Cluster outbreaks

[wastwater]

Are cluster outbreaks a thing of the past and if so I presume most people with ME nowadays arnt a part of a cluster outbreak,does this mean ME is happening the other way round now ie lets say there was a mass infection in cluster outbreaks that caused EBV to reactivate,but now its the other way round the infection is laying dormant and EBV upsets it.Also was gulf war syndrome a mass outbreak.

 

[Kati]

Cluster outbreaks from the mid 1980's were found and declared by doctors in rural practice, in Lyndonville and in Incline Village. Large cities where there are many more physicians are not reporting these weird illnesses, because obviously it is not a reportable disease, and because of the vagueness of the symptoms. Flu-like illness are treated very conservatively.
These are just a couple of reasons why the disease has been allowed to proliferate and been ignored for so long. There are more.

 

[alex3619]

I suspect we still have lots of cluster outbreaks. Only we call them Q-fever, or SARS, or whatever. Now we often identify a pathogen, back then it was just a "flu-like illness". One that has recently received more attention is giardia.

Also we now have a population of docs who usually do not give ME any credibility, and CFS even less. What are they going to report? A fantasy disease? This is just a suspicion of mine though.

The other issue is this. Once upon a time ME appears to have been rare .What happens when so many come down with it that its almost uniformly in the population? There may not be cluster outbreaks but continual new cases.

The Mass Hysteria Hypothesis (my name for it) from 1970 would not help either. Why should they report mass hysteria? That mass hysteria does not stand up to any robust scrutiny does not prevent many docs from thinking this might be the case, particularly in certain schools of psychiatry.

 

[Gingergrrl]

This is not ME/CFS but about 1-2 yrs ago there was a cluster outbreak of an unknown origin (I think in NY but could be wrong) of high school aged girls getting a Tourette's type syndrome.

I remember many doctors and journalists were calling it a mass hysteria but I never believed that and felt those poor girls must have been exposed to some kind of toxin. Does anyone remember that or what happened to them?

 

[wastwater]

Might of been related to this idea.PANDAS is an acronym for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections http://en.wikipedia.org/wiki/PANDAS

 

[Forbin]

The "reception" that Drs. Peterson, Cheney and Bell endured after reporting clusters in the mid-1980's no doubt discouraged others from reporting (good job CDC!). I would dare say that it was not in the CDC's interest to have yet another mysterious epidemic on its hands during the early years of the AIDS crisis.

Later, the 1990 JAMA article linking CFS to depression probably influenced the way that a majority of doctors felt about CFS for a decade (some would argue up until now). Nobody was going to report a cluster of depression.

There are other factors, but the clusters have mainly been noticed in relatively "contained" environments with a few connected doctors overseeing a relatively small population - which made it easier to notice something odd. This was true not just for Lake Tahoe and Lyndonville, but it is also consistent with the clusters being noticed mainly in hospitals, military bases, or in remote communities such as in northern Iceland.

My current feeling is that the clusters may also represent a particularly virulent infectious trigger - perhaps a strain of flu that strikes locally that is somehow worse than the dominant strain going around. This is not to say that ME can only be caused by one strain of virus - or need be caused by a virus at all, but, in the clusters, it seems to be either infectious or some local environmental factor. Just my two cents.

 

[andre79]

I think i was part of a cluster outbreak. One year before onset, me and many people in my office consumed contaminated water and got giardiasis. We all got sick at the same time and got treated with a week of antibiotics and recovered, or at least we though we had recovered.

But then, a year after that, i relapsed very badly, and i have been diagnosed with fibromyalgia. The curious part is that three other women in my office got the same diagnosis with not previous history of symptoms. In the middle of my anxiety i thought i had infected them with some weird virus, but now that i am able to think more clearly i see the root infection was that giardisis.

Of course i am still looking for other causes for my illness but i think that was a main contributor to my decline.

 

[alex3619]

Hi @andre79, this is what I mean by the outbreaks being labelled differently. You would have been part of a giardia outbreak, and issues arising from that would now be labeled as post-giardia.

Q-fever outbreaks regularly occur in Holland for example, but ME is rarely diagnosed, even though we know that 10% or so of post-Q fever patients will develop some kind of long term chronic condition.

 

[Valentijn]

Are cluster outbreaks a thing of the past and if so I presume most people with ME nowadays arnt a part of a cluster outbreak,does this mean ME is happening the other way round now ie lets say there was a mass infection in cluster outbreaks that caused EBV to reactivate,but now its the other way round the infection is laying dormant and EBV upsets it.Also was gulf war syndrome a mass outbreak.

Where there's an outbreak of the infections known to trigger ME/CFS, an outbreak of ME/CFS follows.

The Netherlands had Q-fever outbreaks for several years around 2010 affecting thousands, and something like 5-10% of the Q-fever patients went on to develop ME/CFS.

 

[Wally]

This is not ME/CFS but about 1-2 yrs ago there was a cluster outbreak of an unknown origin (I think in NY but could be wrong) of high school aged girls getting a Tourette's type syndrome.

I remember many doctors and journalists were calling it a mass hysteria but I never believed that and felt those poor girls must have been exposed to some kind of toxin. Does anyone remember that or what happened to them?

@Gingergrrl ,
I believe you were referring to the outbreak that occured in LeRoy, New York. This town is served by some of the same waterways as Lyndonville, New York and there were/are a number of EPA Superfund Sites near these towns.

Here is an article (2012) from the New York times, titled "What Happened to the Girls in Le Roy" that you might want to read. http://www.nytimes.com/2012/03/11/magazine/teenage-girls-twitching-le-roy.html?_r=1

Edit: Another article and news report (video) from 2013. http://www.wgrz.com/news/article/201715/37/What-Really-Happened-To-The-Girls-In-Le-Roy

And another article from 2013 - http://abcnews.go.com/Health/girl-tics-bucks-doctors-blames-lyme-disease/story?id=19128125&page=4

 

[acer2000]

I am sure there are still outbreaks. I doubt they are being kept track of. I mean, the US CDC can't even keep nurses who are exposed to ebola from getting on cruise ships, I seriously doubt they'd pay attention to an outbreak and monitor it for ME. Then again, someone (not sure it was CDC) paid attention to the recent enterovirus outbreak that resulted in polio like symptoms so who knows.

 

[anciendaze]

One possibility is that populations have become so mobile it is impossible to track clusters unless these happen in unusually isolated environments. (My grandfather never flew on an airplane.) Tracking an infectious disease in NYC, SF or LA is virtually impossible unless it produces clear symptoms quickly, or there is something notable about the means of transmission. AIDS was quite difficult enough, even when most cases were confined to a particular group.

There is also a problem in distinguishing clusters from background. I don't believe this disease is actually new. There must be new strains, just as there are with influenza, but I'm now convinced doctors simply would not have been able to distinguish this combination of symptoms from low-level TB or post-polio syndrome until other factors could be removed. There were a lot of people with chronic infectious diseases prior to 1900, but the only drug effective in treating the cause of an infectious disease was quinine for treating malaria, a parasitic disease.

(Malaria is a chronic infectious disease with recurrent flu-like symptoms. Efforts to control it, even with modern technology, still have some distance to go. Recognition of the parasite(s) and the role of mosquito vectors are still new enough so that languages have not dropped the idea it is caused by "bad air". This change in medical research didn't really get started until 1880.)

You can get a feel for the problem of disease reporting from efforts to follow the history of poliomyelitis. It now seems very clear it was endemic in most human cities thousands of years ago. There are paintings in ancient Egyptian tombs showing a characteristic withered leg. In the 19th century the disease was called infantile paralysis, and paralysis often resulted in death.

When infant mortality to age 5 approached 25% it was scarcely possible to separate this from all the other factors. The appalling truth, which hardly seems conceivable to us, is that at earlier times every major city was a population sink, with total deaths outnumbering births.

Ironically, modern recognition of a distinct disease called poliomyelitis came after the introduction of chlorinated water supplies. This allowed vulnerable infants to survive to an age where the signs and symptoms of disease became striking, once they were exposed to the virus. The virus was definitely present before this, it just wasn't possible to track exposure.

I'll add one more problem in finding clusters of ME/CFS in old literature. Prior to the introduction of the Salk and Sabin vaccines polio epidemics were an annual occurrence. Over 95% of the people infected with the virus did not develop paralytic disease. Many who were briefly paralyzed may not have seen a doctor, because doctors couldn't do much of anything. The result was that there were large numbers of people in the population with what we now call Post-Polio Syndrome (PPS). From experience with such a survivor I can tell you this has many characteristics in common with ME/CFS, leading to the early papers describing ME/CFS as "a disease resembling poliomyelitis".

 

[jann1033]

There was also a cluster outbreak on Stock Island, Fl. In the 80s. If its ultimately found to be caused by a virus that's where i got it but it didn't develop full blown for a few years. If all of that is true, there are probably more clusters than reported since who remembers exactly where and when they were in a certain locality unless something dramatic happened.. I never connected it till years later i remembered feeling "fluish" on the way home after we were there on vacation .

 

[Gingergrrl]

@Gingergrrl , I believe you were referring to the outbreak that occured in LeRoy, New York. This town is served by some of the same waterways as Lyndonville, New York and there were/are a number of EPA Superfund Sites near these towns.

@Wally Yes, this was the story I was referring to and thank you for posting the links. I was horrified to read in the first link that they kept quoting Simon Wessley who decided that the girls were mentally ill and were suffering from a conversion disorder (even though he never met nor examined them- although even if he had, I'm sure he would have said the same thing.) Not sure why a U.S. outbreak is quoting him as an expert though? And I still do not believe it was a conversion disorder. They had genuine neurological symptoms, I think either from a pathogen or an environmental cause.

 

[anciendaze]

There was also a cluster outbreak on Stock Island, Fl. In the 80s. If its ultimately found to be caused by a virus that's where i got it but it didn't develop full blown for a few years. If all of that is true, there are probably more clusters than reported since who remembers exactly where and when they were in a certain locality unless something dramatic happened.. I never connected it till years later i remembered feeling "fluish" on the way home after we were there on vacation .

We should note that Stock Island is the site of a hospital for all the lower Florida Keys, and the patients in that outbreak were nurses. This suggests a cause related to diseases more prevalent in the catchment for that hospital. You can find many other instances of outbreaks specifically among healthcare workers in hospitals.

I was in Punta Gorda, Florida at the time of a much earlier outbreak. My memory is that nothing particular dramatic happened immediately. I simply had a "cold" and sniffles. The real trouble came months later we were caught in the Asian Flu epidemic. There is no question that was the "worst flu of my life". I didn't even learn of the Punta Gorda outbreak until 2010, which makes it hard to participate in "mass hysteria".

This is one reason I favor a "two-hit" hypothesis in which the initial infection introduces an immune vulnerability exploited during infection by a later, unrelated infectious disease. The second infection triggers clonal expansion of B-cells the earlier infectious agent is in a position to exploit. In published records of the Punta Gorda outbreak there was a gap of a month between case 1 and case 2. This suggests latency of a month or more, which fits very well with some other descriptions.

 

[Wally]

We should note that Stock Island is the site of a hospital for all the lower Florida Keys, and the patients in that outbreak were nurses. This suggests a cause related to diseases more prevalent in the catchment for that hospital. You can find many other instances of outbreaks specifically among healthcare workers in hospitals.

I was in Punta Gorda, Florida at the time of a much earlier outbreak. My memory is that nothing particular dramatic happened immediately. I simply had a "cold" and sniffles. The real trouble came months later we were caught in the Asian Flu epidemic. There is no question that was the "worst flu of my life". I didn't even learn of the Punta Gorda outbreak until 2010, which makes it hard to participate in "mass hysteria".

This is one reason I favor a "two-hit" hypothesis in which the initial infection introduces an immune vulnerability exploited during infection by a later, unrelated infectious disease. The second infection triggers clonal expansion of B-cells the earlier infectious agent is in a position to exploit. In published records of the Punta Gorda outbreak there was a gap of a month between case 1 and case 2. This suggests latency of a month or more, which fits very well with some other descriptions.

@anciendaze,
I have wondered if the two-hit hypothesis for cluster outbreaks might also correspond to the introduction of a neuro-toxin and a viral or bacterial infection? In studying the "reported" cluster outbreaks starting with the one in the 1930's, it does appear that outbreaks of toxic blue green algae had also occurred in these areas. I realize the "blue green algae" hypothesis has been raised and discussed on previous occasions regarding the "Incline Village" outbreak, but I have never seen the discussions going further into the correlation with these other outbreaks.

Wouldn't a neuro-toxin be something that could trigger a large scale outbreak, but could also be something that could be the "hit" that could be happening on a much smaller more random scale? It would also allow for a variety of neuro-toxins to be the triggering event for individual cases, where in a large cluster outbreak you would see one main neuro-toxin acting as the trigger.

Here is an older article (2011) from Discover Magazine where there the theories about neuro-toxins and illnesses such as Alzheimer's and Parkinson's disease are discussed. http://discovermagazine.com/2011/may/22-seafood-toxins-causing-als-alzheimers-parkinsons

It just seems like the idea of a neuro-toxin coupled with an infectious agent is something that has not been sufficiently studied and/or ruled out yet. Did the outbreaks really stop? The last time the CDC publicly reported on a possible cluster outbreak was in the early 1990's. These reports use to appear on the CDC website, but they were all removed a few years ago. Wouldn't it be easier to study these illnesses if you had a co-hort of patients that could easily be identified through a cluster outbreak?

Edit - Adding another article and video for review at http://www.psmag.com/navigation/health-and-behavior/was-lou-gehrigs-als-caused-by-tap-water-38804
and

 

[anciendaze]

@Wally

You might investigate neurotoxic poisons in shellfish while you're at it. This might explain a number of outbreaks, but it would not explain the increased vulnerability of nurses, because these are generally not transmitted from person to person. There was a patient cohort in Hawaii which had high incidence of anticardiolipin antibodies, which are also associated with shellfish poisoning. A subset of MS and SLE patients also show these antibodies.

Because it is virtually impossible to tie many outbreaks to such causes, I've reached the opinion that a specific cause is not necessary for development of clinical disease, provided there is a prior vulnerability in immune response. This vulnerability appears to be acquired, because victims have often had several prior exposures to similar physiological stressors in the environment which produced no persistent illness.

Whether this is a factor or not, the CDC was taking no chances when they decided to monitor Wichita, KS and Bibb County, GA. (Trick question: which parts of the U.S. are least like Lake Tahoe, upstate New York, Hawaii and the Florida Keys?)

 

[Wally]

@Wally

You might investigate neurotoxic poisons in shellfish while you're at it. This might explain a number of outbreaks, but it would not explain the increased vulnerability of nurses, because these are generally not transmitted from person to person. There was a patient cohort in Hawaii which had high incidence of anticardiolipin antibodies, which are also associated with shellfish poisoning. A subset of MS and SLE patients also show these antibodies.

Because it is virtually impossible to tie many outbreaks to such causes, I've reached the opinion that a specific cause is not necessary for development of clinical disease, provided there is a prior vulnerability in immune response. This vulnerability appears to be acquired, because victims have often had several prior exposures to similar physiological stressors in the environment which produced no persistent illness.

Whether this is a factor or not, the CDC was taking no chances when they decided to monitor Wichita, KS and Bibb County, GA. (Trick question: which parts of the U.S. are least like Lake Tahoe, upstate New York, Hawaii and the Florida Keys?)

@anciendaze,
I think I may be stumped by your trick question??? Would you be willing to enlighten me with the answer???

I have looked at the shellfish theory and it seems to make more sense for smaller scale events. The blue green algae toxins could be introduced by drinking/swimming in contaminated water or breathing in air where blue green algae was present in large quantities. It is the cluster outbreaks that I found most intriguing. Doctors, nurses and military personnel being part of some of these cluster outbreaks could point to an environmental toxin, mixed in with another potent immune stimulate like a vaccination, spiced up with a genetic predisposition/weakness (polymorphisms?) and topped off with an infectious agent.

In cluster outbreak areas such as L.A. Hospital in the 1930's and Incline Village in the 1980's there were reports of a strong sulfur like smell in these areas coming out of sewers and storm drains. The description of this smell is often used by people to describe the smell of large blue green algae blooms.

I had done some extensive research (at least extensive for a novice researcher) about unusual environmental factors going on in the areas where the cluster outbreaks took place. If there was not one infectious agent that could be found to connect these cluster outbreaks, then perhaps there was some other type of environmental factor that can link these outbreaks. Water seemed like a good place to start searching for any similarities between these locations and also because the "smell" reference to the outbreaks in L.A. and Incline Village seemed worthy of further investigation.

Incline Village - Lake Tahoe produced a treasure trove of information due to the "Save the Lake" campaign to stop the greening of the Lake from algae. The problems experienced from fertilizer run-off into the lake to the water treatment/delivery found in this area seemed to provide a very plausible explanation for an environmental factor that could have triggered or aggravated an infectious agent to virulently strike a large group of people. In Lyndonville, New York there are waterways that go right through town and these waterways are fed from upstream tributaries that pass by a known Super Fund toxic site caused by runoff from a fertilizer plant. Since the toxicity of blue green algae is somewhat like mushrooms in that you never really know which year will produce an abundance of toxic mushrooms, this could explain the hit and run phenonomen of these outbreaks.

I am probably doing a poor job of explaining this, but it was the mapping of these cluster outbreaks to the blue green algae outbreaks that seemed to be a thread that was consistent throughout my research. Unfortunately, the hours and hours I had compiled in my amateur sleuthing adventure from my bed was lost when my laptop was hit with a virus (yes the irony is not lost on me) and I unfortunately had not backed up my work. It could be recreated, but I have not been inspired to take on this task without being able to interest others in thinking this line of investigation may be worthwhile.

In the video and articles I linked to in my reply #16, I thought the research they are doing in ALS regarding a possible link to blue green algae was very fascinating. If there is a non-invasive test (hair sampling) that can be done to look for BMAA (β-Methylamino- L -alanine) in ALS patients, why not take a look at ME/CFS cluster outbreak patients from Incline Village and Lyndonville to see if their hair samples would provide any similar markers. The ALS studies are also looking at the amino acid L-Serine as a possible treatment for BAAM toxicity. This amino acid has been looked at by some prominent ME/CFS doctors, but as with most of the metabolic pathways related to this and other illnesses it is probably not a simple fix and more like a well tuned symphony. See, http://www.prohealth.com/library/showarticle.cfm?libid=428 and http://www.prohealth.com/library/showarticle.cfm?libid=8535.

I also found this article regarding Serine and EBV - "Regulation of the EBNA1 Epstein-Barr Virus Protein by Serine Phosphorylation and Arginine Methylation" at http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1472174/ .

So many threads in this quilt of neuro immune illnesses, but it is the brain connection that I find most fascinating. It could be a great opportunity to hitch a ride where great sums of money are being spent to try and unlock some of these mysteries.

 

[picante]

Really interesting discussion! I suspect many of us have been on the lookout for toxins we've been exposed to over our lifetime. This is one that slipped under the radar until 1997, when a test was finally developed to detect it in drinking water:
http://www.rialtoca.gov/perchlorate/water_perchlorate-facts.php

I finally heard about Rialto's perchlorate contamination about 2-3 years ago. There has been a high prevalence of thyroid disease there.

This is where I grew up, in the 60s-70s. That was when B.F. Goodrich operated the plant:
"The contaminant, which has seeped into several of the town's drinking water wells, is the subject of lawsuits by the city of Rialto against 42 parties, including Goodrich Corporation and Black & Decker, the US Department of Defense, and the San Bernardino County.[30] Both companies, most likely under contract with the Department of Defense, operated weapons manufacturing facilities which used massive quantities of rocket fuel." http://en.wikipedia.org/wiki/Rialto,_California#Water_contamination

Of course, no one has tracked cases of CFS/ME in that area, or the myriad associated illnesses. In my case, it seems that drinking rocket fuel for 8 years in childhood set me up for Hashimoto's, which set me up for reactivated EBV at age 35 -- which crashed my metabolism. NOS2 and MTHFR mutations played a role, and so did other toxins.

There are many of these perchlorate plumes around the US, thanks to the US Department of Offense. It would be interesting to get ahold of a map of these locations and poll the PR audience. For that matter, it would be interesting to do the same kind of poll on other contaminants.

 

[picante]

Edit - Adding another article and video for review at http://www.psmag.com/navigation/health-and-behavior/was-lou-gehrigs-als-caused-by-tap-water-38804

I worked in Yellowstone Park for eight summers. Presumably this was filtered out of the tap water. It does make me wonder about some of my hotpotting excursions, though. The areas along the Firehole River definitely had the cyanobacteria, while the travertine hot spring terraces at Mammoth (Gardiner River) did not. Midway Geyser Basin is on the Firehole River, and the employees at Old Faithful went hotpotting in the river where the hot water dumps in.