Death Highlights Painful Condition

Many Sufferers Struggle to Make Others Believe Pain of Myalgic Encephalomyelitis

Patients with CFS and ME often suffer a number of painful ailments — but have trouble getting others to believe their condition is real.

The arrest of a British policeman’s wife on suspicion of the “mercy killing” of her ill daughter has drawn attention to a controversial and often misunderstood condition, known as myalgic encephalomyelitis (ME). Kay Gilderdale, 54, of Stonegate in East Sussex, is suspected of being involved in the death last week of her daughter Lynn, 31, according to reports in British media. She was reportedly released on bail as police investigate the case.

Tony Britton, a publicist for the ME Association in the United Kingdom, said that while a doctor with the organization has been in touch with the Gilderdale family, the family was not speaking with the press and it remained unclear if they had hired a lawyer.

ME, which is often used synonymously with chronic fatigue syndrome (CFS), is characterized by symptoms that can include, as the name suggests, a lack of energy, as well as flu-like symptoms. It affects women much more often than men.

The diseases are similar to others, like irritable bowel syndrome (IBS) and fibromyalgia, in that the diagnoses can often overlap and a cause of the symptoms can be difficult or impossible to pinpoint medically.

Nonetheless, doctors, say, the illnesses themselves are quite real.

“It’s not a disease as much as it is a broad spectrum of feeling awful,” said Dr. Nortin Hadler, professor of medicine and microbiology/immunology at the University of North Carolina at Chapel Hill, and author of the book “Worried Sick: A Prescription for Health in an Overtreated America.”

“Essentially this is one spectrum of feeling really awful and having a tremendous number of unpleasant somatic experiences,” Hadler said.

The number of people suffering from the illness remains unclear. A 2007 study by the CDC found that 2.5 percent of people aged 18 to 59 in Georgia were suffering from the ailment, although the researchers noted that this was eight to 10 times higher than previous estimates. The disease has been pejoratively called “Yuppie Flu” because it was thought to afflict upper class women, Hadler explained. But while those women may have been the ones getting most of the treatment, studies have found that these symptoms afflict all social classes at equal levels.

However, patients with these ailments may still face a stigma because they are perceived to be faking their illnesses.

Cynthia Touissant suffers from fibromyalgia, and runs the advocacy organization For Grace, which represents women suffering from a variety of chronic pain problems.

“That’s what’s so frustrating about chronic pain, it’s so hard to get the right diagnosis,” she said of her condition. She currently uses a wheelchair and said that among her worst symptoms is the inability to sleep some nights.

“The first thing I always say in the morning is ‘maybe I’ll sleep tonight,'” Touissant said.

She also suffers from persistent pain in her waking hours.

“It feels like I’ve been doused in gasoline and lit on fire,” she said.

While recent symptoms have made her suspect she might also have CFS, Touissant fears having a doctor confirm her suspicions.

“It’s too scary for me to get the diagnosis,” she said.

Confirming diagnoses can still be tricky, because there are no confirmed origins of the pains suffered by those with CFS, ME or similar painful illnesses.

“There’s no underlying disease that anyone has ever been able to reproducibly define,” Hadler said. But he maintained that people with the ailment are suffering, even if they do not have anything that be found wrong with them physically.

“It’s a very severe illness experience with no damaging disease at the time,” he said.

Hadler notes that some researchers believe the diseases are caused by a virus, but if it exists, that virus has yet to be clearly identified.

While doctors do not yet know exactly how to treat diseases like ME and CFS, they have found some courses that have helped.

“There is a high co-occurrence of some psychiatric problems, especially depression,” said Dr. James Rundell, a professor of psychiatry at the Mayo Clinic.

While he said that it isn’t certain whether the depression is caused by the illnesses themselves or by the same underlying problem, “Treating depression … improves their quality of life and improves outcomes.

“We focus here on trying to use a lot of behavioral activation, and trying to get people moving,” Rundell said. “We don’t try to divide up into ‘is it psychiatric or is it medical,’ because it’s a complex interaction.”

While research continues to focus on the origins of the diseases, he said that does not help patients currently afflicted with the illnesses.

“There’s also the fact that it’s not entirely clear what all the causes are, so to simply write someone off as having a psychiatric problem isn’t going to be very helpful to them,” he said.

Despite a lack of evidence as to what is behind diseases like ME and CFS, doctors say that more research is needed in these and many other illnesses that do not have clear causes.

“Medicine is still at a place where we have lots of conditions that we’re not exactly sure what’s causing it,” said Leonard Jason, a psychologist and director of the center for community research at DePaul University.

He noted that with many types of pain, like chronic lower back pain, people cannot find a cause, but that should not be taken as evidence there isn’t something wrong. He said the frustration can also show up in parents who cannot get their children’s ailments treated.

“Many of them are accused of participating in their child’s illness,” he said.

In the current case, Jason points to the fact that the mother was described as an advocate fighting for recognition of the illness.

“Isn’t it interesting that here her daughter dies and she’s under investigation?” he said.

Parents of ill children may worry about being seen as enablers, but people with the illness worry that no one believes their accounts of their ailments.

Ellen Slawsby, a psychologist who directs the Mind/Body Chronic Pain Service at Massachusetts General Hospital notes that patients with these ailments differ greatly from patients who would fake these illnesses.

“These have been highly successful, motivated women,” she said, noting that these patients are willing to “jump through hoops” in an attempt to get back the life they had before the disease.

Unfortunately, she said, finding a way to regain that life may take a while. We’re really in an infancy as far as medicine goes,” Slawsby said.

——- By JOSEPH BROWNSTEIN
ABC News Medical Unit