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Is CFS contagious? How can it be transmitted?

SOC

Senior Member
Messages
7,849
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 can't say I've heard lots of stories where whole families become ill. I think I've heard of a couple. The only one I know personally where more than a couple family members are now ill (although most of the ill family members are 85% functional, so wouldn't technically qualify as PWME) has persistent Lyme disease with ME-like symptoms including PEM in at least one case.

So, yes, I'd agree it may depend on the pathogen involved. In the case of Lyme-triggered ME/CFS, it may simply be that all family members were bitten by infected ticks at the same outdoor family event, for example, rather than a person-to-person transmission. Other pathogens may be easily contagious person-to-person, but controlled by healthy immune systems.

Indeed, we really don't know much about transmissibility at this point. All we have are very broad patterns (mostly isolated cases, some parent-child pairs, a few outbreaks) which may fall apart as ME diagnosis improves. At the moment it appears we do not have to worry about transmitting ME to casual contacts since that type of transmission doesn't fit the known distribution of patients at all. Hopefully, some researcher will get this sorted out in the next 10 years or so.
 
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Hip

Senior Member
Messages
17,824
The virus that triggered my ME/CFS (likely coxsackievirus B) transmitted to more than 30 friends and family by normal social contact. In three previously health people, my virus caused 3 sudden heart attacks, one which was followed chronic myocarditis. Chronic myocarditis is known to be caused by coxsackievirus B, and some research suggests that many sudden heart attacks may be cause by coxsackievirus B.

Three people who caught my virus rapidly developed sudden-onset cases of severe generalized anxiety disorder.

And nearly all the 30+ people who caught my virus showed some sort of permanent mental state changes, although in many cases you might classify them as subclinical mental symptoms.

These mental symptoms included becoming more irritable or grumpy, negative in outlook, losing motivation, developing mild anhedonia, complaining more of fatigue, and becoming emotionally dulled. Nothing that you could easily quantify, but certainly noticeable if you know the people well. Details of my virus given on my website.

When I spoke to the enterovirus expert at the Health Protection Agency (HPA), the UK's equivalent of the CDC, she said that with enteroviruses being very common viruses, which can cause a vast range of different clinical presentations (in the majority subclinical), the key was understanding the host genetic factors that determine the outcome of an enterovirus infection.

I think this is roughly right; although in addition to genetic factors, I suspect environmental factors or medications may also play a role in the outcome of an enterovirus infection in your body. Dr Chia for example discovered that giving corticosteroids to people with acute enterovirus infections is a recipe for creating ME/CFS. So this is an example of how a drug appears to change the effect enterovirus has on your body.

Though the problem with trying to link enterovirus to specific symptoms is that, unlike a virus such as HIV, the clinical manifestations of enterovirus are many and varied, so it is not so easy to observe an epidemiological pattern, and establish a link between virus and disease.

But I think enteroviruses in the general population are likely responsible for a large amount of subclinical as well as clinical health problems, both mental and physical. I have clearly seen this in my own group of 30+ friends and family, and I suspect it is also the case in the wider population.

The sooner we develop a coxsackievirus B and echovirus vaccine, the better it will be for humanity.
 
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dannybex

Senior Member
Messages
3,561
Location
Seattle
I can't say I've heard lots of stories where whole families become ill. I think I've heard of a couple. The only one I know personally where more than a couple family members are now ill (although most of the ill family members are 85% functional, so wouldn't technically qualify as PWME) has persistent Lyme disease with ME-like symptoms including PEM in at least one case.

So, yes, I'd agree it may depend on the pathogen involved. In the case of Lyme-triggered ME/CFS, it may simply be that all family members were bitten by infected ticks at the same outdoor family event, for example, rather than a person-to-person transmission. Other pathogens may be easily contagious person-to-person, but controlled by healthy immune systems.

Or, they all lived in a mold-infested house, or worked around or lived near high-pesticide or other chemical exposures, or both, etc.. Many different possibilities.

Mickey Mantle took his life for granted, living (and boozing) it up off the playfield because he was certain he wouldn't live past 40. After all, his father and almost all the other men in his family died young from Hodgkins Disease.

He didn't know until 40 years later when he was dying of alcohol-related liver disease (and cancer) that it's likely the reason they had died so young was due to the fact they all worked as miners, breathing in lead and zinc dust for their entire adult lives.
 

dannybex

Senior Member
Messages
3,561
Location
Seattle
I think this is roughly right; although in addition to genetic factors, I suspect environmental factors or medications may also play a role in the outcome of an enterovirus infection in your body. Dr Chia for example discovered that giving corticosteroids to people with acute enterovirus infections is a recipe for creating ME/CFS. So this is an example of how a drug appears to change the effect enterovirus has on your body.

Makes one wonder if elevated cortisol, from a variety of factors, might create the same result…
 

SOC

Senior Member
Messages
7,849
Or, they all lived in a mold-infested house, or worked around or lived near high-pesticide or other chemical exposures, or both, etc.. Many different possibilities.

Mickey Mantle took his life for granted, living (and boozing) it up off the playfield because he was certain he wouldn't live past 40. After all, his father and almost all the other men in his family died young from Hodgkins Disease.

He didn't know until 40 years later when he was dying of alcohol-related liver disease (and cancer) that it's likely the reason they had died so young was due to the fact they all worked as miners, breathing in lead and zinc dust for their entire adult lives.
Um.... if they died of Hodgkin's Disease, then they died of Hodgkin's, not lead- or zinc-related lung disease. Hodgkin's is a cancer of the immune system (not lungs) known to be associated with EBV and trichlorethylene exposure, not inhaled heavy metals. It also runs in families, which suggests a genetic component, most likely in the way the immune system handles (or doesn't) viruses.

Hodgkins runs in my family, too, and we tend to die young(ish), although modern treatments have improved the situation. None of us were miners, or worked in other fields with dangerous exposures. The Mantle story is believed to be a myth put about by those supporting better protection of miners. There is no evidence behind it and it doesn't fit what is known about Hodgkins.

Mantle wasn't too bright if he knowingly harmed his body with toxic exposures because some members of his family died of Hodgkins at a relatively early age. His grandfather died of Hodgkins at 60yo, which wasn't particularly young since the life expectancy of men was 58yo in 1930. In addition, even in families in which Hodgkin's runs, there are usually only one or two cases in a generation, so the odds of avoiding Hodgkins were in his favor.
 
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ukxmrv

Senior Member
Messages
4,413
Location
London
http://voicesfromtheshadowsfilm.co....up-of-patients-with-mecfs-rosemary-underhill/

"she says, “it is often stated that ME/CFS is not contagious. There is however much evidence that this disease can be communicable”. She requests the CFSAC to “recommend that the CDCs Epidemic Intelligence Service (EIS) investigate this subgroup of patients with ME/CFS…. that the EIS and the ME/CFS research community seek out cluster outbreaks of every illness resembling ME/CFS and investigate both the patients and their close contacts in the hope of finding the causal pathogen.”

and

http://www.tandfonline.com/doi/abs/10.1300/J092v13n01_02

"The prevalence of CFS (Chronic Fatigue Syndrome) and chronic fatigue were investigated in family members of CFS patients using a questionnaire-based study. Significant differences were seen between the prevalence of CFS in all groups of family members relative to the published community prevalence of 0.422% (spouses/partners: 3.2%, p < 0.001; offspring: 5.1%, p < .001; parents and siblings: 1.1%, p < 0.02; second and third degree blood relatives 0.8%, p < 0.02). The prevalence of CFS was higher in genetically unrelated household contacts and in nonresident genetic relatives than in the community, indicating that both household contact and genetic relationship are risk factors for CFS."
 

Hip

Senior Member
Messages
17,824
Or, they all lived in a mold-infested house, or worked around or lived near high-pesticide or other chemical exposures, or both, etc.. Many different possibilities.

I strongly suspect that in the major ME/CFS outbreaks — the Royal Free Hospital outbreak of 1955 and the Lake Tahoe outbreak of 1984 to 1987 — in addition to a triggering virus, there must also have been local environmental factors in the equation, otherwise how would you explain why the outbreak never spread further than its original confines? The Royal Free Hospital is located in a busy and densely populated area near the center of London, yet the ME/CFS outbreak did not spread to the rest of London.

In the case of the Royal Free outbreak, Jonathan Edwards said that there was Legionnaire's disease bacteria in the water system, so perhaps the combined effect of Legionella bacteria and say an enterovirus infection resulted in this outbreak.

In the case of Lake Tahoe, there is a discussion here as to whether the Lake Tahoe water (which supplies the drinking water for the area) might have been contaminated (with toxins or bacteria), such that the combination of the water and a virus may have caused this outbreak.



Makes one wonder if elevated cortisol, from a variety of factors, might create the same result…

I was also wondering that. Given that cortisol is secreted under conditions of stress (both biological and psychological stress, I presume), this might explain the observation that ME/CFS can sometimes arise after a period of stress.

Since stress raises cortisol, if you happen to contract a ME/CFS-triggering virus during a period of stress-induced elevated cortisol, then the virus might trigger ME/CFS. Whereas if you had caught the same virus when your cortisol levels were normal, you may not have developed ME/CFS.

We know from Dr Chia's observations that corticosteroids given during the acute or prodromal period of a viral infection is a recipe for precipitating ME/CFS; cortisol seems to facilitate the viral triggering of ME/CFS. I was trying find out how elevated blood cortisol arising from extreme stress compares to elevated blood cortisol resulting from corticosteroid drugs.

If stress-induced cortisol levels are comparable to corticosteroid-induced cortisol levels, then I think we could extrapolate Dr Chia's finding to explain how experiencing extreme stress, at the same time as contracting a virus, can trigger ME/CFS.
 
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unto

Senior Member
Messages
172
ME is certainly contagious, I think we can convey with body fluids
such as blood, semen, saliva;
I have sent one to several dozen people (me directly or through my family).
contracted ME: family, relatives, friends ....
absolutely I do not believe the hypothesis: mycotoxin, sick building, herbicides, infected water ......

Hip
people who contract ME you have not been drinking your water or vissito in your home, you said that they have contracted with "normal social relations" ....
 

Gingergrrl

Senior Member
Messages
16,171
ME is certainly contagious, I think we can convey with body fluids
such as blood, semen, saliva;

Absolutely no one in my family has gotten sick from me including my husband and daughter. We also lived with my parents for six months while I was at my sickest and they did not get sick from me.

absolutely I do not believe the hypothesis: mycotoxin, sick building,

You can choose to believe whatever you want but I believe that there are many roads that lead to an ME type illness (viral, bacterial, mycotoxin, environmental triggers, vaccines, flu shots, surgery, etc) as well as a genetic predisposition. I believe there is usually a series of triggers and then a final trigger that tips the balance. For me that final trigger was mold/mycotoxins.
 
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JES

Senior Member
Messages
1,320
Hip
people who contract ME you have not been drinking your water or vissito in your home, you said that they have contracted with "normal social relations" ....

He didn't say they contracted ME, he said they contracted certain symptoms of enteroviral infection. Contracting this virus is probably a trigger, but it will lead to ME only in a small % of people, or else CFS/ME would be an epidemic in the world by now. I've never "infected" anyone with ME and I very likely carry the same type of virus.
 

Hip

Senior Member
Messages
17,824
I recently came across this interesting summary of ME/CFS facts and research, which notes that in one ME/CFS outbreak, people in the social circle of ME/CFS patients have immune system changes similar to the patients:
In one outbreak, healthy patient-contacts had T cell assays, and low natural killer (NK) cell activity, similar to the patients. The NK cell lytic activity of the healthy patient-contacts was intermediate between patients and healthy non-contact controls

It suggests the same virus is affecting the people in the social circle of ME/CFS patients, but not to the same degree that it has affected the ME/CFS patient.
 
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dannybex

Senior Member
Messages
3,561
Location
Seattle
ME is certainly contagious, I think we can convey with body fluids
such as blood, semen, saliva;
I have sent one to several dozen people (me directly or through my family).
contracted ME: family, relatives, friends ....
absolutely I do not believe the hypothesis: mycotoxin, sick building, herbicides, infected water ......

Again, if ME was contagious, it would've become a world-wide disaster similar to HIV/AIDS decades ago. Simply not the case. You can choose to ignore other possible factors/triggers, but they're documented in hundreds if not thousands of cases. Environmental toxins mess with the liver, the gut, the immune system…the entire body.

@Hip Erik 'Mold Warrior' Johnson as I'm sure you know says that mold was a major trigger in the Tahoe/Truckee outbreak. I can't find a link right now, but seem to recall him saying something to the effect that the only teacher in the Truckee High School that didn't get sick was the one who refused to eat (or teach?) in the room w/the mold issue.
 

halcyon

Senior Member
Messages
2,482
I strongly suspect that in the major ME/CFS outbreaks — the Royal Free Hospital outbreak of 1955 and the Lake Tahoe outbreak of 1984 to 1987 — in addition to a triggering virus, there must also have been local environmental factors in the equation, otherwise how would you explain why the outbreak never spread further than its original confines? The Royal Free Hospital is located in a busy and densely populated area near the center of London, yet the ME/CFS outbreak did not spread to the rest of London.
Royal Free was part of a larger years long epidemic of the disease all over the country. Recall that none of the admitted patients came down with ME at the time of the outbreak at Royal Free.
 

SOC

Senior Member
Messages
7,849
@SOC, here's where I got the info re Mantle and his family history, but of course I trust your knowledge regarding the illiness over wikipedia! And I just noticed it says 'citation needed' for the mine/hodgkin's connection...

https://en.wikipedia.org/wiki/Mickey_Mantle#Illness_and_death

Thanks for the correction, and sorry to hear it runs in your family.
Yeah, it's no fun to have a cancer running in the family, but we're fortunate (if you can call it that) that Hodgkin's is now highly treatable. We have not had a death from Hodgkin's in 40 years now. :thumbsup: Unfortunately, we still tend to die younger than most even if not from Hodgkin's, so there's still some question about a genetic immune abnormality that weakens our ability to fight off some kinds of pathogens.

Since we also have ME in multiple generations, we wonder if there's a connection between EBV-linked ME, EBV-linked Hodgkin's, and a possible genetic immune abnormality. Hopefully we'll have a better idea within the next 10 years whether there's an association.
 

sorin

Senior Member
Messages
345
I am afraid that one reason for not being able to see major progresses about CFS is the fact that under this umbrella of "CFS" there are in fact persons with completely different diseases (some with Lyme, others with EBV, others with HHV6, others coxsackievirus B, etc etc). So what in one case can happen to be very fast contagious, for other is completely un-contagious, both of them potentially being right when reporting to their specific problem. When XMRV theory was withdraw , if i correctly remember, the motivation was that the XMRV virus was detected only on 60% of the subjects. But what if the other 40% were not suffering of CFS but of other diseases? Then the true percentage of positive XMRV would be 100% from subjects. Extrapolating, seems logically impossible that at some point will be discovered a biomarker that will work in diagnosis for all people that suffer from CFS (or at least they name themselves CFS patients ). I can not see how a progress is possible under these circumstances.
 
Messages
15,786
I am afraid that one reason for not being able to see major progresses about CFS is the fact that under this umbrella of "CFS" there are in fact persons with completely different diseases (some with Lyme, others with EBV, others with HHV6, others coxsackievirus B, etc etc).
The same disease may result from different triggers. And because the symptoms are the same, regardless of triggering infections, it seems very likely that it is one disease. An obvious exception would be misdiagnoses, especially when post-exertional malaise is not a required criterion.
 
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Hip

Senior Member
Messages
17,824
Royal Free was part of a larger years long epidemic of the disease all over the country. Recall that none of the admitted patients came down with ME at the time of the outbreak at Royal Free.

I did not realize that was the case (I have not read that much about the Royal Free episode), though of course I assumed that the virus involved would have likely caused sporadic ME/CFS cases in the rest of the country.

So there was an overall epidemic / increase of incidence in ME/CFS in the UK in the years around 1955?

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?
 

sorin

Senior Member
Messages
345
I did not realize that was the case (I have not read that much about the Royal Free episode), though of course I assumed that the virus involved would have likely caused sporadic ME/CFS cases in the rest of the country.

So there was an overall epidemic / increase of incidence in ME/CFS in the UK in the years around 1955?

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?

So CFS is as old as 1955 or even older?
How old is HIV? Some say is as old as 1920, originating in Congo. Then how comes that suddenly was discovered in 1980 in USA in a couple of homosexuals, being named initially "GRID gay-related immune deficiency"? Something does not fit in this puzzle.