Hi Blue,
The following are just my opinions.
A high percentage of ME/CFS patients report that their illness began as a result of a toxic mold exposure. Considering that most people who are exposed to toxic mold don't know it (I lived in a house with that problem for 12 years before I found out), the fact that so many people with this disease are aware of their exposures says something.
No one gets better from ME/CFS just from moving out of a moldy residence. By that time, the system is primed to respond to such tiny amounts of mold toxin that it's unlikely they will get free by accident.
Most people bring their contaminated stuff along. A high percentage of buildings are not "good enough" for people to get clear. And biotoxins in the outside air can be the biggest problem of all.
A lot of people (myself included) start to respond to mold long before they get full-fledged ME/CFS. It's possible that those precursor signs may be caused by something else too.
Whether toxic mold exposure is necessary to get ME/CFS, I don't know. (Clearly it's not sufficient, since other factors -- genetic, pathogen, other toxins -- also may be necessary to get it.) An awfully lot of people do have it, on the front end. And once people have ME/CFS, an awfully lot of them are hyperreactive to small amounts of the stuff.
We need studies to find out more.
If you look on
www.biotoxins.info, you can get the lab sheet that Shoemaker uses. It goes through Lab Corp. (A couple of the tests are supposed to go to National Jewish in Denver, but Lab Corp often messes this part up.) Many of us have had doctors other than Shoemaker order the tests, but it often has taken some convincing.
Similarly, many people have gotten doctors to order csm. This is known to remove various toxins (not just mold toxin) from the body, so some doctors are willing to prescribe it even if they know little about mold.
I've been doing interviews with people who have recovered from severe, long-time ME/CFS. (There are very few of us out there.) There's a post about that somewhere on this board. Basically, the people who have recovered 1) are living in buildings that are excellent with regard to toxic mold (or in other residences that are excellent), 2) are living in places with at least decent outside air, 3) either got rid of all their contaminated belongings or waited five years after moving to a good residence for them to calm down. Most of them know that they are reactive to toxic mold and stay out of bad buildings.
Detox, antivirals and antibiotics seem to decrease mold reactivity. However, it seems to be impossible to pursue any of these effectively if the environment isn't really good. They all take a long time too (3-5 years, depending on the degree of exposure/illness) to really kick in.
Again, these are just my beliefs. Research needs to be done to see if they're correct.
Best, Lisa
