When People with Illnesses Have to Do Their Own Research
I invited Erik Johnson, a strong advocate for the connection between toxic mold and CFS, to share his powerful experience with us. The following is from Eric:
During a famous Lake Tahoe outbreak of a mystery illness, I observed that all of the people who fell ill were clustered among "sick buildings." This has been called "sick building syndrome (SBS)," the cause of which was not yet known. The culprit, toxic mold, had not yet been discovered and entered into medical literature.
This cluster association between prior mold exposure and the chronic form of illness was so consistent that it seemed prudent to ask whether individuals with the mystery malady had problems with mold prior to the Tahoe Flu virus that passed through in the Fall of 1985 through mid 1985. All had a mold story to tell.
To my way of thinking, this elevated the role of mold to a critical cofactor in development of the Lake Tahoe Mystery Illness, as was later noted by the 1994 Chester/Levine abstract based on this very same outbreak.
I devised an experimental strategy of extreme avoidance of toxic mold, which resulted in recovery so spectacular that CFS doctors considered it unbelievable.
For the purpose of achieving validation, I took volunteers diagnosed with Chronic Fatigue Syndrome on a "CFS Mold History Tour" of the Sick Buildings where the clusters occurred.
The reaction of CFS patients to these locations was consistent and compelling enough to warrant incorporating the Toxic Mold, Stachybotrys Chartarum into the official CFS definitional criteria as an extreme risk factor for Chronic Fatigue Syndrome. Considering this is the very first documented clue in the clusters for which this syndrome was coined, it should be included in all studies in which Chronic Fatigue Syndrome terminology is used.
Further information and details can be found at MoldFactor.com.
— Erik Johnson
The following excerpt from the book Mold Warriors by Dr. Ritchie Shoemaker (Gateway Press 2005;Chapter 23) recognizes Erik's foresight:
Mold at Ground Zero for CFS
The history of Chronic Fatigue Syndrome (CFS) begins in Incline Village, Nevada in 1985. In the medical history of CFS, each of the concepts applies—failed theories and failed criticism.
One victim, Erik Johnson, told everyone who would listen that mold was a cause of CFS. He came up with his theory at the wrong time in the politics of medical opinion, as an unknown viral cause was blamed instead. Johnson tried repeatedly to get the attention of leading CFS researchers then and now to look at what he knew about mold sensitivity.
Twenty years passed before Erik’s mold opinions were vindicated.
— Dr. Ritchie Shoemaker
Jacob Teitelbaum, M.D. is one of the world's leading integrative medical authorities on fibromyalgia and chronic fatigue. He is the lead author of four research studies on their treatments, and has published numerous health & wellness books, including the bestseller on fibromyalgia and chronic fatigue syndrome From Fatigued to Fantastic! and his newer The Fatigue and Fibromyalgia Solution. Dr. Teitelbaum is one of the most frequently quoted fibromyalgia experts in the world and appears often as a guest on news and talk shows nationwide including Good Morning America, The Dr. Oz Show, Oprah & Friends, CNN, and Fox News Health.