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

[Anabel]

Hi everyone - newbie member here and, oh no, I just lost 4 paragraphs I'd written! My brain isn't working very well, tonight, so that's not good and I don't know how I managed to do that. Try again.

I've had M.E. since 1989. Prior to that, I caught colds and the flu the same as everyone else did. There wasn't a summer or a Christmas that went by without me having a terrible cold. After I got M.E., I didn't catch any colds or the flu, period. It took a while for that to sink in - I'm not getting colds anymore, that's strange.

In January, 2012, I became basically housebound but, prior to that, I'd been out and about (that sounds so lovely, now - out and about). I hadn't been dancing jigs or anything but I'd been around lots of people, including people with colds, but I never caught them. 2 or 3 weeks after I became basically housebound, I got a horrible cold. It lasted about 3 weeks and it was like the old days - it went to my chest and I thought I'd cough up a lung. I thought that that must be a good sign. I've got a cold, yay!

In the end, it wasn't a sign of anything but it is the only cold (no flu, at all) I've had in over two decades.

Like maryb, I'm surprised at the poll numbers since I always read comments, in various places, by PWME who talk about catching every infection going and how they have to be very careful.

In the past three months, I've gone from basically housebound to pretty much bedbound but I have a friend who had a really terrible cold, in December. I saw her, frequently, while she had the cold. She gave it to everyone else around her, but I didn't catch it.

The scientific explanation for that would be too much for my foggy brain to understand but I was very interested to see that, according to the poll, I'm far from the only one with this variation - or what I thought was a variation.

 

[Valentijn]

Like maryb, I'm surprised at the poll numbers since I always read comments, in various places, by PWME who talk about catching every infection going and how they have to be very careful.

I think one explanation is that we're all different. Our immune systems might be reacting in different ways, either based on genetic predisposition or lurking infections or maybe even as a result of whatever drugs or supplements we're taking.

Another thing to take into account is the very strong similarities between PEM and having a nice flu or cold. I think many people attribute PEM symptoms to catching viruses until they learn about PEM and are better able to differentiate between them. In addition, most psychologically based treatments focus on denying PEM symptoms and attributing them to anything other than ME/CFS. Viruses are a common whipping boy in those programs, so it's probably not uncommon to see dutiful participants stop having PEM and start getting "the flu" every week instead.

 

[Valentijn]

One thing I'm finding interesting with my current bout of flu and/or related infection: my threshold for PEM might be higher than usual since I came down with the flu. Two days ago I shoveled snow - not the light fluffy stuff that falls into the shovel, but a thick layer of ice from two hours worth of ice pellets falling, sandwiched by thin layers of dense snow.

My heart rate was quite elevated by the time I finished, and I felt flushed and worn out. But no crash has been forthcoming. I'm still coughing up yellow crud and intermittently feeling feverish, so I might try shopping today without my mobility scooter to see what happens. That would pretty much always trigger a crash, so should be interesting to see if that happens while I'm sick. Oooh, or maybe I'll clean a bathroom!

 

[Anabel]

Valentijn said - "Another thing to take into account is the very strong similarities between PEM and having a nice flu or cold. I think many people attribute PEM symptoms to catching viruses until they learn about PEM and are better able to differentiate between them."

That's a very interesting take on it. PEM and I are well acquainted. Malaise, such an innocuous word - 'a feeling of general discomfort or uneasiness'. I guess they couldn't come up with one word meaning exhausted, can't think, pounding heart and agonizing pain.

'Flu-like symptoms' - I always think of the flu as fever and vomiting, since those were the main symptoms I used to get. But, for other people, muscle pain and feeling exhausted might be considered to be 'the flu'. I can see how there could be a confusion between PEM and the flu, if that were the case. Don't get me started on how I feel about the psychobabble surrounding all this.

Since you know what PEM is, you know that, right now, you've got the flu and, yes, we are all different and have different immune responses.

I'm shocked that you were able to shovel all of that snow/ice without crashing. Good luck with your shopping and/or cleaning the bathroom. If you don't crash, after all that, please ship whatever virus you've got to me because there are a few things I'd like to do, without crashing.

When I hit reply, if your part doesn't come up in orange, I've done something wrong but I don't know what, since I've never replied to a thread before. And it didn't!

 

[maryb]

I also had the first cold in years last November, it knocked me off my feet for about 5/6 weeks. Whereas all the family had it for only 3/4 days.
It was touch and go whether I would make a trip to Tenerife for a month that we had planned ( and I'd been plucking up courage for) even up to the day before my hubby was saying to people I don't know if we'll get there.

The sun definitely helped me, and I got out every day albeit in a wheelchair, but unfortunately not sleeping well (hotels ) and having to break my very strict diet because I just couldn't find anything to eat a lot of the time meant I didn't benefit as much as I might have. I came back and within 4 days had relapsed to my former state of health. One thing for certain though we need to move, that holiday proved it.
I've swept the leaves up outside the front door (3 metres square) today in the sunshine, thats the limit of my physical ability and I've improved this week slightly
Thats why I hate the psychs so very much, I want to be out walking around garden centres and planting spring flowers in my garden, I don't want to be stuck in as I am.
How wrong can people be??????????? Sorry to ramble on as is my want.....

 

[PNR2008]

I don't get colds since having CFS/ME or usually the flu but I get other things. In 25yrs I only got one flu a particularly nastly stomach (holding the commode kind, sleeping on the floor of bathroom) flu but the entire family had that one. I seem to get sinus infections and got pnuemonia once and bronchtis (soon to be pnuemonia) once. I get other things like reactions to stings and antibiotics that formerly were tolerated. So it seems I traded one bad thin for another.

 

[MeSci]

I think a lot of people with ME often think they keep going down with viruses because the symptoms of PEM are the same as those of colds and flu, and because doctors will tend to say 'It's a virus" when they don't know what's wrong. At least they do in the UK! I haven't have a cold or flu in years, and can't remember getting one since developing ME in 1995. I think I may have had a few mild ones in the early days, and when I did I actually felt better.

Why do I think this is? I think that we tend not to get colds and flu because our immune systems are hyper-alert.

Why did I feel better when I had a cold or flu after developing ME? Because my immune system was temporarily distracted from attacking me!

 

[MeSci]

Who of you had BOTH the sudden flu-like onset AND more colds & flus since your ME onset?

I can only reply in a complete negative: neither a sudden onset nor an increase in colds and flu - so that may be relevant to your line of thinking!

 

[MeSci]

Of course if you are largely house-bound or bed-bound you are not going to be out and about touching hand rails / door knobs / keypads or shaking hands with people so you are not going to come into contact with cold/flu viruses.

I do come into contact with people, and still don't catch anything. Friends often say that they will avoid hugging me or coming too close because they/their kids have a cold or flu, but I always tell them not to worry as I know I won't catch it!

 

[maryb]

Funnily enough I've never had a cold sore since getting ill until coming back from holiday recently when I got 2 smackers:
started again this week (been home 5 weeks) with another 2 and then they just went away really quickly within 2 days - like my body had fought off the virus - really the strangest thing.
Of course the doc would say they weren't cold sores but I know they were - like we all know better than our docs....................

 

[Valentijn]

Of course the doc would say they weren't cold sores but I know they were - like we all know better than our docs....................

In the immortal words of Cartman: "Cold sore is what girls call it Kenny. It's actually herpes."

 

[aiden424]

I catch everything, and am sick for weeks to months. I have almost no natural killer cells, so I don't know if that is why or not. Exercise and viruses are the two big things that can knock me down for a very long time!

Kathy

 

[Jpenfam]

I came across this poll because I actually googled the question. I found it odd that everyone around me has gotten numerous colds and/or severe flu bugs, and I never get sick! ... ps I have four kids and work in close surroundings with others. Since onset of ME/CFS in 2009, I have only been sick one time, during that time it was also the only time in the last 5 years that I was in a remission phase. Other than the one time I have never gotten sick, unfortunately as others have written, it feels like I have the flu all the time. thanks for posting and be well!!!
Also, as a side note, every-time I have gotten lab work done my WBC is always a little on the high side.

 

[Kati]

@Jpenfam welcome to the forum.

I haven't had a single cold or flu since disease onset, some 5+ years ago. Most physicians don't feel this is a problem. The poll results are very telling to me, and it confirms the chronic immune activation, or overactive immune system.

 

[Sushi]

I just saw this as it came floating up to the top of New Posts. I voted but there was no choice that really fit cause I've had no colds or flu in the last 10 years or so.

Sushi

 

[Kati]

Isn' t that something, Sushi huh?

 

[Sushi]

Isn' t that something, Sushi huh?

Yes, a mixed blessing. It is great not to get colds and flu, but not great when you understand why!

In the decade before ME though, I caught everything--so I'd guess it is some sort of a "progression."

Sushi

 

[taniaaust1]

Maybe this poll seeing 100 people have voted, would be great to send to some immune researchers (pointing out that this website also has high amount of people here who fit the international ME definiton.. we dont need another CFS study). It could be a good one to get a new immune researcher interested in studying ME/CFS.

 

[Kati]

I tweeted this link. Hashtag immunology, but I don't think that hashtag is well used.

 

[PDXhausted]

Same for me. Used to catch a horrible cold every six months my entire life up until I developed full blown ME/CFS symptoms four years ago (I was a gradual onset). Haven't had a cold since, and I've had plenty of chance for exposure. A couple times I've felt the starts of a cold-- a little tickle in my throat or a bit of a runny nose, but it always goes away before it turns into anything, whereas in my prior life it would have had me down for at least a week.

Incidentally, I've not had the flu since I was a small child and I've never had a flu shot. My 23andme results showed I have norovirus resistance, so that may partially explain it. Wonder if there is such a thing as influenza virus resistance?