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Can my kids / Wife get CFS from ME?

Messages
13,774

Thanks SoS. I was probably going to end up repeating what I'd forgotten already posting in that thread:

Not worth worrying about imo.

Lots of things in life are uncertain, but there isn't good evidence for CFS being contagious in the way that something like HIV is. It is complicated though, as there does seem to be a genetic component which can effect families, and it's also likely that lots of different conditions get lumped together under the 'CFS' label - so some of them could be contagious.

I'd worry more about catching stuff from them, as illnesses can affect people with CFS worse than is normal.

Personally, I avoid exchanging saliva with too many people, and wouldn't give blood or anything like that, but I don't worry about it beyond basic hygiene things. Lots of people who are healthy could be harbouring some life changing pathogen - who knows? One can either descend to life destroying paranoia, or enjoy a hug every now and again.
 

Daffodil

Senior Member
Messages
5,875
no one knows. i have come across so many people who gave it to their spouse, but maybe even more couples where one is sick and the other is not even a little sick.

whatever it is, this thing isn't following any rules.
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
No one knows for sure. There are many threads about this. It probably depends on what pathogens you have and the methods by which those pathogens can be transmitted.

I think many/most of us realize that transmission is a possibility and take reasonable precautions.

Sushi
 

ukxmrv

Senior Member
Messages
4,413
Location
London
We just don't know RedlineBoy.

The families that I know with ME in young children are all those with a Mother who already had ME. That said, there are exceptions and adults in particular are unusual.

My Mother and another family member did not show signs of ME until I went to stay with them as an adult who had ME.

Other extended family members have ME traits or full blown ME. As an example I have an Uncle by marriage who has had ME for longer than I have but lives in another country and I would only have met him once as a child before I developed ME. His wife (my blood aunt) is fine and has no symptoms.

It could be that for us there is something infective, environmental or a genetic weakness to the disease or all of these factors.

Most ME couples I know have only 1 parter with ME and none of my previous partners have ever developed the disease. The couples I know with ME are usually acute viral onset from the same time..
 
Messages
759
Location
Israel
I believe it is not infectious, or at least not very easily. I am the only one who got ill with M.E in my family, street and school (I got this in school.)
If CFS/ME was easily infectious then I would not have people disbelieving my symptoms so much.
I have heard of so many sick people with healthy spouses too.

I believe it is an autoimmune desease due to the Ritux research and the ciguatera research.
MS had cluster outbreaks. Bell's Palsy is caused by Mononucleosis and they are both autoimmune. Autoimmune deseases are not infectious generally, although there is a genetic element sometimes...but not always.

I also think that it might be some damage left to the body by a virus which has long gone. Again, that sort of thing is not infectious.
 
Messages
80
How can you have autoimmune disease, it just don't happen on its own. I know its viral infection because host of my symptoms started after EBV / CMV mono that never went away. Six months into my infection I already started feeling fatigue and I already knew something was not right. From then on I have good days and bad days. In the morning I'll be fine then as day progress I'll start getting headaches, dizzy, mood swings, fatigue..I'll take my afternoon nap then I'm okay for another few hours before symptoms start. I can function as a normal being, I can work, just not cognitively fast enough.

My lack of confidence is gone, in social scene I feel more bewilder than before. I never felt silent or cold in my life. This is all in last ten years. My exposure was to ebv/cmv/paro/hhv 6 all at the same time. I was infected by one of this girl I knew who I kissed, just from simply kissing. You believe this crap. I never felt the same afterwards.

These virus tricked my immune system as well overloading it with multiple infection that caused everything to go haywire.

I think CFIDS is from multiple infection of pathogens at the same time. Not the type of pathogens, but multiple co-infection is the cause. I'm a living proof.

I know if I got this then my family is at risk as well..

Everyone on this board who claims to have CFS, check your CMV/EBV/Paro/HHV6 I bet you have at least 50% of these infection..?????????????? Do you ?????????

No one has CFS without VIRAL infection. Period.

I'm just so frustrated how I feel daily, every god dam day is different.
 
Messages
80
AND check your immunological panel. You will quickly notice your NK cells are low.

Your CBC will be normal, but not your immunological panel test...NK Cells are ridiculously low. This is the case in my.
 

Daffodil

Senior Member
Messages
5,875
RedLine...how does low NK cell function or numbers prove that it is infectious?


Dr. DeMeirleir thinks its malfunction in the plasmacytoid dendritic cells caused by HERV expression (autoimmunity). These cells can affect production of cytokines as well as NK function. Sounds pretty good to me
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
I was infected by one of this girl I knew who I kissed, just from simply kissing. You believe this crap. I never felt the same afterwards.

If you caught it by kissing it wouldnt at all be unlikely that you could transmit something esp if it was "reactiving". I believe my sister was infected when she accidently drank out of my glass (I saw her do so, she'd thought I was being paranoid at the time when i freaked out about it), she's now had "CFS" for over 2 years (and i think is very close to getting that official diagnoses she's been trying to avoid while going to dr to dr and having lots of tests done).

I also had a boyfriend who's health would of been a little low to start with (morbid obesity) I made sick too with ME virally symptoms just like I get (fortunately he was able to recover..strangely I infected him several times by kissing, we ended up having to have a relationship with no kissing (does that mean that whatever we have mutates seeing he got reinfected by me?).. the rest of my partners thou have been fine.

This year.. I possibly made a cat sick. I have heard stories of others that has happened to as well. I got a 4-5 year old cat which was completely healthy and normal when I got it but 2-3 mths later it developed like IBS to the point it was missing getting to its litter tray a couple of times a week (it was an on and off diarhear issue) so getting poo over the floor (the vet couldnt work out what was wrong with it). I ended up having to get rid of the cat due to the mess it was making due to its newly developed bowel issue. Ive now a month ago got another cat and **fingers crossed** the same thing wont happen but anyway, its concerning seeing the other cat got sick with a issue vet couldnt work out 8-12weeks after I got her. (did I infect cat with some bacteria?)

No one has CFS without VIRAL infection. Period.

As CFS is a very broad group of people who probably have all various different things, some do not have viral involement.
..................

Can u affect others? maybe.. it would all depend on what you have (ME? or an infectious subgroup of CFS?)

One ME specialist has said that the children of mothers who had ME/CFS had a 25% chance of ending up with the illness too. I believe there is a strong genetic link involved in things too eg more dangerous to a family member to be sharing a glass then with someone not blood related.
 
Messages
80
I was healthy individual who never had any symptoms of any sort. Then suddenly, after coming down with various viral infections my immunological panel was not in good stage of healthy, especially the NK cells. My CD48 or something along that line which are B-cells were really low along with high titer value of CMV/EBV.

Trust me when I say this, I never felt the same afterwards. Everyday is different for me.
 

John H Wolfe

Senior Member
Messages
220
Location
London
The families that I know with ME in young children are all those with a Mother who already had ME
Same, and my aunt on my mum’s side appears to have it (she's a bit cagey about discussing


I know its viral infection
Viral infections are, in my view, complicating elements that increase symptom severity and the intractability of the illness


In the morning I'll be fine then as day progress I'll start getting headaches, dizzy, mood swings, fatigue
Interesting, I tend to have the opposite experience. I wonder what your sleeping and daytime postures are like?


I can work, just not cognitively fast enough
Have you tried any hydration, nutrition, and supplementation tailoring?


My exposure was to ebv/cmv/paro/hhv 6 all at the same time
My goodness that’s unfortunate!


I was infected by one of this girl I knew who I kissed, just from simply kissing
Me too, EBV from a girlfriend in 2003 whom I didn’t realise had glandular fever at the time!


Not the type of pathogens, but multiple co-infection is the cause. I'm a living proof
Multiple interacting pathogens is a possibility e.g. EBV with e.Faecalis, influencing autoimmunity ~ HERV, but for me there are other processes at play (e.g. neuropathy/neuromuscular tension based chronic neurogenic sensitisation or exposure to environmental pollutants such as mold, chemicals, heavy metals)


No one has CFS without VIRAL infection. Period
I had signs of fatigue from 1998, definitely had peculiar health problems from 2000/2001, but my major viral onset event wasn’t until 2003. Another reason I believe there is some background process involved


I believe my sister was infected when she accidently drank out of my glass (I saw her do so, she'd thought I was being paranoid at the time when i freaked out about it), she's now had "CFS" for over 2 years
Oh no, that’s awful! On the other hand, if my theory for the disease is correct she probably had a (shared) innate capacity for it to begin with so she would likely have become unwell sooner or later, if not necessarily suffered with acute onset


I wonder whether there are any anatomic abnormalities e.g. misshapen spines, hypermobility, connective tissue disorders, or historic sources of environmental toxicity (including pre-natal, peri-natal) common to you both?

does that mean that whatever we have mutates seeing he got reinfected by me?
Not in my book, for me it simply means he has a healthier functioning system
 

justy

Donate Advocate Demonstrate
Messages
5,524
Location
U.K
I think it is mainly a genetic component. My mother and cousin both have M.E - but i didnt grow up with them as i was adopted. My eldest daughter has it but not so far my other 3 children. My husband has not caught it either - although he is not quite as robustly healthy as he used to be and i wonder if this is because we can passon co infections to our partners who are then under par a bit but dont get M,E. (just wondering about this after reading posts about various people visiting KDM and having family members tested for Lyme etc)

Surely if it was infectious all my children would have caught it when i was pregnant (apart from the 1st as i odnt think i had it then.)

It sure is complicated!
No idea how cluster outbreaks fit in here either.
 

Daffodil

Senior Member
Messages
5,875
there is not always blood transfer during pregnancy.

I got this from kissing someone, too. and that someone, I learned, was promiscuous and he was sick when I kissed him, too (long story).

I am really trying to convince myself that this is autoimmune, but deep down, I still feel like this is a retrovirus or something similar because even though it looked like EBV and the monospot test said EBV...I read you can have a positive monospot if you are getting acute HIV infection.

so I think the positive monospot was false positive, and this was something else entirely.

I know I contradict myself a lot....but deep down, this still feels like an infectious disease to me.

maybe the virus is just in tissue. maybe it is in brain tissue and they will never find it for decades.
 

Daffodil

Senior Member
Messages
5,875
when the acute infection was over for me, my first chronic symptom was brain fog. then horrible neck cramping and pain. so, i felt 100% like this was a brain infection.

my NYC doctor told me that even if there is a gut infection of some kind, and bacteria / toxins are going into the brain from the gut, one could still have neck pain.

however, if it was primarily a gut flora issue, wouldn't the first symptoms be gastrointestinal? i did have severe nausea, diarrhea etc...but only months AFTER the brain / neck issues began.

so what does this mean??? dr. Peterson is convinced it is a neurotropic virus and i have to say that my experience still points to this theory.