For those with virally-triggered ME/CFS: what conditions did you have prior to catching your virus?

[Firestormm]

I am not really sure what you are saying here. Everyone has previously-caught viral infections remaining in their body, but these earlier infections are normally kept in check (ie, kept in a dormant and latent state) by a healthy immune system. For example, most infants will have picked up HHV-6 by about the age of three; and most of us will have picked up Epstein-Barr virus in our teenage years, but these infections will normally be kept latent by a strong immune system.

ME/CFS-triggering enteroviruses such as coxsackievirus B and echovirus are immunosuppressive, and so when you catch one of these ME/CFS-triggering enteroviruses, as a result of a weakened immune system, other latent viruses may spring back to life, and probably contribute to ME/CFS symptoms.

Morning Hip

Sorry. Totally missed the alert to your reply.

I am wondering why your poll lists only the answers it does and doesn't ask - just as an example - if anyone had had any previous viral infections or say, a reaction to vaccination - or any other of the supposed triggers or indeed causal hypotheses. I guess I am asking why you list only the options you do as answers? What is it you are hoping to gain from the poll?

Thanks.

 

[beaker]

I was running 3 miles a day, working full time, no problems. Got sick along 2 a couple friends. All acutely ill after eating dinner together. One I didn't stay in touch, have no idea what her outcome has been ( last known dx was mono). The other full ME/CFS like me.
That to me is clear infectious nature of the beast one way or the other.

 

[GracieJ]

It had occurred to me once or twice in years past that the chemicals used on the canal directly behind my home for mosquito control might play into my issues. I had forgotten about it completely until reading this. I did not check it on the poll, but reading the thread, the light bulb flicks on once again. One more thing to become educated about -- good to know. Here I have grieved the sale of that home 11 years ago. Maybe that was a very good thing to be out of there.

 

[Hip]

Theres a high number of people who had no previous issues prior to cfs. How many of those would have said they were above level of fitness, maybe played a sport at a quite high level of standard, not neccessarily pro but say an A grade standard club player and above?

I think this can show the initial severity of the infection can play a big part in this too.

This is a good question.

Out those who developed ME/CFS from catching a virus, I would like to know: how many people had what you might call "ME/CFS lite" beforehand?

I certainly had very mild manifestation of ME/CFS symptoms all my life, from my school years onwards, decades before a nasty respiratory virus I caught precipitated my ME/CFS proper.

I came down with ME/CFS proper in my early forties; but throughout my life, I found I was always more mentally tired than my peers at the end of the 9 to 5 pm day of work. For example, I was always amazed at my friends and colleagues who would complete a day's work at the office, and then do some sporting activity straight afterwards in the early evening, and then after that, spend the rest of the evening socializing and drinking in a bar. I could not figure out where they got the energy to do that; and yet that level of energy they had seemed to be the norm, and it was me that was the abnormal low energy individual.

For me, if I completed a day's work and then engaged in 45 minutes of exercise (like swimming say) straight afterwards in the early evening, that would leave me completely mentally shattered, such that if I tried to socialize after that, I'd find I literally had no mental energy to even speak with people. I have had some embarrassing moments going for a drink with some colleagues after work and after doing some exercise, where I found my entire mind was so exhausted that it had "seized up", and I simply could not respond to people's conversation or questions. I would sit there with my colleagues, but I was like a dumb mute. I simply found formulating sentences almost impossible. My brain did not have the energy to speak. (Normally however I'd be pretty talkative and gregarious socially).

Of course, this was only a very minor impediment to my life, as this mental exhaustion only occurred when I did too much on one day, like working the whole day and then doing exercise straight after.

But this having no energy to even speak phenomenon that I experienced many times does indicate to me that I had "ME/CFS lite" all my life. It therefore seems to me that I already had some propensity to ME/CFS long before I developed ME/CFS proper.

Do many people with ME/CFS recall experiencing some minor symptoms of ME/CFS all their lives, long before they developed ME/CFS proper?

 

[Sparrowhawk]

I always seemed to get sick with whatever was going around, and be sick longer and more intensely, than others, even in the yars that I was quite fit and athletic.

Always had a tendency to inflammation, allergies, e.g. Mosquito bites would turn into quarter sized wealts, flea bites were angry red and inflamed and sometimes would darken into almost bruises over the subsequent week.

Always found exhaust and other intense industrial smells sickening.

Tended to crash energy wise in the mid afternoon. Used caffeine and fruit juice to basically modify my energy curve to get through that part of the day, which led to staying up too late and not getting enough rest...

As an aside this thread has really caused me to think much further back in my life to early exposures. My house growing up was moldy due to several basement floods. I used to lift weights in another moldy basement in high school. In my early career my office was in a basement of a house that was quite old, and otentially moldy, concurrent to the era when I had the aspergillosis in my ears and our house had mold. So for at least a good ten to twenty year period I had several mold exposures which, if additive or sensitizing, may have had something to do with my current state.

I also did a lot of my own mechanic work, and was very cavalier about carb cleaner and other solvent / epoxy resin exposures. It's only in the last few years I bothered with putting on gloves.

I keep coming back to the many interdependent contributing factors thesis, summarized by "the answer is D. All of the Above"...

 

[Valentijn]

Do many people with ME/CFS recall experiencing some minor symptoms of ME/CFS all their lives, long before they developed ME/CFS proper?

I think I may have, at times. When doing Tae Kwon Do I was getting "sick" so often and missing so many classes that I eventually gave up on it. It might have been PEM with a pretty high threshold.

I also had sweating issues (I couldn't sweat) starting in my teens, which seemed to cause heat exhaustion on a couple occasions. Some neurological symptoms regarding free glutamic acid + low folate levels, including lots of migraines and three weeks of reduced feeling in my right side.

But I also had an infection 2.5 years ago followed by a quick deterioration until I was housebound. Prior to that, I was never particularly high energy, but I wasn't disabled at all either.

 

[SOC]

Do many people with ME/CFS recall experiencing some minor symptoms of ME/CFS all their lives, long before they developed ME/CFS proper?

I would say, yes, I had some minor symptoms associated with ME/CFS at least since my teenage years, certainly in my college years (when I got EBV mono). I had long stretches without any noticeable symptoms until the extremely sudden onset flu-like illness that my daughter and I got at the same time and which triggered our full-blown ME/CFS.

Even though I competed in track in elementary and middle school as a sprinter, I could never develop any stamina. Middle and long distance running was never possible for me even after years of training, so I couldn't compete in track in high school. As a gymnast, stamina was also a problem for me, even after years on the varsity gymnastics team.

I had chronic bronchitis starting in my early 20's. By my 30's and 40's I was much more prone to catching viral infections than the people around me. Somewhere around age 40, I started developing chemical sensitivities.

None of these things interfered particularly with my life (except maybe that I always wanted to run for exercise and never could) until the very sudden onset flu-like illness. I hiked, climbed mountains, worked at mentally demanding jobs, worked long hours, was active in my life and my community with all the minor symptoms. They were annoying, but didn't get in my way. It wasn't until the viral illness that I had cognitive problems, muscle weakness, crushing fatigue, PEM, and other debilitating symptoms.

 

[SOC]

Always had a tendency to inflammation, allergies, e.g. Mosquito bites would turn into quarter sized wealts, flea bites were angry red and inflamed and sometimes would darken into almost bruises over the subsequent week.

Oh yeah! I didn't think of that one. It was a source of amazement and humor in my family -- I always got crazy big red welts from insect bites, which I guess is a sign of abnormal inflammation response.

 

[Hip]

Always had a tendency to inflammation, allergies, e.g. Mosquito bites would turn into quarter sized wealts, flea bites were angry red and inflamed and sometimes would darken into almost bruises over the subsequent week.

That is a point: I wonder if there is any relationship between a disposition to allergies prior to getting ME/CFS, and the subsequent precipitation of ME/CFS from a viral infection.

I had a mild tendency to allergies long before getting ME/CFS: I suffered from hay fever, mild allergy to cats, mild allergy to moldy places, and some gluten intolerance.

 

[Ema]

I started getting big welts from bug bites right around the same time I was diagnosed with adrenal insufficiency. I also had an increase of allergies from all sources to the point where I was taking Zyrtec multiple times a day. I think in some cases at least, it is low cortisol that allows for inflammation to flourish out of control no matter what the source of the inflammation. I think this could be the case in any sort of HPA axis dysfunction which is so common in our population as long as cortisol is lower than optimal.

FWIW, I didn't get this reaction to bug bites before I got sick and I don't get it anymore now that my cortisol levels are improved through replacement.



Ema

 

[ukxmrv]

Maybe an idea for a future poll - if it hasn't already been done. Mine is an allergic family with cases of ME as well.

 

[GracieJ]

Do many people with ME/CFS recall experiencing some minor symptoms of ME/CFS all their lives, long before they developed ME/CFS proper?

I look back over the years, and the answer is yes. I count my years of being ill from age 28, but I think the real kick-off was age 11, with some "markers" coming even earlier. There were signs of what I believe to be adrenal anomalies from babyhood, going by comments my sister has made.

Age 11-12, sixth grade, I was the skinny little thing trailing behind in gym class, back with the overweight girls finishing a lap around the field while everyone else caught their breath and waited impatiently. I had had pneumonia the summer previous, and after the antibiotics, my life was never the same.

I went through junior high and high school with headaches, stomaches, and insomnia. Friday night would come, and while friends gathered for activities, I waved good-bye and went home to rest. My siblings would tease and mock - Oh, she "doesn't feel like it," poor baby.

 

[Sushi]

Oh yeah! I didn't think of that one. It was a source of amazement and humor in my family -- I always got crazy big red welts from insect bites, which I guess is a sign of abnormal inflammation response.

Me too, even as a child.

Sushi

 

[Sushi]

But this having no energy to even speak phenomenon that I experienced many times does indicate to me that I had "ME/CFS lite" all my life. It therefore seems to me that I already had some propensity to ME/CFS long before I developed ME/CFS proper.

Do many people with ME/CFS recall experiencing some minor symptoms of ME/CFS all their lives, long before they developed ME/CFS proper?

Yes, I had health problems most of my life but never thought I "had an illness," just assumed I was a weak specimen. Looking back though, I do think it was "ME/CFS lite."

I remember getting a complete work-up in university because I just wasn't very well even though I was functioning pretty well. This work-up was all the tests Duke Univ Medical Center could throw at me--which was a lot! Of course they didn't find anything.

As I remember, each decade or so I got more symptoms but I also had two major "flu-like illnesses" that were very severe--one lasted 3 months. I didn't start crashing enough to realize that something was seriously wrong until about 10 years ago though.

There had been a long period when I just avoided doctors. This started after one of them prescribed dexadrine just so that I'd feel better!

Sushi

 

[Nielk]

My parents always proudly stated that I was such a healthy child - I never got any of the childhood diseases. I am thinking now that maybe I had an overactive immune system from day one?
As a teenager though I contracted Crohn's disease and was very ill for many many years.

 

[Forbin]

I seem to recall that one of the more long time researchers held that the onset was often preceded months earlier by a bout of gastrointestinal symptoms. This happened to me about four months before I caught some kind of flu and then developed the chronic illness. I only remember this because I rarely saw a doctor at that time but the stomach/abdominal pain was intense enough that I did. Of course, this could just be coincidence.

Does anyone recall which researcher talked about GI symptoms preceding onset by months?

 

[ukxmrv]

I remember Chia saying something like that Forbin when we was trying to explain why some patients had symptoms of an upper respitory type infection rather than a stomach one (like he would expect to see with an enterovirus).

That didn't happen to me though. I was a very healthy child and teenager until ME stuck out of the blue. As a child the only sign I had that "something" was wrong was the family dislike of perfumes and chemical smells. The "big" allergies asthma, hayfever, animals, insect bites, foods only hit later on.

 

[Insomniac]

That is a point: I wonder if there is any relationship between a disposition to allergies prior to getting ME/CFS, and the subsequent precipitation of ME/CFS from a viral infection.

I had a mild tendency to allergies long before getting ME/CFS: I suffered from hay fever, mild allergy to cats, mild allergy to moldy places, and some gluten intolerance.

It bothers me that the poll did not list disposition to allergies as a condition prior to having ME. I had allergies all my life before getting ME yet I was forced to tick the box of "none of the above".

Dr Goldstein said that he observed people with allergies were more likely to get ME/CFS than others.
I had dust mite allergy and cat allergy. I needed nasal steroids all the time.

There was a paper here on PR about people with allergies more likely to respond in a bad way to herpes viruses.
http://forums.phoenixrising.me/inde...cal-herpesvirus-infections.22966/#post-379513

I remember being the worst at PE at school. I also caught colds more often. But so did my brother and he is physically healthy.

 

[Hip]

I seem to recall that one of the more long time researchers held that the onset was often preceded months earlier by a bout of gastrointestinal symptoms. This happened to me about four months before I caught some kind of flu and then developed the chronic illness.

If you think about it, the only way an ME/CFS patient can assume they have virally-triggered ME/CFS is if they noted some flu-like illness or similar viral prodrome symptoms occurring some time before their ME/CFS first began to manifest. ("Prodrome" means the initial early symptoms produced by an infection when you first catch it).

Viral prodromes leading to ME/CFS might manifest as a flu-like gastrointestinal illness, or might just appear as a bad sore throat.

However, without a specific observation of such a viral prodrome, how else would you know that you have virally-triggered ME/CFS?

Sometimes the decent into ME/CFS can be very rapid, happening within days or weeks of the viral prodrome, and in which case, the cause and effect is obvious; other times it can take many months or a few years to descend into ME/CFS after the viral prodrome. In this latter case, the link between virus and disease can be more tenuous — although corroborating evidence can strengthen the link (for example, the virus I caught only gave me ME/CFS a few years later, but I am fairly sure my ME/CFS was due to this virus, because other people who caught the same virus as me as it went around also seemed to develop "ME/CFS lite" from it, so I know my virus has ME/CFS propensities).

Of course, sometimes people catch viruses asymptomatically, and it is possible that many cases of virally-triggered ME/CFS started from an infection which when first caught was asymptomatic, so it would not have been noticed. In these cases, although the ME/CFS would have been virally-triggered, the individual would not really know this (although finding viral infections from blood testing might perhaps suggest it began from a viral trigger).

 

[Forbin]

I guess I was thinking of a scenario in which you get some kind of GI bug and then, months later, you get an upper respiratory flu preceding the onset of ME/CFS. At that point, you may discount or may have forgotten about the earlier GI bug, so you associate the onset with the more recent flu. But, perhaps, its the GI thing that sets you up and the flu is just a kind of tipping point. Wish I could recall who talked about this.