Since your ME/CFS onset, have you caught the Cold & or Flu more or less frequently?

[Ecoclimber]

I would assume an immunologist could make several assumptions or hypothesis but not on this survey. More specificity is needed to be relevant.

There are several strains of RNA viruses each year, specifically influenza A virus strain and subsets, influenza B virus strain and subsets, H1N1, influenza C, bacterial pneumonia, viral pneumonia etc.. Influenza may vary from one year to the next. One year may be very prevalent for influenza outbreaks and/or the pandemic H1N1, but the next year flu season may be weak and short. These factors need to apply for the purpose of this survey as ME/CFS patients may not have been exposed to the virus because of the mild season. But if infected, you should at least know what influenza virus was the cause of the infection. I would be particularly interested if it was the H1N1 swine flu virus.

2. The survey does not list which patients if any, received a vaccine for a particular strain and if they did, what category did they fall into...More colds, flu or less colds and flu. I believe that would be important information to know.

3. Does the environmental factors shape the exposure to flu, making them less susceptible? Most ME/CFS do not socialize as much as they did before the illness. Therefore many are very limited in their social interaction which would limit their exposure to flu and colds. This may be the reason why some ME/CFS patients have less colds and flu.

There are many other factors as well. A suppose a hypothesis could be made if one drills down fall enough to cover all the other variables.

Eco

 

[Anabel]

2. I've had M.E. for 28 years - I've done some recalculating and I think I can, finally, pinpoint when I got it, although I didn't crash until 3 years later, but I dragged myself around for those three years. I can't remember the last time I had a flu shot - not because of cognitive impairment, but because it's been a very, very long time since I had a flu shot. No flu of any kind. (No colds, either, except for one a couple of years ago, when I was virtually housebound.)

3. When I was in remission for a year and a bit (which, for me, meant that I could do about 50% of what healthy people could do), I socialized, could be in crowds, on public transit, etc. Even before and after that, until I became housebound, 2 years ago, I'd see people, including people with colds. I'd get P.E.N.E. (PEM), afterwards, of course, but that's not the same thing as a cold or the flu. Until recently, I could still go to the grocery store, right next door, less and less all the time - and crash the day after - and that's a great place to pick up anything going. Nope, nothing.

I had it explained to me that I was, likely, getting the viruses but, due to an over-activated immune system, they weren't showing up as colds because my body was fighting them so hard. Whether or not that's the case, I have no idea.

Given the choice, I'd far rather catch colds and the flu than have M.E. - but I wasn't given that choice.

 

[rosie26]

I am not one of the lucky ones who don't get colds/flu. I get the usual amount of colds. I find it hard to discern whether I have a cold or flu though. I have only ever had the bone aching flu once in my life and that was at onset, it threw me down completely into Severe ME and I haven't been the same since.

Although I was deteriorating quite rapidly in the year before onset collapse and more mildly off/on deteriorating 10 years before collapse. So my journey into ME started mildly 10 years before onset.

 

[meadowlark]

Being of a certain age, I still think of colds and flus as two different things. Flu means nausea. A cold means a cough and (I hate this word—it sounds like what it looks and feels like) phlegm.

I have not had a cold in 20 years (the onset of my ME/CFS symptoms). Now my luck has changed. I have what feels like pneumonia (which I had as a young person) but it’s caused by a damp lining in the nose tissue, and (much more) swollen glands. My fever has been 103F and holding for over a week, though it recedes for a few hours a day, and my throat feels like it’s full of salt. Nothing brings the fever down, including aspirin and cold/fever meds. I can’t even try a bit of whiskey or brandy (for the chills). Since the fever has made me delirious, it wouldn’t be a good idea anyway. Ice cubes are my sole relief.

So it seems that my body's odd blockade against colds and flu developed a little chink this year, and a small but vicious thread of the nasty cold in the northeast got into my system.

Not to sound like Pollyanna, but I've been 90% bedbound for a year anyway, so at least the lie-down-and-stay-there part of this doesn’t stress me out.

To those who have ME/CFS and get "colds" in the sense of sinus and bronchial troubles--do you see any difference in the time it takes to recover, compared to the years before your ME/CFS? I imagine it takes longer, but this thing is so freaky, I thought I would ask.

(I have not had a flu shot since my diagnosis in 2000).

 

[Forbin]

Prior to coming down with ME/"CFS" in my early 20's, I would get one or two episodes of the "flu" per year. I would distinguish these from colds mainly in that they would come on very rapidly, knock me on my back and I would have a fever of between 101 and 103.

After getting ME/"CFS," I would not get another "flu" for a decade. I never had a high fever, although I did generally have a low grade fever of around 99.6-100.02 for the next ten years. I also never caught a "cold" during that period (runny nose, congestion) but it's easier to rule out the flu based on the lack of fever.

During that 10 year period, I never had a flu shot and I was hardly isolated from the outside world. My family would get the flu, but I would not. It is true, however, that I was no longer spending time in classrooms with 30-300 other people, so that source of exposure was gone.

I only started to get the flu with fever again about a decade later at a time when my symptoms had improved somewhat. Since then, I still go years without getting the flu. When I do get the flu, it is usually fairly severe (I was pretty concerned once to see my temperature spike to 103 in a matter of hours).

Oddly enough, I still don't get colds.

I remember it took me 3-4 years after ME onset before I noticed that I seemed to be somehow immune to the flu. It was an odd realization. This was well before I ever heard of ME, not to mention prior to the invention of "CFS."

 

[biophile]

The poll suggests a clear majority for less colds and flus since ME/CFS onset. Maybe it is both due to decreased close interaction with other people, and an over-activity in some aspects of the immune system?

Unfortunately, the ICC-ME only mentions increased, not decreased, susceptibility. Was this a major oversight?

 

[rosie26]

@biophile It could be one of the variences in ME. Some lose weight, some put on weight. Some get hit harder with gut problems, others get hit harder in other areas of the body with ME symptoms etc .

 

[Battery Muncher]

I feel it may change over time as well.

Earlier on (first 5yrs or so), I experienced very few colds.

However, in the past 2-3 years, I seem to be at greater risk of colds than pre-ME.

I've only caught the flu once in 7-8 years.

 

[Ambrosia_angel]

I'm actually shocked by these results! I thought cfs lowered the immune system. I've had more infections with cfs then I've had in my whole life and I've only had cfs for 1 year and 1/2. 2 were so bad and sent me to A&E which I've never had to do before in my life, only since the cfs. I've also have chronic infections ( chronic thrush/yeast and reoccurring Mycoplasma infection).

 

[Kati]

@Ambrosia_angel the question above is regarding colds anid flus, not infections, so while many of us have viral reactivations, and other things going on, a majority of us have not had the sniffling, coughing variety of colds and flus.

 

[Ambrosia_angel]

@Ambrosia_angel the question above is regarding colds anid flus, not infections, so while many of us have viral reactivations, and other things going on, a majority of us have not had the sniffling, coughing variety of colds and flus.

Ohh I understand now. I still get a lot more colds. At one stage I was getting one after the other after the other. One week cold, one week recovery and it would repeat.
Does anyone know why a lot of cfs patients have a reduction in colds/flus?

 

[Kati]

It'sdue to the chronic immuneativation we're in. Also manyp eope who have't got any cold and flus for a long period of time can switch to catching everything it is elieved tobe due tothe TH1/TH2 dominance.

 

[*GG*]

It'sdue to the chronic immuneativation we're in. Also manyp eope who have't got any cold and flus for a long period of time can switch to catching everything it is elieved tobe due tothe TH1/TH2 dominance.

the brain is a marvelous thing, I managed to decipher your message!

GG

 

[Kati]

the brain is a marvelous thing, I managed to decipher your message!

GG

oh dear. That bad huh?

 

[*GG*]

oh dear. That bad huh?

It's ok, my brain was up for the challenge today!

GG

 

[Ambrosia_angel]

Lol could help but laugh at that. I just about managed to read it too. I make horrible typos as well.

 

[paul80]

Before a few years ago i never got colds/viruses and i thought it must be due to m.e. But in the last 2 years i started getting them constantly. But they effect me much worse than normal people. Even a mild cold will put me in bed for days, it takes away the small amount of energy i have. So now i'm desperate to avoid viruses as they really mess my life up, but i haven't been able to find a way yet.

 

[*GG*]

Before a few years ago i never got colds/viruses and i thought it must be due to m.e. But in the last 2 years i started getting them constantly. But they effect me much worse than normal people. Even a mild cold will put me in bed for days, it takes away the small amount of energy i have. So now i'm desperate to avoid viruses as they really mess my life up, but i haven't been able to find a way yet.

Like your life is "really messed" up already, right?

GG

 

[MeSci]

Before a few years ago i never got colds/viruses and i thought it must be due to m.e. But in the last 2 years i started getting them constantly. But they effect me much worse than normal people. Even a mild cold will put me in bed for days, it takes away the small amount of energy i have. So now i'm desperate to avoid viruses as they really mess my life up, but i haven't been able to find a way yet.

Are these definitely colds or viruses and not the flu-like exacerbations of ME, commonly due to exertion (post exertional malaise/PEM)? They can be very hard to tell apart. Many of us, myself included, have thought that we kept getting infections before finally realising what they were and what was causing them.

 

[paul80]

Like your life is "really messed" up already, right?

GG

Yea that's right but after a while you learn to accept what you have, you accept it as your new life. Then the viruses come alone and mess that up.

Are these definitely colds or viruses and not the flu-like exacerbations of ME, commonly due to exertion (post exertional malaise/PEM)? They can be very hard to tell apart. Many of us, myself included, have thought that we kept getting infections before finally realising what they were and what was causing them.

Yes i've had m.e a long time (about 17 years) so I'm absolutely sure it is viruses. As soon as a virus is going around the family i know it's coming and then i get it. And i can usually tell by the feeling in my head, you know that kind of strong virus feeling. I also usually get sore eyes/head from reading or watching tv.