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

I’ve absolutely experienced this. I’ve had ME since 1990. The first several years were quite bad, and I didn’t have any colds or flu during that time. Then I improved pretty significantly for about 20 years – I was still pretty sick and needed to rest several times a day and couldn’t exercise, but I was able to work part time and raise my kids. Got plenty of colds and a couple of fluids during that time. The past seven years or so have been so much worse, with my endurance, even when I’m not in a crash ridiculously low. And no colds are flu.

I’ve also noticed that when I did have a cold in the better years, even when I felt totally congested and gunky, my energy felt better than usual.
 
That applies to me - less colds and flu with ME/CFS compared others in my same environment and compared to when I was younger. I remember Dr Prusty did a test where he showed ME patients samples suppressed virus in a model cell line compared to healthy samples.

Dr Lipkin talked a numbers of years ago about doing a study using the Serimmune technology, or something similar, to see how samples respond to infection tests. I think it might have been in his CDC talk. I wonder if he ever did it, and if he has, will he publish the results.
The Serum Epitope Repertoire Analysis (SERA) platform is a universal serology platform that utilizes bacterial display peptide library technology and next generation sequencing to broadly profile antibody repertoires and identify the antigens and epitopes associated with many diseases – all in a single assay.
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Saz94 said:
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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Hmm. I wonder if maybe I can still trust in my immune system weirdness to protect me from covid...

Even the first time I got vaccinated for covid, everyone (even healthy people) was talking about how awful the side effects were. And mine were really mild. Every dose/booster since*, my symptoms have been more and more mild (I haven't even got a sore arm from the booster that I got yesterday!)

So maybe I can conclude from that that my immune system has probably made enough antibodies to covid to be able to resist it in the same way it resists catching other viral infections?

* with exception of the third dose (or is that called the first booster), when I had Moderna which my body didn't seem to like.
 
Saz94 said:
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???
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I wonder if it might be that COVID is such a novel virus that it's not similar enough to colds or flu to trigger previously 'learned' immunity? However, since I wrote that last post, it does seem that what my husband got was COVID, was same sort of symptoms as last time, but - I didn't get it this time! I felt under the weather a bit more than my usual everyday flu-like symptoms, but I didn't catch the full-blown effect that he had. He was really poorly and we were both surprised that I didn't become as deathly ill as he felt. We are both seniors but he is in very good health unlike me, so it was really baffling that he was so badly affected while I got only a very mild case.

When you got it in 2022, were you fully vaccinated?
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We weren't vaccinated. But unfortunately, as we know, even if vaccinated one can still catch COVID. So there's no way of knowing what would have happened if we had been. We'd avoided it very well until then by social distancing, but in this instance, we were a captive audience in our own home - it was because we had to have our windows and doors replaced, and two members of the work crew were coughing their heads off the whole time! Irresponsible of them to come to work like that, argh.
 
Saz94 said:
So maybe I can conclude from that that my immune system has probably made enough antibodies to covid to be able to resist it in the same way it resists catching other viral infections?
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It may stop you getting it...or it may not. I'd had six vaccinations (including one just a few weeks before) when I got it, and I still got it again a couple of months later.

The hope is that it's less severe if you do happen to get it. Worked for me (I could have carried on as normal if I hadn't known I was infected) but everyone's different. It doesn't help that each new edition of the bugs seems to be a bit different to the last! My friend was okay with her first two infections, but the third one she picked up seemed to come with a really sore throat. She's prone to throat infections, so she was sucking home-made Tropicana ice lollies for the first three days.
 
EzzieD said:
I wonder if it might be that COVID is such a novel virus that it's not similar enough to colds or flu to trigger previously 'learned' immunity? However, since I wrote that last post, it does seem that what my husband got was COVID, was same sort of symptoms as last time, but - I didn't get it this time! I felt under the weather a bit more than my usual everyday flu-like symptoms, but I didn't catch the full-blown effect that he had. He was really poorly and we were both surprised that I didn't become as deathly ill as he felt. We are both seniors but he is in very good health unlike me, so it was really baffling that he was so badly affected while I got only a very mild case.


We weren't vaccinated. But unfortunately, as we know, even if vaccinated one can still catch COVID. So there's no way of knowing what would have happened if we had been. We'd avoided it very well until then by social distancing, but in this instance, we were a captive audience in our own home - it was because we had to have our windows and doors replaced, and two members of the work crew were coughing their heads off the whole time! Irresponsible of them to come to work like that, argh.
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Yeah, I know you can still catch covid if vaccinated. I think though in the context that you don't usually catch viruses due to ME immune system weirdness - probably the reason you did get a bad case of covid in 2022 was because it was a novel virus your immune system hadn't encountered before. And of course it would be less novel with your more recent infection.
 
We don’t know if the potential subgroups of people with ME never get any subsequent bugs or who get every bug going has any basis in reality rather just that ME has significant impact on people’s behaviour and thus their exposure to bugs.

Some people have suggest the former have an over active immune system and the latter an under active one, but at present that is pure speculation. It brings back to the fact that we lack a good basic natural history of the condition.
 
I doubt that this thing about not catching infections is true. I suspect a lot of it is that we are out and about less.

I'm pretty sure, though it's a long time ago, that I got the usual colds etc while I was still teaching and had school aged kids.

Since being housebound I'm rarely if ever in contact with anyone with an infection, and don't think I've had a cold or flu. I have still had some infections though, namely tooth abscesses and urinary tract infections. If the theory were true, surely I should have been immune to those too.
 
Trish said:
I doubt that this thing about not catching infections is true. I suspect a lot of it is that we are out and about less.

I'm pretty sure, though it's a long time ago, that I got the usual colds etc while I was still teaching and had school aged kids.

Since being housebound I'm rarely if ever in contact with anyone with an infection, and don't think I've had a cold or flu. I have still had some infections though, namely tooth abscesses and urinary tract infections. If the theory were true, surely I should have been immune to those too.
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"If the theory were true surely I should have been immune to those too" - I'd theorize that you're not part of the subgroup who don't catch stuff, I definitely think it's just a subgroup, and a relatively small one.

For this subgroup, I don't think it's just that we're out and about less - many of us live with people who do go out and about.
 
Saz94 said:
I'd theorize that you're not part of the subgroup who don't catch stuff, I definitely think it's just a subgroup, and a relatively small one.
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But does a subgroup even exist?

I used to know people without any medical condition that hadn't been ill for over 10 years and others that were sick every second month. For a subgroup of ME/CFS patients to even exist you'd have to show that the percentage of these people is higher than in the average population after you have corrected for less interactions. Otherwise you don't have a subgroup of ME/CFS and these things are just properties of being a human being, just how some people are left handed whilst others are right handed you'll also find pwME that are left handed and others that are right handed.
 
EndME said:
For a subgroup of ME/CFS patients to even exist you'd have to show that the percentage of these people is higher than in the average population after you have corrected for less interactions.
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Might you have to correct for age as well? As people mature they may get fewer symptoms of common viral infections, because their immune system's met them before.

None of us can really be certain whether or not we have one right at this moment. All we can say is whether or not we have any recognisable symptoms.
 
Saz94 said:
Hmm. I wonder if maybe I can still trust in my immune system weirdness to protect me from covid...

Even the first time I got vaccinated for covid, everyone (even healthy people) was talking about how awful the side effects were. And mine were really mild. Every dose/booster since*, my symptoms have been more and more mild (I haven't even got a sore arm from the booster that I got yesterday!)

So maybe I can conclude from that that my immune system has probably made enough antibodies to covid to be able to resist it in the same way it resists catching other viral infections?

* with exception of the third dose (or is that called the first booster), when I had Moderna which my body didn't seem to like.
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... in fact I now do have a big hard lump under the skin at my vaccine site from yesterday. I don't even know whether this is a good thing or a bad thing. At least it's not like the earlier vaccines where e.g. using the arm to change my t-shirt would cause pain, this one only hurts when I press on it.
 
Trish said:
I doubt that this thing about not catching infections is true. I suspect a lot of it is that we are out and about less.

I'm pretty sure, though it's a long time ago, that I got the usual colds etc while I was still teaching and had school aged kids.

Since being housebound I'm rarely if ever in contact with anyone with an infection, and don't think I've had a cold or flu. I have still had some infections though, namely tooth abscesses and urinary tract infections. If the theory were true, surely I should have been immune to those too.
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Remember Dr Cheney specifically said 'colds and flu': viral illnesses. So that wouldn't apply to tooth infections, urinary infections and other bacterial infections. I did still get those and more, just not colds or flu!
Saz94 said:
I don't think it's just that we're out and about less - many of us live with people who do go out and about.
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Yes, I don't get out and about much due to ME but people I've lived with would come home with a cold or flu, or a visitor would come over with one, and I just didn't catch them.
 
I often have to wait for a couple of days when I’m feeling my worst to know if I’ve got a virus or a straightforward exertion triggered PEM because the feeling is pretty similar except runny nose & coughing absent in PEM although sore throat and swollen glands can happen in PEM.
 
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