Remission when ill with other infections?

L

Londinium

Senior Member (Voting Rights)
Two weeks ago I spent a week in the US at a work conference (Recap: I have generally a mild, though there have been prolonged times housebound and at certain times close to fully bedbound - I am still in full-time work albeit about 60% from home). This is always tricky for me as it involves a lot more walking for several days in a row than I would do in a normal week and the best case scenario is normally a crash when I come back.

The entire week I was there I had a stinking head cold, and pretty much lost my voice so that I was a croaky whisper for the whole week. However, my ME symptoms were much, much reduced. This is despite me walking 8,000 to 9,000 steps per day for six days in a row. This is pretty much what I walked on average before I got ill and well over double my normal average. Indeed, 6k steps for one day only is normally enough to cause me to suffer for a day or two afterwards. Two weeks later, still no crash - albeit that as my cold subsided I could feel that I needed to reduce my step count to avoid one.

This is about the third or fourth time that my ME/CFS symptoms have appeared to recede when I've had a cold (I have a toddler who is also a very effective disease vector!). I was wondering if anybody else had the same? Do you sometimes find that your ME/CFS symptoms are less when you are ill with something else?


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(Massively unscientific speculation: I have a strong family history of autoimmune illnesses of various forms - I wonder if when my immune system has something proper to work on it leaves the rest of me alone for a bit?)
 
Yup, everytime I have a normal flu or common cold (which is relatively rare as I don't get out that much anymore) my ME symptoms back off a lot. It's like a vacation. A vacation during which you have the flu, sure, but I can read way more, do more around the house, move around more easily... This effect seems to stay around for a day or two after feeling 'well' again before it's back to hell for me.

I don't remember if that was always the case, though - the first couple years into my illness were very different and I wasn't anywhere near as disabled as I am now. I also don't really wanna go out and try to catch colds intentionally because I assume there is a possibility that this is damaging long-term.

I have heard that not everyone has this effect and some people crash afterwards (I don't generally even if what I did during the miniremission would normally be way above my limits), so it would be cool if we could somehow find out if there is a common theme that predicts this. I don't have much in terms of autoimmunity in my family that I know of (just a lot of common allergies) and started off with boring mono if that helps.
 
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This is not the case for me. Immune responses to viruses, allergies etc depletes my stamina and I feel worse over all. I'll experience immediate "PEM" when normally I can power walk for an hour and not experience immediate or delayed PEM.

I also become out of breath quickly after exertion.
 
I've experienced this occasionally, sometimes I feel a bit more energetic when I get an infection, but it is still far from being well.

It's kinda irrational but everytime I have an infection, I hope I'll get well again - but it was years ago since I met someone who coincidentally became well again after having a serious infection...
 
Philipp said:
Yup, everytime I have a normal flu or common cold (which is relatively rare as I don't get out that much anymore) my ME symptoms back off a lot.
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Same here. I usually can tell when I am getting a cold or flu a day or so before any symptoms show up as I go from being a person with ME, to feeling (somewhat) like a normal person with a cold/flu.

However, it never lasts, and I have to be careful not overdo it because the payback on top of having just had a cold/flu can be serious.

But it is interesting, and one of the earlier distinct weird things I noticed about ME.
 
The only infections I've had in the last few years have been a couple of bouts of cystitis and a couple of infected teeth. Both bacterial infections treated successfully with antibiotics. Neither led to any improvement in my ME, and the last cystitis made me sicker.

I wonder whether viral infections like colds are different. Haven't had one for years, mainly, I assume, because I very rarely go out, and visitors don't come if they know they have an infection.
 
I had the usual experience last Christmas of picking up the bug that was going round the family. In this case a bad cold very runny nose streaming eyes I felt awful for 3 weeks and spent most of that in bed. Bugs definitely make me feel worse than usual and it takes me a while to shake them off.
 
The King Lear effect "Where the greater malady is fixed, the less scarce is felt". (May not be an exact quote as my memory is not reliable.)

I think when he said this King Lear was seeking physical discomfort to distract himself from mental anguish.

I guess the BPSers would see this as confirmation that our ME is all in the mind and that when our psychological need for being ill is being met by a real condition we have no need for our ME.

Could the answer for this phenomenon be down to increased immune activity? Presumably when we have an active infection our immune system goes into overdrive. Could this increase in our immune activity counteract whatever is causing the ME symptoms? That this varies from person to person suggests there is not a clear cut explanation. Though ME is linked to abnormalities in our immune systems, there seems to be confusion arround whether it is over or under active or if this varies between people or within individuals over time. (Unfortunately I struggle to learn the vocabulary necessary to adequately understand the biochemistry.)

This response would certainly seem to contradict any suggestion that ME is some form of 'sickness behaviour', as presumably you would assume an additional infection would increase rather than diminish any 'sickness' response.

Personally I have not noticed this effect [any additional infection exacerbates my ME symptoms], though I conversely have found variation in my level of ME symptoms is not linearly related to how frustrating or depressing I find it. As I vary between relapse and remission, I was surprised to find being bed bound to be less frustrating or depressing that teetering on the edge of being housebound. When I can get out and do things I find or when I can do nothing I find it easier to manage my psychological response, than when I am in a position of having to constantly evaluate what I can and can not or should and should not attempt.

At first I found this strange that in periods when my health was improving my mood might worsen, until I clicked that in this intermediate state you are constantly thinking about what you can and can't do so are much more aware of a concrete list of things you can't do. When worse off you only do an absolute minimum for survival so you are not hourly faced with having to choose to not do things.

In this framework having an addition infection, might make life feel easier, because you are freed of the many decisions about how to manage your ME. However this does not seem to fit with what people are describing in this thread.
 
My experience is that there are normally a few days before I come down with 'something' and in this time I feel a little better and with more energy.

Then the terrible crash occurs and the cold or flu that has been percolating hits plus Post Exertional symptoms if I didn't stop myself overdoing it.

I've often wondered if this is part of the crash effect that some CBT and GET therapists claim to be part of their push/crash effect that their version of pacing will cure?

The problem with that theory, is that it doesn't acknowledge that a virus causes the ' flu like' symptoms and the short window of functioning that occurs for me before is part if it.

It's not my exertion in the false energy period before a flu that causes the flu but the other way around.

It's something that stops me wanting the 'illness behaviour' researchers being involved in ME research as well.
 
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Don't know if this is relevant to why I am one of those that don't get a counter intuitive dimunition in ME symptoms in the context of an additional infection, but unlike @Sean I do not know in advance when I am getting a cold of flue, as a common symptom of PEM for me is feeling like I am getting a cold of flue.

I regularly feel as if I am in the early stages of some form of infection. I rest and if it goes away, I assume it is PEM, if it grows into a full blown cold or flue then ... ... ... Though most often now it goes away, presumably as my reducing contact with others and certainly with people who might be infectious means I am exposed to fewer infections.

Though again there is the question of the variation within ME between those that seem to catch every bug doing the rounds and those that do not. Also the possibility that within the course of their condition individuals can switch between the two. Certainly when I was still working I got everything that was going, but now rarely get full blown infections, but whether this related to my susceptibility or to levels of exposure I have no idea.

Are there any patterns in individual's responses to these factors:
- increased susceptibility to infections
- negative response to vaccinations/inoculations
- negative impact of co occurring infections on ME symptoms

I used to have a high susceptibility to infections, but don't know if this is reduced now as I avoid exposure, I respond negatively to the flue jab and don't have it now because it exacerbates my ME symptoms and any co-occurring infections also exacerbate my ME symptoms. So I would provisionally indicate 'yes' to each. Do those here that have a reduction in ME symptoms during an additional infection, so answering 'no' to the third, also answer 'no' to the others?

Can't get my head arround the logic of turning this into a poll, that would retain the overall patterns within individuals, unless the options were patterns, ie are you YYY, YYN, YNN, NYY, NNY, NYN, NNN (is that the total number of possibilities, and would most people be able to answer yes or no?).

[Added - on reflection these are not yes/no questions, as I assumed the 'excluded middle'. Rather they are '+' increase, '0' no change and '-' decrease, which means that a poll would have even more options and be very unwieldy. ]
 
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Attempt at a questionnaire:

1. Do inoculations/vaccinations increase your ME symptoms? + 0 -
2. Has your ME increased your susceptibility to other infections? + 0 -
3. Do co-occurring infections increase your ME symptoms? + 0 -

I would answer +++, and wonder if we divide neatly into groups with most answering +++ or ---, or if we all are like most things in ME very variable?

[added - already my own uncertainty about my susceptibility and @ukxmrv experience of infections initially decreasing, but later exacerbating ME symptoms, means this is a gross over simplification.]
 
I have had this effect of feeling better when I've had a cold that was not very severe. As well as suspecting I have ME I also suffer with hypothyroidism. The "feeling better with a cold" effect is often noted on thyroid forums. The theory on those forums that seems to convince some people (including me) is that the increase in body temperature that comes with a cold makes all sorts of biochemical reactions work better. If the body is supposed to work at 37C or thereabouts, then a body with a "normal" temperature of 35.5C is probably not going to work optimally.
 
Sean said:
Should add that I very rarely get colds or flus these days.
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This seems strange to many people!
But I'm more or less the same! In the last 10 years, the only flu-like condition I've experienced was when I tried with low-dose Naltrexone.

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...well... I didn't think of...
PEM is often said to be "flu-like", and of course there is a huge possibility that one classifies one's conditions wrongly. Of course it's possible that I nowadays wrongly categorize virus infections as PEM, just like it's highly possible that I, when still working, wrongly categorized PEM as viroses.
 
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I am definitely on the side of those who seem protected from other infections. Sometimes when there is a bug going round the household I start to feel as though I am getting it, but it never develops and then goes away.

Are there two groups, one who get the new illness but obtain remission from ME, and one who are protected from new bugs?
 
chrisb said:
I am definitely on the side of those who seem protected from other infections. Sometimes when there is a bug going round the household I start to feel as though I am getting it, but it never develops and then goes away.

Are there two groups, one who get the new illness but obtain remission from ME, and one who are protected from new bugs?
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My experience of bugs is like yours. I think I'm developing a bug, but within two days it will just fizzle out without getting anywhere. But during those two days I can sometimes feel fabulous in comparison to my normal state, and with far more energy than normal. This apparent protective effect of my other health conditions (Edit : i.e. not the bug I might be coming down with but everything else) has lasted for many years.

I did get flu earlier this year, quite severely, so I'm not completely protected. I think it might have been the first time I've ever had it. It took about 6 - 8 weeks for me to return to my normal state.
 
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Peter Trewhitt said:
Attempt at a questionnaire:

1. Do inoculations/vaccinations increase your ME symptoms? + 0 -
2. Has your ME increased your susceptibility to other infections? + 0 -
3. Do co-occurring infections increase your ME symptoms? + 0 -

I would answer +++, and wonder if we divide neatly into groups with most answering +++ or ---, or if we all are like most things in ME very variable?

[added - already my own uncertainty about my susceptibility and @ukxmrv experience of infections initially decreasing, but later exacerbating ME symptoms, means this is a gross over simplification.]
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-++ for me
 
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