'You'll know you're getting better when you start getting colds & flu again' - anyone else come across this?

EzzieD

EzzieD

Senior Member (Voting Rights)
This is a phrase I used to hear when I first had ME in the 1980s. Has anyone else here come across it? I can't remember the original source, but it was bandied about quite a bit back then. It was thought that something about the immune system being made dysfunctional by ME somehow made sufferers immune from getting colds or flu. At the time, I realised it seemed strangely true: I had ME from 1983-1990 and never had a cold or flu during that time.

After recovering (and having flu and colds a few times during that 15 years of normal health), I again got struck down with ME in 2005. Over the years since then, my husband had flu a couple of times but I didn't catch it. Now, this week, he woke up with a really nasty virus on Monday morning and I've been biting my nails for when it's going to hit me too, but nothing. -I've- been having to take care of -him- while he's been really wiped out.

We both got COVID in 2022, not just him but me too, and a horrendous case it was for both of us. We both came down with it the same day. So, apparently ME immune system weirdness doesn't 'confer immunity' to COVID, only flu and colds. When husband got sick this Monday after attending a hospital appointment last week, I feared it was COVID again and that we would both have another horrific time, but (touch wood) I haven't any symptoms yet, so maybe it's 'just' flu. Really baffling.

[ETA: Just to clarify: In both bouts of ME, I was, and am, mostly housebound, so not going out mingling with people.]

So, this got me suddenly remembering the above-mentioned phrase. Would be really interested to know if anyone has come across this and if it rings any bells?
 
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Yes, definitely. When I first got ill but was still about to be out and about and work an hour or two a day - i.e. mild/moderate ME - I caught a cold with streaming nose and felt EPIC. I felt the best I'd felt for ages. I felt actually well. Later, after a couple more nasty flu-like illnesses I became bedbound and proceeded to not get proper cold symptoms.

[Edit: Actually, I see that I have answered a question you didn't ask, but anyway! :)]
 
Sasha said:
Yes, definitely. When I first got ill but was still about to be out and about and work an hour or two a day - i.e. mild/moderate ME - I caught a cold with streaming nose and felt EPIC. I felt the best I'd felt for ages. I felt actually well. Later, after a couple more nasty flu-like illnesses I became bedbound and proceeded to not get proper cold symptoms.

[Edit: Actually, I see that I have answered a question you didn't ask, but anyway! :)]
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Oh yes you did answer a question I asked, which was that you too had stopped getting 'proper cold symptoms' after becoming bedbound with ME. And also very interesting to hear that when you were milder, you felt the best you had in ages when you caught a cold. There does seem to be something fishy going on with our immune systems!
 
I think I get sick pretty rarely. In the past 5 years, I've probably had 5 or so significant infections, with runny nose, sore throat, and worsened fatigue, and I think 4 of those were COVID. Maybe some more mild ones that only last a day or two.

When the people I live with get sick, I barely worry about trying to isolate from them, since I usually don't seem to catch it.

Also, I'm not isolating from the public. I drive Uber, so I'm sitting in a car with 5 or more different people per day, who are often sniffling or coughing in the back seat. I do blast the fan right after they get out in those cases to clear the air though.
 
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When I get the flu it means I’m at best going to crash for two months or at worse permanently worsen.

I would say this theory has a chance of being biased by the fact people who feel better mingle and travel more thus they are more likely to get viruses.
 
I was the opposite. Before my ME/CFS, I was very rarely ill. Of course influenza affected me when I got it twice as it is normally much worse than having a cold. But whenever I got a cold, it was just a tiny blip on my radar, I kept living my life like nothing was happening, it affected me so little.

And this immediately changed after my ME/CFS onset: I caught the cold frequently, I was very symptomatic, it always floored me and always made my ME/CFS symptoms worse (though temporarily). The same thing happened with my annual flu vaccine: I started getting significant (but otherwise mostly normal) side effects. (Although once it knocked me out for a whole week - that one probably wasn't so normal.)

I have read this too that for a lot of people ME/CFS seems to be kind of protective against infections. Not in my case unfortunately, I have become more prone to being symptomatic with every virus and vaccine and unfortunately, my ME/CFS symptoms are often affected too.
 
EzzieD said:
Would be really interested to know if anyone has come across this and if it rings any bells?
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I've heard people say it, for sure.

When I was working full time I picked up most of the office colds, but I got noticeably fewer as I gradually had to pull back on work and other activities. Which makes sense, specially when you also take into account that people tend to become less prone to respiratory bugs as they age.
 
I never caught a cold or the flu before ME. I had a sudden viral onset which developed into ME but I didn't catch a cold or flu that I'm aware of since. Around the 12 year mark I started getting viral infections or immune responses 80% of the time. I feel worse overall.

I remember over 20 years ago when pwME would get excited from catching a cold or flu. I had no idea why they were celebrating.
 
Thanks, everyone, very interesting to hear everyone's different experiences.
Haveyoutriedyoga said:
I’ve heard this from a couple of people, they were both mild and went out and about to socialise so, I don’t think these few examples were a case of ‘person feels better, goes out more, is exposed to more bugs’ .
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Yann04 said:
When I get the flu it means I’m at best going to crash for two months or at worse permanently worsen.

I would say this theory has a chance of being biased by the fact people who feel better mingle and travel more thus they are more likely to get viruses.
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Sorry I probably wasn't being clear enough in the OP (the usual good old brain farts), what I meant wasn't that the person had improved to where they feel well enough to go out and mingle and get exposed to more bugs, I meant more the other way around: being housebound and only exposed to whomever one lives with, or an occasional friend dropping over.

And mainly I was wondering if anyone had heard that exact phrase in the title. Would really like to know who originated it.
 
It came from Dr Cheney from memory. He said that once someone started getting normal colds and flus this was an indication that they were recovering from CFS.

Stuck in my mind as in the 1980s I was "only" getting my original viral symptoms but not the colds the rest of the family had. I meant to ask him about this at the Invest in ME conference he attended but I completely forgot.
 
I've known a few people who were patients of Dr. Cheney's and he would make some odd comments sometimes. If they didn't fit his theory then they were referred to as 'garden variety'.

My illness immune system has changed/evolved over the last 33 years. How I feel now isn't at all what my symptoms were like back then.
 
Definitely I’m worse if I get any kind of bug. To give my worst example in recent years Covid knocked me back for 3-4 weeks and then several more getting to some kind of usual level. I often can’t tell whether I’m having a PEM induced crash or I’ve got a bug. In the (10?) undiagnosed years it used to be laryngitis or flu type bugs, or crashes. Nowadays I can go quite a few days without in person contact so luckily get fewer actual viruses because of that
 
ukxmrv said:
It came from Dr Cheney from memory. He said that once someone started getting normal colds and flus this was an indication that they were recovering from CFS.

Stuck in my mind as in the 1980s I was "only" getting my original viral symptoms but not the colds the rest of the family had. I meant to ask him about this at the Invest in ME conference he attended but I completely forgot.
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Ahhhhhh yes I think that's it!! I had a very vague memory it was said by a doctor but no recollection as to who. Thank you! And again, interesting that you, too, weren't getting the colds the rest of the family were getting. So strange.
 
I haven’t had a cold in the fifteen years I’ve had ME. I’ve noticed before that when other people in the house get ill, and bear in mind I had three teenage kids when I got sick, all at different schools/colleges so there was a large variety of viruses coming home, I just don’t seem to get whatever it is they’ve caught.

What I *do* get is an exacerbation of my normal ME stuff, like (or actually *is) an attack of PEM, and this doesn’t seem to be any different whether it’s a cold, flu, or a stomach bug that everyone else gets.

Catching COVID in 2022 was the *only* time I’ve had symptoms that matched the bug I caught, but even then I was only mildly ill. I had Omicron, and it just felt like a bad cold. My daughter caught it from me (we’re pretty sure she has ME as well) and we both noticed that although we felt miserable from the cold-like symptoms (I hate colds, only UTIs make me feel more sorry for myself!) oddly enough we both had slightly more energy than usual and felt “better”, although neither of us could really describe what that actually meant. She says she just felt less sort of poisoned, which is as good a description as any.

The symptoms only lasted for about ten days, thankfully, but then after a few days of feeling “better”, we both got hit by about two weeks of what I can only assume was a post-viral reaction, where we both had severe PEM and couldn’t get out of bed. It took us about a month to fully recover from the whole thing, but that’s literally the only bug I’ve caught where it wasn’t just a worsening of my “normal” symptoms.
 
After the very bad cold or perhaps flu which precipitated me into worse ME, I haven't had anything more than a vague sniffle. After that bad one, I was still able to teach from 15 to 20 children in my house each week. They coughed and sneezed and I touched their violins and their hands, vaguely aware of how contaminated they would be. I don't think I washed my hands much during those sessions - disgusting when I think about it now. And yet I caught nothing resembling a cold or any other infection in those 25 years or so of home teaching.
I had to give most of that up quite a few years ago and I still don't expect to catch a cold, however, I'm being extremely careful about covid.
 
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When my ME/CFS was mild, I did catch a few colds (I'd say 1 or 2 a year), along with EBV, and something that caused tonsillitis.

Since becoming very severe, I've only had covid (twice) and both times, I also felt much, much healthier than usual in the two weeks after my fever broke. I mean very low or non-existent ME/CFS symptoms and a level of energy much higher than I'm used to. Both times it was so disappointing to have that effect wane.
 
EzzieD said:
We both got COVID in 2022, not just him but me too, and a horrendous case it was for both of us. We both came down with it the same day. So, apparently ME immune system weirdness doesn't 'confer immunity' to COVID, only flu and colds.
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Oh, damn damn damn damn damn. I had (whilst taking a lot of precautions all the same) been kind of relying on my immune system weirdness to protect me. (I'm like you with not getting colds and flu).

I wonder what makes covid so different in this regard??? When you got it in 2022, were you fully vaccinated?
 
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