CFIDS/ME Awareness Day 2001
Dear Friends, Family, and Allies,
May 12, 2001 will be the ninth annual International chronic fatigue immune dysfunction syndrome (CFIDS)/Myalgic Encephalomyelitis (ME) Awareness Day. Ironically, May 12 of this year is also close to my ninth anniversary with CFIDS. It was nine years ago, in April/May, that I began having attacks of vertigo. By June of that year, I had a sudden onset of CFIDS with a strange flu-like illness that typifies the beginning of the condition. I had just left Oberlin, Ohio, where I had finished college six months earlier, and was moving out to San Francisco. I was never able to work full-time, and was profoundly disabled from the moment of onset, though I was able to conceal the severity of my symptoms for awhile. Within a few years, I was on total disability.
This past year, as most of you know, has marked a banner year for me because of the publication of my book, Stricken: Voices from the Hidden Epidemic of Chronic Fatigue Syndrome. I remain, nine years into this illness, unable to take care of my most basic needs, mostly bedridden, and almost entirely homebound. I am sending out my awareness letter to friends and family a little early this year, with the hope that some of you might consider downloading the awareness packet from the CFIDS Association's web site, and contacting your government officials or media representatives.
Recent media coverage of CFIDS has been abysmal. It seems that not a week goes by in recent months when I am not mustering up my last energy to counteract the negative media attention. One would think that so many years into an epidemic, the media would be better informed, but they are not, and their rare coverage of CFIDS generally focuses on CFIDS as a controversial or psychosomatic illness (or worse, as some sort of spiritual crisis of the modern age). As one of my doctors said recently, CFIDS is the only condition he mentions to other doctors in which he confronts not just ignorance, but outright disdain. As more links are being established between CFIDS and Gulf War Syndrome, the disdain seems to grow.
This year I'd like to focus on the way the media has distorted the CFIDS struggle, often confusing the terms "chronic fatigue" and "chronic fatigue syndrome" (please do not use "chronic fatigue" as a synonym for CFIDS - they are not the same), continuing to portray CFIDS as a cultural metaphor, and insisting on a psychosomatic explanation of CFIDS. This distortion is not only offensive, and inaccurate, but it is the ONLY coverage CFIDS tends to get, and thus research has been hindered by cultural, media, and medical bias. In the following section, I'll show you how in just a few months, without (or despite) lobbying from CFIDS patients and advocates, major media outlets rack up a bunch of misinformed statements to perpetuate stereotypes and keep patients from getting the help they so desperately need.
2001: The Good, the Bad, and the Ugly in CFIDS Coverage So Far
Here are just a few examples of bad media coverage I have protested in the past two or three months:
- On March 9, 2001, Syndicated radio doctor Dean Edell wrote, in his web-based health column, "I'm absolutely sure that chronic fatigue syndrome is really a psychosomatic illness." (after protest, he changed the wording slightly, to read, "I'm fairly suspicious that chronic fatigue syndrome is really a psychosomatic illness"). The column can be found at: www.healthcentral.com/PrintFormat/PrintFullText.cfm?id=49513.
- In February, Oprah Winfrey posted a call at her web sites to recruit guests for a show on "illness because you lost your spirit." The text of the appeal for guests read, "Do you push yourself to the edge of exhaustion? Do you think you have Chronic Fatigue Syndrome or Fibromyalgia as a result of not nurturing your mind or spirit?" No other illnesses were mentioned. A response petition to Oprah can be found at www.petitiononline.com/cad201ow/petition.html.
- The New York Times published an interview with Stephen Straus ("Separating Remedies from Snake Oil," April 3, 2001), who ran the government CFIDS programs for years. The interviewer at one point queried, about CFIDS, "can you answer the million-dollar question: does it exist?" Straus answered, "What's important about CFS is many people get over it. Individuals who have it for many years lose hope. They then take on a series of maladaptive behaviors which sustain their illness because they become so focused and so phobic."
- Yoga Journal printed an article in their most recent issue (March/April 2001) about CFIDS ("Rest for the Weary"). Though the article had some good information in it, it could not refrain from characterizing CFIDS as a disease of the stressed-out and weak. Most baffling is the fact that, though the author made the important distinction between chronic fatigue and chronic fatigue syndrome, she continued to use the two terms interchangeably. I have noticed that this is something that alternative medicine publications in particular seem to do when they think they are being cool. The author wrote, "Often, people with chronic fatigue are out of touch with their natural human rhythms. They moved too fast, did too much, and their bodies have run down." Her additional comments about the lifestyles of patients seemed to indicate that CFIDS is a stress-induced condition, which it is not.
Accurate Media Coverage
Within the slew of bad media coverage were a few articles that really captured some of the devastation of this illness.
British and American News Reports on CFIDS/ME (ME is the British term for CFIDS)
The BBC News reported that "over half of the people with the debilitating condition ME, or chronic fatigue syndrome, have felt suicidal," profiling a survey by the group Action for ME that found CFIDS patients face a "catalogue of failure and discrimination." Seventy percent of the 2,338 patients surveyed are sometimes or always unable to get to the doctor, nearly a third are bedridden or housebound, and 80% of those who are bedridden have been refused a home visit. The report added, "It is clearly a misconception to think of ME as a 'mild' illness."
BBC News: "ME Patients 'neglected and suicidal'" - 3/21/01
Another article at BBC News profiled a 23-year old girl who has also been sick with CFIDS/ME for nine years, is completely bedridden and so ill she can only communicate through sign language because talking exhausts her. "We get very very mad if we see anyone who doesn't believe ME is an illness, and if people just think itís a very minor illness," said her mother.
BBC News: "'ME has taken over my daughter's life'" - 3/21/01.
A related article proved that suicide is a constant threat for CFIDS patients, and that caregivers and family members suffer too. On April 6, 2001, a British schoolboy and his mother both committed suicide when the son came home from boarding school and became extremely distraught about how ill his mother had become. She had suffered secondary depression due to the severity of her CFIDS. Even though her husband was a prominent doctor and researcher, he apparently could do nothing to help her, and was understandably devastated by the loss of his wife and only son.
"Eton boy in suicide pact with depressed mother" in The Guardian - 4/6/01.
A couple of excellent articles appeared about bestselling author Laura Hillenbrand, whose book Seabiscuit: An American Legend has shot up the bestseller lists in recent weeks. Hillenbrand, almost entirely homebound and unable to walk a block (just like me), nevertheless managed to complete a book and make some excellent statements to the press about what it means to live with CFIDS. In the Washington Post, she stated, "This illness is to fatigue what a nuclear bomb is to a match." "Against the Odds: Laura Hillenbrand Surmounted Illness to Cross the Finish Line With 'Seabiscuit" - 3/9/01.
Confronting the Rampant Mythology
Myth: CFIDS is a mild illness with a good prognosis.
Fact: As I reported in my book, Stricken: Voices from the Hidden Epidemic of Chronic Fatigue Syndrome, CFIDS patients score worse on quality of life assessments than all other illness groups they are compared against. Only 4% of severe CFIDS patients ever fully recover.
Quote: "I've seen cases where the amount of dysfunction that someone suffers with CFS is more severe than someone with rheumatoid arthritis, or lupus, or multiple sclerosis." Dan Clauw, associate professor of medicine at Georgetown. "Against the Odds." Washington Post, 3/9/01.
Myth: Everyone in the government agrees that CFIDS is a disease of weak-willed malingerers.
Fact: William Reeves defied his colleagues when he came public with the fact that most government CFIDS funds had been used to balance the books of other accounts.
Quote: "Many physicians look upon them as malingerers, complainers and whiners. It is a real and disabling illness." Dr. William Reeves. "Real Life with a phantom disease.'" USA Today, 1/13/00. *
Myth: CFIDS is a very treatable condition.
Fact: Most treatments for CFIDS fail, and are palliative at best. Though many practitioners report high "cure rates" of CFIDS, it only takes a little questioning on CFIDS patient list groups to find that those practitioners, though well-meaning, have achieved little more than temporary improvement in their clients which does not continue even if the treatment is continued over time.
Quote: "My days when I see AIDS patients are positively uplifting, compared with my days when I see CFS patients. At least my AIDS patients know exactly what they have, where they are at, and we know the interventions." Dr. Nancy Klimas in "Film Review: 'I Remember Me' by Kim Snyder" at ImmuneSupport.com, 3/13/01. *
Myth: CFIDS is difficult to diagnose and isn't a "real" illness because most tests come back normal.
Fact: Many inexpensive tests on CFIDS patients that insurance companies routinely cover do come back normal. When more sophisticated tests are employed, however, they are often abnormal. For example, CFIDS patients tend to test positive for viral agents like HHV-6A when PCR testing is used. CFIDS patients generally have abnormal 24-hour Holter monitor heart tests, indicating a potential cardiomyopathy. Magnetic Resonance Spectroscopy (MRS) brain scans indicate brain damage. SPECT scans generally indicate extremely low blood uptake to the brain. Dr. David Bell has found that most CFIDS patients have extremely low blood volume, often less than someone would has bled to death. Immunological profiles indicate a shift in the balance of T-helper 1 and 2 cells (TH2/TH1 ratio). CFIDS patients often test positive for hypercoagulation.
Quote: "Most practitioners who see a large number of CFS patients have a standard battery of tests that they run that gives them clues as to whether or not a given patient has CFS, but they are more enlightened by the patient's own descriptions of their symptoms and health history. I've heard physicians describe it as the first few bars of Beethoven's Fifth Symphony: they know it when they hear it." - Kim Kenney, President and CEO of the CFIDS Association, in "Kim Kenney's chat transcript from the Seattle AACFS Conference" at ImmuneSupport.com, 2/13/01. *
CFIDS causes serious bodily harm, and patients like me are fighting for our lives.
- Though Hillary Johnson made well-researched connections between CFIDS and cancer in her book Osler's Web, the secondary threat of cancer remains a poorly-researched phenomenon. The Division of Cancer Epidemiology and Genetics at the NIH did one study to find out if CFIDS predisposes people to cancer. They did find higher incidences of brain cancers and non-Hodgkin lymphoma in a population with high incidences of CFIDS. ("Cancer and fatiguing illness in Northern Nevada -- a causal hypothesis." Ann Epidemiol 1998 May;8(4)245-9).
- A British study documented what Dr. Paul Cheney has been noting on recent MRS tests -- CFIDS patients have evidence of damage to the brain ("Proton magnetic resonance spectroscopy and morphometry of the hippocampus in chronic fatigue syndrome." Br J Radiol 2000 Nov; 73(875):1206-8).
- Dr. Martin Lerner found a high percentage of his CFIDS patients have abnormal cardiac tests, indicating a progressive cardiac virus. "The smoking gun in Dr. Lerner's investigation came from patient samples of heart tissue. The viruses had weakened their hearts by scrambling the normally well-ordered muscle fibers." ("Study Finds Heart-Muscle Viruses Cause Chronic Fatigue Syndrome." Wall Street Journal, 9/19/00).
- The National CFIDS Foundation, in its memorial listof early deaths from CFIDS, lists a high number of people who have died from cardiac problems, cancers, and suicide. These problems will all be treatable as CFIDS is better understood, since doctors are just beginning to understand the mechanisms behind them, but this is why research is so critical.
It is time to spread the word about this devastating international epidemic that has affected so many lives. CFIDS has a higher prevalence in woman than breast cancer, lung cancer, or HIV infection. So many people, including me, wonder when we might be able to gain a semblance of our old lives back. In nine years, though I haven't been able to ride it, I refuse to sell my sleek black Trek touring bike. It remains a symbol of hope for me, because I desperately want to be well enough to ride it again.
Here are a few easy things you can do right now to further CFIDS awareness and fight the good fight:
1) Download the CFIDS Awareness Day packet from the CFIDS Association of America. Read it and pass it on to one media outlet or congressperson.
2) Forward this letter to health care providers and friends. Tell them we need allies. CFIDS patients are far too sick organize protests or march on Washington. Without allies, we will never have a political struggle.
3) Question your own prejudices about chronic illness. Do you believe people with chronic illness are weak, have given up, have bad Karma, or just need "spiritual growth?" Ask yourselves what fears these ideas serve to assuage, and imagine ways to bridge the "us" and "them" separation that keeps disabled people in substandard care. When the New Age, or Yoga Journal, or Oprah's website, portrays CFIDS patients as people who are spiritually bankrupt, is this any different than Attorney General John Ashcroft stating that people are disabled because of God's will?
4) Demand disability inclusion in publications that deal with political issues and discrimination. How often do you see articles about disability and chronic illness in the publications you normally read?
5) Clean up your immediate environment. We are all being affected by the use of neurotoxic and carcinogenic chemicals. Fight against pesticides, do not use fragranced products, and try to find nontoxic solutions for cleaning, pest control, and home renovation.
Yours in the struggle,
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.