• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Is CFS contagious? How can it be transmitted?

halcyon

Senior Member
Messages
2,482
So there was an overall epidemic / increase of incidence in ME/CFS in the UK in the years around 1955?
Yes, my understanding is there were sporadic endemic cases noted as well as the outbreak in Dalston and northwest London which both occurred in 1955 a few months before Royal Free.

And you are saying that during the outbreak at the hospital, only the Royal Free staff, but none of the hospital patients, came down with ME/CFS?
Sorry I was wrong, 12 patients that were already admitted at the time of the outbreak got ME, versus 292 members of the staff that came down with it. Ramsay notes that the hospital was full at the time so it's pretty remarkable that only 12 patients became ill.
 
Last edited:

Hip

Senior Member
Messages
17,824
Sorry I was wrong, 12 patients that were already admitted at the time of the outbreak got ME, versus 292 members of the staff that came down with it. Ramsay notes that the hospital was full at the time so it's pretty remarkable that only 12 patients became ill.

That's quite interesting though, that so few patients were hit with ME/CFS; it perhaps adds weight to the idea that some factor at the hospital (in addition to the virus) was playing a causal role in triggering the ME/CFS. Long term staff would presumably be more exposed to this factor (such as Legionella in the hospital drinking water) than patients who were only resident in the hospital for days or weeks.
 

sorin

Senior Member
Messages
345
The start of my CFS coincides in my case with a strong flu that I got in February 2010. At that point there was a flu pandemic in Europe of H1N1 (swine flu). In my case I had seriously respiratory complications (almost suffocation) , fatigue, enlarged lymph nodes, fatigue, muscular pain. The GP told me that I do not need any medication, just rest and aspirin!
So I am tempted to say that this was the starting point, the swine flu. Not sure though why in my case was so devastating, I assume it was on a background of low immunity. Has anyone a similar experience, with H1N1 flu?
Since 2010 till 2012 I tried to recover but I often got colds, still remained with painful lymph nodes and developed a serious dermatitis on my scalp which some doctor could not differentiate it from psoriasis (!?!). In 2012 I did the mistake of doing intense physical exercises for a few months and after that my condition turned to burn-out, the extreme fatigue and muscular weakness, I could not work and a for a period even could not walk a few hundred meters. Any comments on this?
 

Elph68

Senior Member
Messages
598
Hello!

Based on your personal experience, what do you think is CFS contagious? And I am referring to CFS not to EBV (mononucleosis) which we know it is transmissible through saliva.
If you think is transmissible, how can it be transmitted? Through saliva, sexually, by air, water, food, etc?
In case you think is transmissible sexually what is the sexual life of the CFS patient? Can she/he still make sex, and thus put the partner on risk? Even using condoms, that is not 100% safe, and if just saliva is enough to transmit the disease, that is very bad.
My personal experience ..... I caught it sexually ....... BUT ..... It was not a BIG problem until it got up my backside .... Not going to public ally say how that happened .....

That is why I believe this is mainly a female problem ..... The bacteria are transferred a lot easier from the vagina to the anus .... The bacteria get trapped in the prostate and may or may not cause problems .... And then are transferred to the new partner, flourish in the vagina, transfer to the rectum ..... And away we go ....

The better question here is ..... How many of your ex boyfriends partners now have problems????

This is about asking the right questions.....
 

Elph68

Senior Member
Messages
598
Absolutely true if it were contagious via some casual contact mode. If transmission required exchange of bodily fluids, for example, it would not spread as fast or as widely which might fit the ME picture. That said, it does not appear (based on current data) that there are a lot of spousal pairs with ME, which suggests it is not highly sexually transmissable either. If there's a very long incubation period, or period of very low-level symptoms, spousal transmission may not be obvious, however.

What seems more likely at this point is that any pathogen(s) involved are readily controlled by a healthy immune system, so only people with immune impairment (for whatever reason) become seriously ill. This fits better with the parent-child pattern we see. Of course, there are multiple other theories that might fit the facts as well. Since it's not clear yet that ME is even a single illness, several different theories of transmission may all be true.
I keep running across references to this. Also there have been several presentations where doctors have found a very high incidence of transfusion patients. As there is potential concern of transmission of something it should have been heavily investigated. Instead it has been largely ignored, just like other leads in this area of research.

I think KDM was the first I heard this from, and I very briefly discussed this with him at the 1999 Sydney conference.

Researchers have now found that arterial plaque contains biofilm forming bacteria such as viridan strep and other species. It is therefore possible that donated blood will transfer these bacteria to a new host.

If these bacteria are the cause of CFS then, the new host is definitely at risk .....

Cheers.
 

Gingergrrl

Senior Member
Messages
16,171
That is why I believe this is mainly a female problem ..... The bacteria are transferred a lot easier from the vagina to the anus .... The bacteria get trapped in the prostate and may or may not cause problems .... And then are transferred to the new partner, flourish in the vagina, transfer to the rectum ..... And away we go ....

The better question here is ..... How many of your ex boyfriends partners now have problems????

I was trying to not respond but felt this was offensive and wondered if you have any evidence or facts to back up any of these statements? There are many men on PR who are sick who became ill not from their girlfriends/wives/STD theory but from vaccines, gulf war illness, mold/biotoxins, enteroviruses, EBV, Lyme & tick-borne diseases, etc.

If ME/CFS is an STD then why would it only transfer from women to men and not vice versa! I have been married for three years (and with my husband for almost five years) and he has not gotten sick from me in the slightest way. I actually became sick one month after we got married but it has nothing to do with him and there were a series of triggers that affected me plus IMO genetic predisposition.
 

Chrisb

Senior Member
Messages
1,051
It seems to me that the question of whether CFS is contagious goes to the very root of what these illnesses might be.

If the condition be caused by some unknown, ongoing infective process it would presumably be possible for ME/PVFS/CFS to be contagious. I am agnostic on this, but I thought that the favoured view was now that whatever was the original causative agent, that had caused damage to some system and it was that damage which perpetuated the symptoms, and which resulted in the ongoing illness.

One can easily see how the same pathogen might cause similar symptoms in different people and how a pathogen might spread from one to another. It is less easy, if not impossible, to see how the condition could be contagious if the second view of the illness is accepted.

I may be naïve on this. You will correct me if I am.
 

halcyon

Senior Member
Messages
2,482
I am agnostic on this, but I thought that the favoured view was now that whatever was the original causative agent, that had caused damage to some system and it was that damage which perpetuated the symptoms, and which resulted in the ongoing illness.
There's no consensus on this at this time. If there was Stanford and Columbia wouldn't be wasting time looking for pathogens still.

If we use chronic enteroviral infection as the hypothesis for the cause of ME, in this situation it's likely that once the infection has become chronic and is limited mostly to the tissues we probably aren't shedding any infectious virion. And even if we are shedding virion, they will be coated in our own antibodies which should limit their ability to infect others. Finally, even if we did manage to infect someone else, they won't instantly get ME because it's not just the virus that causes ME but an abnormal host response to the infection.
 

Chrisb

Senior Member
Messages
1,051
they won't instantly get ME because it's not just the virus that causes ME but an abnormal host response to the infection.

I think this is the point I am trying to make. The ME might be dependent on the abnormal host response. Although the pathogen might be contagious, the abnormal host response could not be.
 

sorin

Senior Member
Messages
345
Just want to point you an article
- for people who are strong on cellular biology and chemistry this is http://docs.voanews.eu/en-US/2015/10/23/cfea68d7-1c0b-470b-86cb-e2b0e696b6dd.pdf
- for the rest, this is the short story
http://www.dailymail.co.uk/health/a...t-kill-viruses-including-hepatitis-C-flu.html
Briefly it is about that some protein found in bananas was used to create a drug that can cure AIDS, Hepatitis C and flu! It sounds unbelievable, what is your opinion? Not sure when they will put it on the market for sale if this will be ever put on sale... Just imagine the losses of billions of $ that some companies will have.
Or if some "scientific community" won't say that their findings not enough "scientifically" or not "replicable" or ... whatever
 
Last edited:

unto

Senior Member
Messages
172
I now (after 30 years of ME) are sure of its infectivity, I saw dozensindividuals express my symptoms (including family members, relatives, friends, co-workers ..)as other times I said, I was lucky, in misfortune, to get sick of MEso mild, so people are just one listless or depressed ..... and expressions of my face: sadness, pain, watery eyes, dark circles, eyes expressionless, eyes struggling to stay open, are linked / explained with those conditions.I said this because people infected with me and my family / relativesin turn, have developed a slight ME equally if not more of my lightdisease .... But for a patient is easy to see if others have the same problems,for example with cold and drowsiness / fatigue ......I think that ME is transmitted with many organic liquids, however, the path should be that saliva because the virus (?) from the mouth spreads easily to: throat, nose, ears, and then climb to the meninges and the brain and down stomach, immediately causing sore throat, then headaches and digestive difficulties ..........so if an individual meets the germ first in the vagina or rectum may develop the disease in an unconventional way or differently or developbefore those symptoms that usually occur immediately.Greetings
 

unto

Senior Member
Messages
172
Hip said
That's quite interesting though, that so few patients were hit with ME/CFS; it perhaps adds weight to the idea that some factor at the hospital (in addition to the virus) was playing a causal role in triggering the ME/CFS. Long term staff would presumably be more exposed to this factor (such as Legionella in the hospital drinking water) than patients who were only resident in the hospital for days or weeks.


There could be another explanation,
the germ has spread mainly in the health community, physicians and nurses,
simply because these people had professional behaviors in the relationship with patients, that is scrupulously respected the sanitary standards, while between them had normal social behavior
night
 

unto

Senior Member
Messages
172
halcyon said
Finally, even if we did manage to infect someone else, they won't instantly get ME because it's not just the virus that causes ME but an abnormal host response to the infection.

my experience is that alone is enough to cause the virus to "all" the same reaction
ME, only that its gravity would depend on: the health history of the patient (which and how many infections he had and how he resolved), its genes, the environment, such as feeding, etc.
ciao
 

Forbin

Senior Member
Messages
966
A thought that occurs to me (I've probably seen this suggested elsewhere) is that ME might be triggered by a strong immune response in those people who have a pre-existing infection with another pathogen.

For example, if you get some kind of infection of the gut - by virus, bacteria or other pathogen - the symptoms (if any) may go away (though the pathogen remains). Sometime later, however, you may be predisposed to develop ME if you have a strong immune reaction to almost anything.

The clusters might be explained by people being exposed to the predisposing pathogen due to their environment. For example, the predisposing pathogen might be transmitted by food or food handling in an environment like a hospital, or a small community, or a military base. People might get some kind of stomach flu from this or they might not. At any rate, it's not noticed as any kind of epidemic. Then, perhaps months later (or longer), a flu bug runs through the community. ME may then be triggered in people with an intense reaction to this flu bug, but only in people with the pre-existing gut infection* (and, perhaps, with some other genetic predisposition). [*it need not be a gut infection. This is just an example that makes sense. ]

In other words, the transmission of the necessary pathogen is somewhat limited (and may not even be contagious). That infection may go unnoticed, but ME is triggered by a follow on infection occurring in a wide-spread contagious outbreak that only causes ME in "primed" individuals.
 

Elph68

Senior Member
Messages
598
I was trying to not respond but felt this was offensive and wondered if you have any evidence or facts to back up any of these statements? There are many men on PR who are sick who became ill not from their girlfriends/wives/STD theory but from vaccines, gulf war illness, mold/biotoxins, enteroviruses, EBV, Lyme & tick-borne diseases, etc.

If ME/CFS is an STD then why would it only transfer from women to men and not vice versa! I have been married for three years (and with my husband for almost five years) and he has not gotten sick from me in the slightest way. I actually became sick one month after we got married but it has nothing to do with him and there were a series of triggers that affected me plus IMO genetic predisposition.

Quite easy to answer all this, and I have in the Undetectable infection thread. It is transferred both ways ........

This is also about a sub-group and may not be relevant to the disease as a whole .....

It is about microbiome biodiversity and bacterial load and glucose/sucrose.

A man carries the bacteria in the prostate where eventually the prostate becomes prostatitis and/or cancer. but they may never get ME. There is no physical way the bacteria can get from the prostate into the colon, unless they are stuck up there somehow ......

Everybody struggles to believe this ..... but I gave this to myself by placing some of these fluids up my rectum ..... BIGGEST mistake I ever made ...... It took about a week and I was bed ridden ....

When the bacteria from the prostate enters the female genitals they lay basically dormant until ovulation. At this point the cervix pumps out copious amounts of sugar, the levels of normal vagina flora start to decrease, the levels of biofilm bacteria increase and start to take over. (This causes vaginitis in some women). At menstruation the sugar stops, the cleansing starts but the biofilms remain. These biofilms take over, but to a lab they appear normal because they are alpha hemolytic. These biofilms can easily be transferred to the colon .... wiping front to back will do it .... missionary position will do it ..... then you have IBS .... then ME/CFS develops. Simple science ....

And I will use the same argument I have used on other threads up to 50% of men and up to 80% of women don't show symptoms if you catch chlamydia ..... So why is it classed as an infection ..... and what makes the difference between people?

I would really like someone to prove me wrong ...... Not just call me an idiot .... OR @Hip say I just make stuff up ...
 

Rvanson

Senior Member
Messages
312
Location
USA
I would only donate blood to doctors or therapists who believe in psychogenic disorders :smug:

Great idea. :thumbsup:

I would love to see a doctor come down with CFS and some have, but dont know of any personally. I was kidding about wanting to give it to them myself, of course.
 

Rvanson

Senior Member
Messages
312
Location
USA
I've heard lots of stories over the years where whole families become ill. Perhaps it depends on the pathogen/s involved. Some may be more highly infectious than others.

We just simply don't know at this point.

I was quite normal until 5 hours of having Chicken Teriyaki, rice and a cup of coffee with my fiance and our friends
at a local restaurant which had been there for a very long time..

Was it a toxin, a virus or bacteria, in my meal? I dont know. Everyone was fine, but me, after that. Then my fiance
dumped me during the year of the acute CFS flare I was in, since she didn't understand why or how I was sick.
 

Elph68

Senior Member
Messages
598
If you are not making stuff up, then provide references for all the statements you made in your above post.
They are all in the undetectable infection thread .....

But just for you, I will search through the 100's of documents and put them up here.

I don't need to sleep anyway .....