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

[Hip]

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.

That is what happened with the virus that I caught. Although I was the only person to get ME/CFS from the virus I caught, the same virus spread around all my friends and family in a mini-epidemic, and in some cases, the viral prodrome would be a sore throat, and then a month later, the same person would get a 2-day gastrointestinal illness. Or vice versa. It seemed that the particular virus I caught would first establish an infection in one organ or area of the body, and then a short time later, would spread to new organs, whence new symptoms appeared.

 

[SOC]

My daughter and I had the classic very sudden onset viral illness -- one hour you feel fine, the next you feel like you were hit by a truck. The symptoms included cognitive dysfunction, severe muscle aches, severe fatigue, sore throat, swollen lymph nodes. No GI symptoms then, years before, or since.

I had it first. My daughter got it 7-10 days later. I never got well after that. My daughter had long periods of apparent remission with several mild flares a year until vaccines for college (probably the live chicken pox booster) reactivated her EBV and HHV-6. After that she was continuously ill until Valcyte treatment.

FWIW, half a dozen or so people we knew at that time eventually were diagnosed with CFS, FM, or Lyme.

 

[Hip]

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.

Very interesting observation by Dr Jay A. Goldstein. This allergy connection might be a good subject for a subsequent poll.

What I did in this poll was restrict the answer options to known co-morbid conditions of ME/CFS (or to toxic exposures which are commonly linked to ME/CFS).

Why did I do this? Please see my next post below for the explanation.

 

[Hip]

The Rationale for This Poll: Uncovering the Etiology of ME/CFS

I'd just like to explain why I am interested in fielding questions about the co-morbid conditions of ME/CFS. These reason is that a questionnaire on these co-morbid conditions can help get an idea of whether they are playing a causal role in ME/CFS or not, as I now explain.

A co-morbid condition of a disease is one which is statistically found more often in patients with the disease than in healthy controls.

When you have a co-morbid condition linked to a disease, logically there are three possible explanations for why that co-morbid condition is more prevalent in patients with the disease. These three possibilities are as follows:

(1) The co-morbid condition predisposes towards getting the disease. That is, the co-morbid condition plays a causal role in the disease, and has some tendency to precipitate the disease, so that is why statistically you often see the co-morbid condition accompanying the disease.

(2) The disease predisposes towards getting the co-morbid condition. That is, the disease plays a causal role in the co-morbid condition, and has some tendency to precipitate the co-morbid condition, so that is why statistically you often see the co-morbid condition accompanying the disease.

(3) The co-morbid condition does not cause the disease, and the disease does not cause the co-morbid condition. However, a third independent factor causes both the disease and the co-morbid condition, and that is why statistically the co-morbid condition and the disease often appear together, because a this third factor tends to cause both of them.

How can we use these three possibilities to undercover the causes of a disease like ME/CFS? Well, consider this:

• If (1) is the case, then you'd expect the co-morbid condition to arise before you get the disease.
• If (2) is the case, then you'd expect the co-morbid condition to arise after you get the disease.
• If (3) is the case, then the co-morbid condition could equally arise before or after you got the disease, since a third factor is the cause of both disease and co-morbid condition.

So for this poll, the question to ask is whether each co-morbid condition arose before or after an individual developed ME/CFS. If it arose before, then it suggests the co-morbid condition was actually playing a causal role in the ME/CFS. If it arose after, then it suggests that the co-morbid condition was just a result of ME/CFS, but did not actually play a part in causing ME/CFS.

So for example, the fact that irritable bowel syndrome (IBS) is a known co-morbid condition of ME/CFS, and the fact the poll at the moment shows 27% of people said they had IBS before developing ME/CFS hints that IBS may well be a causal factor in ME/CFS.

One mistake I did make in this poll was not including an option for when IBS and the other co-morbid conditions appeared in people only after they developed ME/CFS (a situation which would suggest that IBS does not play a causal role in ME/CFS, but rather that it is caused by ME/CFS). So this poll is logically flawed, because for each of the co-morbid conditions, the poll should have had two available answers, one answer option for when the condition appeared before you got ME/CFS, and another answer option for when it appeared after you got ME/CFS.

I should really consider setting up another poll along the same lines, as unfortunately the logic of this one is not quite right, inasfar as my objective of uncovering the causes behind ME/CFS is concerned.


The only other confounding consideration in the above logic is the possibility that (3) might be true, in which case, you cannot derive any etiological information from whether a co-morbid condition arises before or after the development of ME/CFS. So even if the poll is set up correctly, the etiological conclusions of this poll would only be valid if we assume that (3) is not the case.

 

[PearlGirl26]

I would like to see Candida added here.

 

[beaverfury]

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.

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?

Hip

This pretty much sums me up too. If i ever tried to build my body up by doing weights i could only train for a week or so and then my body and mind would sort of go off the radar. I would have periodic days where my mind was completely blank, like i had inattentive ADHD. I think i needed these days to recuperate.
I still have these ADHD, blank days, on top of the wonderful new cognitive problems of cfs/lyme.

I couldn't get any consistency or intensity in mental or physical activity because i would often need down time.
Though i did manage to play competitive soccer i didn't push myself physically like others seemed to. Maybe i instinctively held back, for good reason.

I had asthma as a kid, have had allergies (mainly hayfever) all my life, and bad depression in my twenties. (I'm 43 now).
Luckily depression hasn't been a problem since i got ill. Played around with a lot of organophosphates, pesticides working on farms for a decade. Got bitten by ticks in 2006.
Got a virus 2009. History!

Marco also seems to talk of a similar, periodic mind blankness with his illness.

 

[Forbin]

I'm not sure how significant the exposure was, but a more than a few people in both Northern and Southern California were exposed to the organophosphate insecticide Malathion during the 1980's. In response to an invasion of Mediterranean fruit flies (the "Medfly"), the state instituted a program of ground and aerial spraying of Malathion in July 1981. The insecticide was also used against the Mexican Fruit Fly in Los Angeles in late 1983 and during subsequent reappearances of the Medfly in the state during the 80's and early 90's.

Although the late night, broad application, aerial spraying was more controversial (the droplets could apparently damage the paint on cars), the ground spraying actually resulted in greater exposure to individuals. Officials, however, maintained that the levels of exposure were very low and safe. Malathion is a cholinesterase inhibitor and a neurotoxin.

http://www.toxipedia.org/display/toxipedia/Malathion

 

[rosie26]

I started getting "lite" ME symptoms about 10-15 years before my horrific onset collapse into severe ME.
The "lite" symptoms started to worsen about 5 years before collapse.
I knew something wasn't right but couldn't work out what was going on.

I was having bouts of unusual exhaustion, light-headedness, visual problems, concentration problems. But I was still able to work full-time during those years.

The year before my collapse though was awful. I could feel myself going down but I had no idea what was happening to me. My sleep packed up 6 months before collapse (wired, insomnia) and it was a very rapid descend from there.

Having had ME for 12 years now, I recognize the "lite" ME symptoms that I had 15 years previous of my onset.

 

[Hip]

@Forbin
The interesting thing about malathion is that this pesticide decays into much more toxic breakdown products.

One of the breakdown products of malathion is malaoxon. As a cholinesterase inhibitor, malaoxon is around 1000 times more potent than malathion. Ref: 1.

In the environment, malathion tends to break down into malaoxon over a period of a few weeks. This means that if any malathion enters a confined space such your home, where it cannot naturally disperse by the wind and the rain, as it breaks down into malaoxon, you get a 1000 times increase in toxic potency within your home.

Any spillage of malathion in a confined space is very dangerous, because of this toxic amplification by 1000.