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 you think you were born to get ill

Discussion in 'General ME/CFS Discussion' started by digital dog, Oct 21, 2015.

  1. digital dog

    digital dog Senior Member

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    I believe I was born to get this condition. I don't mean this in any religious/spiritual sense but in the sense that I have a genetic vulnerability to react inappropriately to drugs, inoculations, foods, viruses, parasites etc.

    Why is it that in the ME outbreaks (Royal free, Lake Tahou) some people got sick and other people didn't? Surely there is a vulnerability or susceptibility to this condition?

    I personally think that we would have got CFS/ME regardless of how we lived our lives and that there was very little we could have done about it except delay it for years, decades.

    Again, I hope I havent offended anyone with this thread.
     
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  2. Antares in NYC

    Antares in NYC Senior Member

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    Nope. I disagree (and no offense taken, my dear).
    I was perfectly healthy until that very dreadful "flu-like" onset that left me like this over 16 years ago. Never experienced anything like this before. Nobody in my family has anything remotely similar to this.

    My case may be different to some other folks in these forums since my "double onset" came with two infections: first I got Lyme (with bullseye rash and all), and a few months later I got a severe case of EBV mono (so bad I was hospitalized for three days at MGH). That combo left me bedridden for several months. I slowly recovered to about 70% with antibiotics, but slowly decayed to where I am today.

    In my opinion, ME/CFS is primarily a disorder of the immune system that could be caused by a range of different pathogens, particularly those bugs that have evolved sophisticated immune evasion strategies (coincidentally, both Lyme and EBV have been proven to trick or disable your defenses for their survival).

    Nothing in my experience told me that getting this horrible condition was in my destiny.

    I may be wrong, by that's just my two cents.
     
    Last edited: Oct 21, 2015
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  3. digital dog

    digital dog Senior Member

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    Im so sorry you've been ill with Lyme, EBV and now ME.
    I just wonder why so many people get lyme, EBV and the like but do not go on to get ME.
    I was fighting fit as a child but after an infection I got ill. Why me and not all the other people who get flu?
    Just out of interest do you think the lyme caused you to be vulnerable to EBV?
    I too think ME is an immune system disorder.
     
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  4. Antares in NYC

    Antares in NYC Senior Member

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    Digital Dog, I'm sure there's some genetic marker that may make some of us more susceptible to developing ME/CFS; I don't discard that possibility.
    About 20 to 25% of people that get Lyme never recover, but others bounce right back. Most people that get EBV mono do recover, but a small percentage go on to develop chronic debilitating conditions. Same with other pathogens.

    I have read papers posing theories related to certain genetic markers, like HLA gene alleles, or deficiencies in IgG subclasses.

    Of course, given the crappy research funding that new illnesses like ME/CFS and Lyme get, it's difficult to tell for sure.
     
    Last edited: Oct 21, 2015
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  5. digital dog

    digital dog Senior Member

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    Thanks for the info Antares. Yes, I believe if we had more research then we could all draw a line under this sorry state.
    Hopefully John Caudwell will be funding a lot of lyme research which may well draw light on CFS/ME. He has already acknowledged overlap between the two conditions.
     
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  6. Antares in NYC

    Antares in NYC Senior Member

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    Unfortunately there's a lot of overlap between the two conditions indeed. Hope that all the media buzz recently on both Lyme and ME/CFS leads to more research funding and a better understanding of what drives this terrible condition.
     
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  7. jess100

    jess100 Senior Member

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    That's an interesting thought, and it might be true. But for me I want to also consider things like pesticides, processed foods, herbicides, overuse of antibiotics, pollution, etc. that might play into any existing vulnerability -things that might turn on or off gene expression.
    For example just read this: Pesticides and herbicides control pests and weeds, but new analysis suggests they also pose a significant threat to the health of young children. Host Steve Curwood and the study’s senior author, Chensheng Lu of the Harvard School of Public Health, report that exposures can increase children’s risk for leukemia, lymphoma and brain tumors.
    I have also read that the artificial dyes in our clothes (such as blue jeans) is potentially cancer causing. I read this in an article (later a book) about industrial waste.

    I can't say for certain that GMOs or chemicals or additives or pesticides cause this illness or any other illness. But I also don't know for sure that they don't. It just seems prudent to avoid this stuff until I have more solid information.

    I'm old enough to remember when large doses of X-rays were considered safe, and jeeps sprayed DDT in our neighborhood while we ran through the fog it created-breathing DDT every few weeks each summer. My father sprayed DDT inside the house, until we went to the "Shell-No pest strips" that hung everywhere-(they were later taken off the market and now are shipped to Mexico without warning labels). The government said these things were safe. Or at a minimum didn't say, "we don't know that they are safe". Since no one had actual proof yet that they weren't safe we as a country erred on the side of them being safe. I think this is a backwards approach.

    And at one time we were told arsenic at 10 parts per billion was OK. And now? levels as low as 0.00017 mg/L (0.17 parts per billion) over long periods of time can lead to arsenicosis.[15][16]

    It's only logical to assume that what we are NOW being told is safe, actually isn't.

    And so, because I can't control my genes I'd like to do what I can in this area. Avoiding as many of these things that I can.

    Just some (unprocessed) food for thought.
     
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  8. ahmo

    ahmo Senior Member

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    This is true of me, I believe. From teen age I suffered one ailment after another: thyroid, asthma, low back flares... I repeatedly crashed under stress, when crash meant asthma (adult-onset, lasted 7 years) or low back flare, or later frozen shoulder(s). There was a viral incident 4 years before my final collapse into ME. The amount of improvement I've had by getting the correct nutrients, and eliminating the gluten/dairy, indicate to me that I've had life-long deficiencies. And poor ability to detox, as my snps indicate. My great good fortune was to have been born to a non-smoking mother, and fed real food in a clean environment.
     
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  9. Snow Leopard

    Snow Leopard Hibernating

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    No.
     
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  10. Gingergrrl

    Gingergrrl Senior Member

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    Interesting question and I was just discussing this last night. I don't know the answer but I do believe that I was genetically pre-disposed to react to medications and environmental triggers that do not affect other people and that I am the "canary in the coal mine" so to speak. I can think of times that I would enter a room and smell gas (from kitchen stove- I think it has a different term in the UK) and no one could smell it but me but then 20-30 min later others could smell it.

    I had severe neurotoxic reaction to Levaquin that is allegedly less that 1% of people (I don't believe the stats are really that low) but it happened to me. Then I got severe mono/EBV following a minor surgery. Then I moved into a condo that was severely infested with mold (walls, pipes and finally dispersed by A/C system) so it seems my destiny to have one trigger after another until my system couldn't take it anymore.

    I know others had Lyme or vaccine triggers (which I didn't have) but the end results seems the same. Was it my destiny? I don't know but it sure seems that way and if I didn't have my particular set of triggers, I would have had others that probably would have led me to the same place. I am a spiritual person so I tried to sort it out within that context.
     
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  11. whodathunkit

    whodathunkit Senior Member

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    I think a lot of the propensity to get sick has to do with how many and how severe your mutations are, and also your environment and nutritional status.

    So even someone with a bunch of bad mutations might be able to stay in good health as long as they live in a clean environment, maintain proper nutitional status, and manage to avoid some crucial viral infections, thereby keeping their snps from being expressed.

    I don't believe the vast majority of people are necessarily born to get ill, but modern lifestyle makes it a lot tougher for even people without a bagful of snps to be healthy.

    Basically the same thing everyone else is saying, I guess.
     
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  12. msf

    msf Senior Member

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    Well, my father had it, and now I have it, so I would say I was born with a fair chance of getting it - but if I´d known it was hereditary I could have taken measures that would have made me less likely to get it. I think in the future there will be genetic therapy available, but even before that it should be possible to work out what the main risks are and live a life that allows for that.

    Of course, this only works if ME is caused by specific pathogens, and not by any pathogen or a stochastic immune process, but in my case at least I´m fairly certain it is.
     
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  13. Kathevans

    Kathevans Senior Member

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    Sometimes I think it's a case of if we only knew then what we know now.

    Given my snps and a clear B12 deficiency, I might not have had all my wisdom teeth pulled with nitric oxide when I was about 19, wiping out whatever B12 stores I had and setting me up for many B-12 and folate problems. After that I had more muscle spasms, tendonitis, fascitis, anxiety. I might not have taken tetracycline for two years for my skin, or 2 years of Bactrim for a tendency toward bladder infections, or 8 years of zantac for what I was told then was too much stomach acid, when in fact, it was probably too little.

    Given my mother was prescribed DES the entire 8 months she was pregnant with me, and given I have a small, irregular shaped uterus (was lucky to have one pregnancy and one live premature birth) and have had irregular cervical cells, this and the above has made me more than a little dubious about anything allopathic doctors suggest I do.

    Can you blame me?! :eek:

    Chronic onset, which presented primarily as pem, muscle wasting, little sores in my mouth, rashes and sleep issues, developed within six months of another course of antibiotics for an infection on my foot.
     
    Last edited: Oct 21, 2015
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  14. Antares in NYC

    Antares in NYC Senior Member

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    Interesting that you mention that; in the last 16 years I have lived in 4 different apartments, two different cities. Out of those four apartments, two were water-damaged and had problems with mold.
     
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  15. Esther12

    Esther12 Senior Member

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    I was born to party.
     
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  16. Gingergrrl

    Gingergrrl Senior Member

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    @katheveans This is definitely the case for me and I suppose for everyone on PR. If I could go back in time, I would never, ever have taken the Levaquin and asked for an alternative. I would not have had the surgery (which ultimately didn't serve the purpose I had hoped it would) and without the surgery I do not believe I would have gotten mono (although I cannot prove this 100%.) And I definitely would not have moved into the moldy condo. Had I not lived in that condo, I do not believe I would have had the viruses re-activate, I would not have gotten severe MCAS & allergic reactions, and I would not have suffered pulmonary inflammation and breathing problems & dysautonomia leading to using a wheelchair almost 24/7.
     
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  17. Gingergrrl

    Gingergrrl Senior Member

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    @Antares in NYC Mold and it's mycotoxins are a huge trigger, as you probably already know, so I would not minimize the role they may have played in your illness (in case you were.)
     
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  18. Snow Leopard

    Snow Leopard Hibernating

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    In a pink/rainbow onesie!
     
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  19. caledonia

    caledonia

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    I agree that there is a genetic susceptibility (given certain environmental conditions), but I disagree that you would be doomed to develop ME regardless of circumstances. If you didn't encounter the environmental conditions, you would remain healthy.

    As far as people being apparently healthy, then boom all of sudden they're very sick - the reason this happens is that the body does something called masking. The disease was developing all along but didn't appear until one last trigger was the straw that broke the camel's back. The trigger may or may not be the cause.

    It is my understanding that people can have Lyme in them, but not have symptoms until many years later. So the same sort of thing would apply. It would be interesting to see if there are people who have Lyme but never develop symptoms.
     
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  20. Gingergrrl

    Gingergrrl Senior Member

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    I believe this, too, and that the final trigger for me was mold/mycotoxins and this was the straw that broke the camels back as you said.
     

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