The immune system in M.E.

Sadly my amazing energy patch from last week has done a bunk.  I’ve had the landing painted but there is only one coat on the halls walls and the project has been abandoned as I can’t cope.  I did ask the Painting Fairy to finish it off while I slept but did she?  No!  The lazy mare probably sat all night eating Haagen-Dazs and watching Sky telly.  You just can’t get the staff these days 😉

I felt so well last week I did actually wonder if I was coming down with something.  Bizarrely I always feel super well just before I get a cold, or a throat infection, or some other kind of bug.  This is before I have any symptoms of having a bug you understand – I feel as sick as everyone else once the virus takes hold.  Obviously my immune system acts differently when faced with a viral infection and maybe it either switches on correctly and starts to act normally, or diverts from its ME and Mast Cell dysfunction in order to fight the infection, but something definitely changes.

For the 5 days following my inoculations to visit Africa in 1996 I felt almost normal.  Literally overnight I recovered by about 80%.  I had energy, no brain fog, I could sit and stand without wanting to pass out, my muscles stopped hurting, the fluey symptoms disappeared, I slept through the night……..it was nothing short of miraculous.  All that had happened was my immune system was galvanized into action in order to produce antibodies and my ME virtually disappeared.

This, to me, proves that M.E. is a physical disease.  There is nothing psychological about it in any way.  It is not down to eating grains, or salicylates, or gluten, or dairy or any other kind of food because my diet didn’t change one iota.  It’s not down to stress or thyroid or cortisol or any other hormone abnormality.  It’s not a rogue virus like XMRV or borrelia, because if it were having a vaccination wouldn’t alter the situation.  It’s actually not even a neurological disease, despite the WHO classification, because my neurological status hadn’t changed.  It’s a primary immune disorder, which affects the brain, nervous system, hormones and other bodily functions: at least that’s been my experience.  There’s a reason the majority of people go down with M.E. following vaccination or some kind of infection in which only the immune system is involved (as you know, I personally suspect mast cell activation of some kind as the key).

Post-bug is a whole other kettle of fish.  I’m always really, really ill following any kind of infection and it can take weeks, sometimes months (and in the case of my vaccination-induced meningitis 10 years) to get over the onslaught.  Every time I get a bug I do wonder if this will be the time my immune system will simply go back to normal afterwards, instead of getting stuck back into its M.E. and Mast Cell dysfunction, but to date I’ve not been that lucky.

From what other M.E. sufferers have said to me I think I’m fairly unique in my response to pre-infection and I don’t know anyone else that has this weird ‘normal’ feeling just before they get sick.  The times, like last week, when I have a few exceptionally good days I’m now quite suspicious that I’m about to get some raging infection, so I make the most of feeling amazingly well by doing all the housy jobs that don’t get done any other time!  I’m going to get sick anyway, so I might as well take advantage of the silver lining to the suspected oncoming black cloud 😉 .

Of course, I sometimes forget I also have EDS and that going berserk doing anything physical isn’t something that should ever cross my mind.  It kills my hands.  And my wrists.  And my elbows.  And my shoulders.  And my back.  And my knees.  And my ankles.  And especially my neck.  The next time I have a good patch and mention getting out of my pyjamas and into normal gear to do something round the house someone feel free to tie me to a tree until I’m back to being knackered!

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10 thoughts on “The immune system in M.E.

  1. Sherry

    Hey there… just dropping a quick note to say I also feel “better” just before and sometimes even during a cold. Cheers, Sherry

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  2. E. Milo

    I don’t know if I told you- I came down with ME a week after the flu vaccination. I had a decade previous of idiopathic anaphylaxis, dysmenorrhea, vasovagal syncope, angioedema and Grave’s disease… but I ignored all that. I blame the vaccination for this life.
    Oh, and I haven’t had a cold or flu since ME; it’s built up into this big fear. Knock on wood.

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    1. bertieandme Post author

      There definitely seems to be two camps when it comes to ME: those who never get viruses and those who catch everything going, despite never leaving the house. When I was really ill I was in the latter category (one winter I got 9 colds including 2 different cold viruses at the same time!).

      Although I had ME before my Africa inoculations it was definitely the vaccines which made me severely affected. I will never, ever have another vaccination in my life (of course I now know that vaccines are mast cell de-granulators). x

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      1. E. Milo

        I will never, ever have another vaccination, either. I got everything going- a bunch when I went to Central America, the Hepatitis series, the chicken pox series, tetanus and flu jabs and on and on. This was all in my 20s and 30s. I thought I was protecting myself, I thought I was invincible. And how much did mast cells play a part in everything? Agh! We need time machines.

        Sorry you had to deal with so many illnesses on top of illnesses. Your survival and thrive-al all these years is so inspiring to me. 🙂

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        1. bertieandme Post author

          Awww, thanks for that 🙂 I feel like a grumpy old git most of the time, but if you think I’m inspiring I’ll take it lol! Hope you’re doing as well as possible today x

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    1. bertieandme Post author

      Ew. Ewwwww! But fascinating!! Strangely enough I have a hot bath nearly every day, sometimes twice a day. It’s the only thing which helps my pain levels. I’ve always thought it odd, because most people with POTS and MCAD say having a hot bath makes them feel dreadful, whereas it’s one of the few things which helps me (although the heat does bring me out in an itchy rash). I’d rather lie in a nice bath than swallow worms that’s for sure 😉

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  3. Gem

    Hiya,
    Hope that you’re feeling a bit better 🙂 I don’t get a period of feeling better before a virus but I do often get a very strong depression before a virus hits and that’s my first sign that something is wrong. This has happened to me time and time again, I will feel very unlike myself and then it passes once the virus has gone. I wish I understood what is going on with our bodies!
    x

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    1. bertieandme Post author

      How weird! I just soooo wish some researcher was looking at all this stuff, instead of spending millions on bloody CBT or Graded Exercise in “CFS” *big sigh*. I currently feel tantalizingly close to piecing everything together, but obviously I’m no doctor or scientist so am not clever or informed enough to work it out – but I just know the answer to M.E. is out there! x

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      1. Gem

        Totally agree – I think the ideal would be informed m.e patients working closely with scientists and then progress could be made! I think inflammatory cytokines might explain the depression in me as that is the first step in an immune response to a virus and can cause depression, I don’t know if it would explain a sort of geeing up of your system or not? Maybe?
        We should have been scientists! Maybe it’s not too late to learn……!

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