A Mysterious Disease

By YIN PUMIN

A Mysterious Disease

By YIN PUMIN

People claim to suffer from an infectious condition dubbed HIV-negative AIDS

In recent years, a mysterious “malady”has left thousands of people in trepidation. People suffering from the disease display symptoms very similar to AIDS, such as swollen lymph nodes, subcutaneous bleeding, joint pain, fatigue, night sweats and emaciation, but they repeatedly test negative for HIV. This mysterious infectious condition has been dubbed “HIV-negative AIDS.”

On April 6, the Ministry of Health dismissed the concerns, saying no new virus had been found linking the so-called HIV-negative AIDS. Medical experts believe patients might be suffering from a kind of psychological AIDS phobia.

On May 10, the ministry held a press conference, restating no evidence suggested the patients suffered from an infectious disease.

But, Zhong Nanshan, an outspoken health expert, who first gave out warnings of the SARS epidemic in 2003, claimed on May 6 HIV-negative AIDS is more than a mental health problem, citing an independent study he led.

“The condition was not simply caused by mental problems,” Zhong, Director of the Guangzhou Institute of Respiratory Diseases, told the Guangzhou-basedNew Express Daily, adding most of the alleged sufferers involved in his study suffered reactive arthritis.

Just panic?

Since 2004, a group of people living with HIV-negative AIDS have been obsessively subjecting themselves to health checks, seeking an explanation for their AIDS-like symptoms.

They reported a history of high-risk sexual encounters or blood transfusions preceding the onset of symptoms. But, not one of the people has tested positive for the HIV virus. Despite these negative results, their AIDS-like symptoms have progressed.

Confused and anxious, they gradually came together through the Internet by creating websites, communities and support groups. They shared their conditions and feelings and tried to seek help and attention from the government and public.

In 2009, they came to the attention of the Ministry of Health. The ministry’s spokesman Deng Haihua said they frst received a report in June 2009, and the Chinese Center for Disease Control and Prevention (CDC) started to investigate the situation a month later.

In 2009, the media began paying attention to and reporting the cases.

The Hong Kong-basedOriental Daily Newsreported people infected with so-called HIV-negative AIDS believed they had a mysterious HIV-like virus or an AIDS-like condition unable to be detected with current testing technology.

The newspaper reported the mysterious virus could be spread through saliva and blood.

In response, Zeng Guang, CDC’s epidemiology chief scientist, conducted the country’s first government-initiated study, which involved experts in infectious diseases and mental health professionals.

In 2009 and 2010, the CDC offered free HIV tests to the 59 patients. No evidence was found of HIV or any new virus.

They were tested for HIV, and their CD4 cell ratio in blood, which is an important indicator of the immune system, was found to be at normal level.

There was no mutation of the AIDS virus found in the sample tests, said Liang Lianchun, a member of the CDC special research team.

The CDC performed a second test in May 2010 to check whether the patients were carrying xenotropic murine leukemia virus-related virus (XMRV), a virus discovered in 2006 that is believed to be connected to chronic fatigue syndrome. The tests were again negative, and the CDC concluded the patients were not suffering from chronic fatigue.

To end the panic, the CDC collected and sent blood samples from each patient to the virus laboratory at the University of Southern California in the United States in January. At the end of March, there was no report of any unknown virus found in one third of the samples, Zeng said.

“Since no new virus has been found, I frmly believe this group cannot be carrying a new human virus. The reason we sent the blood samples abroad is to prove to them that the illness is only in their minds,” he said.

On April 6, the Ministry of Health published the results. Deng said an epidemiological probe conducted in February and March this year among the target patients in Beijing, Shanghai, Jiangsu, Zhejiang, Hunan and Guangdong found no sign of infectivity of the symptoms.

To date, none of the tested patients suffered any infection-caused organic abnormality, and there was no case of any serious illness or death among them.

“We are forced to conclude that HIV-negative AIDS does not exist and there isno new unknown virus causing these patients’ symptoms. It is our opinion that their condition is caused by some kind of AIDS phobia,” Deng said.

DON’T PANIC: Zhong Nanshan, Director of the Guangzhou Institute of Respiratory Diseases, discloses the results of his team’s research on the 60 people who claimed they were suffering from a mysterious infectious condition dubbed HIV-negative AIDS on May 6, dismissing the danger of an AIDS-like virus

Zeng said AIDS phobia was an irrational fear of HIV and AIDS, with a state of intense anxiety and obsessive fear of suffering from AIDS, a fear so strong and overwhelming that not even a negative HIV test will put the fear to rest.

On April 11 and May 10, the Ministry of Health reconfirmed the conclusion at its routine press conferences.

But the patients, especially those

who participated in the study, refused to accept the fndings and the statement about “AIDS phobia.” They asked health authorities to investigate further.

“I don’t agree my symptoms were caused by an AIDS phobia,” said Yang Cheng, a 26-year-old patient. “I tested negative, but I still have the symptoms.”

“We need a more convincing explanation from relative authorities,”another patient Lin Jun told China News Service.

Other possibilities

While medical experts believe the patients might suffer from a kind of psychological AIDS phobia, others said the possibility of finding a new virus in the future cannot be ruled out.

Wu Zunyou, Director of AIDS Prevention Department of the CDC, said after the ministry’s announcement medical tests, especially for such complicated diseases, were not absolute.

In an earlier, yearlong blood test conducted by the Shanghai Institute of Virology, fve people in the group were found to have the same unknown virus, Wu said.

“What I can say is that it is defnitely not the virus that we know to cause AIDS. The virus’ sequence from the fve blood samples is similar, but we need more time to study exactly what it is,” he said.

Zeng began contacting the patients through their Web support group in July 2009. He said, with two thirds of the samples remaining untested, there was still a chance the U.S. lab may fnd something the ministry missed.

“The patients are experiencing real symptoms which are not the result of a mental condition,” Zeng said.

“I have AIDS-like chronic fatigue syndrome. It has been clinically diagnosed. I believe what makes me living proof of AIDS is similar to this mysterious autoimmune disorder. And yet medical authorities appear unable or unwilling to acknowledge the possibility,” a patient with the pseudonym Lin Chang wrote on his online blog.

Two years ago, Lin became seriously ill with what appeared to be AIDS. Soon after, he developed swollen lymph nodes, subcutaneous bleeding, joint pain, fatigue and extreme weight loss.

Three months later, his wife developed similar symptoms. The couple decided to send their 13-year-old son to his grandparents.

“I can pinpoint exactly when my undiagnosed illness spread from my bodyto another. I am the link in a chain of systemically undiagnosed, sexually connected people. Whatever I am suffering, it strongly resembles the classic AIDS disease,” he wrote.

He said many people with chronic fatigue syndrome do not like to talk about the immune abnormalities that they share with AIDS patients. Most patients would rather be told they have the loosely defned chronic fatigue syndrome than AIDS.

From March 31 to May 3, Zhong of the Guangzhou Institute of Respiratory Diseases led a team in conducting clinical investigations for 60 of these patients.

The team was made up of researchers from the No.1 Affiliated Hospital of the Guangzhou Medical University and the State Key Laboratory of Respiratory Disease.

They collected more than 260 samples from 60 patients from 16 provinces and municipalities, including 52 males, whose average age was 34.2.

The patients had shown symptoms for periods ranging from three months to 10 years.

After clinical observation, they decided to test the patients for six common bacteria or viruses. Their studies found 48 patients tested positive for at least one of the six pathogens.

Of these 48 patients, 33 tested positive for the Epstein-Barr virus (EBV), a very common virus of the herpes virus family. The other fve viruses were related to high-risk sexual contact.

In the 24 patients examined for knee diseases, 10 showed abnormalities in their knees, and in the 38 examined for eye diseases, 20 were diagnosed with conventional eye diseases.

Zhong said 12 patients agreed to sit psychological tests and seven were found to have abnormal conditions.

The researchers did not detect HIV positive for all the patients, but Zhong did not entirely concur with the Ministry of Health’s fndings that the group was basically healthy apart from psychological issues.

“We admit that their conditions could be made worse due to psychological factors,” he said. “But we do not agree there was nothing wrong with the patients. We have found them carrying viruses that could be contracted via unprotected sex. A large majority of these patients had extramarital sex and their symptoms were triggered or became obvious right after the sex act.”

Zhong said he couldn’t conclude they were simply suffering from sexually transmitted diseases. There was also no evidence suggesting there was a new, unknown virus affecting the patients and further studies and tests would be needed before they could confrm a diagnosis.

Zhong urged people to avoid unprotected sex and stop sharing dishes in order to prevent contact with such viruses.

Yang, a patient who participated in Zhong’s research, said he was grateful for Zhong’s efforts.

“At least, we now know we have been infected with known viruses,” Yang said.

Referring to the EBV, Deng with the Ministry of Health said they had consulted Zeng Yi, an expert with the Chinese Academy of Sciences who has studied the EBV for more than 50 years. Zeng dismissed the possibility of the virus causing HIV-negative AIDS.

“Further research needs to be conducted in order to determine whether the EBV is the cause of the group’s symptoms,”Deng said.

59 reports of people with the condition in Beijing and Shanghai, as well as in the provinces of Jiangsu, Zhejiang, Hunan and Guangdong.