Think mold might be your problem? Here’s some practical advice.

My mold sabbatical to Death Valley was the beginning of my experience with extreme mold avoidance, and even now,  if I get a nasty series of exposures, time in the wilderness can be critical tool to give my body a break and allow it to recover. Our van, Gracie makes that far, far easier. (John came up with that wonderful name, because she's gray and because she's a bit of grace in our lives. Maxine, our Vanagon who stars in the book, suffered a sad death.) While that necessity can be highly inconvenient, it's hard to complain about spending time in a place like this!

My mold sabbatical to Death Valley was the beginning of my experience with extreme mold avoidance, and even now,  if I get a nasty series of exposures, time in the wilderness can be critical tool to give my body a break and allow it to recover. Our van, Gracie makes that far, far easier. (John came up with that wonderful name, because she's gray and because she's a bit of grace in our lives. Maxine, our Vanagon who stars in the book, suffered a sad death.)

While that necessity can be highly inconvenient, it's hard to complain about spending time in a place like this!

In writing Through the Shadowlands, my goal was not to evangelize for extreme mold avoidance. It was incredibly helpful to me, and it’s incredibly helpful for some other people, but it’s only one tool among many. And frankly, in many ways, it sucks – it’s expensive, it requires an extraordinary level of effort, and it can be unbelievably stressful and scary. I hope the time comes when no one has to do this because we have far better treatment options.

But that time hasn’t come yet for many of us, and I regularly hear from people who are inspired by my book to try a mold sabbatical. So I wanted to offer some practical advice, in case you’re thinking of giving it a shot.

 

1.     Think hard about whether you really want to do this

Honestly, it worries me that people will read my book and assume that they'll have the same experience I did if they head for the desert for a couple of weeks. Looking around at other mold avoiders, people seem to have a really wide range of results — including getting stuck in severe hypersensitivity and being unable to live indoors. So please, think really hard before you take this on.

Consider seeing a doctor who specializes in mold first. A crew of dedicated doctors is working to treat folks like us, and some people get good results following their treatments while doing more moderate levels of avoidance. The Shoemaker Protocol is great for some of us, and Shoemaker's panel of laboratory tests, which is generally covered by insurance, can be an excellent place to start in figuring out if mold is part of the picture for you. And of course, I'm assuming you've been getting decent medical care overall, at a minimum to make sure you're not dealing with some different disease entirely.

I'd also recommend doing a bunch of reading. ParadigmChange.me is a pretty incredible resource, and they offer the book A Beginner's Guide to Mold Avoidance for free if you sign up for their newsletter. Sara Riley Mattson wrote two wonderful books, Camp Like A Girl and Migraine: Finding My Own Way Out, which offer a lot of information about mold illness and mold sabbaticals.

One of the key considerations is what you'll do if you can't live in your home after the mold sabbatical. Your own home may well make you far, far sicker after the sabbatical than before, so don't go until you have at least a vague plan about what you'll do next.

 

2.     If you do decide to do a mold sabbatical, get help

You are making an enormous investment in trying this, and you want to do so as wisely as possible. You’re going to have to make a thousand decisions along the way, and if you choose wrong, you may not get any useful information from your experiment at all. The people who know most about how to make those decisions are those who have been successful with extreme mold avoidance — so learn from them.

There is an ever-changing ecosystem of Facebook groups focusing on extreme mold avoidance, but right now, I’d point you to Mold and Chemical Sensitivity Lifestyle and Mold Avoiders on the Road to Recovery Camping and RVing.

I wrote a piece for Slate with concrete advice about navigating patient communities, so I’d suggest you read that first. There is an enormous amount of experience and wisdom in these groups, but you also have to take the things you read in them with a big ol' dose of salt. The experiences of people with this illness vary so enormously, and we each react to different things. It’s so, so easy to overgeneralize from one person’s experience. And if you assume you'll react to everything that anyone else has reacted to — well, you'll be left convinced that nowhere on earth will be safe for you. Reach out to the people who seem like-minded and have dealt with similar issues, and ignore the folks who make you uneasy.

And if you find yourself getting bummed out or frightened or overwhelmed, then stop. Step away from the computer, take a deep breath, get some fresh air.

Sometimes, there are successful extreme mold avoiders who work as paid health coaches. Unfortunately, right at the moment, I don't have anyone to recommend, but it might be worth asking around on those groups. If you can find a good coach, you'll save yourself a lot of work and a lot of mistakes. Just make sure it's someone you have confidence in and who has gotten good results for themselves and others.

 

3.    Consider brain retraining First

One of the awful parts of extreme mold avoidance is that pretty much everyone who does it goes through a period of hypersensitivity, where unbelievably small quantities of mold cause devastating impacts. That’s partly valuable – it shows that mold is indeed contributing to your health problems, and it teaches you when you need to get the hell out of a building. But it also can be devastatingly difficult to deal with.

Different people have different ideas about what’s going on with hypersensitivity. Part of it seems to be related to the process of detox – our bodies absorb mycotoxins and other baddies in our tissues, and when we get out of a toxic environment, all that stuff comes oozing out of our bodies. When that load goes down sufficiently, our resiliency goes up.

But part of it also seems to be related to our brains. Extreme mold avoidance trains our brains to react: We learn to tune into tiny sensations indicating exposure, we recognize that that means we need to get the hell out, and then we go through these elaborate rituals of decontamination, etc. Each time we do that, it’s like we’re digging a groove in our brains, reinforcing a neural pathway of reactivity. It's a different thing from conscious anxiety, so it can be an issue even if you're the most chill of humans.

In Through the Shadowlands, I describe how I developed my own methods of un-digging that groove. I worked on that after I’d been avoiding mold for quite some time. But some patients who have moved to reasonably non-moldy houses have had enormous improvements from this approach alone, without having to go through the whole huge rigamarole of extreme mold avoidance. And it's relatively inexpensive and low-risk, so it may be worth trying first.

There are formal programs that have been developed for this that have been very useful for some patients. The two most well-known are the Gupta Programme and the Dynamic Neural Retraining System. There's also a new one called CFS Unravelled. All are video programs that cost a few hundred bucks and come with a money-back guarantee. It’s worth looking at both to see which you like better.

Now I’ll be honest: These programs weren't workable for me. In general, I'm not very good with following someone else's program of any sort, and I found many of the specifics of how these programs implemented their ideas grating. I also think the claims of all these programs are far too strong. But I did use them as a spur for my own thinking, and I customized their ideas to fit my own personality and ways of thinking about my illness.  

The particular techniques I created for myself are only directly applicable once you've started avoidance, but with some thought, you might well be able to develop an approach that will work even before you've learned to recognize symptoms of exposure. The place I’d recommend starting with this (other than reading my book!) is to read Norman Doidge’s The Brain That Changes Itself. It’s very inspiring and will probably get your thoughts moving.

But do check out Gupta and DNRS first. It's just so much easier to follow a predesigned program than to invent one for yourself, and I know a number of people whose lives have been changed by them.

And, on the other side, if you hate the whole idea of brain retraining, then ignore this! Mold avoidance will help you without brain retraining too.

If brain retraining doesn't bring you dramatic results on its own, it makes sense to set it aside during a mold sabbatical and while you're learning how to do avoidance. After all, during that period, you're trying to learn to detect the stuff you really need to get away from. You need your body to react. You can give brain retraining a try again later, when you know your level of exposure is very low and you need your reactions to be softer.

 

4.     Trust your intuition

The truth is that I have no idea if a mold sabbatical is a good idea for you, and really, nobody else knows either. Somehow, you're going to have to make a decision in the context of very limited information. In my experience, doing that well requires relying on intuition.

And that's where I hope Through the Shadowlands can provide direct guidance. While I didn't write the book to evangelize for extreme mold avoidance, I did want to evangelize for combining scientific skepticism with faith in intuition and a determination to turn this crappy experience of being sick into something meaningful. 

So as you consider embarking on a mold sabbatical, start by getting really grounded in yourself. Do whatever works for you to feel in touch with your intuition. As you learn more and plan your trip, keep coming back to that calm, grounded place and make sure that exploring extreme mold avoidance feels right and whole to you. If it starts making you crazy, take a big step back.

And most of all, whether you choose to pursue extreme mold avoidance or not, craft the story you’re telling yourself about this experience into one that feels meaningful and powerful, one in which you’re an adventurer rather than a victim, one that you can enter whole-heartedly even if it’s not the story you’d choose for your life.

 

I wish you the very best of luck. Even if I don’t know you at all, I’ll be cheering you on from the sidelines.


If you’ve found this post useful, here are some steps you can take to learn more about my work and to help me out too:

1.     Sign up for my email newsletter and I’ll let you know about my future writing, plus I'll send you a copy of the prologue of Through the Shadowlands.

2.     Follow me on Facebook. My posts there are far more frequent than my newsletters – but be sure to get my newsletter too, because Facebook won’t show you all my posts. Subscribing to the newsletter will ensure that you’ll hear about the really important stuff. 

3.     Read (or listen to) Through the Shadowlands.

4.     Spread the word. Please post a review on Amazon and Goodreads — having lots of five-star reviews really helps. And tell your friends, both about the book and about my work more generally.

 

The first final copy of my book

On my way to the March for Science, I picked up my mail. And look what I found: the first final copy of the book!

 

I had to restrain myself from showing it to every stranger I interacted with. (I failed a couple of times, and the people smiled and politely admired it.)


As I thumbed through it, seeing this brought tears to my eyes:

I am wildly blessed.

In-depth interview in American Scientist

I'm utterly delighted with the interview American Scientist did with me, "An Illness Observed." We covered the issues you might expect in a science magazine—the politics of science, the flaws in some ME/CFS research, the value of patient experience even when it lacks a scientific foundation—but we also discussed how mathematics guided my approach to my illness, how I drew on my spirituality to find a way forward, and even the Jungian notion of shadow. Here's a bit I particularly enjoyed discussing:

I was trained as a mathematician at the Massachusetts Institute of Technology, and although I left research, doing math has profoundly shaped my way of viewing the world. The rigor and careful logic of mathematics was an obvious tool to apply to my illness. I carefully observed my own condition, noting what seemed to make things better or worse, remaining skeptical of my own pet theories, playing out the likely consequences of my ideas.

But my mathematical training affected my approach in a less obvious way, too. The process of solving a deep math problem is highly intuitive. When you write out your proof at the end, you spell out the logical connections, but that’s not the process of discovery. Instead, you in large part feel your way to the new idea, based on an intuition you’ve built over years. By working on examples and just learning lots of different kinds of mathematics, you develop a sense of how things tend to behave. You get a good sense of what should be true, as if you’re perceiving a kind of invisible structure within mathematics itself, and you can then feel your way along these great beams and columns to find your way to rooms that have never been visited before.

The thrill of interweaving logic and intuition to navigate a hidden realm was a big part of what drew me to mathematics in the first place. For me, it had a profoundly spiritual quality. My own experience of spirituality addresses the aspects of the world that are vastly bigger than we are, the things that we can faintly perceive but can’t contain, that which evokes reverence in us. It’s the hidden structure that underlies the world—just like mathematics... 

Read the whole interview here.

Book tour

I'm planning a small book tour, in Santa Fe, Albuquerque, Denver and Boulder. I'm also holding two readings on Facebook Live. I hope you can join me.

Facebook Live: 
Monday, May 22 10:30am Mountain time (5:30 pm GMT) 
Tuesday, May 23 6:30pm Mountain time (1:30 am GMT)
www.facebook.com/julie.rehmeyer

Santa Fe:
Thursday June 1, 6pm Steve Elmore Gallery
839 Paseo De Peralta #M

Albuquerque:
Monday June 5, 6pm Bookworks
4022 Rio Grande Blvd. NW

Denver/Littleton:
Monday June 19, 7pm Tattered Cover Aspen Grove
7301 S Santa Fe Dr., Littleton

Boulder:
Thursday June 22, 7:30pm Boulder Book Store
1107 Pearl St.

My Op-Ed in the New York Times: Down with Bad Science!

This one is huge for me: A few days ago, I coauthored an op-ed in the New York Times about the major scientific flaws in the PACE trial, which claimed that psychotherapy and graded exercise therapy can cure chronic fatigue syndrome. The reality is that the trial's own data show that they don't.

Of course, it's always awesome to have an op-ed in the New York Times, but this one is especially huge for me. To explain why, I wanted to give you a bit of the backstory for that piece.

When the PACE trial first came out, six years ago, I was at my very sickest. I'd had a sudden major deterioration a few months earlier, and I was lying in bed, day after day, trying to manage my terror as I waited to fly to Florida to see a top ME/CFS specialist. I kept sending apologetic emails to my editors as my deadlines sailed past, trying to keep my career alive even though I didn't know if I'd ever be well enough to work again. 

Then one morning, reading the New York Times on my phone—sitting up to use my computer was far too hard—I came upon a story about the PACE trial

I was so shocked. I’d worked with my therapist for seven years during my illness, and while he’d helped me keep from losing my mind as my body had deteriorated, he couldn’t stop me from losing my health. Also, I’d tried to build up my exercise over and over again. I'd learned that I had to stop the moment I thought "I'm a little tired," or I paid, big. Extreme caution was the key to maximizing how much I could do.

I couldn't understand it. The PACE trial smelled good in so many ways -- it was big, expensive, published in The Lancet. But it just couldn't be right. 

It took me quite a while to get well enough to learn about all the problems with the trial, and when I did, I felt betrayed by both science and by the science journalists who reported on my disease so badly. The pain of being sick was terrible, but the pain of feeling betrayed was a whole added layer.

Since then, I've written about or mentioned the PACE trial as I could, in STAT NewsStats.org and the Washington Post. But, of course, the New York Times has a whole other level of influence, and I hope the piece will help change public health recommendations around the world.

One of the delicious ironies of this is that the author of that initial New York Times story that so shocked me was David Tuller, my co-author on this op-ed. He listened when patients complained to him, and he became an absolute hero in this disease, blowing the lid of this trial in his huge expose of it in Virology Blog.

So I have this sensation now like I want to travel back in time to whisper in the ear of that sick woman lying in bed: “Six years from now, you and the guy who wrote this story you just read are going to team up, and you’re going to write an op-ed in this very newspaper describing exactly what the scientific problems with this trial are. Not only that, but you’re going to have a memoir coming out about chronic fatigue syndrome and how you’re going to find your way to vastly improved health. As powerless and frightened as you feel right now, you’ve got some serious power in you!"

I tell the fuller story of the PACE trial and how it changed my understanding of science in my book, Through The Shadowlands: A Science Writer's Odyssey into an Illness Science Doesn't UnderstandIt's available for pre-order now and will be published by Rodale on May 23.
 

Order Through the Shadowlands now!

The first review!

Publisher's Weekly ran the first review of the book:

Science journalist Rehmeyer’s deeply personal illness memoir stands out for the lucidity of her self-analysis and pragmatism about managing a life turned upside down by chronic fatigue syndrome (CFS). She emerges as simultaneously a science journalist frustrated with established medicine’s dismissiveness, a patient open to the pseudoscientific approaches of non-traditional practitioners, and a desperate woman reaching out to suffering peers on the Internet for support and advice. This last avenue ultimately leads her to an extreme removal of mold from her environment, starting with a body-resetting solo expedition to Death Valley. Exploring ideas of dependence and self-sufficiency, Rehmeyer shows her illness through the lens of her personal relationships—with her strange and abusive mother, mentally ill first husband, mostly distant siblings, and two successive partners, the second of whom is supportive where the first one is not. In this way, she explores her illness’s psychological aspects while never giving up the idea that CFS has a real and profound physiological component. Rehmeyer’s frustrated but cautiously optimistic story will resonate with readers who value an intelligent, scientific approach to life but wonder what to do when there aren’t any good answers.