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ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
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"Outdoor Toxins of Relevance to Mold Illness Patients"

Discussion in 'Addressing Biotoxin, Chemical & Food Sensitivities' started by slayadragon, Apr 30, 2014.

  1. slayadragon

    slayadragon Senior Member

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  2. cigana

    cigana Senior Member

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    There was an interesting reply to this on the Yahoo CFS Destinations message board:

     
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  3. slayadragon

    slayadragon Senior Member

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    >Giles,in his video, mentioned that he always feels better very near the ocean. That happens to me, too. But Lisa wasn’t very clear on this. It would have been helpful if she asked ME/CFS sufferers if they felt better on the ocean (e.g., on a ocean fishing boat) or ocean shore.

    All things being equal, mold avoiders do tend to report feeling significantly better when right on the ocean. I think that this is largely because of the fresh (i.e. mold-free) breezes from the ocean, but there are other possible factors as well. Negative ions may neutralize some of the toxins, for instance. Erik Johnson believes that sand itself -- regardless of whether there is an ocean adjacent -- can have positive benefits.
    On the other hand, oceans do not always feel good to mold avoiders. Times subsequent to sewage dumping in the ocean can feel very bad, for instance. I also have a few reports of marine biotoxin producers (such as "Red Tide") having a particularly negative effect on those who are hyperreactive to mold toxins.
    I do have one report from someone with ME/CFS who says that all his symptoms go away when he spends more than a week at sea in his boat. He believes that it is due to the lack of mold toxins at sea.
    >So, my conclusion was that the “something” in the air that was making me feel bad could be neutralized by an activated carbon filter. I wonder if Lisa has ever examined this? Has anyone else?

    Of course, most mold avoiders have experimented with air filters. That's hard to resist doing, in the hope that they will help.There is no doubt that a new air filter can help, a little, with most kinds of mold issues. If toxic mold is actually growing in the house to any significant extent, the ability of the air purifier to keep up tends to be overwhelmed very quickly though (with the air purifier then becoming the worst item in the house and counterproductive to use). With certain toxins (such as the "Mystery Toxin") an additional problem is that the plastic of the air filter becomes very cross-contaminated, meaning that it will still feel bad even if the filters are replaced.

    As mentioned in the blog, air filters seem to be most appropriate for situations where people are being affected by mild-ish outdoor toxins (such as are described in the sections on agricultural toxins, cyanobacteria toxins and toxins associated with fire retardants). One more note: I once heard from someone living in a very bad environment who bought an air purifier hoping that it would help. She reported that she felt much worse as soon as she turned the air filter on. My guess there is that someone else living in a bad environment had purchased the air filter, tried it out for a while and then returned it. This person returned the air filter too. So imagine if you were the next person who ordered that model of air filter and got that same unit! In general, in my opinion, this is a good example of why to follow your own feelings rather than trusting what things are "supposed to" do.


    >Some days I’m on my computer in the basement all afternoon (e.g., 2 pm to 6pm). Curiously, I’ve noticed a strange pattern where I get into a bout of yawing and lethargy, and it always seems to happen about 5 pm, for about a half-hour to an hour. At first I just ignored it, but then I began to wonder about why it happened then. It occurred to me that evening traffic peaks about then, and the sun shining on vehicle exhaust may activate these exhaust particles which then work their way down to my basement work area, and affect me when I breath them in.

    Interesting hypothesis. :)


    >Assuming this toxin is less than 3 microns in size, and hence can’t be seen by low-cost microscopes, has any research been done to detect other airborne particles? Specifically, I’m thinking of researchers who measure air pollution by devices called gas chromatographs. I believe these devices can measure and detect a whole range of airborne particulate matter. If that’s the case, it would be really interesting to tote one of these things around the country, comparing the airborne particulate matter in all the good and bad locations Lisa describes.

    I would love to do that. Or even better, to do measurements of the same spot (such as the hot springs in Sierraville where I got badly hit) when it is feeling "good" and then when it is feeling "bad." That way, we would be controlling more for whatever random air pollution there might be and looking specifically for what changed when the barometric pressure started to drop and things "got bad."


    >As I thought about all that was said by Lisa and Giles, and combined it with my personal experience, I seem to be coming around to the belief that our ME/CFS symptoms are pretty much controlled by particles in the air that, while often benign, are activated by such things as sunlight, especially sunlight higher up in the atmosphere.

    There is a phenomenon that Erik has called "Sunny Day Slam," where places or objects that have been hit with the Mystery Toxin feel worse when the weather gets nicer and the sun shines on them. I definitely experienced this with my car subsequent to being hit in Sierraville, for instance. The car started to feel better after a while, but then when the temperature went up to 80 degrees and it was sunny, it felt much worse for a period of time. Then it got better again. My guess is that the sun is causing the toxins to evaporate, which temporarily makes being in proximity to the object feel worse.

    >Atmospheric turbulence, such as a windy day or an approaching storm, then brings more of these activated particles down to ground level where we breath them and feel bad.

    That seems a reasonable hypothesis, and I wouldn't rule out its being the case. However, what we have observed happening is that barometric pressure drops prompt the Mystery Toxin to rise up out of the sewers (rather than to fall down from the sky). I have gotten very badly hit walking over storm drains in the Chicago area during winter storms, for example. So our hypothesis is that there is a mold that grows in the sewers that is "programmed" to release its spores only when the barometric pressure is dropping (e.g. so that the spores can take advantage of the water to create new colonies).

    Thanks much for the great comment!

    Best, Lisa
     
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  4. cigana

    cigana Senior Member

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    Thanks Lisa for a very interesting blog!
    I have a few random thoughts on the blog and the comments I posted above.
    • if negative ions are the source of improved health we might be able to use negative ion generators. But personally I doubt this is the case.
    • On the question of what is the toxin, it seems more likely to me it is a biotoxin than something originating high up in the atmosphere. Firstly because the effect can be very localised as in the CFS outbreaks, and I can't imagine atmospheric effects being that localised! Secondly we know from Shoemaker's work that PWC's fail the VCS test which measures biotoxin poisoning and I presume it does not measure the effect of non-biological toxins found high in the atmosphere (but I don't know).
    • I completely agree with the point about us working this out for ourselves! No one seems likely to help us (though of course we should still try to get interest as Lisa is working very hard to do). I think one of the most important things we could do would be to gather epidemiological data - this could be crucial and would not require any equipment. I will make a new post on that idea.
    One thing's for sure...the fact that many PWC's see dramatic improvement simply by moving location is a huge clue that is being consistently ignored by researchers.
    Part of the problem I think lies in the fact that it is not widely enough acknowledged by the patient community. I think the causes of that are mostly the language that is used by "avoiders"...Before I noticed a location effect, I never read threads on biotoxins because I did not see how fish etc was relevant to my particular case. It also seemed like people who had mold problems could tell very easily simply by being in the wrong house, whereas I feel uniformly ill in any house in the UK and many houses abroad (but better in certain locations abroad).
    Then there is the problem that posts like this appear in the "Biotoxin, Chemical and Food Sensitivities section" which may not sound relevant to a lot of people who have no chemical, food or (as far as they are concerned) biotoxin sensitivities.
     
  5. cigana

    cigana Senior Member

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