Can you trace your illness back to about 1980?

[gracenote]

I was living in the San Jose area and came down with CFS the same year as oerganix in 1982.

 

[MNC]

I was living in the San Jose area and came down with CFS the same year as oerganix in 1982.

Isn't it coincidental for the three of you in that area?

 

[Forbin]

Hi,

I had sudden onset of CFS symptoms in March 1983, in Los Angeles, three weeks after the "worst flu/sore throat" of my life. I was 22 at the time and in otherwise good health. In its first few pages, Olser's Web describes an outbreak first noticed in Los Angeles in the summer of 1983.

After three-and-a-half years of illness, I eventually recovered most of my health beginning soon after I started treatment for a possible Candida overgrowth in the intestinal tract. I now suspect Candida is, in some cases, just another CFS co-pathogen and that treating it somehow helped me.

I've described my experience in more detail here...

http://www.forums.aboutmecfs.org/showthread.php?4542-My-Story-Successful-Treatment-of-Candida

 

[jimbob]

probably already posted this a while back, but sudden onset march 29 1984. I was feeling the best I had ever felt before the onset triggered by a head cold! living in western Massachusetts at the time and the father of two young girls 9 and 11. Never a good time to get it, is there!

 

[Lynn]

In 1980 I had Mono in college. Didn't really recover but I went on to graduate a semester late and got my first job in Michigan. I was a sales rep and often had to stop on the side of the road to take a nap. I also regularly had a low grade fever and swollen lymph nodes. In 1982, the University of Michigan wanted to diagnose me again with Mono but I told them I already had it. So whatever I had went undiagnosed.

I went onto a successful career but was lucky to find employers that would work around my "down" days. I ultimately crashed in 1997. I think I was lucky to have gone so far.

I cannot say what it is that enabled me to last so long in the work-force. But I miss it! I miss making an impact in the world,

Lynn

 

[oerganix]

Isn't it coincidental for the three of you in that area?

Maybe, maybe not. There is another thread here, of people in the SF bay area with CFS. Many got sick in the 80's.

 

[oerganix]

In 1980 I had Mono in college. Didn't really recover but I went on to graduate a semester late and got my first job in Michigan. I was a sales rep and often had to stop on the side of the road to take a nap. I also regularly had a low grade fever and swollen lymph nodes. In 1982, the University of Michigan wanted to diagnose me again with Mono but I told them I already had it. So whatever I had went undiagnosed.

I went onto a successful career but was lucky to find employers that would work around my "down" days. I ultimately crashed in 1997. I think I was lucky to have gone so far.

I cannot say what it is that enabled me to last so long in the work-force. But I miss it! I miss making an impact in the world,

Lynn

I, too, lasted a long time after first getting sick. I dropped out of law school and worked for 6 more years, gradually dropping every other aspect of my life until all I had was my work, until I couldn't even do that.

I miss it, too, especially the income!

 

[HopingSince88]

I think it would be interesting to have a map with little pin heads on it showing the year each of us became infected. It would show geographic clusters as well as a time line.

 

[oerganix]

I think it would be interesting to have a map with little pin heads on it showing the year each of us became infected. It would show geographic clusters as well as a time line.

There is/was one somewhere on PR, with locations, but, I think not dates.

The bay area was blotted out with "pins". Maybe we need a bigger map of smaller areas...this was of the world, I think.

 

[Misfit Toy]

I became ill in 1989 but really started in 1987. My boyfriend had a cold sore and I kissed him. Went away for a week and was in bed pretty much the whole time with canker sores and a fever. Could barely function. Got over that but started having all kinds of infections. It's like that just took down my immune system. It was about a year and a couple months later that I came down with the worst flu like thing (epstein barr) and that was it. I have been sick ever since.

 

[gracenote]

I think it would be interesting to have a map with little pin heads on it showing the year each of us became infected. It would show geographic clusters as well as a time line.

Except . . . I'm making a lot of guesses here . . .

We don't know that when we came down with ME/CFS is when we were infected with XMRV. Some of us (just guessing again) may have already acquired XMRV, and then the triggering factor set off our illness. I think some of us have been able to go back before our illness began to see other suspicious happenings. At least I can.

It's curious about onset dates, but there's still so much we don't know.

It would be interesting to see if any geographic clusters show up, but I would like to see any tracking based on both the onset of ME/CFS and where we lived and traveled. The questionnaire I filled out for my study with WPI asked those questions.

 

[Forbin]

Yes, I sometimes wonder if some of the cluster outbreaks in the early 1980s might not have actually been clusters of a particular virulent form of influenza ("worst sore throat ever"). Then, the people who developed CFS were actually people who already had latent XMRV which was then activated by the severe immune system stress of this particular strain of influenza.

I did a little research and discovered that just prior to my becoming ill in March 1983 there was an unusual outbreak of influenza among patients and staff at the Los Angeles County Veterans Hospital in February 1983. I worked within a few miles of that facility and sometimes had lunch very close to it.

 

[HopingSince88]

Except . . . I'm making a lot of guesses here . . .

We don't know that when we came down with ME/CFS is when we were infected with XMRV. Some of us (just guessing again) may have already acquired XMRV, and then the triggering factor set off our illness. I think some of us have been able to go back before our illness began to see other suspicious happenings. At least I can.

It's curious about onset dates, but there's still so much we don't know.

It would be interesting to see if any geographic clusters show up, but I would like to see any tracking based on both the onset of ME/CFS and where we lived and traveled. The questionnaire I filled out for my study with WPI asked those questions.

Gracenote - you make a good point. In fact I suspect many of us may have received XMRV from our mothers...and so the timeline of outbreak becomes less important.

 

[gracenote]

Gracenote - you make a good point. In fact I suspect many of us may have received XMRV from our mothers...and so the timeline of outbreak becomes less important.

But . . . Maybe another point here . . .

It seems that sometimes (still guessing) XMRV is part of outbreaks, too.

 

[HopingSince88]

But . . . Maybe another point here . . .

It seems that sometimes (still guessing) XMRV is part of outbreaks, too.

Yes. That too. It is like some big mystery and we are on the brink of having it unravel and reveal itself to us...I hope.

 

[Daisymay]

Came down with ME following mono in Feb 1980, and then later that year also had Coxsackie B3 viral infection and now 30 years later still got ME/CFS as has my husband and my sister in law.

 

[sewnsew]

Yes, after a severe month-long flulike illness w/sore throat during a happily busy time in my life in 1982. Symptoms, including pain, slowly piled up after that until they permanently disabled me in the early 1990s.

 

[dean]

I can remember the onset within 5 min, perhaps even less as I realized I there was something wrong....like hitting a brick wall.....it was that acute. 1987 At first we thought it was the flu, and then it just didnt go away for a couple of years...

 

[MEKoan]

Wow! I got sick in 1979 and, like Dean, I remember the moment it hit. However, I had a history of various types of "colitis" from childhood along with a few neurological oddities in the two or three years before I fell - one drooping eyelid when tired, an episode of foot drop, etc. After reading the observations in this most interesting thread, I thought I'd google to see if there had been any outbreaks of bad flu which could have triggered what had been a quiet infection prior to that time.

What I discovered was that, in 1976, there was a large vaccination campaign in response to a flu outbreak - aka: the swine flu fiasco of '76. Many in the US were vaccinated and some in Canada. These vaccinations were implicated in several cases of Guillain-Barr, the vaccinations were stopped and heads rolled - director of CDC was fired as was the assistant secretary for Health.

What I cannot know is whether or not I had that shot. I worked in the schools and we who did may have been vaccinated as a matter of course. This was 3 years before I got sick so it does not account for my sudden flu-like illness. I would not remember a particular reaction to a vaccine as I often had them. Nonetheless, I find this event and its congruity with an upswing in ME interesting.

I also find interesting, and increasingly compelling, the idea that vaccines may trigger preexisting viruses in many conditions including ME, MS, Autism...

Here is a CBC (Canadian Broadcasting Corp.) piece from 1983 analyzing this problematic event in the context of what was then known.

http://archives.cbc.ca/health/disease/clips/12711/

 

[helsbells]

I became ill in 1989 but really started in 1987. My boyfriend had a cold sore and I kissed him. Went away for a week and was in bed pretty much the whole time with canker sores and a fever. Could barely function. Got over that but started having all kinds of infections. It's like that just took down my immune system. It was about a year and a couple months later that I came down with the worst flu like thing (epstein barr) and that was it. I have been sick ever since.

hey spitfire i was deffinately struggling prior to this event but this was a big one for me too. i got the full blown virus and my Dr wanted to admit me to hospital, apparently the thinking being I should either have the virus and get cold sores which I never had until that point or have immunity but i was having the full blown virus and did feel very ill with it. I got german measles soon after again supposed to have had it and really fromt that point, about 1999 i became more or less house bound with things getting increasingly complex eversince. Although as i say prior to that for some years I was incapable of holding down a job. My slight difference from you is I had started to get loads of infections prior to that point but that one seemed to be the big one.