The 11th annual Chronic Fatigue Immune Dysfunction Syndrome Awareness Day has rolled in like a slow tank, and I still feel like we're at war.
As a divided world watches the turmoil in postwar Iraq, May 12, 2003 marks the 11th annual CFIDS/Myalgic Encephalomyelitis Awareness Day. Tens of thousands of veterans of the first Gulf War remain disabled by CFIDS and related conditions, battling a personal hell that has outlasted the battlefields by over a decade. Worldwide, millions of civilian patients with CFIDS wait for viable treatments.
I mark my eleventh anniversary of CFIDS, watching the years tick off somberly as I get sicker and more isolated, praying for research to allow me jailbreak. I spend my time mostly bedridden amongst tangible symbols of debility: the skeleton of my bicycle in the basement, an invitation to my sister's wedding that I can't attend, an oxygen tank resembling a Cold War missile, the road atlas I finger like a map of veins.
Even after eleven years of Awareness Days, CFIDS patients fight rampant myths that seem, like viruses spun of narrative, to feed off of a population too disabled to fight. I'd like to use this Awareness Day Letter to erase some urban myths around CFIDS, and to talk about recent research that carves out a more tangible definition of the illness.
I'd like to start with the trumpeter of the public myth, who perpetuates the notion that CFIDS is a nebulous or mild condition.
The grape vine says she has CFIDS, but people haven't spoken to her in years. They just hear rumors. About her erratic behavior, how she can go out one day and not the next. How she "claims" to be sick but looks fine. How she curled into a cocoon of illness. How she walked her dog one day and "looked perfectly healthy." CFIDS patients hear about her all the time, and are often compared to her.
Sometimes these stories are about a real CFIDS sufferer, with the oddly healthy veneer on her cheeks, who appears reclusive and inconsistent and therefore suspicious. Often, they are about a barbiturate addict, someone with a lingering virus, or any number of magpies who claim to have CFIDS when they don't. Sometimes, they are those with mild CFIDS who are lucky enough to be in the minority with substantial recovery, or those who aren't yet diagnosed.
One of these mythopoetic figures crossed my path recently, when I found a potential friend through an arts website.
H. suggested we meet for coffee. I explained that I couldn't go out for coffee -- or out period -- because I have a chronic illness. "I know I'm being vague and you'll probably think it's leprosy," I joked in an e-mail, "but it's not." "I didn't think leprosy," H. wrote back, taking me seriously. "I thought it was something very disabling like MS. Or maybe something nebulous like chronic fatigue syndrome, but that's not really physically disabling."
Her last phrase deflated me. I suggested she check out my website to learn more about CFIDS. Apologetic, H. gave me this explanation:
"My stepsister's mother-in-law told us that she had Chronic Fatigue Syndrome. It seems that this was either a misnomer or misdiagnosis, because she was nothing like the information of those web pages. She had been at [a] wedding a year and a half earlier, and was very social, outgoing, and active. On this occasion, she had invited me to come visit her. She seemed to know and be friends with everyone in town! She was rarely home, frequently hosted visitors and cooked gourmet meals, and maintained a very busy life."
H. continued: "We went out to many restaurants, to the movies, to arts exhibitions, to shops, and to several of her friends' houses. If she did have it, her symptoms did seem 'nebulous' to me, and certainly not extremely debilitating. She still travels a lot, often great distances. I did hear the phrase 'Chronic Fatigue Syndrome' to describe her condition. I realize now that I was not only ignorant, but insensitive and hurtful."
Rare CFIDS patients can appear high-functioning for short periods of time, but not as indefatigable as this woman. Most simple activity is prevented by its aftermath alone. The severe post-exertional fatigue that CFIDS patients experience is a hallmark diagnostic symptom. A new Canadian Case Definition made special note of it: "After normal physical or intellectual exertion, a patient may take an inordinate amount of time to regain her/his pre-exertion level of function and competence. For example, a patient who has bought a few groceries may be too exhausted to unpack them until the next day."
Our fatigue is legendary, but CFIDS is not the same as "fatigue" or "chronic fatigue." "Fatigue is such a misnomer for what I was experiencing," said CFIDS filmmaker Kim Snyder in a radio interview, "I basically felt like I was dying." In a presentation to a Dallas-Ft. Forth CFIDS group, Dr. Paul Cheney explained how the bodies of CFIDS patients are choosing between lower energy and life, or higher energy and death. On a physiological level, CFIDS patients live in a near-death suspension, making patients feel much like they are dying, not tired.
Dr. David Bell has studied the near-death feeling as it relates to blood volume. "[T]he vast majority of Bellís CFIDS patients had 'extraordinarily' low circulating blood volume (a combination of plasma and the red blood cells via which the plasma delivers oxygen throughout the body)," writes About.com columnist Joan Livingston. "While his average patients ran about 70 percent of normal, several patients with Chronic Fatigue Syndrome (PWCs) had only half the blood volume of a healthy person, an amount so low that it would ordinarily cause shock and prove fatal in a car accident." Many people are overtired, but Dr. Anthony Komaroff notes at ImmuneSupport.com that only two to five percent of patients who complain of fatigue to doctors meet the diagnostic criteria for CFIDS. Those with true CFIDS feel like death barely microwaved.
Why is there a gap between public perception and reality? Well, CFIDS patients can look uncannily healthy. We are deceptive, sometimes able to do things and sometimes not, sometimes looking energetic even when we feel like hell. Occasionally the distant mother-in-law is someone who can attend a wedding, compensating for her disability in private ways, looking momentarily able-bodied though she might spend weeks in bed from the activity.
Clinical use of words like "stealth," "tricky," and "migratory" also add to the nebulous public image. Dr. Arnold Peckerman reported on Web MD that CFIDS patients might have what he calls a "tricky heart." The word "tricky" seems simple, like a stuck lock that needs grease, but Peckerman's heart discovery is harrowing. "Basically we are talking about heart failure," Dr. Peckerman says of the type of abnormal valve function in CFIDS patients. "[C]hronic fatigue syndrome is a progressive disease." Peckerman believes this discovery might explain why CFIDS patients become so ill from simple movements. "Typically we see this in people with three-vessel heart disease," adds Emory University cardiologist Joseph I. Miller III, MD of the abnormalities.
The CDC is currently working on a gene expression study that will knock CFIDS poseurs out of the family tree. "Differences in gene expression profiles can help distinguish between people who have CFS and those who don't," says program director Dr. William Reeves in the CFIDS Chronicle, Winter 2003. Hopefully, this study and other studies searching for diagnostic tests will help sort out true cases.
A test will certainly help, but the misperceptions around CFIDS go beyond the lack of a definitive lab test. "There is a bias against illnesses that lack a single diagnostic test, and chronic fatigue syndrome is such an illness," reports the website for PBS's The Infinite Mind. "But this bias is based on the fantasy that diagnosis is a simple matter of reading lab tests. It's also very unevenly applied. Asthma and Alzheimer's disease lack diagnostic tests but few people treat these conditions dismissively."
What CFIDS really looks like is often never seen, unless one knows its language.
A friend of mine works for an ambulance company. Though she deals with many life-or-death situations, she had never recognized a CFIDS patient until she met me. Then she e-mailed me this story:
"I had my first CFIDS patient this morning. The man might die.
"The guy was on the floor, breathing only a few times a minute. My partner was inserting a nasal airway so we could bag him. I asked his medical history. [His wife] told me something irritable bowel, kidney dysfunction, and orthostatic hypotension. She said he is chronically hypotensive, and last night he started flu like symptoms with diarrhea and vomiting. She stressed to me that losing any drop of fluid is really detrimental to him. This is true of anyone chronically hypovolemic and/or hypotensive. She did not ever mention CFIDS at all.
"I was the driver on the call. I was talking to the wife again, because I was waiting on scene to get all the IVs and tubes in before rolling. I was telling her what we were doing and would do, and then she said it. She said, 'He will crash from this for a good year.' What did you just say? 'Well he has chronic fatigue syndrome from the gulf war,' she said to me. Does he have MCS [Multiple Chemical Sensitivity]? 'The VA doctors keep telling me he does not, but I really think he does. He gets really sick when I clean the house, and lots of drugs will cause him to have kidney failure from chemical reactivity,' she said.
"We gave him 2 bags of normal saline on the 10 minutes to the hospital, but his body did not act normally at all. The wife stressed his extremely low BP, and he fell unconscious while sitting on the toilet. Strange compensatory things were going on that just seem to defy what I know to be true about how the bodyís systems interact. In the [hospital], the chaplain understood the importance of getting [the man's wife] into the ignorant staff. She said if he gets any narcotics he will have liver failure, for example. She did not even bother to tell me about his illness until I heard 'crash for a good year' and it led me to inquire. He trashed my ambulance, vomit on the ceiling. Iíve been disturbed before, but never to the point of tears. I was identifying to the point of feeling all of it, and it was utterly overwhelming. My God."
Without language she had learned from me, my friend wouldn't have known to ask about CFIDS, or to advocate for this patient when she later met resistance from the nursing staff at the hospital. What goes unseen with CFIDS may be life-threatening, and true CFIDS patients tend to hide their diagnosis to avoid the pervasive bigotry and ignorance of the medical establishment.
"Infrequent deaths have been reported," notes the Canadian Case Definition, and the National CFIDS Foundation lists mysterious deaths at its website. The rest of us have a poor prognosis. Only 4-12 percentage of CFIDS patients recover, and the rest remain indefinitely disabled to varying degrees. The fact that many of us linger on indefinitely in a state of extreme illness perplexes researchers. The Web MD article states, on the abnormal heart findings in CFIDS patients, "Given the severity of the findings, [Dr.] Miller wonders -- if heart problems might be a cause of chronic fatigue syndrome -- why more. . .patients aren't dying of heart disease." CFIDS patients are truly defiant survivors.
Searching a vast desert for hidden culprits
The Canadian Case Definition lists the systems and symptoms involved in CFIDS: neuroendocrine malfunction, cognitive and neurological malfunctions, autonomic dysfunction, immune dysregulation, cardiac irregularities, memory loss, crushing fatigue, intractable pain. "People with chronic fatigue syndrome have malfunctioning chemical mediators. Hormones, neuropeptides, the immune system, and the autonomic system are all off balance," reports the website for 'The Infinite Mind.' "Sleep is profoundly disturbed. People with this illness are unable to reach the deep sleep that is restorative sleep. Some of the patients . . .can only sit upright for a few hours a day."
Part of the confusion and apathy around CFIDS has to do with its complexity and totality. It seems to infiltrate everything, and only be fully perceptible through cultivated awareness, because lab tests do not translate into bodily sensations, lost lives, pain. There is also a sense that advocates are fighting the wrong war, digging through vast deserts to find stockpiles of destructive agents when the problem might be more obvious and fixable.
Small things are often overlooked. Large things are unseen.
When the Pentagon recently admitted in a public document that Gulf War Syndrome might have been caused by overexposure to pesticides, for example, they cited causal agents like "pest strips" and "fly baits." Imagine that fly baits and pest strips could fell the most healthy, fit soldiers of a generation, and you will understand the way CFIDS topples lives. The Pentagon's admission makes one wonder about the possibility of a definitive toxicological link between some cases of CFIDS and GWS that has gone unnoticed.
CFIDS may one day redefine "chemical warfare" and "biological warfare." Household chemicals may be as dangerous as nerve gas, and simple biological exposures may lead to devastating disease. According to the CFIDS Chronicle, the CDC is conducting a series of modeling studies that explore "how the illness develops in people who suffer 'insults' to their body systems -- factors such as viruses, drug treatments, other stresses accumulated over the lifespan that may result in CFS and similar illnesses." Soon, we may understand how the most harmless-seeming exposures can cause someone, like me, to be laid flat indefinitely with the illness Dr. Leonard Jason called, in a radio interview, "more debilitating than just about any other kind of medical problem in the world."
The summation of this tragedy, though global, is also very personal.
"The main damper on the occasion"
"Everyone is so sad that you cannot be here for the wedding," writes my Mom from Illinois, about my sister's May 10th wedding. "That is the main damper on the occasion." Celebrations are hard for me to miss, but so are tiny things -- trips to the mall, roller coasters, walks, rides in the car to new scenery, ongoing friendships, school, work. My friends know I can almost never read the books they give me, because of cognitive and visual problems. People have stopped asking me to parties. I feared, as my dog was dying a month ago, that I wouldn't be able to be present for his euthanasia, until I got friends to drive me and a veterinarian to do the procedure in my car. One CFIDS patient advocated to get permission by the city to fill out legal marriage papers in his home, but was denied. The smallest details of life are denied homebound patients, who are often forgotten.
I live most of my life in one room with a futon beside a computer (I can only sit up for limited periods), too sick to move elsewhere, too sick to leave this side of town except on very rare occasions, too sick to go to the hospital, too sick to get tubes and tubes of blood taken, too sick to have most company, too sick to sit up in a mobility scooter long enough for outings, too sick to talk for extended periods of time, yet appearing to be in the pink of health. CFIDS is a desperate place.
So what can you do to help?
1) Stop calling it "chronic fatigue." People don't go around saying they think they have AIDS because they are coughing, or proclaim they have cancer because they have a freckle. Over the years, friends and acquaintances with chicken pox, depression, lingering mono, and flu have all told me they thought they had CFIDS. Even amongst those closest to my illness, ambiguity seems to surround us. Using misnomers adds to the confusion. If you think someone has CFIDS but is undiagnosed, though, you might be right, as nearly 9 out of 10 cases are not diagnosed.
2) Get to know the diagnostic criteria to understand the scope of CFIDS. Then educate and advocate. Tell your doctor, give out literature, and demand that social services accommodate people with CFIDS and related conditions, including those with multiple chemical sensitivities (MCS) who desperately need chemical-free hospital rooms. If you can educate one health care provider by forwarding the free download excerpt of the Canadian Case Definition, adding the CDC's more outdated definition, and providing information from the CFIDS Association (who will send packets of information to health care providers), you will be doing a world of good.
3) Don't be crushed by the magnitude of public resistance. CFIDS activism is held up by a lack of unity. The more you can organize with others, form connections, or even attend the CFIDS Association's annual Lobby Day in Washington, the more you will feel part of positive change. The CFIDS Association also provides a download of a packet of Awareness Day materials on how to contact public representatives and the media. Every action is meaningful.
4) Use one personal contact to make a difference in your community. Do you know someone at a TV station? Ask them to play the CFIDS Association's Public Service Announcement. Does your newspaper print editorials? See if they will print a letter you write, or an excerpt of this letter. Are you friends with an endocrinologist? Educate her. (The CFIDS Association offers a free self-study course for doctors that gives continuing education credits). Do you know a professor? My book, Stricken, has been used at a college text at Stanford University (professors can request review copies from The Haworth Press), and many other CFIDS books make excellent donations to libraries, nonprofit resource centers, etc. Does your child's school use pesticides and other chemicals that might be making students sick? Advocate for alternatives.
5) Write government officials and demand more funding allocations for clinical research. The CDC spent all of its CFIDS funds on other accounts or on epidemiological studies until recently. It is JUST NOW beginning to fund actual research. The studies are promising, and could lead to huge advancement and credibility for CFIDS.
6) Contact nonprofit and religious organizations that provide services to the sick and disabled and ask them if they know about CFIDS, and also if they know about the special needs of accommodating those with chemical sensitivities. If they don't, educate them. Many patients need meals on wheels, rides to medical appointments, and other basic volunteer assistance. Many live in abject poverty and can't get the help they need.
7) Offer to be an advocate for one CFIDS patient. Help this person fill out forms, coordinate help, get housing, apply for disability, or get to a doctor's appointment. You won't believe the amount of difference this will make, and how much it will buoy someone's spirits.
8) Use the resources you have. If your company encourages charitable donations, make sure the CFIDS Association is on the list. If your church does volunteer work, see if they can help a patient or two. If you can make a small donation to a CFIDS organization or arrange a fundraiser, do so. Be creative -- see if a local corporation or grant-giving agency will match the funds you raise privately. Come up with something simple -- a bake sale -- or a wacky media-grabbing fundraising effort, like a CFIDS mattress "rest-in" at a local furniture store.
9) Organize accessible events. Part of what keeps people in the dark about disabilities, and especially non-apparent disabilities, is the segregation of able-bodied and disabled people by the inaccessibility of social events. Organize a wheelchair-accessible, fragrance free, smoke free, sign language interpreted event so that everyone can attend and mingle. Many of us will be too sick to attend, but those who can attend -- and even those who can't -- will greatly appreciate your efforts.
10) Forward this letter to everyone you know. Feel free to reprint the letter without my permission, as long as you provide my signature, web link, and note if the letter has been edited.
11) Let us praise you. If you do any small bit of activism, give a donation, or help a patient, let the CFIDS community know. It makes all of us feel hopeful when we know that people care enough to take action. Support from generous individuals not only inspires us, and inspires more activism, but helps us to cope with a very difficult illness.
Spread the word -- help us get our lives back.
11 Years Down
Editor, Stricken: Voices from the Hidden Epidemic of Chronic Fatigue Syndrome
"ONE OF THE VERY BEST BOOKS ON THE TOPIC and a must-read for people with CFS, their friends and family, and the public. " -- National Fibromyalgia Association
"A BOLD, ARTICULATE REBUTTAL to the many myths, criticisms, and skepticism surrounding this disease." -- Journal of Pain & Palliative Care Pharmacotherapy
The CFIDS Association (publishes The CFIDS Chronicle)
National CFIDS Foundation (publishes The Forum)
Massachusetts CFIDS Association (publishes The Update)
The Haworth Press
publisher of the Journal of Chronic Fatigue Syndrome and Stricken: Voices from the Hidden Epidemic of Chronic Fatigue Syndrome
The Canadian Expert Consensus Panel Clinical Case Definition for ME/CFS
website (with excellent 30-page download of case definition):
"Pesticides Tied to Gulf War Illness" by Suzanne Gamboa, Associated Press, 4/24/03.
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 2002 Letter or 2001 Letter.