Book Review: Back From the Edge By Lisa Petrison

By Ritchie C. Shoemaker, MD

3/24/2014

Back From the Edge By Lisa Petrison

If you haven’t read Back From the Edge, and Chronic Fatigue Syndrome (CFS) and mold illness aren’t foreign terms for you, please pick a copy of Dr. Lisa Petrison’s ebook.  I’d like to tell you why I make this suggestion.  You need to know that I have no conflicts of interest to disclose in writing this review.

When I say the name Erik Johnson, some members of the CFS medical community roll their eyes.  I roll mine back at them.  They change the subject.  I don’t. Some members of the mold community roll their eyes.  I roll mine back at them. They have no understanding of what it is Erik brings to those affected by chronic inflammatory response syndromes (CIRS) like we see in mold illness and CFS.  I do.

The idea is simple enough.  Exposure to a mixture of antigens that activate innate immune responses is not a good idea for those patients who have compromised regulation of innate immunity.  Usually the harmful chemical stew of antigens in moldy buildings makes people sick.  For a few, like Erik, the illness can come on after outdoor exposure too. Said another way, if you have an illness from mold exposure or CFS, stay out of moldy places or you will get sicker. Stay away from things that hurt you sounds easy until one realizes that 50% of the buildings in the US are water-damaged according to NIOSH. Wet buildings aren’t healthy.

It is this chronic inflammatory illness that underlies illnesses due to mold exposures and underlies CFS as well. I showed the CFS world just that at the IACFS convention in 2009. The patients I presented there met all criteria for pediatric CFS.  But they were actually pediatric mold patients. Oops; the contrived CFS case definition simply didn’t work. Erik was there, as the photo of Erik and me (Chapter 21) shows. He was snubbed (again) there by some CFS big boys and I was ignored after a few months. Oh sure, the IACFS published my paper but face it: it is sad, it is really sad when patients’ lives and health are at stake, to see relevant information (that assuredly would help people) discounted by care givers who could make a difference if they would only listen and think about what they heard. The data speak clearly to those with open minds.

Erik knows CFS now.  His insights you will see in Back From the Edge began in 1985 with his experiences with mold exposures in Incline Village and Truckee, Nevada. He has known since 1986 that mold exposures caused then what some still call CFS.  Erik puts the two elements together. He was there. The CFS docs might say they know mold now but we know they don’t yet have the first idea. It’s time that the world knows what Erik knows.  And that includes the CFS docs.

Dr. Lisa Petrison knows too.  Her book about Erik, Back From the Edge, short as it may be, tersely weaves the story of one man who saw too such, learned too much and talked too much to suit egos of the CFS establishment who said loudly that mold had nothing to do with CFS. If Erik had listened to them, his voice wouldn’t be strident today as it is. 

I can almost hear him: “I know what I saw.  I know what I felt and I found out how to beat what this illness did to me in the past and still does if I am re-exposed.”

The list of the agencies and people who have publicly ignored Erik for 25 years isn’t limited to the CDC and the CFS docs.  Many others are included under the same blanket of denial: they were wrong then as they are now.

Maybe Erik is a polarizing figure: some like him a lot and some don’t.  I like his brains, determination and insights a lot. Erik is one of the good guys.

Look for about 20 short vignettes about Erik and his focus on extreme mold avoidance (EMA) as a therapy in Lisa’s book. He has used EMA for many years to help avoid the debilitating inflammatory illness that those of us in the mold community would expect him to have. If you haven’t read it, please do. Soon.

I trusted Erik to write chapters in each of my last two books, Mold Warriors (2005) and Surviving Mold (2010). When my new book comes out next year I hope it will have another chapter from Erik. What Erik says is clever, ironic and well thought out.  Did I leave out poignant? His patience and persistence reminds me of Penelope from the Odyssey.

It remains incredible to me that so many docs have studiously ignored what Erik says.  Cynical me, I suspect the reasons why include the attempt to avoid a widely publicized exposure of the shallowness of their thought. I guess Erik faces extreme logic avoidance (ELA) from some of the docs from the old time CFS school!

Sure, anyone who knows me will say that what Erik has observed as far as environmental causation of illness symptoms must be documented with labs and genomics, elements that we can obtain easily. But labs cost cash and when one is struggling to shovel enough snow to pay the light bill, labs done to satisfy come science requirements won’t happen. The absence of genomic sampling in Erik and those he has helped, knowing that such sampling would look at the real “end basis” of abnormal physiology really does bother me. The genomic testing needs to be done.

Do I think that EMA is needed for the 99% of mold patients? No. Is the science of EMA established? No. Yet, is there any reason to doubt what Erik has told us about outdoor exposures like plumes, fire retardants, moldy logs and sewer gas emanations? NO!

I have referred at least 25 people over the years to contact Erik to learn EMA.  They are better for that contact. I will maintain that without correction of the physiologic basis for the chronic inflammatory illness that we see every day in mold and over 90% of those diagnosed with putative CFS there is no hope for full restoration of proteogenomic control of inflammation.  By implication, I think there is a greater quality of life for Erik if he had all his labs corrected. Just imagine Erik with his proteomics and genomics corrected: He would be sending us pictures from on top of Mount Everest!

Bacon and Eggs-istentialism

Erik observes and puts what he sees on the proverbial table just as inductive thinkers beginning with Francis Bacon would have us do.  We cannot discount what he sees as his observations are repeated by so many others. The reality of existence for Erik (and the group of others I have seen like him) is that minor changes of exposure, with limits of such exposure that are not detectable by others, teach us that the incredible importance of attention to detail is mandatory, including documentation of observations.

Erik has learned to live the way he does. Frankly, without his skills and creativity, we would not have Erik to kick around any more. But he is here and we celebrate him as a true visionary.  I wish others had listened to him. I did and still do. What advances we would have seen if others who hold financial and political power in the CFS world had?

Existence questions for Erik might be different from those of others.  Instead of asking “Am I alive,” Erik might ask, I am alive but where can I live? Instead of “Am I any good,” Erik could ask, “What good can I bring to others if others won’t listen?”

I continue to hear you, Erik.  Please start collecting the labs, especially the genomics, to bring objective parameters to science and to what you know to be true. And if the money needed to do so isn’t there, maybe now the well-heeled CFS researchers who throw cash at countless windmills will invest in what actually is wrong in those with chronic fatigue.

Lisa, you have done well.  Many congratulations.  I hope others will read what you have put on paper. This story is not over. Your work brings hope to those who can’t climb Mount Whitney as Erik has ten times and counting.

Still, this war to overcome ignorance, arrogance and denial will be won by truth, honesty and integrity.  The worlds of CFS and mold are all mutually enabled by education and understanding. Egos must stand down when faced with data.

When will this ideal solution occur? Erik hasn’t yet climbed his Mount Everest the show the CFS and mold world looks like from 29,000 feet. But he will and when he does, all of us will benefit.