For Emily White, it felt like the worst flu ever.

It was in the spring of 2006, and White was pushing through her final term at college.

Sure, she was stressed and run-down.

But she just didn’t understand how her symptoms could be so intense.

She was exhausted, yet sleep was impossible.

This didn’t feel like run-of-the-mill anxiety, though.

It was something physical.

All over her bodythroat, armpits, groinher lymph nodes swelled up, and she ran a fever.

Her face grew lumps, painful and hot, like cystic acne that refused to get better.

She dragged herself to class but had trouble putting words together.

And then, within a couple of weeks, the lumps on her face sprouted…something.

White’s “flu” persisted for months.

Her fingers swelled, and her joints ached.

She swung between nights of nerve-twanging insomnia and days when she slept so deeply she never heard her alarm.

In her first semester of law school, her grade point average plunged to 1.2.

As she straightened up from the faucet, she caught her image in the mirror.

When she scraped it off, it left a shallow red scar.

The next day, she broke out in a swollen, oozy rash.

A week or so later, confusion set in.

After a couple of months, increasingly sick and unable to focus, she sold her business.

The two women could be imagining things.

They could be mentally ill. White and Aitken say they are absolutely sure they are not crazy.

“I’d rather have cancer,” White says.

“I know how that sounds.

But at least then you get sympathy.

And a treatment plan.”

The syndrome is being referred to as Morgellons.

At the time White moved in with her parents, she’d never heard of Morgellons.

But mono couldn’t explain the papules that wouldn’t heal or the fibers that grew out of them.

A second doctor did a blood test for various types of cancer.

She saw a rheumatologist, who ruled out fibromyalgia.

To White, none of the doctors' explanations made sense.

More worrisome to her were the knotty lumps that had formed under her scalp.

One night, in a fit of rage and fear, she chopped it off at the scalp.

When she bathed, she says, black specks and white crystals emerged from her skin.

The group looked reliable to White.

More compelling were the accounts by self-described patients at the website.

Many people who posted said they were being treated for Lyme disease, an illness transmitted by infected ticks.

White initially tested negative for Lyme but then tested positive for antibodies to the Lyme bacterium.

Her neurologist stuck an intravenous line of antibiotics into her arm.

But she was not recovered.

“I don’t know what medicine is powerful enough to make it stop.”

New diseases emerge more frequently than most people realize.

There has been roughly one per year since the 1970s.

Women complained of chronic pain, stiffness and fatigue for decades before organized medicine recognized the syndrome as fibromyalgia.

The itching and crawling sensations, the papers say, are the effect of neurons misfiring.

The rashes are the result of patients obsessively scratching.

In other words, it’s all in the patient’s head.

Nevertheless, the authors say, doctors shouldn’t scold or correct patients who claim to have contracted Morgellons.

Instead, they should establish rapport, so as to get the sufferers on the right psychiatric drugs.

Patients, naturally, feel patronized.

With medical opinion so uniformly against them, they made their own Morgellons community on the Internet.

where people compare symptoms and discuss such topics as trying veterinary drugs as remedies.

Ironically, though, the virtual Morgellons community might be undermining the validation its sufferers are seeking.

That is not exactly what has happened with Morgellons.

Its community accumulated over several years, and most of its members have never met.

Still, cybersharing may have profound suggestive power.

Chat groups and social-networking sites have been accused of fostering anorexia and suicide clusters.

That sufferers are sharing information about Morgellons on the Internet could also foil the search for an explanation.

“Say you have an outbreak of food-borne illness,” Dr. Jones says.

“If you ask people to tell you their symptoms, they might say, ‘Nausea and vomiting.’

It’s not a conscious thing; it’s the power of suggestion.”

“If there are thousands of them, that’s another thing.

That is very compelling and at least merits a hearing.”

Dr. Pearson trained in the raucous, violent emergency rooms of downtown Chicago before heading to the CDC.

She says it is time for the CDC to tackle whatever the illness may be.

So the agency is moving cautiously.

The study is a joint project with the northern California research division of the giant HMO Kaiser Permanente.

In May and June, investigators began inviting possible sufferers to Kaiser’s Oakland offices.

Finally, volunteers give blood and skin samples for a wide range of lab tests.

Is it primarily the old or the young?

Is it primarily people from certain racial or ethnic groups or socioeconomic backgrounds?"

“This [research] will put a face on it.”

She saw several doctors who offered different diagnoses: dermatitis, eczema, psoriasis.

“They did the best they could with what they had been given in medical school.”

And, like White, she searched on the Internet for accounts that matched her symptoms.

But the topic nagged at him, and a few days later he called up the search again.

“But 24 hours later, FedEx packages started arriving.”

He fished the samplestoo small to study without a microscopeout of the packages and popped them onto a slide.

“I didn’t know what to make of them,” Wymore says.

They looked ill, sometimes thin and lacking in energy, and some had slurred speech.

They were stumped, he says.

The fibers did not lose their color in any solvents or detergents.

At 1,600 degrees Fahrenheit, they did not burn.

“But there is no question that Morgellons is some sort of physical pathology.

It is not a psychiatric disorder.

Hope they figure this out.'”

“It’s unnerving to know more about your condition than your doctor,” White says.

“Nobody really knows what is going on.”

As for White, she had been feeling better with fewer visible fibers on her skin.

Photo Credit: Nathan Perkel