Here are a couple of comments.
1. For at least some (and possibly all) patients, ME/CFS involves a hyperreactivity to even infinitesimal amounts of toxic mold and other biotoxins.
Certainly, it seems like if you remove all the growing mold from your home and if you don't have any mold growth on your possessions, that should be enough -- within what anyone should be reasonably expected to be able to do -- with regard to getting better.
That is not the experience of people who have successfully addressed the problem. I've encountered dozens of people in person and on various boards who state that once they get clear, they are made sick by contaminated possessions.
No one says that anybody has to get rid of exposed possessions or that it's reasonable to do so. We're only saying that insofar as severely ill individuals keep those possessions, they should not be surprised if they don't make improvements.
2. Insofar as people cannot remediate contaminated possessions, it is even more unlikely that they will be able to remediate a contaminated house.
The whole reason that toxic mold makes poisons is so that it can coat all the surfaces of the dwelling with it. As a result, other species of mold will be less likely to grow, and the toxic varieties (e.g. Stachybotrys) will be able to spread more freely.
Even if you remove all the colonies in the house, the toxins will still be there. They will keep other species of mold from growing, and it will keep Moldies from being able to live in the house without getting sick.
3. Ritchie Shoemaker is a brilliant man (I would argue a true genius) who has done a great service to the ME/CFS community by providing us information through his research.
His work suggests very strongly that toxic mold plays a role in this illness, and defines some of the ways that it has an effect on us.
However, I have yet to encounter one ME/CFS patient who has gotten anywhere close to well as a result of following his protocols. Insofar as anyone else has heard of any, please let me know since I would like to include them in the project that Dr. Keith Berndtson and I are doing interviewing people who have recovered from this disease.
Shoemaker has been successful at treating simple mold illness, which is far less complicated than ME/CFS. While he has some ideas about treatments that might be helpful for ME/CFS, I've yet to see any of them succeed.
Erik Johnson's protocols, on the other hand, have allowed a great many people to achieve substantial improvements or get to close to full wellness. Certainly, following them is not a reasonable thing to do. I'm not suggesting that anyone do them. I'm just presenting the information as an option.
On the other hand, I do strongly feel that people who are living in a bad environment should move or remediate even if they choose not to pursue anything more "extreme." This may prevent further declines or allow other treatments more of a chance to work. In this disease, even small declines in functioning can be catastrophic, and small improvements can make a big difference in quality of life.
4. Avoidance does not require camping!
Erik's suggestion with the camping is to get people unmasked from the mold, so that they could prove to themselves that it was having an effect on them and so that they could better find it when they return to civilization. He did not encourage anyone to go camping permanently. I'm not suggesting it either.
If people cannot or do not want to go camping at all, I suggest that -- as Janis has started to do -- they try different environments to see how they feel in them. People with ME/CFS (at least on this board) tend to be extremely good at discerning the effects that various treatments (supplements, drugs, avoidance of foods, pacing, saunas, etc.) have on their health. It's my observation that they quickly become just as good at evaluating their environments, regardless of whether they do the desert "sabbatical." However, in order to do this, they need to start paying attention and trying out various environments. (And, per above, bringing contaminated possessions along will make the differences between various environments much less obvious.)
5. The presence or absence of odor is not a good predictor of whether toxic mold is present in an environment.
Some of the worst buildings of all have no discernible odors. Some buildings with strong mold odors do not have any of the toxic variety.
6. Shoemaker talks about the connection between gluten and mold in his books.
Mold illness frequently causes people to become reactive to gluten. Even without avoidance of mold toxins, gluten avoidance can give some benefits.
It would be interesting to find out what percentage of the people who go to alternative practitioners with "minor" problems (ADHD, fatigue, mood swings, lack of concentration) and benefit from addressing candida and gluten are living or working in moldy buildings.
Shoemaker suggests that for many of these people, the gluten reactivity fades after an extended time in a good environment.
That's what many people pursuing extreme avoidance have found. Six months tends to be the usual amount.
Of course, some people have celiac problems and need to avoid gluten for reasons that have nothing to do with mold. And some people may choose to avoid wheat even though successfully practicing avoidance (for instance, to keep a handle on candida).
There is a definite connection though.
7. Deciding who to trust is an important factor in whether people make improvements.
Lots of people have tried to address mold and not gotten better. Others who have tried to address it have gotten better.
My inclination is to follow the lead of those people who have gotten better from addressing it. My early decision was to follow Erik's lead, and I've yet to find anything that he's said that's led me astray.
Erik started talking about the role of toxic mold in the disease that later became known as CFS (ME) in 1980, before there were any articles about either CFS or toxic mold in buildings in the literature. He obtained improvements as a result of avoiding it almost immediately after becoming sick with the illness himself in 1985. In 1998, before toxic mold was recognized widely as a factor in human illness and when only a few papers had been written about it, he developed his extreme avoidance approach and shortly therafter shared it with other patients on various boards. Since then, large numbers of patients have implemented the techniques to various extents, and gotten various degrees of improvements. It's my observation that people who decline to follow the basic principles (e.g. choosing not to discard objects that are not overtly moldy or continuing to spend part of their time in moldy buildings or trailers even when in the desert) do not achieve very good results with it.
Back when Erik first started talking about mold, everybody denied it could be a problem beyond an allergen. Even ten years ago, the journals were full of articles stating that there was "no evidence" that it was a problem. Now there are hundreds of articles that show that, um, yes, it's a problem after all.
There are still information pieces available that suggest that it's not a problem. That's not consistent with the academic literature though.
Whether scrupulous mold avoidance would help all ME/CFS sufferers, I don't know. We need more study into this. The main reason that I started writing about mold on this board was not to persuade people to try avoidance, but to try to get research into the phenomenon.
I've yet to hear of any treatment for ME/CFS that has helped everyone who's tried it. With this illness, even moderate improvement amongst a fraction of patients is usually considered a big success.
That being said, I've yet to hear of anyone who's tried Erik's approach according to his instructions -- including getting unmasked in a really good place -- who's not experienced substantial improvements.
But again, it only works when you follow the instructions. That's part of why I spent so much time compiling them into a book.
And again, I'm not promising anything or suggesting that anybody do anything. I'm just providing information, because it seems to me that it's the right thing to do.
Best, Lisa
