Are thermal cameras a magic bullet for COVID-19 fever detection? There’s not enough evidence to know

Scott Adams, Deakin University; Abbas Kouzani, Deakin University, and Tracey Bucknall, Deakin University

During the frenzy of the past few months to secure resources for the fight against COVID-19, the demand for technologies that promise to detect symptomatic individuals has been sky-high. However, not all proposed solutions work as advertised.

Thermal cameras are already being implemented as a means of detecting people with fever-like symptoms in high-traffic areas such as hospital entrances, shopping centres and office buildings, and potentially mass-attendance sporting events when they resume.

People who show up as having high temperatures can then be directed to further assessment and encouraged to isolate to help curb the spread of COVID-19.

But the evidence suggests thermal cameras are far from a perfect solution, offering limited accuracy if set up incorrectly, and raising data privacy concerns.

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Coronavirus: how long does it take to get sick? How infectious is it? Will you always have a fever? COVID-19 basics explained

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Accuracy is important

Despite the urgency of the COVID-19 situation, we cannot abandon accuracy. If temperature screening incorrectly detects many people as having a fever, then healthcare services will be burdened by needless secondary assessments.

On the other hand, if the technology fails to detect many people who do have symptoms it may create a false sense of security and lead to future COVID-19 clusters. This is especially important in high-risk environments such as aged-care facilities or hospitals.

The most accurate tools for measuring temperatures are the ones used to assess hospital patients for fever, such as mouth, ear and rectal thermometers. However, these tools require training to use correctly, and bring patients into direct contact with a device which must then be cleaned before it can be used again.

The requirements for training and cleaning are a major drawback during a pandemic and are the reason these tools are not widely used for mass fever screening.

Why thermal cameras?

As a result, both government and industry are deploying automated systems involving infrared thermal cameras instead to perform fever-screening from facial temperature measurements. Many such systems have already been deployed in high-risk locations across the country.

These systems are sometimes seen as a magic bullet for mass fever screening. Measurements are almost instant, there is no contact, and data can be viewed at a distance, so there is minimal disruption in public places and little risk of cross-contamination or harm to the operator. And the system can be used with minimal training.

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Lack of evidence

However, there is a glaring lack of clinical evidence for thermal camera-based fever screening solutions. So far there has been no multi-site, large-scale independent clinical trial to assess the accuracy of these systems. To our knowledge, no thermal imaging system has been approved as a medical device by the Australian Therapeutic Goods Administration.

This is concerning, particularly as these systems are being trusted to protect high-risk areas. It is possible that in the rush to find solutions to keep people safe, the limitations of such systems have been overlooked.

The limits of thermal cameras

The most crucial limitation of these technologies is biological. The skin on a person’s face is not one single temperature, and does not uniformly reflect their core body temperature, which is needed to assess fever.

After entering a building on a cold winter day, a person’s forehead temperature stays unusually low for minutes afterwards. This could potentially allow a feverish person to be incorrectly screened.

Research suggests the region of the face that best reflects core temperature is the inner corner of the eye. This is a very small target, so to measure this area an individual must be very close, and directly facing the camera. Even a small change in angle has been found to alter the readings.

Even if the system can measure the right part of the face, many other factors can change the reading, such as room temperature, airflow, wearing glasses, image background, and skin dampness.

In 2017, the International Organization for Standardization (ISO) released guidelines on how to deploy thermal camera systems to account for these factors. The recommendations include only measuring a single person at a time, keeping the subject and camera close, and ensuring each person pauses while directly facing the camera.

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The coronavirus pandemic highlights the need for a surveillance debate beyond ‘privacy’

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Privacy problems

In addition, many thermal camera systems include facial recognition capabilities to make it easier to identify anyone who triggers an alert. Hospitals, shopping centres and office buildings around the world are now receiving facial images of every person who enters their facilities.

Significant questions remain over whether these organisations are up to date with the required security practices to collect and store this type of private information safely.

In places such as aged-care facilities and hospitals where the impact of an outbreak could be catastrophic, there is an ethical obligation to follow best-practice protocols, and the advice of experts.

Currently, in the case of thermal cameras for mass fever screening, the obligation would be to ensure the systems follow the recommendations put forward by the ISO, and avoid providers who don’t comply.

More research is needed to investigate this technology and begin developing a library of reliable independent research. This is necessary to make sure decisions about this technology can be made on the basis of firm evidence during COVID-19 and future pandemics.

Scott Adams, Postdoctoral Biomedical Engineering Researcher, Deakin University; Abbas Kouzani, Professor of Engineering, Deakin University, and Tracey Bucknall, Professor, Chair in Nursing & Director of Nursing Research, Alfred Health, Deakin University

This article is republished from The Conversation under a Creative Commons license. Read the original article.

What is autoinflammatory disease, the rare immune condition with waves of fever?

from www.shutterstock.com

John Silke, Walter and Eliza Hall Institute and Najoua Lalaoui, Walter and Eliza Hall Institute

Just over 20 years ago, people from three generations of an American family were referred to the National Institutes of Health (NIH) in Washington DC with an unknown disease.

They were ten to 82 years old and had symptoms including monthly episodes of unexplained high fevers (up to 41℃), lasting two to seven days.

They also had painful swollen lymph nodes, enlarged spleens and livers, abdominal pain, mouth ulcers, joint pain, and a patchwork of other symptoms.

The symptoms, which they’d had since shortly after birth, seemed like an inflammatory reaction. However, doctors could not trace the episodes to an infection.

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Explainer: what is inflammation and how does it cause disease?

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We now know these symptoms are typical of autoinflammatory diseases – rare conditions with seemingly unprovoked episodes of fever and inflammation.

Because the inflammatory episodes occur regularly, the diseases are also known as “periodic fever syndromes”. In addition to being painful and debilitating, some of the conditions can damage vital organs, such as the heart and lungs.

What causes autoinflammatory disease?

Autoinflammatory diseases are caused by abnormal activation of the innate immune system, the body’s first-line defence against invading pathogens.

The innate immune system is a hard-wired response that can quickly mobilise to fight foreign invaders. Among its many roles is the release of cytokines.

These are immune messengers critical for alerting and recruiting other cells to the fight, increasing blood circulation and inducing fever. More about cytokines later.

However, in autoinflammatory diseases, invading microbes don’t cause the fever and inflammation. Instead, genetic changes (mutations) lead to the innate immune system being activated for what appears to be no reason, causing uncontrolled inflammation.

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Explainer: what is the immune system?

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Autoinflammatory diseases typically begin in childhood, often from birth, and are lifelong conditions. The genetic mutations can be passed from parents to their children, leading to multiple cases of disease in an extended family.

Autoinflammatory diseases are different from autoimmune diseases, such as multiple sclerosis, which are caused by defects in the adaptive immune system, a different arm of the immune response.

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Explainer: what are autoimmune diseases?

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There are a number of different autoinflammatory diseases, often caused by different genetic mutations.

How do we treat autoinflammatory disease?

Autoinflammatory diseases cannot be cured, and treatment is usually to relieve symptoms during an attack. Patients are often treated with high doses of corticosteroids, a broad-brush approach to suppress the immune system.

Autoinflammatory diseases are also quite rare, which in the past has made it difficult to develop specific treatments.

Because autoinflammatory diseases are typically associated with excess production of cytokines, they are sometimes treated with so-called biologics – antibodies that mop up these excess cytokines.

These are usually antibodies to the cytokines tumour necrosis factor (TNF) or interleukin-1.

However biologics are expensive, and can have significant side-effects.

Without knowing the cause of an inflammatory disease, treatment is a trial and error process; a drug that works for one person may not work for another.

Antibodies against the molecule TNF (above) can be used to treat excess inflammation.
from www.shutterstock.com/StudioMolekuul

Can genetic testing help?

The discovery of mutations in genes causing autoinflammatory diseases has led to the development of genetic tests to help diagnosis.

However, some people with autoinflammatory disease do not have a change in one of the known disease-causing genes.

So our researchers have established the Australian Autoinflammatory Disease Registry to help identify other genetic causes of autoinflammatory diseases.

How we found out about the underlying mechanism

While the NIH researchers were looking for a cause of the American family’s disease, another strand of the story was playing out in Australia.

We were looking at the role of the master cytokine TNF, which controls many aspects of the body’s inflammatory response, and its partner RIPK1.

Usually, the body has many checks and balances to ensure these molecules are tightly controlled.

But we worked with the US scientists who found a critical mutation in the gene coding for RIPK1. We found this mutation, leading to changes in just one amino acid, was enough to supercharge its partner TNF into an elite killer.

This is what triggered the uncontrolled inflammation behind the American family’s disease.

Our team named this condition CRIA syndrome (cleavage-resistant RIPK1-induced autoinflammatory syndrome).

So what does this mean?

Understanding the molecular mechanism by which CRIA syndrome causes inflammation gives us an opportunity to get to the root of the problem, and to offer an alternative to existing treatments.

For this American family, treatment with an agent that inhibits the faulty RIPK1 might be a tailored option.

Lastly, the discovery of CRIA syndrome now confirms RIPK1 can play an important role in regulating inflammation in humans. So it may also play a role in far more common human illnesses, such as colitis (inflammation of the colon), rheumatoid arthritis and the skin condition psoriasis.

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John Silke, Leader, Infection, Inflammation and Immunity theme, Walter and Eliza Hall Institute and Najoua Lalaoui, Postdoctoral research fellow, Inflammation Division, Walter and Eliza Hall Institute

This article is republished from The Conversation under a Creative Commons license. Read the original article.

Orissa, India Christians Still Face Boycott, Forced Conversion

Hindu nationalists continue to oppress Christians in Kandhamal district, report says.

NEW DELHI, November 11 (CDN) — More than two years after losing relatives and property in anti-Christian violence, there is no sense of relief among survivors in India’s Orissa state, as many are still ostracized and pressured to “return” to Hinduism, according to a private investigation.

“Despite the state administration’s claim of normalcy,” the preliminary report of a fact-finding team states, “a state of lawlessness and utter fear and sense of insecurity” prevails among Christians of Kandhamal district, which saw a major anti-Christian bloodbath in 2008.

The team, consisting of local attorney Nicholas Barla and another identified only as Brother Marcus, along with rights activists Jugal Kishore Ranjit and Ajay Kumar Singh, visited four villages in three blocks of Kandhamal on Nov. 5.

In Bodimunda village in Tikabali, the team met a pastor who said he has been closely watched since Hindu extremists forced him to become a Hindu. The pastor, whose name the report withheld for security reasons, said he had to convert to Hinduism in 2008 “to save his old mother, who could not have escaped the violence as she was not in a position to walk.”

He is still closely watched in an effort to prevent him from returning to Christianity. While the attorneys and activists were still at the pastor’s house, a man who identified himself as from the Rashtriya Swayamsevak Sangh (RSS, India’s most influential Hindu nationalist conglomerate) came to inquire about his visitors. The pastor felt compelled to tell them that they were “bank officials.”

In the same village, Hindu nationalists have also imposed a de facto ban on any private or public vehicle to ferry Christians or their belongings, said the report.

The team met the family of a paralyzed Christian, Bamadev Pradhan, whom auto-rickshaw drivers refused to take to a hospital when he recently ran a high fever. Eventually a Christian driver took him to the only hospital in Tikabali, around eight kilometers (nearly five miles) from his village of Bodimunda, but as the Christian was driving back, some local men confiscated his vehicle.

With the help of the auto-rickshaw union, the driver (unnamed in the report) got the vehicle released after paying a fine of 1,051 (US$24) rupees and promising that he would not transport any Christians in the future.

Another Christian said area Hindus extremists prohibited Christians from procuring basic necessities.

“We are not allowed to bring housing materials or food provisions or medicines, and nor are we allowed to buy anything from local shops,” he said. “We do not have any shop of our own. Here, we are struggling to live as human beings.”

The team also met a Hindu who had to pay 5,000 rupees (US$112) to get his tractor returned to him, as he had transported housing material for the construction of the house of a Christian.

In the house of a Christian in Keredi village in Phulbani Block, the team found a picture of a Hindu god. The resident, who was not identified in the report, explained that he had to display it in order to protect his family from harm.

The team found pictures of Hindu gods also in the house of a Christian in Gandapadar village in the Minia area, Phiringia Block. A woman in the house told the team that local Hindu nationalists had given her pictures of Hindu gods for worship.

“We have kept them, as they often come to check whether we have reconverted to Christianity,” she said.

Almost all Christians the team met complained that the local administration had done little to protect them and suspected that officials colluded with area Hindu nationalists.

Released on Nov. 8, the report asserts that Christians have been barred from taking water from a government well in Dakanaju village, under G. Udayagiri police jurisdiction in Tikabali Block. The village head, Sachindra Pradhan, has promised to take action “at the earliest,” it added.

Violence in Kandhamal and some other districts of Orissa state followed the assassination of Hindu nationalist leader Swami Laxmanananda Saraswati on Aug. 23, 2008. The rampage killed over 100 people and burned 4,640 houses, 252 churches and 13 educational institutions, according to estimates by human rights groups.

The spate of attacks began a day after Saraswati’s killing when Hindu nationalist groups blamed Christians for his murder, although Maoists (extreme Marxists) active in the district claimed responsibility for it.

John Dayal, a Christian activist in Delhi, told Compass that “the apparatus of 2008 remains undisturbed.” The Hindu nationalist Bharatiya Janata Party (BJP) was part of the ruling state alliance with the regional Biju Janata Dal (BJD) party at the time of the violence. Although the BJD broke up with the BJP in 2009, blaming it for the violence, the former cannot be excused, said Dayal.

“While the BJP is mainly to be blamed, Chief Minister Naveen Patnaik is not entirely innocent,” Dayal said. “Not  just that he allowed the BJP and RSS cadres to run amok when they were part of his government, turning a blind eye to their  very visible anti-Christian activities, but he was his own home [interior] minister and cannot really shirk command responsibility for the carnage together with his BJP ministerial colleagues and senior officers.”

Kandhamal district Magistrate Krishan Kumar, who was on a tour at press time, could not be contacted for comment despite repeated attempts.

Of the 648,201 people in Kandhamal district, 117,950 are Christian, mostly Dalit (formerly “untouchables” in the caste hierarchy in Hindu societies), according to the 2001 Census. Hindus, mainly tribal people and numbering 527,757, form the majority.

Report from Compass Direct News

Anti-Christian Sentiment Marks Journey for Bhutan’s Exiles

Forced from Buddhist homeland, dangers arise in Hindu-majority Nepal.

KATHMANDU, Nepal, February 23 (CDN) — Thrust from their homes in Bhutan after Buddhist rulers embarked on an ethnic and religious purge, Christian refugees in Nepal face hostilities from Hindus and others.

In Sunsari district in southeastern Nepal, a country that is more than 80 percent Hindu, residents from the uneducated segments of society are especially apt to attack Christians, said Purna Kumal, district coordinator for Awana Clubs International, which runs 41 clubs in refugee camps to educate girls about the Bible.

“In Itahari, Christians face serious trouble during burials,” Kumal told Compass. “Last month, a burial party was attacked by locals who dug up the grave and desecrated it.”

Earlier this month, he added, a family in the area expelled one of its members from their home because he became a Christian.

Bhutan began expelling almost one-eighth of its citizens for being of Nepali origin or practicing faiths other than Buddhism in the 1980s. The purge lasted into the 1990s.

“Christians, like Hindus and others, were told to leave either their faith or the country,” said Gopi Chandra Silwal, who pastors a tiny church for Bhutanese refugees in a refugee camp in Sanischare, a small village in eastern Nepal’s Morang district. “Many chose to leave their homeland.”

Persecution in Bhutan led to the spread of Christianity in refugee camps in Nepal. Though exact figures are not available, refugee Simon Gazmer estimates there are about 7,000-8,000 Christians in the camps – out of a total refugee population of about 85,000 – with many others having left for other countries. There are 18 churches of various faiths in the camps, he said.

“Faith-healing was an important factor in the spread of Christianity in the camps,” said Gazmer, who belongs to Believers’ Church and is awaiting his turn to follow five members of his family to Queensland, Australia. “A second reason is the high density in the camps.”

Each refugee family lives in a single-room hut, with one outdoor toilet for every two families. The Nepalese government forbids them to work for fear it will create unemployment for local residents.

Life was even harder for them before 2006, when Nepal was a Hindu kingdom where conversions were a punishable offence.

“When I began preaching in 2000, I had to do it secretly,” said Pastor Silwal of Morang district. “We could meet only surreptitiously in small groups. I used my hut as a make-shift church while many other groups were forced to rent out rooms outside the camp.”

A fact-finding mission in 2004 by Brussels-based Human Rights Without Frontiers found that police pulled down a church structure built by Pentecostal Christians in the Beldangi camp by orders of Nepal’s home ministry. The rights group also reported that Hindu refugees ostracized the Christians, who had proceeded to rent a room outside the camp to meet three times a week for worship services and Bible study.

When the Jesus Loves Gospel Ministries (JLGM) organization sent officials from India to the Pathri camp in Morang in 2006, they found that local residents resentful of the refugees had taken note of a baptism service at a pond in a nearby jungle.

“In August, we were planning another baptism program,” JLGM director Robert Singh reported. “But the villagers put deadly poisonous chemicals in the water … Some of the young people went to take a bath ahead of our next baptism program. They found some fish floating on the water and, being very hungry – the refugees only get a very small ration, barely enough to survive on – they took some of the fish and ate them. Three of them died instantly.”

Singh also stated that poisoned sweets were left on the premises of the refugee school in the camp. They were discovered in time to avert another tragedy.

Life for Christian refugees improved after Nepal saw a pro-democracy movement in 2006 that caused the army-backed government of Hindu king Gyanendra Bir Bikram Shah to collapse. The king was forced to reinstate parliament, and lawmakers sought to curb his powers by declaring Nepal a secular state.

Though Christian refugees are now allowed to run churches openly in the camps, ill will toward them has yet to end. When Pastor Silwal asked camp authorities to allow him to open a church in 2006, Hindu neighbors protested, saying it would cause disturbances. Camp authorities allowed him to open a tiny church in a separate room on the condition that its activities would not disturb neighbors.

Earlier in his life in Bhutan, said the 40-year-old Pastor Silwal, he had been a stern Hindu who rebuked his two sisters mercilessly for becoming Christians. He forbade them to visit their church, which gathered in secret due to the ban on non-Buddhist religions in place at the time. They were also forbidden to bring the Bible inside their house in Geylegphug, a district in southern Bhutan close to the Indian border.

“I became a believer in 1988 after a near-death experience,” Pastor Silwal told Compass. “I contracted malaria and was on the verge of death since no one could diagnose it. All the priests and shamans consulted by my Hindu family failed to cure me. One day, when I thought I was going to die I had a vision.”

The pastor said he saw a white-robed figure holding a Bible in one hand and beckoning to him with the other. “Have faith in me,” the figure told him. “I will cure you.”

When he woke from his trance, Silwal asked his sisters to fetch him a copy of the Bible. They were alarmed at first, thinking he was going to beat them. But at his insistence, they nervously fetched the book from the thatched roof of the cow shed where they had kept it hidden. Pastor Silwal said he tried to read the Bible but was blinded by his fever and lost consciousness.

When he awoke, to his amazement and joy, the fever that had racked him for nearly five months was gone.

Pastor Silwal lost his home in 1990 to the ethnic and religious purge that forced him to flee along with thousands of others. It wasn’t until 1998, he said, that he and his family formally converted to Christianity after seven years of grueling hardship in the refugee camp, where he saw “people dying like flies due to illness, lack of food and the cold.”

“My little son too fell ill and I thought he would die,” Silwal said. “But he was cured; we decided to embrace Christianity formally.”

Homeless

In 2001, Bhutan4Christ reported the number of Bhutanese Christians to be around 19,000, with the bulk of them – more than 10,500 – living in Nepal.

When persecution by the Bhutanese government began, frightened families raced towards towns in India across the border. Alarmed by the influx of Bhutanese refugees, Indian security forces packed them into trucks and dumped them in southern Nepal.

Later, when the homesick refugees tried to return home, Indian security forces blocked the way. There were several rounds of scuffles, resulting in police killing at least three refugees.

Simon Gazmer was seven when his family landed at the bank of the Mai river in Jhapa district in southeastern Nepal. Now 24, he still remembers the desolation that reigned in the barren land, where mists and chilly winds rose from the river, affecting the morale and health of the refugees. They lived in bamboo shacks with thin plastic sheets serving as roofs; they had little food or medicine.

“My uncle Padam Bahadur had tuberculosis, and we thought he would die,” said Gazmer, who lives in Beldangi II, the largest of seven refugee camps. “His recovery made us realize the grace of God, and our family became Christians.”

The plight of the refugees improved after the U.N. High Commissioner for Refugees (UNHCR) stepped in, receiving permission from the government of Nepal to run the refugee camps. According to the UNHCR, there were 111,631 registered refugees in seven camps run in the two districts of Jhapa and Morang.

Though Nepal held 15 rounds of bilateral talks with Bhutan for the repatriation of the refugees, the Buddhist government dragged its feet, eventually breaking off talks. Meantime, international donors assisting the refugee camps began to grow weary, resulting in the slashing of aid and food. Finally, seven western governments – Canada, Norway, Denmark, New Zealand, Australia, the United States and the Netherlands – persuaded Nepal to allow the refugees to resettle in third countries.

The exodus of the refugees started in 2007. Today, according to the UNHCR, more than 26,000 have left for other countries, mostly the United States. A substantial number of the nearly 85,000 people left in the camps are ready to follow suit.

Although they now have a new life to look forward to, many of Bhutan’s Christian refugees are saddened by the knowledge that their homeland still remains barred to them. So some are looking at the next best thing: a return to Nepal, now that it is secular, where they will feel more at home than in the West.

“I don’t have grand dreams,” said Pastor Silwal. “In Australia I want to enroll in a Bible college and become a qualified preacher. Then I want to return to Nepal to spread the word of God.”  

Report from Compass Direct News 

Indonesian Theology Students Withstand Threats, Illness

Seminarians resist eviction from former municipal building as they await decent relocation.

JAKARTA, Indonesia, December 1 (CDN) — Some 1,000 seminary students are resisting efforts to evict them from the former municipal building of West Jakarta where they have taken refuge after Muslim protestors drove them from their campus last year.

On Oct. 27 officials began evicting about 300 students of Arastamar Evangelical Theological Seminary (SETIA) from blocks I and II of the former mayoral building, but those in blocks III, IV, and V chose to remain.

The students, some of whom had sown their mouths shut as part of a hunger strike, asserted that new quarters offered by the Jakarta Provincial Government are not yet fit for occupancy – dirty and unkempt with broken windows and doors. They said the property offered, the North Jakarta Transmigrant building, has not functioned since 1999, and its five buildings accommodate only 200 to 300 students.

The seminary students told Compass that unidentified mobs have threatened them, telling them to leave the former municipal complex immediately.

“They threaten us and tell us that if we do not move, our safety cannot be guaranteed,” said SETIA’s Yulius Thomas Bilo.

The Rev. Matheus Mangentang, rector of SETIA, confirmed that the threats had been made. Asked about the identity of the mobs, he said he knew only that they appeared daily to intimidate and threaten students.

“We are going to move as soon as possible – Dec. 31 at the latest,” Mangentang said. “If we don’t, the place is no longer safe.”

He added, however, that they would not move until their new location was clear.

“We have not wavered in our desire to return to our own place, because we actually have our own campus in Kampung Pulo, East Jakarta,” Mangentang told Compass.

The Jakarta Provincial Government has not allowed the students and staff to return to their campus, citing fear of more violence.

“It is not permissible for them to return to Kampung Pulo; conditions are not conducive,” the Jakarta area secretary who goes by a single name, Muhayat, told Compass.

In July 2008 hundreds of protestors shouting “Allahu-Akbar [“God is greater]” and brandishing machetes forced the evacuation of staff and students from the SETIA campus in Kampung Pulo village. Urged on by announcements from a mosque loudspeaker to “drive out the unwanted neighbor” following a misunderstanding between students and local residents, the protestors also had sharpened bamboo and acid and injured at least 20 students, some seriously.

Water and Electricity Crisis

Conditions for the 1,000 students living in the former West Jakarta mayor’s complex are worsening.

“Since the end of October, we have had no electricity and no water,” said Alexander Dimu, head of the student senate. “We have to depend upon our own resources and donations to buy water. We need about US$100 per day for water.”

Compass noted hundreds of students lined up to obtain water for bathing and drinking. They used old buckets to carry water to the bathrooms, which were badly in need of repair.

As a result of such living conditions, many students have diarrhea and hemorrhagic fever. 

“So far, six have fever and 17 have diarrhea,” Dimu told Compass. “Those who are ill have been taken to a nearby hospital.”

A number of students have quit school, according to Mangentang, as their parents were worried about the health conditions. The average SETIA student is from outside Jakarta. They come from Nias Island, East Indonesia, Borneo and other areas. Their families are largely farmers.

“The parents have millions of expectations as to how they can help the children of their home villages after graduation,” said Mangentang.

The ultimate destination of the students is still unclear. The Jakarta Provincial Government has stood firm in ordering them to move to Cikarang, West Java, about 90 kilometers (56 miles) from Jakarta. At the same time, the SETIA Foundation has requested the government find a new campus venue within Jakarta to avoid the difficult process of obtaining permits in the new provincial jurisdiction of West Java.

After SETIA staff and students met on Nov. 16 with several members of Parliament at the former mayoral office, the MPs led by Education Committee Vice Chairman Heri Ahmadi promised to ask Jakarta Gov. Fauzi Bowo to return them to their campus at Kampung Pulo with the necessary security. 

Mangentang said that he was still waiting for the members of Parliament to make good on that pledge.

The visit by the parliamentarians brought an end to a hunger strike by five students who had sewn their mouths shut at the former mayoral complex on Nov. 9. They were identified only as Yanisar, Leonardo, Mutari, Demas and Epy. That act followed a protest by the student council from Oct. 27 to Nov. 3.

Two units of heavy machinery had begun tearing down part of the main building where the 1,000 students are housed. Some of the students staying there were previously evicted from the Bumi Perkemahan Cibubur (BUPERTA) campground.

SETIA spokesman Yusup Agustinus Lifire told Compass the seminary is awaiting word from the Jakarta governor’s office about their returning to their campus at Kampung Pulo.

“We submitted an official letter to the governor, the police chief of Greater Jakarta and the military chief of Greater Jakarta on Oct. 28, but so far there is not any reply for us,” Lifire said. “We would like to leave this building if we could find a new place. It is not certain if the students began to attack and throw stones at police officers on Oct. 27-28 when they began demolishing one of the buildings. There were some provocateurs who started to throw some stones at police officers, then the officers threw the stones at the students and vice versa.”

Lifire also said the Jakarta governor’s office should take responsibility for the crisis. SETIA has asked the governor to guarantee security for a return to their original campus or else prepare or provide a new venue, he said.

A female student of Christian Education said there is a banner at the original campus that reads in Bahasa, “If you dare to return, we will wipe you out.”

Report from Compass Direct News 

IRAN: TWO CHRISTIAN WOMEN IMPRISONED

Held with no legal counsel for over a month, they suffer illness in notorious prison.

LOS ANGELES, April 13 (Compass Direct News) – Accused of “acting against state security” and “taking part in illegal gatherings,” two Iranian Christian women have been held in a Tehran prison for over a month in a crowded cell with no access to legal representation.

Amnesty International, in an appeal for urgent action last week, reported that authorities have made the accusations known but have imprisoned the women without filing official charges. The organization called on Iranian authorities to release them and expressed concern for their health.

Maryam Rostampour, 27, and Marzieh Amirizadeh Esmaeilabad, 30, who were active in church activities and distributing Bibles according to Amnesty’s appeal, were arrested on March 5. They are being held in the detention center of Evin Prison, a facility that has drawn criticism for its human rights violations and executions in recent years. Amnesty’s appeal included a call to urge Iranian officials to ensure that the women are not being tortured.

Based on a telephone conversation between Esmaeilabad and a third party on March 28, Amnesty reported that Esmaeilabad said both are suffering from infection and high fever and had not received adequate medical care. The women continue to be detained in an overcrowded cell with 27 other women. Amnesty said they “may be prisoners of conscience, detained solely on account of their religious beliefs.”

The women are allowed a one-minute call each day and a weekly visit from family. Authorities have informed their family members that the women are accused of “acting against state security” and “taking part in illegal gatherings,” according to the report, and that they would be released after payment of a $400,000 bail. The families have presented the title deeds of their homes as bail but are still waiting for approval from the judge.

Initially the Ministry of Intelligence summoned one of the women, and then took her to the apartment the two shared. There they were officially arrested, and authorities confiscated computers, books and Bibles. The two women were interrogated and held at different police stations.

On March 18 they appeared before Branch 2 of the Islamic Revolutionary Court in Tehran and subsequently transferred to Evin Prison, said the report.

Even if the women are released on bail, they still have to stand trial. Accusations have not included “apostasy,” or leaving Islam, though investigations are ongoing. It is not known whether the women are converts from Islam.

Last September the Iranian Parliament approved review of a new penal code calling for a mandatory death sentence for “apostates.” Under current law death sentences for apostasy have been issued only under judicial interpretations of sharia (Islamic law).

Under the new penal code, male “apostates” would be executed, while females would receive life sentences. The new code was sent to Iran’s most influential body, the Guardian Council, which is expected to rule on it. The council is made up of six conservative theologians appointed by Iran’s Supreme Leader and six jurists nominated by the judiciary and approved by Parliament. This council has the power to veto any bill it deems inconsistent with the constitution and Islamic law.

Converts to Christianity in Iran risk harassment, arrest and attack from authorities even though Article 23 of the Iranian Constitution grants that individual beliefs are private and no one can be “molested or taken to task” for holding them. Iran has also signed the International Covenant on Civil and Political Rights, which states that everyone shall have the right to freedom of thought, conscience and religion.

“This right shall include freedom to have or to adopt a religion or belief of his choice, and freedom, either individually or in community with others and in public or private, to manifest his religion or belief in worship, observance, practice and teaching,” the covenant states.

The last Iranian Christian convert from Islam executed by the Iranian government was Hossein Soodmand in 1990. He was accused of working as “an American spy.” Since then at least six Protestant pastors have been assassinated by unknown killers.

Report from Compass Direct News

 

INDIA: CHRISTIANS IN ORISSA FEAR VIOLENT CHRISTMAS

Hindu extremists move to stop yuletide celebrations as suffering in Kandhamal continues.

NEW DELHI, December 3 (Compass Direct News) – Christians in Orissa state are anticipating Christmas with fear as Hindu extremists have called for a state-wide bandh, or forced shut-down on all sectors of society, on Dec. 25 – a move that could provide Hindu extremists the pretext for attacking anyone publicly celebrating the birth of Christ.

Last year one of the area’s worst spates of violence came during the Christmas season.

The state’s chief minister has said there should be no such shut-down but stopped short of prohibiting the Hindu extremists’ plan. The federal government has expressed its disapproval of the proposal, but the Hindu extremist umbrella organization Sangh Parivar has vowed to press ahead with the shut-down, reported newspaper Outlook India on Nov. 20.

Though such shut-downs were declared illegal by India’s Supreme Court in 1998, the president of the Laxmanananda Saraswati Condolence Society (SLSSS) sent a threatening notice to the Orissa government on Nov. 15, warning that the Hindu extremist group would impose a bandh on Christmas unless the state government arrested those who murdered Hindu leader Laxmanananda Sararawati on Aug. 23.

A Maoist group on Sept. 1 admitted killing Saraswati and four of his aides, and police on Oct. 6 confirmed that Maoists killed them, but the Hindu extremist Vishwa Hindu Parishad (World Hindu Council or VHP) has continued to blame local Christians for the assassinations, stoking anti-Christian sentiment that led to a wave of violent attacks for more than two months. At least 500 people, mostly Christians, were estimated to have been killed, according to a report by a Communist Party fact-finding team, and at least 4,500 houses and churches in Orissa’s Kandhamal district were destroyed.

Ratnakar Chaini, president of the SLSSS, has demanded the release of Hindu leaders arrested in connection with the killing of Christians in the violence following the assassination of Saraswati.

In a massive rally in Delhi on Nov. 15, Chaini called for the shut-down in order to ensure “a completely peaceful Christmas.”

The general secretary of the Christian Legal Association (CLA) took the Hindu extremist’s comment as sarcasm.

“How can they have a peaceful Christmas if there is a bandh?” Tehmina Arora told Compass. “There can be no celebration, no going out the house also. So there can be no question of peace.”

Inflammatory speeches at the rally by Chaini and other Hindu extremists against Christianity and its leaders in India led Christians to believe the shut-down would serve as the pretext for another spate of violence against those publicly celebrating the holiday.

The Hindu extremists’ rally also included pledges that all Christian converts would be “re-converted” to Hinduism.

“If Hindus decided to take on anyone to protect our religion and culture, then nothing can stop us,” Chaini said. “Unchecked conversions by churches would be opposed with tooth and nail.”

The Sangh Parivar, including the state unit of the VHP, said in a press statement that the government has been shielding those guilty of murdering Saraswati.

 

Prohibition Demanded

Archbishop of Cuttack-Bhubaneswar Raphael Cheenath told Compass that the intention of the Hindu nationalists in calling the shut-down was malicious and done for political advantage – a way of garnering tribal peoples’ support for Hindu nationalist candidates by setting up Christians as disobedient trouble-makers.

“If the government allows the bandh to take place on Christmas Day, it will mean that they are allowing more attacks and violence against the Christians,” said Archbishop Cheenath.

Violence has broken out against Christians on previous shut-downs in Kandhamal district.

“There is a great deal of apprehension, because it was on previous bandhs that there have been attacks against the Christian community,” said Arora of the CLA. “The district collector informed us that they were taking strong steps to ensure that the bandh would not be taking place. Unless the district collector and state administrator take serious steps to see that it is not enforced, it would again be a violent attack against the Christian community.”

Orissa church authorities headed by Archbishop Cheenath met a team of visiting government ministers on Nov. 19. Subsequently Christian leaders delivered a memorandum demanding the proposed shut-down be prohibited as illegal. The memorandum demanded the state punish the people and organizations involved in such activities.

The team of central government ministers visiting riot-hit areas on Nov. 19 advised the state chief minister to ensure that there be no shut-down on Christmas Day. Finding the Kandhamal situation tense and Christians fearful, the team leader, Union Agriculture Minister Sharah Pawar, said they requested Chief Minister Naveen Patnaik to see that the shut-down on Christmas Day does not take place.

“We don’t understand why Christmas was chosen for calling the bandh,” Pawar told Outlook India. “Agitation should not be allowed on major festival days like Diwali [a Hindu festival], Christmas and Chhath [a Muslim festival].”

Stating that the minority community is under tremendous pressure because of such a threat, Pawar reportedly said the need of the hour is to restore normalcy in the riot-affected areas.

“We have requested Chief Minister Naveen Patnaik to make efforts to stop such a bandh on Dec. 25, a major festival day,” Pawar told reporters after meeting with Patnaik.

Patnaik later said, “There should not be a bandh on Dec. 25,” but he made no appeal to the Sangh Parivar to refrain from the Christmas Day shut-down.

Church leaders also requested the ministers pressure the state government to put a halt to Hindu extremists forcing Christians, under threat of death, to convert to Hinduism. Christians are allowed to live in the district only if they became Hindu, they said.

 

Deaths Continue in Orissa

A Christian woman who had fled Hindu extremist violence was killed on Nov. 25 after leaving a relief camp to harvest her paddy.

Lalita Digal, 45, was murdered in Dobali village, Kandhamal district, where she was staying with a friend, reported the Evangelical Fellowship of India (EFI). She had returned to the village on Nov. 21. On Nov. 25 she was allegedly dragged from the house and murdered. No arrest had been made at press time, according to EFI.

The state administration has forced people to leave relief camps even though they have no homes to return to, according to a local Christian body. Representatives of the Kandhamal Christian Jankalyan Samaj (KCJS) said at a press conference this week that threats continue from Hindu nationalists demanding that frightened Christians “re-convert” to Hinduism.

Conditions at the camps remain poor. At Daringbadi camp, Leunsio Digal died on Nov. 24 due to lack of proper medication, EFI reported. He had been suffering a fever for a week without access to medications to alleviate it. Digal had served as catechist for 25 years at Simonbadi parish, in the archdiocese of Cuttack- Bhubaneswar.

On Nov. 22, Orissa police fired at two Christians in Kandhamal’s border village of Kutunniganda, killing one and severely injuring another, according to the Global Council of Indian Christians (GCIC).

Junesh Badaraita died on the spot. The injured Karnel Badaraita later told a television station that they were searching for lost cattle with a flashlight when police fired at them.

Police were combing the area in their hunt for a Naxalite (Maoists or Marxist-Leninist revolutionaries) Training Camp. Under Inspector-in-Charge Narbada Kiro, they reportedly fired at the two Christians from a distance of 350 meters.

Police claimed that the two Christians were Naxalites, though villagers refuted this assertion. In protest, the agitated villagers blocked a public road and kept government officials from arriving at their offices in the area.

At press time, the district administrator promised compensation to the family of the deceased and suspended the squad in charge, said the GCIC.  

Report from Compass Direct News

INDIA: FAITHFUL MOURN DEATH OF PRIEST ATTACKED IN ORISSA

Hindu extremists beat Fr. Bernard Digal unconscious, leaving him bleeding in forest.

NEW DELHI, October 31 (Compass Direct News) – More than 3,000 people today attended the funeral in Bhubaneswar, Orissa of a Catholic priest who died on Tuesday (Oct. 28) from injuries sustained in anti-Christian violence that began in August.

Father Bernard Digal died in Chennai, Tamil Nadu, after an operation to remove a blood clot that developed in his brain due to a head injury from Hindu extremists attacking him on Aug. 25-26 in Kandhamal district, Orissa state. He was 46.

“He was smashed like a pulp,” Raphael Cheenath, archbishop of Cuttack-Bhubaneswar, told Compass. “Because of the hate campaign of the [Hindu extremist] Sangh Parivar, the attackers lost their humanity and they became devils. Human beings can’t do what they have done.”

Archbishop Cheenath flew with Fr. Digal’s remains from Chennai to Orissa. Treasurer of Cuttack-Bhubaneswar archdiocese in Orissa, Fr. Digal was visiting Sankarakhole parish when violence flared after Maoists killed Hindu leader Laxmanananda Saraswati and his disciples on Aug. 23.

Though police suspected Maoists from the start and the outlawed Marxists had claimed responsibility for the murders by Sept. 1, Hindu extremists bent on stoking anti-Christian flames continued to publicize that Christians had committed the crime – and have not stopped doing so.

Fr. Digal and Father Alexander Chandy, along with driver Sisir Pradhan, had taken shelter in a forest after a furious mob gathered outside the parish shouting slogans to kill all missionaries. After spending two days in the forest, they left the forest after Fr. Chandy became ill, moving from village to village.

They finally took refuge in a gutted church building in Dudukangia village. It had been torched and only its walls were standing. Legs swollen from walking, the refugees hoped that the enraged Hindu mobs would not come, Archbishop Cheenath said.

But the mob tracked them down by midnight, the archbishop said, and the clerics and driver ran. The crowd caught hold of Fr. Digal, who later told Archbishop Cheenath, “The mob shouted to each other to kill me. I pleaded for my life, but in vain.”

Stripping Fr. Digal naked, the Hindu mob then hit him with crowbars, iron rods, cycle chains, axes, sticks and other weapons, the archbishop said.

“They made a bonfire to burn him alive,” he said.

Seeing the fire, Fr. Digal managed to escape and run through some thorny bushes but was caught shortly after. The intolerant Hindus continued to hammer him until blood flowed from his head and he lost consciousness, and they left him for dead, Archbishop Cheenath said.

“He lay there on the wet ground and in the cool breeze for six to seven hours,” he added. Two villagers who found him in the forest carried him to Phulbani.

After much pressure, the state administration took Fr. Digal to a private hospital in Bhubaneswar, under security cover, and from there he was taken to Holy Spirit Hospital in Mumbai.

Discharged the first week of October after more than a month in the hospital, he reached Chennai, Tamil Nadu on Oct. 12 to visit his friend the vicar general of the archdiocese, who was undergoing a heart treatment in St. Thomas Hospital.

“Fr. Digal, after coming to Chennai, complained of high fever, blood in the urine and headache, and lastly his lungs collapsed,” Archbishop Cheenath told Compass.

Tests revealed he had a blood clot in the brain, and he underwent emergency surgery on Sunday evening (Oct. 26), reported The Times of India. The next day, he developed acute respiratory disorder and slipped into a coma.

Kandhmal district Police Chief Pravin Kumar told the national daily that he had no knowledge of the attack on Digal.

“So many incidents took place,” he reportedly said. “I don’t know whether there was any formal complaint pertaining to the attack on him. The police can begin an enquiry into the incident if a complaint is lodged even now.”

The Orissa state government has ordered a probe into the death of Fr. Digal, according to The Statesman News Service.

Fr. Digal was ordained on May 29, 1992. He was a native of the village of Tiangia in Kandhamal.

 

Orissa Rape Victim’s Plea

Two months after a nun was raped and paraded half-naked on Aug. 25 in the anti-Christian violence in Orissa, the victim went before the media in New Delhi on Oct. 24 and recounted her traumatic experience.

Her head and face covered by a black scarf, Sister Meena Lalita Barwa accused police of being “friendly” with the attackers and of not being responsive to her plea. Expressing her distrust in Orissa police for failing to protect her from those who raped her and other attackers, she demanded a Central Bureau of Investigation (CBI) probe.

The nun had gone into hiding after the attack but decided to come forward after the Supreme Court turned down her initial request for a CBI investigation last week.

Sr. Barwa read from her handwritten statement, giving stark details of the incident. Archbishop Cheenath accompanied her in the press conference.

“Two of them were holding my neck to cut off my head with an axe,” she said. “Others told them to take me out to the road; I saw Fr. [Thomas] Chellan also being taken out and being beaten.”

The 40 to 50 men were armed with axes, spades, crowbars, iron-rods and sickles, Sr. Barwa added. She said she was taken to a building full of ashes and broken glass and raped there, with the mob subsequently parading her and Fr. Chellan for about a half a kilometer. Upon reaching a market she asked about a dozen Orissa police to help her, she said, “but they did not move.”

“This hate campaign,” Archbishop Cheenath said, “is done under the very nose of the authorities, and they are mere spectators of these shameful deeds.”

At the Balliguda police station, the nun recounted, she told the inspector in charge and other government officers how she was attacked, raped, taken away from policemen and paraded half-naked, and how the officers did nothing as she wept bitterly. The inspector asked her, she said, if she knew “what will be the consequence” of filing a First Information Report (FIR).

On Aug. 26, as she was writing the FIR, the inspector told her to hurry and not write it in detail, she said.

“State police failed to stop the crimes, failed to protect me from the attackers, they were friendly with the attackers,” she said. “They tried their best that I did not register an FIR, not make complaints against police, [and] police did not take down my statement as I narrated in detail and they abandoned me half of the way. I was raped and now I don’t want to be victimized by the Orissa police. I want a CBI enquiry.”

Since her press conference, Orissa Chief Minister Naveen Patnaik has called for a detailed report on the sequence of events from the district collector and superintendent of police.  

Report from Compass Direct News

PAKISTAN: PASTOR SUFFERS POLICE ATTACKS, DEATH THREATS

Officers from different police stations beat him; murder suspect threatens to kill him.

ISTANBUL, October 9 (Compass Direct News) – A Pakistani pastor and his family in Punjab province have been living in fear for months after death threats from a murder suspect and repeated attacks on their house by police squads.

Pastor Christopher Manzer, 55, of Jhugian Baja Singh, told Compass by telephone that a Muslim man blames him for the loss of his wife and unborn baby and has enlisted extremist Muslim groups to mount a wave of attacks on him.

“I’m a Christian pastor, and in Pakistan you know it is a trend to hurt the Christians,” said Manzer, pastor of Pentecostal Church of Jesus Disciples, by telephone from Jhugian Baja Singh, 26 kilometers (16 miles) southwest of Lahore. “Most Christians are suffering very much.”

Mohammad Nawaz considers the pastor responsible for his divorce and the subsequent deaths of his ex-wife and unborn baby following an abortion. Nawaz’s uncle, a man identified only as Makha whom Nishter Colony police are seeking in connection with the murders of two Christian men in the past three months, has called the pastor twice telling him to leave town or die.

Manzer said he received the first death threat from Makha on Sept. 21, and then again on Saturday (Oct. 4) at 7 p.m.

“Be careful, I’m going to kill you – you have only a few days left in the world … your days are numbered,” Makha told Manzer on the phone last month.

“He is still receiving death threats,” said Shahzad Kamran of Sharing Life Ministry Pakistan (SLMP). “Makha is giving life threats to Pastor Christopher and telling him to leave the area and go to another place, otherwise they we will kill him and his family. They are afraid.”

 

Seeds of Grudge

Nawaz and the daughter of a member of Manzer’s church converted to Islam in order to elope, hoping that Islamic law would shield them from their families, who were opposed to their marriage.

Convinced that his daughter, Sana Bibi, had been kidnapped, Anwer Masih sought help from Manzer and others to get her back. Soon after Nawaz and Bibi were married, Nawaz became increasingly Islamic in his views, prompting her to seek help from her family to find a way out of the marriage.

Manzer stepped in to help reconcile Masih to his daughter, forgive her and take her back. On July 16, 2007 she filed for divorce, which was approved on March 28. In January, Nawaz had opened a dispute case against Manzer and Masih. A Pakistani court dismissed the case.

Bibi returned to her Christian faith and practices with the encouragement of Manzer. On April 7, however, members of the Liberty police station in Lahore broke into Manzer’s house, kicked him and beat him with sticks for an hour, verbally harassing him and his wife as well as their four children, ages 8 to 21.

Manzer was able to identify the police station because of the van that officers drove and parked near his house. The officers handcuffed him and took him to his church, where believers were gathered for a prayer meeting, and continued to beat him.

This was the first of five beatings and arrests by officers of police stations from other townships around Lahore. Each time friends came to Manzer’s rescue with a bribe, police relented and claimed to have caught the wrong man. The pastor said that paying police to keep them from beating him has exhausted his and his parishioners’ finances.

He said the beatings, which occurred twice in the middle of the night at his home, twice at the church and once at the police station, took place between April 7 and July 5. On two occasions Manzer was able to identify the responsible police station as Model Town Lahore.

The police station of his area, Manga Mandi, supports the pastor but cannot take action against other police stations, a station officer reportedly told the pastor.

On Aug. 26, Nawaz opened a second court case in a First Incident Report (FIR) at Manga Mandi police station against Manzer, Masih and seven other individuals, accusing them of forcibly entering his house in January, physically attacking him and his family and kidnapping Bibi. He further claimed that they threatened to kill him and stole 10,000 rupees (US$125) and gold objects.

“It is a fabricated story,” said Kamran of the SLMP.

Masih told SLMP staff, “Nawaz has relations with some Muslims who support him; he already has implicated us in a false case of quarrel … Now he again implicated us in a murder case of my daughter.”

In May, about five months after Bibi left Nawaz, she was admitted into the hospital with a high fever. She was treated by a midwife but died on May 27. SLMP staff confirmed that she had been pregnant and had had an abortion. According to her medical report, she died due to septic shock.

Manzer said Nawaz enlisted the help of extremist Muslims and his uncle out of anger over his ordeal and because Manzer was acquitted in the first court case against him in January.

“When Muslim groups saw the local police’s good behavior toward me, they approached Liberty and Model Town Police Stations in Lahore to take action against me,” he told the SLMP. “Police from both stations raided my house unlawfully.”

The pastor bears marks of the torture he underwent, while both his wife and eldest daughter have undergone psychological treatment after the attacks on Manzer in their home.

The first hearing in the case opened against Manzer, Masih and the other community members is scheduled for Oct. 19. Manzer said his faith has imbued him with a deep sense of charity toward Nawaz.

“We are praying for protection from God, and that God blesses Nawaz, because I am thinking of him,” said Manzer. “I don’t want to do anything to Nawaz, because I love him.”

Report from Compass Direct News

My Fight with CFS … Part 1

I have Chronic Fatigue Syndrome (CFS), or as I prefer to call it, Chronic Fatigue Immune Dysfunction Syndrome (CFIDS). It is an extremely misunderstood and debilitating illness. I have read that the average time for a person to be ill with CFS is 18 months. I have had it for 18 years more or less. It has cost me a lot to be suffering from this illness and it impacts on my life on a daily basis. Some days are not too bad, while others are extremely terrible.

My journey with CFS began in the aftermath of the Newcastle earthquake of the 28^th December 1989. In early 1990, while working at Hawkins Masonic Village repairing roofs damaged by the earthquake (it was raining and many roofs were leaking), I began to feel persistently unwell. I decided to see my doctor who put it down as some sort of stomach bug, most likely Gastroenteritis. After two weeks of medication it was becoming clear that I did not have Gastroenteritis and something more sinister was the cause of my intensifying illness.

Within weeks I had begun to develop all of the debilitating symptoms of CFS and what was worse for me they were all intensifying their effects upon me. What was wrong with me was now something of a mystery, but it was clear I was very ill and getting worse.

When I was younger I had Hyperthyroidism and so the doctor assumed that this was what was wrong with me again, despite the fact that blood tests indicated I no longer had an issue with that disorder. I was placed on medication for Hyperthyroidism and monitored. The medication had no effect on my illness and my patience with ‘witch doctoring’ was running out. I pleaded with my doctor to send me to someone else – a specialist. But who would be useful to see?

A friend had recently been diagnosed with CFS by an Immunologist and eventually I prevailed with my doctor to send me to him. Eventually I was able to set up an appointment and so my time with Doctor Sutherland of the Royal Newcastle Hospital Immunology Department had begun.

By this time I was suffering a myriad array of symptoms, with varying degrees of intensity depending on what week I was asked. Among the most debilitating of these symptoms was a persistent headache that no amount of painkilling or other medication had any impact upon. The headache was like a migraine that wouldn’t go away. It would last for an 18 month stretch this first time, bringing with it an intolerance of bright light, noise, etc. These things caused me immense head pain.

I was also suffering numerous nose bleeds (which I often get when I am very ill), fevers and chills, brain fog (a situation where you seem to know what is going on yet you have an inability to act in a logical manner – some times the sense of knowing what is happening disappears altogether), painful eyes, chronic fatigue in the muscles and extreme soreness, tiredness to the point of sleeping at a drop of a hat (I was sleeping for over 18 hours a day with no relief to my tiredness, headaches, etc), loss of strength in my limbs, constant nausea, inability to think or concentrate, etc.

By this time I was already having time away from work, with being away for weeks at a time being the norm – thankfully they were quite understanding of the fact that I was very ill.

At my lowest point during these first two years I was reduced to being bed-ridden, using a cane for stability when walking and at times was unable to walk. I was sleeping above 18 hours a day with no benefit from it.

During this time of extreme illness I was subjected to innumerable blood tests and other tests, which all revealed little at all as to the cause of my illness. A process of careful elimination under the care of Dr. Sutherland brought the diagnosis of CFS, as well as a psychological evaluation.

There was no cure to be found, with the only helpful advice having come from Dr. Sutherland. He told me to try and rest, then to slowly build myself up again. Walk one block for a week, then two blocks the following week, etc. If I overdid it I would be back in a heap again in no time. I needed to be able to read my own situation to know when I should try to rebuild my life. This advice has helped me through the last 18 years.

I struggled with the illness for 18 months or so and I also struggled with the enigma associated with the illness. That I was sick was not believed by all and this has been a constant stereotype I have been confronted with throughout my illness. I often found myself questioning whether I was sick or whether it was some mental thing. It was a relief when a doctor finally gave me a name for the illness and confirmed I was indeed very ill.

There were times (as there has been since) when I thought that dying would be a better alternative than to be as sick as I was, with no life and the prospect of endless years of severe illness. Suicide was something that popped into my head from time to time, but thankfully it didn’t stay there for long.

At times I found myself not knowing what I was doing, where I had been, etc. At one point I waited behind a parked car, waiting for it to turn the corner only to realise ½ an hour or so later that the car was parked. I found myself having gone shopping with a load of groceries I didn’t need and never had used before. It was like having a form of early onset Dementia.

After about 18 months I began to get better – or so I thought. I was well enough to knock back participation in a trial medication experiment for CFS sufferers which would involve a lengthy stay in hospital and a 50% chance I would receive the placebo.  I declined the invitation being concerned I would loose my job as a result of being in hospital for so long.

My health began to improve and I thought I was finally over the illness. During this time I lost contact with Dr. Sutherland who left the hospital because of a dispute with NSW health at the time. Many doctors left the public system at the time.

NEXT: The illness returns