On November 24, I published a blog on Chronic Fatigue Syndrome (CFS). In it I called attention to Paul Grose, our son, who, along with his wife Juli, has experienced the debilitating effects of CFS (now renamed Myalgic Encephalomyalitis ME/CFS) since 1987. Juli also lives with multiple chemical sensitivities (MCS). I have asked Paul to write this guest blog.
All ME/CFS patients have their unique stresses and variations of the major symptoms of the disease. When we first became ill, for example, we had a different kind of stress than we have now in that we could appear completely normal for a few hours, and then, like Jennifer Brea (See November 24 blog featuring her TED talk or: https://www.ted.com/talks/jen_brea_what_happens_when_you_have_a_disease_doctors_can_t_diagnose), we would crash for hours and days on end. In fact, we had both been extremely ill during our last semester at college; far more was expected of us than we could do. In each patient’s life, there are unique ramifications of the disease based on the age at which they became ill, the belief and sympathy of relatives, and the resulting social ramifications. Some never have the chance, for example, to get married, others have spouses and families who don’t believe them, and still others try to take care of children when they are too ill. So, in our case, here are our unique challenges:
- Both of us have this disease. Jennifer Brea’s husband, Omar, has to care for her. But he is healthy, and while she has been ill for five years, we have been at this for over 30 years. I try to take care of Juli while sick myself,in bed much of the day.
- Juli is severely ill, classified as a “Level 1” (out of 4, the sickest). She is able to sit up briefly only for her meals and for a 45-minute ride in the car (the vestibular stimulation helps her sit up). Otherwise, she is bedridden. I am at level 2.5 out of 4.
- Juli has severe MCS (multiple chemical sensitivities) as well. The searingvasculitis(inflammation of her blood vessels) Juli experiences is excruciatingly painful. Many of the patients featured in a recent movie on ME/CFS have mold sensitivity, but they do not have MCS. It is a fairly common co-condition with ME/CFS, however.
Jennifer Brea obviously is well enough to handle normal everyday chemical exposures, and Whitney Davis (a ME/CFS patient, son of Stanford Genome Institute director Dr. Ron Davis) is able to handle baby wipes used to clean his hair and to be around his parents without extra measures related to chemicals. This added condition of Juli’s not only causes many present limitations, but has resulted in years of going without running water and personal company with other people.
- Juli’s electromagnetic field (EMF) sensitivities create an even greater layer of pain, tedium and isolation beyond that experienced by even a severe MCS patient. Obviously, she is not able to physically handle and use electronic devices, must carefully ration her exposure to TV/computer screens at a distance, and cannot tolerate radio of any kind. Back in the early 90’s, for example, we were unable to use the electric heat in the winter without leaving the house for a 3-year period. All these factors in Juli’s disease are an enormous strain on Paul, and vice-versa.
- In one of Jennifer Brea’s recent interviews, she states that if she stopped any of her current pharmaceuticals, she would not be able to move within just 72 hours. Another patient told her about trying to go off B vitamins in order to save money, and she relapsed for the next few years, and her children had to take care of her. In the same way, Dr. Hulda Clark’s parasite program, the anticlotting medicines, and herbal antibacterials & vitamins are the only supplements that help Juli at all with the postexertional malaise (PEM), enabling her to take care of herself during the night. Otherwise, Paul is forced to stay up with her all night and lose even more sleep. And these are the only things enabling her to treat her severe sleep disorder and to talk.
- I am in bed much of the day, also with a significant sleep disorder myself. I must use my limited quota of daily energy to accomplish tedious tasks to keep our lives running. As Dr. Nancy Klimas points out in the recent movieUNREST, (produced by Jennifer Brea): When the cell has no more energy, the only recourse is to completely stop, or the illness will continue to cascade. Many people assume that a given patient’s activity level will remain stationary throughout his/her life. But many patients begin at the higher levels, such as Level 4, and become severely ill due to overexertion, thus dropping to Level 1 or 2. Also, excessive emotional and/or physical stress activates the Cell Danger Response, as Dr. Robert Naviaux says, and causes the patient to crash, sometimes permanently. The only thing that keeps the disease process at bay is good nutrition, good supplementation, keeping the stress to a minimum, and adequate sleep and rest.
Do you know anyone with ME/CFS? How would you respond if they showed symptoms? How would you encourage Paul and Juli?
[Source: Diagnostic decision tree: www.iom.edu/ME/CFS]