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ME/CFS Outbreaks--discussion

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....it bothers me that the really important questions do not appear to be discussed! The researchers seem to be losing themselves in their individual areas and lose sight of the big picture. Why is nowhere talked about ME starting as epidemic outbreaks? For decades! If the researchers ask themselves this question, THEN one would really research effectively and not waste any time. A theory must always be able to explain the epidemic outbreaks. I really do not know how many times I should point out ... why isnt there a researcher on it? Didnt you study the epidemics?

I want to keep hope. So please understand the story of ME.
 
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ljimbo423

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Why is nowhere talked about ME starting as epidemic outbreaks? For decades! If the researchers ask themselves this question, THEN one would really research effectively and not waste any time. A theory must always be able to explain the epidemic outbreaks. I really do not know how many times I should point out ... why isnt there a researcher on it? Didnt you study the epidemics?
Derya Unutmaz has a theory that would explain at least some of the CFS outbreaks.......

Putting the patient back together

Unutmaz hypothesizes that ME/CFS is caused by a change in a patient’s microbiome after an infection. Our microbiome consists of our microbes—trillions of bacteria, viruses, and fungi that are living in and on our bodies.

A misbalance in our microbes can change the makeup of our entire microbiome, which triggers an inflammatory response and causes the immune system to perceive that there is still a danger in our bodies – even when an infection is long gone.
LINK
 
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that's the problem. it does not explain the outbreaks! Outbreaks can only be caused by a single pathogen as a CAUSE. But umutmaz says that many different pathogens lead to the same disease, because different pathogens change the microbiome !? And how does that explain an outbreak? Did people accidentally experience all the same microbial change at the outbreak? That makes no sense. outbreaks are always pathogen dependent. ALWAYS! and always the same pathogen! I do not understand why the researchers do not do their homework. These are so banal facts. it really annoys me. And the patients apparently do not understand it either. Outbreak is outbreak. And outbreaks of the same disease can only be caused by the same pathogen!
 
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...I really lose faith in humanity...
the outbreaks are all occupied. ME is an infectious disease. And an infectious disease has consequences. like inflammation in the brain, metabolism changes and microbial changes. But these things are never the cause of an epidemic !!!
 

ljimbo423

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that's the problem. it does not explain the outbreaks!
The specific pathogens that caused the outbreak/s is not relevant to Derya Unutmaz's theory. What he is saying is that an infection from many different pathogens, can cause the disruption in the microbiome, which causes chronic immune system activation and CFS.

The pathogen could be anything that causes significant disruption in the microbiome. That could be Giardia, Epstien barr virus, a fungal infection, possibly even a bad flu in susceptible individuals.
 
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The specific pathogens that caused the outbreak/s is not relevant to Derya Unutmaz's theory. What he is saying is that an infection from many different pathogens, can cause the disruption in the microbiome, which causes chronic immune system activation and CFS.

The pathogen could be anything that causes significant disruption in the microbiome. That could be Giardia, Epstien barr virus, a fungal infection, possibly even a bad flu in susceptible individuals.
how likely is it that a pathogen triggers exactly the same microbiome response in over 200 people at the same time? Not very likely. So what can only be the cause of an outbreak? a pathogen! no microbiome change! The microbial change is a consequence and not the cause.
 
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percyval577

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Yes, there must be an infectious agent. It could be traditionally virus, bacteria, fungi, or protozoa.
It could also be, more advanced, a signaling molecule, a protein, or maybe even a frequency. Toxins have been searched for but without succes so far (cf Underhill 2015). Anything else?
 
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Diwi9

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I believe Robert Phair discussed some epidemiology when discussing that normal genetic variance may be at play in developing this illness, since a certain percentage of people do not recover after infectious illness. I will have to re-watch his presentation when it's posted. This is a domain where the CDC should be taking a lead...
 

Hip

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A theory must always be able to explain the epidemic outbreaks.
@JenB has recently spent a lot of time reading through many of the published studies on the various historical ME/CFS outbreaks, and distilled them into a great article on MEpedia: Epidemic myalgic encephalomyelitis.

I think the outbreaks tell us a lot about how ME/CFS can be triggered: the most intriguing observation is that these outbreaks tended to remain localized to particular buildings or regions. If ME/CFS was caused by an infection alone, you would not expect that infection to remain localized, as when an infectious epidemic occurs, it typically spreads quite widely. So the fact that the ME/CFS outbreaks did not spread widely needs a good explanation.

Such a good explanation is given in the dual-factor theory for ME/CFS, where this illnesses gets triggered by a combination of biotoxin exposure (cyanobacteria or mold) plus a viral infection. The biotoxin may be found just in the area of the outbreak, which could explain why when the virus leaves that area, it loses its ability to cause ME/CFS, except perhaps in the odd sporadic case. This idea was proposed by Erik Johnson, whose was one of the ME/CFS patients of the Lake Tahoe outbreak.

It may be that the biotoxin modulates or weakens the immune response, allowing the virus to insinuate itself more deeply. Certainly immune weakening during the time of the acute viral infection has been discovered by Dr Chia to be a major risk factor for developing ME/CFS.

Incubation periods in these ME/CFS outbreaks were around 4 to 8 days, which is approximately the incubation period of coxsackievirus B and echovirus.
 
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JES

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how likely is it that a pathogen triggers exactly the same microbiome response in over 200 people at the same time? Not very likely. So what can only be the cause of an outbreak? a pathogen! no microbiome change! The microbial change is a consequence and not the cause.
200 people is nothing. If we talk about outbreaks in the general sense, such as the recent swine influenza outbreaks, millions of people got infected. If only 200 people got sick, then it means a large majority in the nearby area did not get sick, even when they probably were exposed to the same trigger pathogen. So let's say 20 000 people got infected but only 1% of those (200) developed ME/CFS, then it may well be due to a microbiome change, a genetic predisposition, multiple combined triggers, etc. But it's almost certainly not as simple as a single pathogen.
 
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@JenB has recently spent a lot of time reading through many of the published studies on the various historical ME/CFS outbreaks, and distilled them into a great article on MEpedia: Epidemic myalgic encephalomyelitis.

I think the outbreaks tell us a lot about how ME/CFS can be triggered: the most intriguing observation is that these outbreaks tended to remain localized to particular buildings or regions. If ME/CFS was caused by an infection alone, you would not expect that infection to remain localized, as when an infectious epidemic occurs, it typically spreads quite widely. So the fact that the ME/CFS outbreaks did not spread widely needs a good explanation.

Such a good explanation is given in the dual-factor theory for ME/CFS, where this illnesses gets triggered by a combination of biotoxin exposure (cyanobacteria or mold) plus a viral infection. The biotoxin may be found just in the area of the outbreak, which could explain why when the virus leaves that area, it loses its ability to cause ME/CFS, except perhaps in the odd sporadic case. This idea was proposed by Erik Johnson, whose was one of the ME/CFS patients of the Lake Tahoe outbreak.

It may be that the biotoxin modulates or weakens the immune response, allowing the virus to insinuate itself more deeply. Certainly immune weakening during the time of the acute viral infection has been discovered by Dr Chia to be a major risk factor for developing ME/CFS.

Incubation periods in these ME/CFS outbreaks were around 4 to 8 days, which is approximately the incubation period of coxsackievirus B and echovirus.
that's all right. however, family members of the hospital staff were also infected and patients with ME. So the potential virus has also spread outside. Of course, it takes several stressors to weaken the immune system so that this potential virus can gain the upper hand over the immune system.

But you also have to ask why almost exclusively the hospital staff fell ill and not the patients? maybe because the patients did less physical work, so the immune system was less vulnerable to the virus? It is well known that often very active people get ME. This can best be explained by the open window phenomenon.

And finally, the many different infections can be explained by the fact that they were just triggers (as well as physical stress, mental stress, mold, etc.) that weakened the immune system at the time that the potential retrovirus could break out.
 
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200 people is nothing. If we talk about outbreaks in the general sense, such as the recent swine influenza outbreaks, millions of people got infected. If only 200 people got sick, then it means a large majority in the nearby area did not get sick, even when they probably were exposed to the same trigger pathogen. So let's say 20 000 people got infected but only 1% of those (200) developed ME/CFS, then it may well be due to a microbiome change, a genetic predisposition, multiple combined triggers, etc. But it's almost certainly not as simple as a single pathogen.
That is partly true. Not everyone seems to get ME. there are certainly genetic factors that may favor an outbreak. And it certainly needs a constellation of stressors to weaken the immune system so that the virus can lead to ME. But you also have to remember that even with a flu, not everyone gets sick. many have the pathogen in them, but it does not break out. But that does not mean that the virus is not the cause of the flu. The virus is still the cause, although not everyone gets sick.
 
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And you have to remember what ME is for a disease. do we get in contact with many other people? no, we are shut off. How should such a big epidemic develop if the patients are usually tied to the bed. And as I said, family members of the hospital staff also fell ill. And who knows if even more people outside were sick? after all, this disease was completely unknown and therefore could not be diagnosed in individuals.
 
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“The greater incidence in offspring suggests that close household contact may have more influence than genetics in accounting for the occurrence of CFS in the offspring.”
"Both Genetic Relationship and Close Household Contact Potential Risk Factors for CFS", http://www.prohealth.com/library/showarticle.cfm?libid=12013


“Conclusions: ME/CFS shows characteristics of an infectious disease:
1. Cluster outbreaks of ME/CFS have occurred globally.
2. In sporadic cases, a febrile onset and recurrent flu-like symptoms are common.
3. Patients’ immune system responses may also be found in some other infectious diseases.
4. The prevalence of ME/CFS is higher in close patient contacts than in the community although most close contacts do not develop ME/CFS.
5. Some healthy patient contacts show immune system responses similar to those seen in patients, suggesting exposure to the same antigen (a putative pathogen).
Although no known pathogen has been shown to cause the illness, there is significant evidence that ME/CFS is an infectious disease, possibly caused by a novel pathogen.”
Underhill, Rosemary A. “Chronic Fatigue Syndrome, Myalgic Encephalomyelitis, ME/CFS: An Infectious Disease"
 

Hip

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But you also have to ask why almost exclusively the hospital staff fell ill and not the patients? maybe because the patients did less physical work, so the immune system was less vulnerable to the virus? It is well known that often very active people get ME. This can best be explained by the open window phenomenon.
You are referring to the Royal Free Hospital outbreak, where many of the staff developed ME/CFS from the virus, but the hospital patients did not get ME/CFS.

Yes I think that exertion is one possible explanation: that the patients did less physical work than the nurses. It is known that exercise and exertion makes enterovirus infection worse. For example, those with coxsackievirus B myocarditis (enterovirus infection of the heart muscle) fare much worse if they exercise. These patients are always told not to exert themselves until the acute heart infection is over.

I also wonder whether there might have been communal rooms such as canteens or staff accommodation buildings at the Royal Free Hospital, where the staff would spend some time, but patients would not. If those communal rooms were contaminated with for example mold growth (in the 1950s, they did not know about toxic mold), then the staff but not the patients would have been exposed to such a biotoxin.

Another possibility is than another pathogen could have spread through much of the hospital staff in an acute outbreak say for example two years earlier. Because it happened earlier, the staff would carry it, but two years later all the hospital patients would be new, and so would not have this pathogen. That pathogen on its own could have been relatively benign, but it might have set the stage for ME/CFS to manifest when the Royal Free ME/CFS later virus appeared.



And finally, the many different infections can be explained by the fact that they were just triggers (as well as physical stress, mental stress, mold, etc.) that weakened the immune system at the time that the potential retrovirus could break out.
There are are only a handful of infections that are linked to ME/CFS. These are primarily: coxsackievirus B, echovirus, EBV, CMV, HHV-6, parvovirus B19, Chlamydia pneumoniae. And then VZV, Giardia lamblia and Coxiella burnetii are also involved. Possibly influenzavirus might play some role.

But dozens of other infections have never been known to cause ME/CFS. For example, just out of the viruses, the following viruses are NOT linked to ME/CFS: rhinovirus, norovirus, adenovirus, HHV-8, measles virus, mumps virus, rubella virus, rotavirus, bornavirus, parainfluenza virus, metapneumovirus, astrovirus, polyomavirus and numerous others. And there are hundreds of bacteria, fungi and parasites which cause human infections but do not cause ME/CFS.

So the question is, why is ME/CFS only caused by a very limited range of pathogens? What is special about the handful of pathogens that have been linked to ME/CFS? Do they have any common characteristic that might explain why it is only these pathogens can cause ME/CFS (to the best of our knowledge)?
 
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@Hip

everything right what you say. At least we agree that it has to be a pathogen. I just think that ME also has adeno rhino and other cold viruses as a trigger. only you will never find out, because you almost never test for these viruses and they are only trigger. So you're out of the blood pretty fast. I also fell ill after a common cold. And as far as mumps etc are concerned, most are vaccinated against it. I think there are countless triggers. ME is also an echovirus disease. The important thing is simply that it is a pathogen. And everything else is the result of this infection. as a result, microbiotics change, inflammations develop, etc. as well as with other virus diseases. Unfortunately has to end, energy is over
 

Hip

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I just think that ME also has adeno rhino and other cold viruses as a trigger. only you will never find out, because you almost never test for these viruses and they are only trigger.
Although rhinovirus (a common cold virus) is also a member of the enterovirus genus, as are coxsackievirus B and echovirus, the difference is that rhinovirus is not capable of chronic infections.

In fact most enteroviruses are not able to create chronic infections, only acute ones. Most enteroviruses are completely cleared by the immune after the acute infection is over (the acute infection lasts for a few weeks).

However, certain enteroviruses like coxsackievirus B and echovirus can undergo a mutation during the acute infection, and this mutation changes the virus into a new type of pathogen called a non-cytolytic enterovirus, which is able to form chronic infections. It's these chronic non-cytolytic enterovirus infections which are found in the brain, muscle and stomach tissues of ME/CFS patients.


Adenovirus outbreaks are quite common in close communal living environments such as army barracks. Hundreds of people may be infected by adenovirus when an outbreak occurs, but there are no reported occurrences of ME/CFS connected to these adenovirus outbreaks. So it does not appear that adenovirus can cause ME/CFS.

However, adenovirus 36 has been proposed as a causal factor of the global obesity epidemic, as AD36 causes obesity when mice are infected with it, and AD36 is found in 30% of obese people, but only in 11% of non-obese people.
 
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Although rhinovirus (a common cold virus) is also a member of the enterovirus genus, as are coxsackievirus B and echovirus, the difference is that rhinovirus is not capable of chronic infections.

In fact most enteroviruses are not able to create chronic infections, only acute ones. Most enteroviruses are completely cleared by the immune after the acute infection is over (the acute infection lasts for a few weeks).

However, certain enteroviruses like coxsackievirus B and echovirus can undergo a mutation during the acute infection, and this mutation changes the virus into a new type of pathogen called a non-cytolytic enterovirus, which is able to form chronic infections. It's these chronic non-cytolytic enterovirus infections which are found in the brain, muscle and stomach tissues of ME/CFS patients.
Yes, I know that, thank you. But according to Ron davis, there are no infections in the tissues if they are not also found in the blood;))) why is not a single word about epidemics and infections mentioned as a CAUSE throughout the conference?
 
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alex3619

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Outbreaks can only be caused by a single pathogen as a CAUSE.
There are many problems with this statement. For example, it does not differentiate between causes and triggers. It does not take into account different pathogens might have been at different outbreaks, or different strains of the same pathogen. It does not take into account co-causes or co-triggers at different outbreak locations., symptoms vary a lot between outbreaks It does not take into account the zero reporting of outbreaks in recent decades. There are potential explanations of all these but that makes it a much more complicated picture.

Researchers cannot go back and just study the outbreak patients reliably. We might with a new outbreak. There have been none in the last two decades, though I suspect this is because the trigger pathogen was found and the outbreak was named after the pathogen. There are many trigger pathogens, if you presume its all one illness. Alternatively we have post-SARS, post-Giardia, post-Ebola and so on.

I do know that a small number of the Royal Free outbreak patients are still alive and some of them (if not all) are still more or less sick.

Studying outbreak patients has many of the same issues as studying general population with ME ... unless you select from one single outbreak. The time to do that best was probably in the 80s, and the CDC failed to do so.