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

Learner1

Senior Member
Messages
5,605
Likes
10,023
Location
Pacific Northwest
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.
 
Last edited:

Abrin

Senior Member
Messages
296
Likes
923
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

Senior Member
Messages
5,605
Likes
10,023
Location
Pacific Northwest
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

Improved ME from 2 to 6
Messages
1,433
Likes
1,755
Location
Eastern NC USA
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

Improved ME from 2 to 6
Messages
1,433
Likes
1,755
Location
Eastern NC USA
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.
 
Last edited by a moderator:

lenora

Senior Member
Messages
2,638
Likes
3,806
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

Senior Member
Messages
2,638
Likes
3,806
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.
 
Messages
25
Likes
68
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

Senior Member
Messages
2,638
Likes
3,806
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.
 
Messages
54
Likes
85
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,