Were You Part of an Outbreak?

[starryeyes]

CFS is a homogeneous disese.

Homogeneous means: 1 : of the same or a similar kind or nature 2 : of uniform structure or composition throughout

merriam-webster.com

At about 5:45:15 on Day 1 on the CFSAC Meeting webcast, Dr. David Bell testifies: "Everybody is saying that this is a heterogeneous condition. Whatever happened in Lyndonville, a small, rural town out by Buffalo NY, was not heterogeneous. 212 people got sick, 60 kids got sick. That made me quite biased, I didn't see sporadic cases.

When we reported this to the CDC in 1985, I talked with Gary Holmes and he said that it was mass hysteria. During the time we were talking with him, he was also dealing with Incline Village in Lake Tahoe, CA, but he never told us that.

I'm very grateful for that because we knew from Day 1 that this was not Epstein Barr Virus and in those years they were thinking it was EBV."

Dr. Bell then goes on to say that he thought that Yersinia Enterocolitica (thank you Denis) that had gotten into to the local milk supply was a coinfection that had helped cause CFS.

Dr. Bell continues, "Dr. Ablashi found it wasn't HHV6, I knew it wasn't EBV, but the patients did have some improvement with Doxycycline. We need to look not only at XMRV but at coinfecting factors."

Then Dr. Oleske says that children are often not included in the studies and Dr. Bell states that he is doing a follow up on the 60 children from the Lyndonville outbreak. So we are now finding out what their symptoms are 25 years later."

Thank goodness for Dr. Bell! He makes the point that CFS is a homogeneous disease and that is what we need to get out there to the medical profession and to the public.

I wonder if we had a lot more outbreaks like this that were missed because doctors were being told that CFS was all in our heads. You or I may have been part of large outbreaks, and now we'll never know.

If Dr. Bell saw about 200 patients with CFS all near the same time, I wonder if many doctors around the U.S. were seeing that many patients who were presenting with symptoms of CFS and just writing us all off! Each doctor we saw may have also seen close to 200 other people with our symptoms and told all of us that these symptoms are in our heads and many of us had to see at least 6 doctors just to get a diagnosis of CFS. Does that make you angry like it does me?

Many people here and I have said that we think we are the only patients our doctor sees that have CFS. If the doctors don't come right out and state that, it's implied that we are the ONLY patient they've EVER seen with the symptoms of CFS. In fact, they make us feel like we are anomalies. Since there are at least a million of us with CFS in the U.S. now then there had to be other unreported outbreaks.

 

[starryeyes]

Wow CFSsince, you sure have known a lot of people with CFS. Sounds to me like you were right in the middle of an outbreak. Did you go to a local doctor and if so how were you treated?

 

[Snez]

I know an awful lot of people with CFS/ME and it makes me wonder.

Going back 20 years ago, at University, a friend of mine had CFS for a few years and then recovered.

Several years later I discovered a coworker and his wife both had CFS. Another coworker had had CFS for 10 years (since his teens) and then made the shocking decision to end his life.

At church the assistant minister's wife came down with a viral illness and never recovered- she's had CFS for a more than a decade.

Another church member has been housebound for over 15 years now.
In the last two years I've met another long term CFS sufferer at another church.

My situation- I came down with a viral illness 3.5 years ago that morphed into the dreaded CFS. Is this at all surprising?

Snez

 

[Min]

I don't know because here in the UK the facts about the illness are being suppressed.


There do seem to be an awful lot of people over here who contracted M.E. in the mid 1980s. I was told repeatedly there was no such thing as M.E., even when I could no longer walk. It took me 10 years to obtain a (private) diagnosis.

 

[Kati]

Just a thought, how about people that do not report ME and end up with cancer- I am sure there are lots of people out there that do not talk about their symptoms becasue they have beenridiculed or told off.I am curious to know the prevalence of XMRV in the cancer and tumor group population?

 

[anne_likes_red]

Mid 80's here too,

...only in New Zealand.

I was living in a fruit growing area and it seemed as if our small town had more than it's fair share of leukemia and lymphomas...particularly among the people who lived or worked on orchards.
My father was an agricultural journalist (writing for a magazine called "Soil and Health" among others) and when he tried to investigate a pesticide/cancer link in the 90's he got little interest or cooperation from the medical establishment.
As far as I knew there was no ME/CFS outbreak specific to my area at that time and I've always thought my exposure to agricultural chemcals (I did a rural paper-run six days a week on my bicycle through roads lined with orchards and occasionally got drenched in sprays) may have contributed to my ME/CFS in a significant way.

I guess I'm just part of the mid 80's worldwide phenomenon.

24 years...almost past counting

 

[Kati]

So... how does it spread???

It's in the saliva, it's in the blood, how about mosquitoes and ticks? IS it in the food, the pesticide- why is it that teachers and health care workers are most predisposed to it?

You look at outbreaks like incline and lydonville- the orchestra (all refered to in Osler's Web) - what do all these people have in common?

I would suggest (don't laugh) epidemiological studies be done- and that the disease (with critical disease markers) is made a reportable disease the same way HIV and TB is. Then we'd get to know what's going on in specific regions.

Epidemiology has its place- done properly and seriously. (Like Dr Bell's study) Scientific and clinical research is as critical id not more to get to treat ALL of us. That time has come.

Just my 2 cents...

 

[bakercape]

Mid 80's

also. My whole family got sudden onset CFS in 1987. Formal diagnosis was Mono. Mom was 48, I was 17 brother was 12. How does a 48 yearold have Mono? Never seemed right to me. Shingles and chicken pox also afflicted us in the first few months of CFS onset.

 

[Liberty]

Infectious

When I intially got sick (in the 80's) 3 more people in my office were diagnosed (at that time it was called Chronic Epstein Barr Virus). We were all diagnosed with Mono and all of us over the age of 30 (which is odd at our age). Two others were dianosed with sarcoidosis (I know I spelled this wrong). Our office was located in an industrial park beside a plastics factory and you could smell the fumes from the plant.

There were so many of us with CFS in our Town during the 80's that we formed a support group and quickly grew to a membership of over 50. There were many people who attended the same church that came down with CFS. In one family the mother and daughter and grandmother were diagnosed approximately the same time. The mother was a nurse and feels a flu vaccination triggered her illness.

That's my story....Liberty

 

[Liberty]

Hi Bakercape

Hi Bakercape,

We are both posting at the same time, with almost the exact story....3 infections in one family and diagnosing Mono in adults.

 

[anne_likes_red]

I hope one day

someone will be able to shed light on why the mid'ish 80's seems to have produced so many long term cases. We weren't all on a plane together at some stage were we?

The only place I visited (end of 1985) was Brisbane Australia.

 

[Alice Band]

Anne,

Do you not classify yourself as part of the Tapanui Flu outbreak in NZ?

Although it was named after a small town, there were people confirmed with ME all through-out the country by the team who investigated it.

 

[anne_likes_red]

Alice...

Maybe, what kind of timeframe does an outbreak spread over?
I'm in the North Island and the Tapanui outbreak (1982, Otago, Sth Island) was 2 - 3 years before I became unwell. I thought "Tapanui Flu" was pretty contained to that area, but really I should read up on it....oh you mentioned that above
I wasn't diagnosed until 1990 after I'd been unwell for 5 years. No one mentioned Tapanui Flu to me then, just "ME".

Edited to add: Sorry Alice, it was 1984 - the Tapanui outbreak, not 82, so that DOES fit in with my timeframe exactly. That year I spent 2 weeks in hospital being treated for a congenital toxoplasmosis flare up. Had I been diagnosed earlier no doubt I would have had "Tapanui Flu"!

 

[George]

My Outbreak Theory

Hi all

I think I get it. Try this on for a scenario. . .

O.k. first what do we know about epidemics or pandemics? We know that air born virus' spread very quickly. The H1N1 took 7 months to go world wide. We know that in the case of HIV it took between 60 and 70 years for it to become a pandemic. (Basically 1915 to 1975/85.)

HIV is spread both through sexual contact, and passed via blood from mother to child or in the case of transfusions. It's estimated that it took around 10 to 20 people being infected with SIV in order for the virus to mutate and effectively infect humans hence it became HIV.

The human HIV infection is traced to bush hunters along the African coast who hunted and killed monkey's for meat to sell. By butchering the monkeys into meat they came in contact with large quantities of blood. These individuals were usually single men who often made stops in ports or cities to sell the meat. They passed the HIV on to whomever they had intercourse with. And those individuals passed it on and so on and so on. Most of these individuals were sexually active with multiple partners and so were able to keep the virus alive by passing it on before becoming sick and dying.

So using that information how can we extrapolate the spread of XMRV with high rates of cases showing up in the 1980's? Well what do we know about XMRV to date?

We know for a fact that XMRV is transmittable in male semen as noted in the study

Fibrils of Prostatic Acid Phosphatase Fragments Boost Infections with XMRV (Xenotropic Murine Leukemia Virus-Related Virus), a Human Retrovirus Associated with Prostate Cancer Received 6 February 2009/ Accepted 21 April 2009 by the journal of Virology

The study states ;

1. Furthermore, XMRV RNA was detected in prostatic secretions of some men with prostate cancer. The fact that the precursor of SEVI is produced in abundance by the prostate indicates that XMRV replication occurs in an environment that provides a natural enhancer of viral infection, and this may play a role in the spread of this virus in the human population.

We don't know if it is spread via vaginal fluids at this time since a study has not been done on this but I would think it a pretty good bet that it does.

We know for certain that it spreads via blood and blood sera or plasma based on the following study.

Detection of an Infectious Retrovirus, XMRV, in Blood Cells of Patients with Chronic Fatigue Syndrome

The study states

We next investigated whether the viral proteins detected in PBMCs from CFS patients represent infectious XMRV. Activated lymphocytes. . . as well as virus preparations from these cells (Fig. 3C), revealed 90- to 100-nm-diameter budding particles consistent with a gamma (type C) retrovirus.

We also found that XMRV could be transmitted from CFS patient plasma to LNCaP cells when we applied a virus centrifugation protocol to enhance infectivity (6, 14, 15). Both XMRV gp70 Env and p30 Gag were abundantly expressed in LNCaP cells incubated with plasma samples from 10 of 12 CFS patients, whereas no viral protein expression was detected in LNCaP cells incubated with plasma samples from 12 healthy donors (Fig. 4A). Likewise, LNCaP cells incubated with patient plasma tested positive for XMRV p30 Gag in IFC assays (fig. S5B). We also observed cell-free transmission of XMRV from the PBMCs of CFS patients to the T cell line SupT1 (Fig. 4B) and both primary and secondary transmission of cell-free virus from the activated T cells of CFS patients to normal T cell cultures (Fig. 4C). Together, these results suggest that both cell-associated and cell-free transmission of CFS-associated XMRV are possible.

We don't know if XMRV is spread via saliva since no study has been done on this. HIV is not transmissible through saliva or casual contact so most likely the XMRV retrovirus won't be either.

Base on the information coming from the founding fathers and mothers of this retrovirus we are hearing that a cofactor is needed to activate the XMRV into an participant in XAND related illnesses. (CFS/ME, autism, atypical MS, cancer, and possibly others) So each of us had to have had the XMRV retrovirus before we were hit by another virus say EBV which activated the XMRV.

The way I understand it EBV or whatever the activating virus is stimulated the immune system thus providing host T,B, and NK cells. XMRV likes those cell especially for replication. So EBV or which ever virus provided the opportunity for the XMRV to replicate. That replication process is why those infected never got better.

Most of us are familiar with the X graph. Viral load goes up, the ability to combat it goes down.

My speculation is that when you are hit by a normal everyday virus that would normally not be a problem for you to deal with, what is actually happening is that you are creating homes for XMRV to move into and raise some kids. And they never leave.

If the HIV pandemic took around 60 to 70 years to infect enough people to become noticeable in the general population then it's not too much of a stretch to figure that the same rate might apply to XMRV. The XMRV became noticeable in the 1980 and was still noticeable in the 1990's. Meaning by the 1980's a good portion of the population had the virus. So if you are sharing the flu bug in your office then it would stand to reason that a number of individuals in your office would come down with a XAND illness sometimes known as CFS.

Right now there are possibly 10 million American walking around with XMRV just waiting for the right event to trigger them. My guess is that some of those people will never come down with anything. Some may have stronger immune systems, the right set of genetics to fight it off or perhaps less of a viral load. These are the dark areas that need the light of many studies to say for sure.

The next question of how did we all become infected and why were their so many outbreaks in the 80's. I have a theory on that and they it's just theory but try it out and see if it fits. Most of the PhD people start the outbreaks in 1934 at Los Angeles General Hospital. I've seen some theory's that go back to 1850 but most start with 1934 and work their way forward.

Remember that it was between 1975 and 1985 that the HIV pandemic peaked approximately 60 to 70 years after the initial jump of SIV to human HIV. Which puts the initial infections of HIV to somewhere between 1890 and 1915. Now if XMRV followed something like the same path and we look between 60 to 70 years from the peak outbreak years you are look around 1915 to 1930 for an event that would allow for XMRV a variant of MLV or mouse virus to enter the human population undetected and be passed on and on an on. So what was that event?

I found a good article here that may explain how the jump in species occurred.

I'll quote from the article

It all starts in 1900 with Abbie E.C. Lathrop of Granby, Mass. Lathrop was a 32-year-old former schoolteacher who had moved to Granby around that time with the notion of starting a poultry farm. That soon flopped, and she switched from chickens to rodents, hoping to cash in on the Victorian craze for "fancy" mice.

At around the same time a Harvard University zoologist named William Castle ordered mice to begin working on genetic experiments. He was a leader in his field at the time. However the man who would ultimately solidify the mouse as perfect for genetic and laboratory testing was one of Castle's undergraduate students, Clarence Cook Little.

Little's innovation was the "inbred strain." By mating brother to sister over and over, he created rodents that were genetically alike. In fact, after 20 generations the mice were nearly 99 percent identical. In 1909 he created the first inbred strain, dba, which is still used in research. Before inbred strains, scientists couldn't say for certain whether their results were because of the genetic quirks of a particular mouse or the experiments.

Is it possible then that one or more of these "inbred strains" carried a mutated form of MLV which would remain unnamed for a century? I don't know for a fact somebody might be able to trace it back. However, I do know that these mice where shipped to hundreds of laboratories and research facilities around the US and world. by 1929 bigger and better mouse holding facilities were needed. Little persuaded auto industry tycoons Edsel Ford (son of Henry) and Roscoe Jackson, chief of Hudson Motorcar Co., to finance an independent research facility, Jackson Laboratory, near one of their favorite vacation spots, Bar Harbor, Maine. Mouse research bloomed. Pasted from <http://pages.slc.edu/~krader/sunarticle.html>

Now the first outbreak is usually figured as the Los Angeles County General Hospital so let's look at that.

In 1896 USC medical school and teaching facility opened it closed from lack of funds in 1910 and reopened in 1928. It was affiliated with Los Angeles County General Hospital which opened a new modern county hospital on State Street in 1933 in what is today the Los Angeles County and USC Medical Center.

So the theory would go like this. . .

Much like the HIV infection of bush hunters, XMRV infected between 10 and 20 persons in the Los Angeles county hospital by way of the USC teaching and research facility and probably many more persons. The XMRV retrovirus lays dormant in the population being passed on and on, including future generations of children. Until, it is activated by a Co-infection. Hence the 1934 outbreak at L.A. General.

Since then those people totally unknown to them have passed the virus on. Handed it down to generations. Flown it across the ocean and married into communities. It's safe to say that hundreds of thousands of people have become infected around the world. We now have a pandemic. The estimate is 17 million world wide with a CFS type XAND illness plus throw in the rise in Autisum, and atypical MS and this is big!

My family is from LA originally and both my mother and I were born at L.A. General hospital. My mother had uterine cancer at age 28. She was diagnosed with Major Depressive Disorder in her 30's. She came down with lymphoma at 39 and died at age 47 in 1991.

Me I've enjoyed perfect health all my life. Hiking, Biking and generally enjoying all that life has to offer. When I decided to go into teaching at age 36 that's when I started getting sick. Every time I got the "illness of the year" that was going around, Mono or flu or what ever I became a little weaker until finally I got sick and didn't recover at all.

So anyway that's my Outbreak Theory. Colonel Mustard; in the Library; with a candle stick!!!

 

[caledonia]

That's interesting George. I guess you would also have to figure out if people ever sliced open mice and got blood on them and weren't wearing gloves.

 

[anne_likes_red]

George, very interesting Outbreak Theory!!
(Fancy having all that historical mouse info to hand!)

Your Mother's health deterioration sounds very relevant to what's currently known about xmrv.
I hope the continuing studies will shed a lot more light for all of us.


Anne.

 

[starryeyes]

...only in New Zealand.

I was living in a fruit growing area and it seemed as if our small town had more than it's fair share of leukemia and lymphomas...particularly among the people who lived or worked on orchards.
My father was an agricultural journalist (writing for a magazine called "Soil and Health" among others) and when he tried to investigate a pesticide/cancer link in the 90's he got little interest or cooperation from the medical establishment.
As far as I knew there was no ME/CFS outbreak specific to my area at that time and I've always thought my exposure to agricultural chemcals (I did a rural paper-run six days a week on my bicycle through roads lined with orchards and occasionally got drenched in sprays) may have contributed to my ME/CFS in a significant way.

I guess I'm just part of the mid 80's worldwide phenomenon.

24 years...almost past counting

I used to go running in the almond orchards in our college town. I wonder if there is a connection there. So many of us PWC were runners.

 

[starryeyes]

Hi all

I think I get it.

By George, I think you've got it! That sounds totally plausible. I'm amazed I've never heard anything like this theory before. You should send it to the WPI.

Isn't it interesting how many people so far report being part of outbreaks.

tee

 

[muffin]

I believe I was part of a cluster after the Gulf War in NOVA

I was a defense contractor supporting the Department of Defense during the Gulf War. We had people coming and going as Reservists and I was at the Pentagon ALL the time. When I got sick with CFIDS, I went to the Nurse MBA, whose job it was to keep health costs down and not be helpful to the sick. When I told her that I had CFIDS and needed time off since I could NOT function, she told me that "WE believe CFIDS doesn't exist and you have depression". So, after this I was given leave without pay, meaning if I didn't somehow show up at work I didn't get paid. There were a number of people that I knew that had similar symptoms, but were diagnosed with other diseases and they did get LTD. I personally knew about 5 people who had what I had. Then, the Nurse MBA sent out an email to about 15 people and myself giving out information on Dr. Cheney as a CFIDS doctor. I did not recognize ANY of those 15 names. So, with the 15 names on the email address list plus the 5 or so other people I happened to bump into, the total was 20. I am certain the Nurse MBA DID NOT keep track of those numbers of people requesting help or information or disability for CFIDS. That would be far too dangerous for the company. And I know she did NOT take any notes on my discussion with her - standard for any sort of personnel type issues so a lawyer can't come back and request that information.
If I knew there were at least 15 CFIDS sick at this company - by chance - then I would assume there were more and not just at my defense consulting company. The people I knew who were sick never recovered or returned to work. I think there was indeed a CLUSTER at my company and NO DOUBT at other defense contracting companies and very possibly at the Pentagon. But you would NEVER see those numbers - never, if they had been kept.

 

[starryeyes]

muffin, thanks for your story. I was told I had depression by my LTD at first too. This is a private company. It's amazing how you were mistreated though. I've been very curious about the experience of military personnel when they come down with CFS. It certainly sounds like there was an outbreak where you were.