It certainly is true that the sicker that people are, that trickier it is to stage a recovery using the Locations Effect as a leverage point. This disease is not an allergy! In some ways (as Myhill suggests), it does act like an allergy, but there are other components to it. The toxins and the pathogens that are present in the system have an effect too -- and in those people who are severely ill with ME/CFS, those levels can be extreme.
Someone who has (say) a raging infection with babesia is not going to be magically cured within 24 hours of getting to a good place. Someone with massive amounts of toxins in their brain, causing severe noise/light sensitivities, is not going to feel totally better right away in a good place either. Those problems will need to be reversed before they can experience significant gains.
What mold avoidance does is offer patients a leverage point. For some patients, like Jeri, just moving to a good location is enough. For others, it takes a longer period of time. If people can get their levels of inflammation damped down, then their bodies may be able to start killing off pathogens, either spontaneously or with the help of interventions. In addition, it's seeming clear that when people get to a really good place, their bodies start to detox spontaneously. (On the other hand, ME/CFS sufferers generally have a terrible time detoxing in bad places -- which is why doctors like Paul Cheney advise them to be so very cautious in doing anything to stir it up.)
Erik Johnson, for instance, found that he felt only slightly better when he got to a really good place, camping with all new stuff. It took him four months before he started to experience gains. He credits detox, which he helped along with exercise (which he was able to do to an increasing extent in a good place). Within six months, he went from being able to stand up sporadically (otherwise almost wholly incapacitated) to climbing to the top of Mt. Whitney (14,000+ feet, 6000 feet elevation gain).
One issue that i've been trying to resolve is that people with fibromyalgia/trigger point pain/fascia issues need to get these resolved if they are to benefit much from avoidance. The apparent problem with this condition is that it prevents toxins from moving effectively through the lymph vessels and being removed from the body. If they stay backed up, then unhappy symptoms (brain swelling/fogginess, bodywide pain) can result. I'm thus really interested in things like the Perrin Technique, which apparently results by freeing up these drainage pathways, and neural therapy. Those things don't seem to work when people are getting a lot of exposures, because drainage issues are only one aspect of our problem. In combination with effective avoidance though, they seem to be really effective, at least in a few of the cases that I've seen so far.
So in general, everything has to be lined up just right for people to benefit from the Locations Effect. They need to a) be in a place with good outside air; b) be in a good building or tent; c) not have contaminated belongings with them; d) be in that sort of place for long enough to start to make gains in terms of killing of pathogens and detoxing; and e) resolve whatever lymphatic blockages they may have. Is it any wonder that people don't know about this effect then? The likelihood that this will happen spontaneously is really small. The question is not how frequently it happens spontaneously, but how frequently it happens when it's done systematically. And so far, in the people that I've personally supervised, it's happened a really high percentage of the time. (It would be 100% of the time if I could figure out how to consistently and easily resolve those drainage issues, I think. Unfortunately, the Perrin Technique is not available in the U.S., and neural therapy is not widely available either.)
Insofar as people are living with the possessions that they had in housing with black mold (Stachybotrys) in it, they generally find it very difficult to make any gains, in my observation. Certainly when I go to visit those people, I realize within a couple of minutes that I would relapse completely just living amongst those possessions. People who do the "mold-free sabbatical" always find that they cannot tolerate those sorts of possessions when they come back either.
It's hard to know for sure if a building has mold in it. Some of the newest buildings (at least in the U.S.) are the worst, because they are poorly built and have a lot of hidden mold that cannot be seen or smelled.
It certainly is true that not everyone can pursue mold avoidance or the Locations Effect. However, not everyone can pursue (say) Rituximab or Valcyte either.
In truth, my goal in talking about this is not to get everyone to pursue avoidance. It's to draw attention to the phenomenon, so that researchers will look into it. Perhaps if they did, they would put effort into figuring out how people could start to detox even in a mildly bad place -- thus meaning that people could conceivably start to move toward wellness without doing extreme avoidance. (I tend to think that folks never will be able to get well living in a truly bad place though. These toxins are inherently dangerous!)
Below are a couple of comments from CityChanger on these topics, which he posted on Jamie Deckoff-Jones' blog.
Best, Lisa
*
>My first few forays into the desert with Lisa yielded no results. It was maddening to think that someone could go to the desert and be hiking miles within a week. My severe POTS, severe PEM, and every other classic ME symptoms told me this wouldn't work for me.
>In fact, it does work. It just didn't work overnight. Now I'm driving long distances, hiking, working 40 hours a week from my computer, and I've really only gotten my feet wet with this. Erik Johnson took 6 months to be able to hike long distances, and I've only been out in the desert for 2 weeks (before this, I did moderate avoidance for a 2-3 months by living in my custom-built trailer in big cities)
>It's highly inconvenient to think of biotoxins being the cause of our immune overactivation. Because most of us are not in a position to do jack about it. Whether or not that's the main reason for the resistance to this idea, I'm not sure.
>The bottom line is I have ME and biotoxin avoidance enabled me to hike for 3 days straight with no PEM.
http://www.x-rx.net/blog/2011/12/tunnel-vision.html