CFIDS Awareness Day Letter 2002
CFIDS Awareness Day Letter 2002
Dear Friends and Family,
May 12th, 2002 is the tenth annual CFIDS/ME Awareness Day. It also is very close to my tenth anniversary with CFIDS. Traditionally, the tenth Anniversary is the tin year. Little more than a hollow rattle has been heard in the last decade over CFIDS, yet my life has eroded. Activism by CFIDS patients has been next to impossible. "When you get it, you go down so fast," said Keith Jarrett in The Guardian. "And then if someone said, 'Do you want to demonstrate,' you'd say, 'What? I can't even get out of bed.' " We, the people in bed, need you, the able-bodied, to protest, to scream, to fight, to write letters, to make phone calls, to read, to educate doctors, to educate alternative medicine practitioners, to learn, to believe, to hope, to fight.
The CFIDS Association has free brochures and a packet of activist materials for CFIDS Awareness Day, including press releases, sample letters, and fact sheets. Please read and distribute this information, even if you can only e-mail a fact sheet to a local newspaper or tell a few friends. Also, please feel free to forward this letter to anyone who might benefit from it.
For a recent meeting I helped organized with local officials about CFIDS, one patient told me he didn't know how he could talk about the vastness of his illness experience. He called me the next day to tell me he had an idea -- he was going to put all of his medical files into a milk crate (he thought they would fill at least one) and bring them. He hoped the files would tell the story.
After ten years, I often feel like I have only begun to tell the story of my illness. CFIDS is not visible, except through the most advanced technology that monitors interleuken levels, blood flow, cardiac patterns, and except to those who spend a lot of time with me. My files cannot begin to describe the enormity of illness and loss.
What It's Like
In one published study, CFIDS patients scored worse on quality of life tests than every studied patient, including those with heart disease, those undergoing hemodialysis and chemotherapy, and those with other chronic illness (Anderson, J.S. and C.E. Ferrans, "The Quality of Life of Persons with Chronic Fatigue Syndrome, Journal of Nervous and Mental Disorders 185(6)). Still, it is hard to translate what this means. When I really examine the level of debility of severe CFIDS patients, a category I now find myself in, I see questions that just can't be answered. How can people be so sick and linger on, and not die, and not get better? How can they sometimes leave their homes and appear absolutely normal, look like everyone else? Why would an illness choose to hide itself in this way?
We are profoundly hidden from view, the sickest among us. What makes an appearance in public is a small tip of a very big iceberg. I generally must lie down for 16-20 hours a day. I rarely see people or leave my house. I pay a helper to do the most basic things for me, such as fill my dog's bowl with water. Such a simple task, like filling a bowl with water, has taken on great magnitude. The bowl is heavy, the water is heavy, and getting up to fill it is difficult. I spend almost all of my time in my 12 by 12 home office, where I can go between my computer, futon, and TV. It is exactly like a cellblock except that I have the illusion of freedom.
The illusion of freedom is a mixed bag. My spirit is dying to do the things I used to do -- attend classes, socialize, give readings, ride my bike for miles, read books, walk to the end of the block, go to the ocean, visit my family in Illinois. I have missed almost all social gatherings and opportunities in the past ten years. I have canceled residency fellowships at artist colonies. I turned down a graduate program. I missed every wedding and commitment ceremony I was asked to attend. I missed parties. I missed the ability to promote my own book. I missed plays, concerts, art openings of my friends. I missed my college reunions and high school reunion. I turned down invitations to visit friends in other states and countries.
For the things I did do, I paid dearly. I rested up for weeks or months beforehand and paid for weeks or months or years after. I did not understand this phenomenon, which Dr. Paul Cheney calls "push and crash," for a long time, until many years ago a CFIDS doctor pointed out that a 6-month worsening of my symptoms was due to a trip I took. People rarely see how much preparation goes into everything I do, or how much extra time I am bedridden for any small activity. Just planning to meet up with a friend can be like training for the Boston Marathon. This is perhaps the most insidious part of this condition, as it allows me to briefly appear normal, duping others into believing that I am not largely bedridden.
But "push and crash" leads to enormous isolation. Spending time with a friend or family member means that I have a long payback. I can't have visitors dropping in and out. I can't have a live-in caretaker or roommate, since the presence of anyone utterly exhausts me. As my chemical sensitivities have gotten worse, it has become nearly impossible to make people scent-free enough for me to be around them, due to my reactions to the chemicals in fragrances and essential oils. But worst of all, in my solitude I can't even do most things. I cannot read anything longer than a short article or poem, and rarely those -- visual problems and cognitive deficits make it impossible. I can't concentrate on music or books on tape or complicated films. Too much talking exhausts me. I watch a lot of reality TV because real life, to me, is now a fascinating form of fiction. I remember one acupuncturist, who treated CFIDS patients, saying, "This illness is like constant punishment."
I won't sugar coat it: CFIDS is hell. I have gotten worse despite acupuncture, herbs, chiropractic, cranio-sacral work, copious medications and supplements, dietary changes, and a hundred other efforts. Hospitals and doctor's offices, when I'm able to even get to them, make me incredibly ill. They do not -- except for rare exceptions in America where scent-free rooms are available -- accommodate those with chemical sensitivities. Many people with CFIDS end up homeless, and a recent study found that an astounding 57% percent of people with multiple chemical sensitivities (MCS) had been homeless at some point in their illness ("Homelessness at a Critical Level for Western Massachusetts Chemically Injured," press release from the Environmental Health Coalition of Western Massachusetts, March 11, 2002). I see how easily this happens -- if it weren't for my apartment, in which I have removed scented products and allergens that make me instantly incapacitated, I would have no other place to go except my car or a tent (even homeless shelters don't accommodate the chemically sensitive). Not every CFIDS has severe chemical sensitivities, though most CFIDS patients have some -- I am one of the unlucky ones who also has Multiple Chemical Sensitivities (see fragrances and MCS).
Many people are stunned that I have stayed so sick for so long, mistakenly believing that CFIDS is a mild, short-term condition. Some of this confusion is due to the fact that many articles on CFIDS, and particularly many articles and books in the field of alternative medicine, use "Chronic Fatigue" and "Chronic Fatigue Syndrome" interchangeably. Even WebMD now knows that these are not the same thing -- stating, "most people who have chronic fatigue do not have the disease chronic fatigue syndrome. There are many health problems that can cause fatigue. CFS can be diagnosed only after a thorough evaluation has ruled out other possible causes of chronic fatigue." People with idiopathic chronic fatigue might spontaneously recover, but those with CFIDS generally don't. A study in 1999 found that only 4 percent of severe CFIDS patients ever fully recover (Hill, Nancy et al. "Natural History of Severe Chronic Fatigue Syndrome." Archives of Physical Medicine and Rehabilitation, 80, September 1999). Even the CDC, which used to publish optimistic, poorly designed studies on recovery, now estimates the recovery rate of CFIDS to be less than 12%, according to the CFIDS Association of America. This could change, with viable treatments, but still NOT A SINGLE DRUG has been approved by the FDA for CFIDS. Having CFIDS is very much, medically, like living in a third-world country.
The Government Neglect of CFIDS
Recently, I compared government CFIDS funding to that of similar underfunded illnesses, to see exactly how much we are getting short shifted. Here is what I found:
-- MS gets $60 million a year in government funding for 300,000 American adults. According to the National MS Society, "The majority of people with MS do not become severely disabled." (from National MS Society).
-- Lupus gets $60 million a year in government funding for 1.4 million American adults. 20% of people with lupus are unable to work or go to school. (from Lupus Foundation)
-- CFIDS gets $13.8 million a year in government funding for 800,000 American adults. 43% of CFIDS patients are unable to work or go to school. (from materials from the CFIDS Association of America).
CFIDS affects more women than breast cancer, lung cancer, or HIV infection.
In a recent survey of medical professionals and researchers, the CFIDS Association found that 75% of those surveyed believed CFIDS to be as disabling or more disabling than lupus, multiple sclerosis, or rheumatoid arthritis (from the CFIDS Awareness Day packet, 2002).
Why is Nothing Being Done?
After ten years, "why?" creeps into my heart and my mind over and over again. It is like being in a plane crash in a frozen tundra, trying desperately to survive while waiting for someone to come and rescue you, and knowing that people know exactly where you are and could get there, if they only would. But they don't.
Negative character attributes are still ascribed to those with this illness, leading many to blame the sick individuals and feel shame about supporting the cause. Even though the World Health Organization (WHO) finally classified CFIDS under illnesses of the nervous system and the brain (where one would find Parkinson's, Alzheimer's, and MS), they later sent out a booklet called "WHO Guide to Mental Health in Primary Care" that classified CFIDS as a psychiatric illness (The CFIDS Chronicle, Fall 2001). Still, an entire decade into my illness, people seem to have no idea of the elaborate symptomatology I suffer. They often say to me, "So you're just fatigued, right? So you're tired a lot?" I suffer from Explanation Fatigue, but CFIDS has many other symptoms besides fatigue, and the fatigue itself is something no healthy person could comprehend.
People are surprised to learn that CFIDS patients have brain damage, cardiac problems, immunological abnormalities, orthostatic intolerance, and seemingly endless reactivation of debilitating viruses in the system like HHV-6, clamydia pneumoniae, epstein barr, and many others. Dr. David Bell has found that many CFIDS patients have low blood volume, often less than someone who has bled to death. Some of us -- including me -- get so sick after having blood taken for tests that we simply have no choice but to forgo most medical testing.
Unfortunately, gurus such as Andrew Weil, M.D., go around perpetuating stereotypes and putting forth extensive misinformation to the alternative medicine community. Weil, for example, tells patients to do aerobic exercise, which is now believed to cause mitochondrial damage and possibly irreparable cardiomyopathy to CFIDS patients. It is not an innocuous suggestion, but rather one that can cause great harm. Weil also states in his book Health and Healing that "Sickness is the manifestation of evil in the body, just as health is the manifestation of holiness."
I was one of those who piously believed -- before I got sick -- that I could always use spirit, will, my dietary habits, or behavior to heal myself. Ten years and a million willful efforts later, I am completely humbled to the realities of circumstance. Before I got sick, I ate all natural foods, didn't take antibiotics, didn't smoke or use drugs, was a vegetarian, and performed a rigorous weekly workout routine. My friends jokingly said I had an "iron immune system" because I never caught bugs that were going around. It was my fantasy to live in a place with a strong holistic community and good natural foods where I wouldn't need a car and could ride my bike everywhere. It is ironic that now my car is always parked six feet from the back door -- it's the only way I can get anywhere.
It alarms me most of all that alternative medicine seems particularly favorable to the term "chronic fatigue" as some kind of shorthand for CFIDS. This term is a grave misrepresentation of the illness, as "chronic fatigue" is a symptom of many conditions, often a result of overexertion, and has nothing to do with the complexity of CFIDS. When these two terms are used synonymously in studies and in anecdotal reports of cures, the results are incredibly misleading. It is like doing a study on mild memory loss and then applying it to Alzheimer's disease. Yet I see this phenomenon often, especially in the field of alternative medicine where books titles almost always lump chronic fatigue and chronic fatigue syndrome together (Chronic Fatigue and the Yeast Connection, the Alternative Medicine Guide to Chronic Fatigue and Fibromyalgia, From Fatigued to Fantastic, etc.).
Since I also suffer from increasingly severe Multiple Chemical Sensitivities (MCS), which developed several years into my CFIDS struggle, I get an unfortunate window into the lives of the chemically injured. Medical offices and hospitals, not to mention clothing stores, bookstores, movie theaters, and just about every other public venue, make me incredibly sick. Chemical triggers that make me much sicker are everywhere -- in new clothes, in book ink, in furniture, in building supplies, wafting from the laundry rooms of neighbors, in the pores of strangers, on money that has touched other hands. Unfortunately, fragrances alone contain many noxious chemicals that are poorly regulated (see "20 Most Common Chemicals in 31 Fragrance Products.)" Though I've been trying to move to a more remote location where I can be free of many of these things, I cannot drive a distance to get food or medical care, so I must live very close to services or have extensive support. Fortunately, some people have started to recognize that chemical sensitivities are a disability issue and not a personal issue. For example, the city of Halifax, in Canada, now has a scent-free policy (see "Halifax leads the way with fragrance free policies ").
CFIDS affects more women and men, making it particularly vulnerable to medical misogyny and negative character attributions. In reality, recent research has suggested that women might be more susceptible to neurotoxic agents, such as brain-damaging drugs like ecstasy ("Party drug could harm women more than men, study says" by Emma Ross, AP Wire, 11/30/2001 ), and are more likely to suffer asthma or diminished lung capacity from natural gas in homes ("Cooking with gas may take your breath away" by Peggy Peck, MSM Health ), which could mean that there are biological differences that make women more susceptible to chemical poisoning. I have personally been conducting bits of research on the connections between multiple pesticides and CFIDS, and very strongly suspect that my illness was caused by pesticide poisoning. Research on Gulf War Syndrome (thought to be CFIDS) by Dr. Robert Haley and Dr. Mohomed Abou-Donia, as well as British studies on "sheep dip syndrome" and CFIDS, have validated these suspicions. It does not take terrorists stealing crop dusters and spreading nerve gas to poison civilians. Most people don't realize that all modern pesticides have evolved out of nerve gas research.
Ten years ago I left my college town in Ohio with great promise and a desire to set the world on fire. I planned to go to graduate school to get an MFA in Creative Writing, and ultimately to teach at the college level and write on the side. I never could have dreamed that my life, in ten years, would be so circumscribed. For ten years, I have been trapped in an arranged marriage to a sadistic cohabitant. Though I appreciate every thought and prayer, what I really want for my anniversary is activism.
If you can do one small action to promote CFIDS awareness -- whether it be to send an e-mail to your local paper, call a radio station, educate a friend or medical professional, contact political officials, or simply reach out to someone who has this illness -- it would do us all so much good. CFIDS patients desperately need the support of able-bodied people. Please join the fight before another ten years pass, so I can exhume my bicycle from my basement and join each of you in a celebratory ride.
Editor, Stricken: Voices from the Hidden Epidemic of Chronic Fatigue Syndrome
******"The single best book I've read that honestly and fully describes the CFIDS experience." - Joan Livingston, About.com reviewer. ***********
Return to Stricken home page, to read reviews, find out ordering information, and learn more about the book and CFIDS politics. Order Stricken from online booksellers, or by calling 1-800-HAWORTH.
Read 2001 Letter