History of the mystery of what Chronic Fatigue Syndrome is and what it should be named.
|Although it affects more people than AIDS or breast cancer, Chronic Fatigue Syndrome (CFS) remains a puzzling and under-diagnosed threat to public health. Even its very name adds to the mystery, as some experts advocate replacing CFS (or the variant CFIDS, for Chronic Fatigue Immune Dysfunction Syndrome) with ME, for myalgic encephalomyelitis or myalgic encephalopathy, terms long used by Canadian and European medical experts but uncommon in America.
Adding to the puzzle are a number of possibly related ailments, ranging from fibromyalgia (FM) to Epstein-Barr Virus (EBV) to chronic mononucleosis, making the question of what CFS is (and is not) all the more difficult to answer.
However, the mystery of CFS is closer to being solved, thanks to a number of recent breakthroughs including the first-ever national media campaign sponsored by the CFIDS Association of America and the Centers for Disease Control (CDC).
The CFIDS Association of America has 20,000 members and donors, and works on a number of fronts, especially on lobbying Congress to allocate more funds for CFS research. It began in 1987 in Charlotte , North Carolina as a patient support group of three people.
The current media awareness campaign ranges from magazine ads to the traveling photo exhibit, "Faces of CFS," an extension of Dr. David Bell's 2002 book of the same title. The exhibit consists of seven-foot-tall banner portraits of six CFS patients and two doctors who treat them, including Bell, who was forced to become a CFS expert when his small New York town experienced an outbreak of more than 200 cases in 1988.
After a stop in San Antonio in during CFS Awareness Month, the banners kept touring the country until at least the end of 2008. One of the exhibit's faces is CFS patient Rich Carson, who lives in Santa Barbara and runs ProHealth, a vitamin mail-order business catering to the special needs of CFS patients. He recently organized the CFS Name Change Advisory Board, a panel of experts who together called for changing the name Chronic Fatigue Syndrome (CFS) to ME/CFS (or CFS/ME).
Karen Lee Richards, writer and co-founder of the National Fibromyalgia Association, explained recently, "The name "Chronic Fatigue Syndrome" trivializes a serious illness by naming it for one of its symptoms, namely fatigue ... Since CFS is not a medical-sounding name, family members, friends, and even doctors tend not to take it seriously. ...A medical-sounding name like Myalgic Encephalopathy has a better chance of being taken seriously than Chronic Fatigue Syndrome, which just means you're tired."
"I like the name CFS/ME since this is the first time the two sides of the Atlantic have agreed that these are actually one entity," agrees Dr. John Chia, a Torrance doctor who specializes in CFS. "The disagreement between the Americans and the British investigators ha[s] resulted in major delay in the elucidation of this illness."
Changing the name would help clear up some of the confusion demonstrated in a recent column by Joyce Johnson of the Wellness Center of America, in response to the question, "Is chronic fatigue an illness?" She answered, "No, chronic fatigue is actually a symptom." She suggested "preventing" chronic fatigue with "high energy foods, vegetables, wheat grass juice, sprouted breads, brown rice, millet, yogurt ...organic eggs, wild salmon, sardines."
Many CFS patients may counter that, whether chronic fatigue is a symptom or an illness, all the organic eggs in the world won't help them get out of bed. Lauren Hillenbrand, who wrote Seabiscuit while in bed with CFS, said she first knew she was sick when she could not out of bed if the building were on fire.
While cocktail party jokers may smirk at the name "Chronic Fatigue Syndrome" with, "I'm tired all the time, too." one CFS patient likens the fatigue to being hit by a sledgehammer. It's not "just" being tired, but rather a stunning, numbing, disorienting fatigue severe enough to impair vision, speech, and mental processes.
Another patient went for weeks when she could only get out of bed once a day and then just long enough to hit the local Kentucky Fried Chicken drive-through for some mashed potatoes, the best food that calmed her stomach upset, yet another of CFS's many symptoms. She lived alone and was too fatigued to shop or prepare anything else.
Dr. Linda Miller Iger in the nineties uncovered a distinct CFS profile that helps physicians and therapists differentiate between CFS and other chronic illnesses such as depression. She noted how the level of fatigue may leave the patient sensitive to light and sound, and even affect speech, "Speech may become minimal, and telegraphic in nature, which may be construed as insolence, disinterest, or worse, stupidity."
Kimberly McCleary of the CFIDS Association of America says, "This is quite different from a fatigue that a normal person would feel."
She advises that if someone responds to the news that a person has CFS with, "I'm tired all the time, too," the CFS patient may ask if their day-to-day activities are so severely impaired they should see a doctor.
"People with CFS are as sick and as functionally impaired as someone with AIDS, with breast cancer," said Dr. William Reeves, the lead expert on CFS at CDC. He and McCleary noted that likely one million people have CFS but only 20% have been diagnosed, according to a 2007 CFIDS Association survey. It found that while about 200,000 American CFS cases have been diagnosed, there may be as many as 800,000 undiagnosed cases, making CFS more common than AIDS or breast cancer.
In 1999 Reeves blew the whistle on the CDC's misallocation of funds that Congress earmarked for CFS research. McCleary explained that Reeves informed the CFIDS Association that no lab studies were ever done as were required by the funding.
"What you have been told is much inflated over what I'm permitted to spend," he told her.
At the Association's urging, a federal investigation uncovered that the CDC had diverted $12.9 million to other programs, and led to the full restoration of CFIDS funding in 2005.
Women, particularly in their forties and fifties--are four times more likely than men to be diagnosed with CFS. Blacks and Hispanics also appear to be at high risk. But Frank Rogala, a rock musician who lives in Anaheim, is one white male who knows what CFS means. The disease struck him with such force a few years ago that it sometimes left him wishing he were dead.
"I feel like someone poured sand in my veins and stuffed my brains with cotton," he describes. "The fatigue, I tell people, it's like, think of the most tired you've ever felt, then imagine ten times worse, and you still won't get it."
At first doctors merely focused on his suicidal level of depression, giving him treatments that at times made things worse. Then he stumbled upon an article about Dr. Martin Lerner's Treatment Center for Chronic Fatigue Syndrome.
He went to the center in Michigan and discovered he was infected with all three viruses Lerner believes may cause CFS. "And at a high level, too," Rogala recalls. "He got the test back, looked at it and said, "You're in pain." I said yeah."
Rogala is now undergoing Lerner's course of treatment. He flies to Michigan every month for more medication and blood work. The travel and medical bills are about $2000 per month. Treatment consists of large doses of the potentially dangerous anti-viral drugs Valtrex (generic name valacyclovir, normally used to treat herpes), and Valcyte (generic name galganciclovir). Lerner uses the drugs off-label, meaning, for an experimental purpose not yet approved by the FDA.
"But this is my fourth good day in a row and the doctor told me what was going to happen and when," Rogala says over lunch at the Anaheim House of Blues.
"The first good day I had, I realized, I haven't felt like this in so many years. This is the way I'm supposed to feel. What have been enduring all this time?"
Not all CFS patients, however, experience the same symptoms or respond to the same treatment in the same way as Rogala. Adam Lesser's CFS began in 2003 with an upset stomach, a sort of flu that came and went for a while. Not until 2004 did the characteristic super-debilitating fatigue show up. He had to quit his news job at NBC. He's now a part-time student in Santa Monica, struggling with studying chemistry and biology, trying to identify work he can do while he's disabled with CFS.
Lerner, the doctor whom Rogala credits with his improvement, works from personal experience. According to his Web site, he fell ill in 1988.with what he first thought was heart disease. Later he suspected there was more to the picture and began studying how several viruses may affect the heart in CFS patients. In 1996 he began antiviral drug therapy and his heart function returned to normal.
Lerner theorizes that CFS is a prolonged chronic mononucleosis following infection, particularly of the heart, with one or more of three viruses, Epstein-Barr virus (EBV), herpesvirus6 (HHV-6) or the Human Cytomegalovirus (HCMV or CMV).
"I began to look at patients with the CFS for evidence of involvement of the heart, and experience with the two mononucleosis viruses (EBV and HCMV). The findings have been remarkable!" Lerner claims.
Further he believes he's found a "smoking gun" that links CFS with a viral infection that persists in the heart.
His research overlaps with the work of Stanford researcher Dr. Joseph Montoya, who in 2006 reported what he called remarkable improvement in nine of twelve CFS patients treated with Valcyte.
"While EBV can still be a trigger, the illness has evolved into a post-infectious phenomenon," argues Bell , one of the doctors featured in the in the CFIDS Association's "Faces of CFS" traveling exhibit. His research now focuses on aspects of CFS that do not involve EBV.
"Why don’t any doctors out here [in California] seem to know anything about it [such studies]?" Rogala wonders. While traveling in Michigan, he says, he met a doctor that knew nothing about Lerner or his studies, but knew the protocols used in the studies.
Chia is a CFS specialist in Torrance, California, but he questions the findings of Lerner and Montoya. His research appears more indicative of the stomach virus that Lesser describes himself as suffering from.
Chia explained via e-mail, "We have different focus on what virus is the main cause of CFS. This disease can be caused by a number of viruses. HHV-6 and other herpes viruses are not the major causes of this illness but certainly can be treated with the type of antiviral drug Dr. Montoya is using. I have used the same drug for at least 7-8 patients but I did not see as impressive result[s] as Dr. Montoya has published." Chia's recently published a study in the Journal of Clinical Pathology discussing how 80 percent of CFS patients have higher viral infections
Chia concluded his tests show trigger viruses that left a more chronic form of infection, "Most of the work on enteroviruses were done by the British researchers. I am the first American to confirm their findings."
Chia theorized the viruses must be hiding in the tissues, and the principle target for enteroviruses is the gastrointestinal tract. The virus is acid resistant, so the stomach (not the heart) was the most logical place to look for the virus.
According to the CFIDS Association, the CDC recently announced CFS is "real" (which CFS patients have been insisting for years) but Americans still treat sufferers with disdain. A recent New York Times article shows how the results of the long-delayed CDC lab studies now link the condition to "generic mutations and abnormalities in gene expression involved in key psychological processes." In plain English that means people with CFS are sick.
McCleary says that, for the approximately 25 percent of patients disabled with CFS who cannot work, the SSA issued a policy ruling, SSR-99-2p, in 1999. She says, "We hear consistently from attorneys and patients that the process is much easier to get benefits and keep them through renewal processes than was the case before SSR 99-2p."
On the CDC web site, evidence of the many complex mysteries surrounding CFS that remain to be answered are indicated by the statement that about 40 percent of people who report symptoms of CFS also have a another previously unrecognized medical or psychiatric condition (such as diabetes, thyroid disease, or substance abuse).
There are obviously many puzzle pieces yet to be found before medical science can finally answer the question of what CFS is.