavive]

I wonder if the E-Coli also extends to chronic sinus conditions?

Yes, for us it all started with chronic sinusitis. Most E. Coli bacteria causes GI symptoms but a few causes mostly airway symptoms. The strand we had was of the bad type and although it should in general cause GI symptoms, it didn’t cause that for both me and my mom, my moms fling at that time, alongside my own boyfriend at that time. All of us had airway symptoms. There are a few studies out there that goes into further detail on this. Usually studies will say that it can possibly happen in immunocompromised patients but none of us are immunocompromised.

I'm a bit of a guinea pig so I'd be the most apt to try something like Cipro IF I can get it prescribed.

Cipro is incredibly dangerous from my knowledge. Please read up on this type of antibiotic. It has caused CFS for some patients. I didn’t know back then how dangerous it could be, but luckily it didn’t cause any long term damage for me or my mom.

I urge you to not use this specific antibiotic as a trial or error one (especially not as ur first trial and error one!!). Instead I would advise, if you insist on trying antibiotics without any knowledge on a possible underlying bacterial infection, that you to try doxycycline. It has less side effects and I haven’t heard anyone get something like CFS due to it. Complications from Doxycycline can be things such as C. Diff or possibly IBS. Please also do ur own research before trying this antibiotic. The only reason I was on Cipro is due to it specifically working for E. Coli EPEC. Doxy works on a lot of other bacteria and is a lot safer at least

Keep in mind if you suspect you may have a viral infection or fungi, and not bacterial then you might give yourself a worse outcome. Consider getting a CRP blood test done, alongside a white blood cell test before trying out antibiotics.

I’m incredibly sorry to hear how long you have suffered and you have my full understanding and compassion. I hope you find some relief one day. Sending love and well wishes. And thank you for your kind words. I unfortunately developed CFS once again in 2022 ish after new infections I still haven’t figured out what is (or what was). But I’m not bedbound or anything close to it luckily

 

[Annavive]

You can't catch CFS. It has a genetic base, it isn't contagious. But there are so many undiagnosed illnesses and loads of non cfs illnesses get loped in to the cfs/me category. I've known people who think they have cfs and they ARE sick for sure but with something different as they don't meet the criteria and can do things no one with cfs can do. So......could be good news for you guys, maybe there is hope to get well.

I agree that ME/CFS in itself is not contagious. However we haven’t established a genetic link for sure, so this is all theory.

Although I agree that ME/CFS in itself isn’t contagious, the possible pathogen driving the symptoms can be transmitted from one person to another and cause systemic inflammation, systemic symptoms and immune dysfunction. This all depends on the pathogen, naturally.

Certainly was it ME/CFS that I had:
It started out as mild flu like symptoms, then came the intolerance to exercise shortly after. Later came the PEM which would take sometimes up to 3 days to kick in and leave me bedbound for at least a week.
I kept pushing with school and became worse and worse and eventually bedbound. I couldn’t speak for over 2 weeks or handle any stimuli. Not a single word. I was in a severe ongoing crash with constant symptoms. I had muscle pain, unimaginable brainfog, couldn’t handle light or a sound at all. I lost a lot of weight and was down to 45kg just from the inability to chew food. At first I would have hypersomnia, then it turned into insomnia. My EBV was reactivated alongside HVS-1 which is very typical for an ME/CFS patient. My mom had her CMV re activated alongside EBV. We both had developed POTS, and going to the toilet felt worse than a marathon. I fullfilled all the criteria on the CCC, which is the way most docotrs today diagnose ME/CFS. In fact, you cannot participate in most ME/CFS studies without being diagnosed through this criteria due to how accurate we must be when conducting well ME/CFS research.

How can E. Coli EPEC drive all the ME/CFS symptoms? Unfortunately the bacteria causing Lyme alongside other pathogens (EBV, CMV, enteroviruses etc.) are not the only thing that can hijack the immune system and host cells and drive these symptoms. Here is a very well put together paper by Dr. Amy Proal describing how different pathogens can drive ME/CFS symptoms:

https://pmc.ncbi.nlm.nih.gov/articles/PMC6288442/

ME/CFS is described to cause an immune dysfunction, it’s one of the few things we can say for sure about this illness.
Further: E. Coli EPEC also immune dysfunction in a numerous of ways, here is to name a few

Disruption of Epithelial Barriers​

• EPEC adheres to intestinal epithelial cells using a structure called the locus of enterocyte effacement (LEE), which encodes a type III secretion system (T3SS).
• The T3SS injects effector proteins like Tir (translocated intimin receptor) and Esp proteins into host cells, leading to:
  • Destruction of microvilli (attaching and effacing lesions).
  • Increased epithelial permeability.
  • Impaired barrier function that exposes the underlying immune cells to pathogens and antigens.

Why is this an issue? This can further lead to a systemic inflammation in the body along side a range of other symptoms such as fatigue, leaving you vulnerable to secondary infections etc.

This is something a lot of patients with ME/CFS struggle with

2. Modulation of Innate Immune Responses​

• Inflammatory Signaling Suppression:
  • EPEC dampens the host’s immune response by interfering with pathways such as NF-κB and MAPK.
  • It secretes effectors like NleE and NleC that inhibit cytokine production (e.g., IL-8), reducing neutrophil recruitment.
• Immune Evasion:
  • EPEC inhibits reactive oxygen species (ROS) production and phagocytosis, enabling it to persist in the host.
• Activation of Inflammasomes:
  • While EPEC can activate inflammasomes, the response may be suboptimal, leading to inadequate pathogen clearance

This can again lead to a lot of inflammation, flu symptoms, fatigue, alongside malabsorption in the gut; which leads to deficiencies causing even more symptoms and immune dysfunction

3. Subversion of Adaptive Immunity​

• T Cell Impairment:
  • EPEC can interfere with antigen presentation by altering the function of dendritic cells and macrophages.
  • Suppression of cytokines like IL-12 reduces T-helper 1 (Th1) cell responses.
• Chronic Immune Activation:
  • Prolonged exposure to EPEC antigens may lead to immune exhaustion or tolerance, impairing adaptive immunity.

We know that also chronic immune activation is a huge issue in ME/CFS, I don’t think I need to say more

4. Disruption of Microbiota and Immune Homeostasis​

• EPEC alters gut microbiota, which affects the immune system’s ability to regulate itself.
• Dysbiosis may lead to increased susceptibility to other pathogens and systemic immune dysfunction.

We also see signs of a disturpted gut microbiome in ME/CFS patients. We know that a messed up microbiome is not the driver of ME/CFS but rather a cause of having the disease. Again this fits everything to a T.

5. Impact on Gut-Associated Lymphoid Tissue (GALT)​

• By damaging the intestinal lining and altering immune signaling, EPEC can compromise GALT function, impairing both mucosal and systemic immune responses.

This can cause systemic inflammation, and drive a bunch of systemic symptoms, it can also further lead to food allergies and intolerances to new things you didn’t have any issues with prior to the infection. This as well happened to me.

Clinical Relevance​

The immune dysfunction caused by EPEC can result in:

• Increased susceptibility to co-infections.
• Delayed recovery from infection.
• Chronic intestinal inflammation in severe or repeated infections, which may predispose individuals to other inflammatory disorders.

These last few points are also very common in ME patients.

There is more to E. Coli EPEC than what I have described here, but the post would simply be too long. All I can say is it can drive all the ME/CFS both me, my partner and mom experienced

When we further explore the nature of some of these pathogens we can understand how they can drive a lot of symptoms and lead to chronic systemic inflammation alongside other issues in our body. It’s very interesting to dive into and further research is needed to understand the mechanisms of different pathogens, so we can more effectively test and treat them. As for now, science is lacking greatly in this department, especially when it comes to viruses and how they can affect our body.