The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
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Do all people with CFS commonly experience flu like symptoms

Discussion in 'General ME/CFS Discussion' started by paulie, May 17, 2016.

  1. paulie

    paulie

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    Just wondering. I have read in numerous places that symptoms like sore throats and colds are part of cfs , that people with cfs are prone to getting frequent colds.

    I very rarely get colds. Once a year or maybe less even. I have always been that way. In fact I probably get even less now although I don't spend much time around people (cos I am always in bed). I also get flu jabs as recommended due to my asthma although not every year.

    Does this lack of colds rule me out from having CFS? Are there many here with diagnosed CFS who don't experience flu like symptoms very often?
     
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  2. panckage

    panckage Senior Member

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    Nope its pretty normal. It seems a large number of the PWME have the onset associated with a viral infection (eg. the flu). I believe it is these people who report the viral symptoms. OTOH for a large number of PWME the onset is not associated with a virus. I believe these people don't have any flu type symptoms.

    I am of the latter type. I experience sore throats for months at a time. Then the sore throat disappears for months at a time. I believe this is the only 'viral' symptom I have regularly expeirienced.


    The best thing you can do is read the CFS Canadian Consense Criteria and see if it matches your case:
    http://phoenixrising.me/wp-content/uploads/Canadian-definition.pdf

    The diagnostic criteria begins on page 11.
    We would be happy to answer any questions you have about those criteria :hug:
     
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  3. Sushi

    Sushi Senior Member Albuquerque

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    There also seem to be phases. For many years I got every flu or cold around. For the last ten years or so, I have not had any flus or colds at all.
     
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  4. Comet

    Comet I'm Not Imaginary

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    I rarely have gotten a cold or flu in the many years since I have had ME/CFS. But, I get flu-like symptoms every time I over do it physically or mentally. The more I over do it, the worse the flu-like symptoms. :ill:
     
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  5. Sushi

    Sushi Senior Member Albuquerque

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    Likewise: PEM often includes flu-like symptoms.
     
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  6. whodathunkit

    whodathunkit Senior Member

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    +1
    Haven't had PEM in a long time (knock wood) but when I did get it I always got flu-like symptoms with it. Feeling like flu symptoms might be coming on is still (always) a barometer by which I judge my ability to go forward or if I should take a break.
     
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  7. Forbin

    Forbin Senior Member

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    My impression is that the term "flu-like symptoms" in connection with ME/CFS does not generally refer to respiratory symptoms like coughing, sneezing, congestion or runny nose. Rather, it refers to the "wiped out" feeling you get with the flu that is the result of the immune system going into action against a virus. Low grade fever (< 100 F) seems to be pretty common, but I think it's unusual to have the kind of high fever (over 101 F) that you might expect to see in a typical flu. "Night sweats," which are sometimes a feature of the flu (though maybe only when a high fever "breaks") are reported.

    A semi-respiratory symptom that people do seem to frequently mention is "sore throat" - at least in the first weeks and months of the illness.

    I can't speak for everyone, but this is my general impression.
     
    Last edited: May 17, 2016
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  8. valentinelynx

    valentinelynx Senior Member

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    I agree. You put well what I was going to say. Many people confuse "the flu" with upper respiratory illness in general. However, the flu is characterized by fever, sore throat, muscle aches, profound exhaustion and malaise, and coughing. Colds, on the other hand, are characterized by runny noses, sore throats, cough, and rarely a fever - not the deep exhaustion and malaise of a flu.

    The "flu-like" symptoms of ME/CFS as #Forbin states are, as I understand it, muscle aches, exhaustion, malaise, headache, and sometimes, sore throat.

    I, like many ME/CFS patients, don't get colds except very rarely. Lately, I discovered I have a depressed immune system (low IgG, low B cells, low NK cells and NK function). Thus, I believe that I don't get colds because my immune system does not react to cold viruses - the majority of cold symptoms are due to the immune system attacking the virus. So, I may get infected and never know it. I think this s pretty common in ME/CFS.
     
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  9. Wolfiness

    Wolfiness Activity Level 0

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    My PEM isn't flu-like. It isn't a generalised, central, wiped-out tiredness, and it's very obviously located peripherally, in my muscles. I did have swollen glands and a sore throat for about a year after I got severely ill at 19, but not any more, and I'd already been tired all my life and disablingly tired since at least the age of thirteen. I'm vainly hoping I have a congenital mitochondrial myopathy complicated by acquiring gradual onset ME after glandular fever at 17.…
     
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  10. taniaaust1

    taniaaust1

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    I very rarely pick up colds, Im abnormally not prone to colds so dont have to worry about catching these from people. But a cough and a sore throat and fever are ME symptoms of mine brought on if I start crashing so eg if I over do
     
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  11. Mij

    Mij Senior Member

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    Are they flu symptoms or viral reactivation, I wonder? The last few years my immune system feels as though it's fighting something all the time. My glands have been swollen for the last year, especially after exerting myself.
     
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  12. Bob

    Bob

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    Some forum members say that they never get colds/flu/infections while others say that they succumb very easily. There is a theory that, as part of the illness, some of us have overactive immune systems and others have underactive or misfiring immune systems.

    "Flu-like malaise" is often used to describe the symptoms of ME, but that doesn't refer to a runny nose and sniffles etc. It refers to the general feeling of unwellness that you get with flu where you're exhausted and weak, and your body and brain shut down, you can't think, and you feel generally horrible forcing you to take to your bed.
     
  13. K22

    K22

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    I think the flueyness typically refers to feelings of infection/inflammation eg sore throat, stiff neck, aches, feeling rough, night & day sweats, sometimes low Grade fever etc. It's more than being knocked out, it's feeling unwell in a fluey way as if the bodies poorly & underseige.
    Research publjshed a year or so ago found that 50% of pwCFS reported immune type symptoms, although I think that included broad criteria so it might be more with CCC/ICC ME.
    I think it's a subgroup who have one presentation and a subgroup with another. Who knows. the different groups might be only related in the way rheumatoid arthritis is kinda related but different to osteoarthritis. Sub grouping is so important. As someone with the very immune type illness I read some accounts of ME & likewise can only a little relate as it doesn't sound like my illness. We are lumped together for now, and may share common factors/end result even with a different ongoing disease process.
     
  14. Comet

    Comet I'm Not Imaginary

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    I don't get the swollen glands. But, yes, I wonder if when I over do it, some latent virus gets activated. Or if something makes my immune system kick in for some reason. IDK. But seems like a big puzzle piece.

    Of course, if I mention this to my gp, I get the eye roll or the patronizing 'of course this happens' look.
     
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  15. JaimeS

    JaimeS Senior Member

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    Ditto; there was a thread on this called, I think, "Sick but never sick". There's a significant subset of us who never seem to catch anything at all; or don't react immunologically to what we DO catch.
     
  16. sorin

    sorin Senior Member

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    Not sure, but isn't that HIV positive people do not get any flu/colds for long time? This seems to be another thing in common with "CFS-positive" people...
     
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  17. erin

    erin Senior Member

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    I used to get a lot of flu's or/ and flu like symptoms in the beginning when I contracted m.e.. Now I hardly get anything like that.
     
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  18. sorin

    sorin Senior Member

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    The same with me. And also I do not make fever since a few years ago.
     
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  19. catherinejoy

    catherinejoy

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    Hi everyone, I suffer terribly from the above and the best way I can describe it is an impending feeling of doom. I ache, get hot, confused, my glands sometimes swell, i get a sore throat. This now happens to me almost every 2 weeks like clockwork and it's made me feel like I'm going mad. Sometimes cold and flu tablets or aspirin work, sometimes they don't, and often I'll feel fine in the morning but by lunch time am overcome with it. It often doesn't eventuate into a "cold"that people would classify normally so it's really difficult to explain why I'm sick yet again. I've tried to ignore it, I've succumbed to it, I've tried to treat it, understand it and reduce it but nothing works. I've been told it's actually an overactive immune system that causes these symptoms but short of never leaving the house I don't know how to avoid it. I;m tired of being the "sick girl"and it's really affected work as its not something that's easily explained like a broken leg! Does anyone do anything in particular when it starts for you or do you just ride it out?
     
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  20. taniaaust1

    taniaaust1

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    If that is anything to do with having ME/CFS, and happening so regularly, it probably would be best to see if as far as work goes if you could may be take a couple of days off each week towards the end of the 2 week period to try to avoid this being triggered off eg work only a week and a half out of every 2.

    If this is ME/CFS it could end up getting to the point where that symptom may end up staying with you rather then leaving which would be probably completely disasterous for your work life that happens. My ME/CFS wasnt full time at first and was triggered off regulary with certain things with making a full recovery in between the rounds of it. I really regret not slowing down at that point as maybe it would never have become an ongoing thing.
     
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