Lipkin's Monster ME/CFS Study: Microbes, Immunity & Big Data
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Confusion about ME characteristics

Discussion in 'General ME/CFS Discussion' started by Alexandra90, Jul 14, 2017.

  1. Alexandra90

    Alexandra90

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    Still learning a lot about the disease so I'm grateful for all knowledge :)

    1. I read that the immune system seems to be running high the first years, and then get weakened. What does this mean when it comes to remission (if you are one of the lucky ones I mean)? Any signs that points to this theory of high/low happening?

    2. I also read that ME patients usually don't catch colds and so on because of the immune system working so hard. And that colds are actually a good sign. But at the same time many patients report having frequently infections, viruses and allergies. Some people are always catching colds and so on. If the immune system is on high mode, shouldn't we be more protected from infections and so on?
     
  2. svetoslav80

    svetoslav80 Senior Member

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    The immune system is complex. My non-scientific understanding is that, in CFS, a fraction of it is running high, probably elevating some med indicators that haven't yet been researched. I'm also wondering if that fraction eventually exhausts and is weakened. Probably, I don't know. I think the rest of it works normally though.
    This is too naive to believe. If anyone thinks they can't catch a cold because they have CFS, just stay in icy water for about 20 minutes and then we'll talk again.
     
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  3. Snowdrop

    Snowdrop Rebel without a biscuit

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    The immune signature you are referring to may come from this paper: https://www.mailman.columbia.edu/pu...-evidence-chronic-fatigue-syndrome-biological

    There is no hard and fast rule. Each of us responds a little differently but essentially immune signature high (immune system working hard) and a person will likely not experience the colds and flu that go around. As the immune system becomes exhausted it would be easier to catch colds etc I would think.

    Having said that I've been sick a long time and I feel that I do not get sick as often as my family who bring things home. But also, I feel generally ill all the time anyway. I still do occasionally (I think) catch a virus and feel truly miserable. Why? Hard to say. It's not magic just our bodies trying to constantly adapt and find homeostasis -- the (whatever is causing ME) is not always winning the long term activity of (whatever) can be uneven and not a straight progression with symptoms that are regular and reliable.

    What I'm trying to say by that is that we can learn and know our illness better but there is always a level of uncertainty that requires acceptance.

    I think it is as yet not entirely clear what is happening with all individuals and therefore we (I mean me here) make best guess assumptions as to what is going on but without actual testing to see it's hard to know.

    Ultimately what matters is learning how your own body is responding and learning to do what you can to mitigate the symptoms you experience and to also keep the big picture in mind --nothing we do will cure us -- we rely on medical science for that and in order to get science research attention we need to collectively collaborate and advocate for our health.

    So many cancer survivors go on to live full lives. We need the same for people with ME.
     
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  4. ErdemX

    ErdemX

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    It was very hard for me to believe but I don't catch influenza type infections for 4 years, after having CFS. Before that I had influenza every year at least 2 or 3 times with no exception. The last time I had sore throat, runny nose, coughing and fever was 4 years ago and I had many people with flu around me as before. I am sure I would be sick from staying in icy water but this is not being infected with influenza virus and getting flu. So this can be true for a subset of patients.
     
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  5. Alvin2

    Alvin2 Senior Member

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    Somehow i don't think you will talk again :wide-eyed:
     
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  6. lnester7

    lnester7 Seven

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    My humble opinion after seing different patients results: some have depressed immune systems w specific issues ( some w B cells others T cells other low cd4 vs others low cd8...)
    Some have hyper active while other are unregulated ( so they need inmune modulators) why it is so important to get yours messaused amd address your specific issues ( lyhnphocite subset and a citokine profile test).
    In my particular case I do inmune modulators, I do ok. I struggle with low Nk cell and function. But my inmune issues have decreased considerably!!!!
    In the symptoms flue like everything sending me on overdrive. Still w low NKs!
     
  7. Research 1st

    Research 1st Severe ME, POTS & MCAS.

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    Answer to question 2 - patients who report fewer colds or 'great immune systems'

    Take into consideration a number of factors...

    *Have these people been researched? E.g. To confirm they have a unique anti viral defense mechanism paradoxically found in people who are crippled by overwhelming symptoms? No, no studies have been done.

    *Are people with no colds sick for 1 year, 5 years, 20 years, or 40 years? No studies have been done once more. Logically, the longer you are sick with 'on' immunity, the weaker it becomes if you then lose antibody avidity = immune suppression city as your body 'forgets' to make antibodies for which it is meant to be remembering. This might explain PWME who like myself claim they are infected 24/7, or almost. It took me decades to get like this though, years ago I never had raised glands in my neck unless I did something, and never sneezed each day or had a raised temperature. If anything I had a low temperature. So our bodies change over time. This makes sense immunologically. Again none of us have been researched. What makes sense is chronic immune activation will weaken your immune system and cause inflammation. This ties in with the eventual development of autoimmunity or multiple autoimmune illnesses over time. People with immune and neurological illnesses generally report more colds not less.

    *Are people with no colds housebound? This reduces cross infection from going outside!!!
    *Are people with no colds no longer using public transit/at work/socializing? ditto above!!!
    *Are people with no colds caring for children or near them? Children are riddled with infections.

    *Are people with no colds severely effected or mild/moderate? More severe effected see less people
    hence it's logical they get less colds, even if they were (ironically) immune suppressed.

    *Are people with no colds sick with a CFS type illness or an ME neurological inflammation based illness?
    No test exists, and claims are anecdotal and limited to the internet. No research has found any such finding, in fact the opposite finding of poor NK function etc.

    *Are people with no colds sick with the same illness as others who report the opposite? No one knows.

    All of these factors determine what someone's experience is with ME CFS.

    So we come back to square one as we do with all CFS research:

    Scientists don't know what ME or CFS is, so the patients diagnosed are a mixed bag of unrelated people
    who may or may not have it. Most of them will though but without a test, statistically this will never happen that all people diagnosed turn out to have it.

    *This hugely affects research progress which is why few 'CFS' studies show any consistent findings (bangs head on desk).
    *Governments make sure CFS is treated as fatigue based pseudo mental illness where anyone can join the club.
    *British reduced the CFS criteria to include people with active mental illness (Oxford F48.0 used in the PACE trial), Ergo British 'CFS/ME' research is plagued by state funded professional gangsters who believe all cases of CFS are in the mind and if you don't recover with the fraud based therapies, this is proof you are crazy.

    This will all end in the near future when different organic causes are found in subsets of CFS, or indeed the same underlying cause is found which then branches off into different subsets due to varying factors such as sex and genetics.

    I'm sorry to learn you are new to 'CFS', but you'll find some great people here and some fantastic minds from all sorts of different backgrounds who stick together like glue and know, finally, some real change is happening that will help us all, irrespective if we have or think we have ME, CFS, Chronic Lyme and so forth.
     
    Last edited: Jul 14, 2017
  8. ebethc

    ebethc Senior Member

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    I have low NK cells and function...I get every cold/flu that goes around, and it's very hard for me to get well... My immune system feels like it's in "underdrive"
     
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  9. ebethc

    ebethc Senior Member

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    which immune modulators do you take?
     
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  10. A.B.

    A.B. Senior Member

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    My take

    The authors wrote

    If you are wondering whether a weakened immune system would increase chances of remission, the answers seem to lie in the direction of a no.

    There seems to be patients that get every infection going around and patients that rarely if ever get them despite not being socially isolated. At least according to anecdotes.

    I don't think anyone really understands what the immune system is doing in this illness. We know there are alterations, but they don't add up to a clear picture. In a subgroup at least it's playing some role in maintaining the illness (as per Rituximab results).
     
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  11. Alexandra90

    Alexandra90

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    When we discuss the immune system I come to think about HIV. Before most HIV patients died, but today we have medication to treat it even if we can't cure it. These patients can often live a full life.

    Maybe the ME research will get us there also! I mean - HIV seem to be much more aggressive, but still they have come so far.
     
  12. Alexandra90

    Alexandra90

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    I catch colds and flues but less frequently. Could be because I'm less out in crowds and so on. I still don't have a diagnosis so I'm trying to find more "signs". Maybe this is pointing to something else? The diagnosis I have is still nearly identical to ME. Most doctors in my country don't believe in ME.
     
    Last edited: Jul 14, 2017
  13. Alexandra90

    Alexandra90

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    Do you have problems with infections and allergies?
     
  14. lnester7

    lnester7 Seven

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    Inmunovir, inosine, Nk cell activator ( life extension).
    LDN.
    My situation is a bit peculiar because I cannot tolerate Imunovir so been trying a few ( all my body holes split open mouth, eyes... ( yes down there too!!!) is very hard on me, why the long list. Right now I am trying to balance all 3 to see if I can do less inmunovir.
    Noté: the whole time I was taking fish oil, which apparently lowers Nk cells too, so I just got off of that and see if that helps.
     
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  15. Gingergrrl

    Gingergrrl Senior Member

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    I have not had a cold, flu, or fever in over four years since I got sick with this illness but I suspect it is b/c I am so far on the autoimmune side with MCAS and so many autoantibodies. I go outside almost every day even though I have to use wheelchair. I have been exposed to sick family members who have had colds, flu, bronchitis, strep, etc, in the last four years yet have never caught it from them. People have told me how great this is but I feel that my immune system has given up and can no longer mount a defense to illness.
     
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  16. ebethc

    ebethc Senior Member

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    Inosine did nothing for me... I'm trying mushrooms (Host Defense "Breathe" w chaga, reishi and cordyceps)... At first I felt so much better... and I really could take a deep breath which made me feel so much better... (my sinuses, throat and lungs are perpetually irritated and swollen)...I think I really overdid and pissed off my immune system... I felt like I got hit by a truck... today, I felt like I got hit by a bike, so feeling better after stopping... I read somewhere this week that you should pulse the immunomodulators... So I'm going to try again w this method..

    Re fish oil...what?! Are you sure? where did you read this? DHA really helps w inflammation, plus its supposed to be good for detoxing pollution from brain...ugh

    thanks

    EDIT: DHA is fine...EPA is the one that lowers NK cells

    RESULTS:
    The fatty acid composition of plasma phospholipids changed significantly in the GLA, AA, DHA, and fish oil groups. NK cell activity was not significantly affected by the placebo, ALA, GLA, AA, or DHA treatment. Fish oil caused a significant reduction (mean decline: 48%) in NK cell activity that was fully reversed by 4 wk after supplementation had ceased.

    CONCLUSION:
    A moderate amount of EPA but not of other n-6 or n-3 polyunsaturated fatty acids can decrease NK cell activity in healthy subjects.

    https://www.ncbi.nlm.nih.gov/pubmed/11237929
     
    Last edited: Jul 15, 2017
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  17. Snowdrop

    Snowdrop Rebel without a biscuit

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    From my understanding reading here this is backwards. If you do not catch anything that means your immune system is working overactive. With a normal immune system you would catch something and fight it off. With a weakened immune system you would catch things and they would not resolve.
     
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  18. TrixieStix

    TrixieStix Senior Member

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    the normal rate of influenza frequency is only once every 5 years so not having had the flu in 4 years is normal.
     
  19. ErdemX

    ErdemX

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    I don't know where you get this information but then how do you explain that I was having flu every year a couple of times with no exception until I was 36 years old?

    And between 36-40, zero times.

    It is obvious that there is a significant change of a pattern.

    Meanwhile I have the fatigue of the peak time of a flu almost constantly.
     
  20. TakMak

    TakMak

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    Regarding the amount of times one gets flu, this article appears to shed some light on it:

    http://www.telegraph.co.uk/news/hea...ly-get-flu-twice-a-decade-say-scientists.html

    For me I haven't had flu for some time (probably three times in the 18 years I've had ME). I tend to get flu only when someone else in the house also has it. I don't tend to have so many colds as they do though... but then I'm ill most of the time so I may not even notice a cold.

    The last time I did get flu was about five years ago and that really knocked me back for months.
     

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