By Llewellyn King, June 2, 2011:
Although it has been around for centuries, and variously labeled, modern concern with the disease dates to a major outbreak at London's Royal Free Hospital in 1955. That outbreak was big enough -- nearly 300 sufferers -- to worry public health officials.
Its appearance in a cluster at the hospital suggested that it was contagious. Then, as now, there was no real treatment and no clue as to the path of the potential contagion: Was it airborne or foodborne? How about contaminated surfaces? Were bodily fluids involved? Was there a genetic link?
None of those questions have been answered. What is known is that the disease can appear in clusters, but it is more often found in isolated cases. It has spread in families, making it frightening; but the spread is rare, and seemingly random.
The next major event to get the attention of health professionals was in Nevada at Incline Village, a resort on Lake Tahoe, in 1985. At over 300 cases, it proved too big to ignore, finally attracting attention from the CDC as well as state public health authorities.
The CDC sent two young epidemiologists to investigate the outbreak, Gary Holmes and Jon Kaplan. They estimated the number of sufferers at perhaps 20,000 throughout the United States, a majority of whom were women. The same year, a second outbreak occurred in Lyndonville, a farming and manufacturing village in the northwest corner of New York state, with 216 cases out of a population of 900. Lyndonville only had one doctor, David Bell. He has followed the disease's progress tirelessly, and he has become something of a trailblazer in the field.
Over the years, the disease popped up around the country, attracting distinguished researchers in its wake. In 1987, Harvard Medical School professor Anthony Komaroff published a report about increasingly significant numbers in his Boston practice. Dr. Nancy Klimas, an immunologist and AIDS expert at the University of Miami, found her clinic flooded with sufferers from the new disease and soon found their immune systems showed strange characteristics.
The numbers were clearly overflowing the CDC's estimate, but no one yet realized the extent.
Then entered Jason and his team of researchers at DePaul University. They studied the disease in society from a psychological point of view and found in 1990 about 1 million sufferers in the United States.
They also believe the disease was caused by an unknown pathogen, was not psychological in nature, and that the cure rate was extremely low. Additionally, they and other researchers found that one of the prevailing symptoms was immune system suppression.
For most patients, CFS is a one-way ticket to hell. The affliction is acute and mostly incurable. Horrifically, it takes away even life's littlest pleasures.
According to many interviews and hundreds of e-mails I have received since first covering the disease, sufferers are hit first with symptoms of what seems to be flu. Sometimes there is a short, deceptive remission -- sometimes two or three. Then the pattern emerges of collapse after every exertion, especially exercise. Finally, full onset occurs: There are no more normal days, only different degrees of weakness, pain and other symptoms. Doctors term the disease relapsing and remitting. That means you might have weeks, months or years of slightly better days, and then stretches -- often years, sometimes decades -- of almost total helplessness. It is goodbye to the life you have known; goodbye to work, to hobbies, to lovers and spouses, to everything short of hope.
Read more>>
Llewellyn King is executive producer and host of “White House Chronicle” on PBS. His e-mail is lking@kingpublishing.com.
Doctor Speedy and ME in search of medical honesty
Friday, June 3, 2011
ME/CFS: Its appearance in a cluster at the hospital suggests it is contagious
By Llewellyn King, June 2, 2011:
Although it has been around for centuries, and variously labeled, modern concern with the disease dates to a major outbreak at London's Royal Free Hospital in 1955. That outbreak was big enough -- nearly 300 sufferers -- to worry public health officials.
Its appearance in a cluster at the hospital suggested that it was contagious. Then, as now, there was no real treatment and no clue as to the path of the potential contagion: Was it airborne or foodborne? How about contaminated surfaces? Were bodily fluids involved? Was there a genetic link?
None of those questions have been answered. What is known is that the disease can appear in clusters, but it is more often found in isolated cases. It has spread in families, making it frightening; but the spread is rare, and seemingly random.
The next major event to get the attention of health professionals was in Nevada at Incline Village, a resort on Lake Tahoe, in 1985. At over 300 cases, it proved too big to ignore, finally attracting attention from the CDC as well as state public health authorities.
The CDC sent two young epidemiologists to investigate the outbreak, Gary Holmes and Jon Kaplan. They estimated the number of sufferers at perhaps 20,000 throughout the United States, a majority of whom were women. The same year, a second outbreak occurred in Lyndonville, a farming and manufacturing village in the northwest corner of New York state, with 216 cases out of a population of 900. Lyndonville only had one doctor, David Bell. He has followed the disease's progress tirelessly, and he has become something of a trailblazer in the field.
Over the years, the disease popped up around the country, attracting distinguished researchers in its wake. In 1987, Harvard Medical School professor Anthony Komaroff published a report about increasingly significant numbers in his Boston practice. Dr. Nancy Klimas, an immunologist and AIDS expert at the University of Miami, found her clinic flooded with sufferers from the new disease and soon found their immune systems showed strange characteristics.
The numbers were clearly overflowing the CDC's estimate, but no one yet realized the extent.
Then entered Jason and his team of researchers at DePaul University. They studied the disease in society from a psychological point of view and found in 1990 about 1 million sufferers in the United States.
They also believe the disease was caused by an unknown pathogen, was not psychological in nature, and that the cure rate was extremely low. Additionally, they and other researchers found that one of the prevailing symptoms was immune system suppression.
For most patients, CFS is a one-way ticket to hell. The affliction is acute and mostly incurable. Horrifically, it takes away even life's littlest pleasures.
According to many interviews and hundreds of e-mails I have received since first covering the disease, sufferers are hit first with symptoms of what seems to be flu. Sometimes there is a short, deceptive remission -- sometimes two or three. Then the pattern emerges of collapse after every exertion, especially exercise. Finally, full onset occurs: There are no more normal days, only different degrees of weakness, pain and other symptoms. Doctors term the disease relapsing and remitting. That means you might have weeks, months or years of slightly better days, and then stretches -- often years, sometimes decades -- of almost total helplessness. It is goodbye to the life you have known; goodbye to work, to hobbies, to lovers and spouses, to everything short of hope.
Read more>>
Llewellyn King is executive producer and host of “White House Chronicle” on PBS. His e-mail is lking@kingpublishing.com.
Although it has been around for centuries, and variously labeled, modern concern with the disease dates to a major outbreak at London's Royal Free Hospital in 1955. That outbreak was big enough -- nearly 300 sufferers -- to worry public health officials.
Its appearance in a cluster at the hospital suggested that it was contagious. Then, as now, there was no real treatment and no clue as to the path of the potential contagion: Was it airborne or foodborne? How about contaminated surfaces? Were bodily fluids involved? Was there a genetic link?
None of those questions have been answered. What is known is that the disease can appear in clusters, but it is more often found in isolated cases. It has spread in families, making it frightening; but the spread is rare, and seemingly random.
The next major event to get the attention of health professionals was in Nevada at Incline Village, a resort on Lake Tahoe, in 1985. At over 300 cases, it proved too big to ignore, finally attracting attention from the CDC as well as state public health authorities.
The CDC sent two young epidemiologists to investigate the outbreak, Gary Holmes and Jon Kaplan. They estimated the number of sufferers at perhaps 20,000 throughout the United States, a majority of whom were women. The same year, a second outbreak occurred in Lyndonville, a farming and manufacturing village in the northwest corner of New York state, with 216 cases out of a population of 900. Lyndonville only had one doctor, David Bell. He has followed the disease's progress tirelessly, and he has become something of a trailblazer in the field.
Over the years, the disease popped up around the country, attracting distinguished researchers in its wake. In 1987, Harvard Medical School professor Anthony Komaroff published a report about increasingly significant numbers in his Boston practice. Dr. Nancy Klimas, an immunologist and AIDS expert at the University of Miami, found her clinic flooded with sufferers from the new disease and soon found their immune systems showed strange characteristics.
The numbers were clearly overflowing the CDC's estimate, but no one yet realized the extent.
Then entered Jason and his team of researchers at DePaul University. They studied the disease in society from a psychological point of view and found in 1990 about 1 million sufferers in the United States.
They also believe the disease was caused by an unknown pathogen, was not psychological in nature, and that the cure rate was extremely low. Additionally, they and other researchers found that one of the prevailing symptoms was immune system suppression.
For most patients, CFS is a one-way ticket to hell. The affliction is acute and mostly incurable. Horrifically, it takes away even life's littlest pleasures.
According to many interviews and hundreds of e-mails I have received since first covering the disease, sufferers are hit first with symptoms of what seems to be flu. Sometimes there is a short, deceptive remission -- sometimes two or three. Then the pattern emerges of collapse after every exertion, especially exercise. Finally, full onset occurs: There are no more normal days, only different degrees of weakness, pain and other symptoms. Doctors term the disease relapsing and remitting. That means you might have weeks, months or years of slightly better days, and then stretches -- often years, sometimes decades -- of almost total helplessness. It is goodbye to the life you have known; goodbye to work, to hobbies, to lovers and spouses, to everything short of hope.
Read more>>
Llewellyn King is executive producer and host of “White House Chronicle” on PBS. His e-mail is lking@kingpublishing.com.
For most patients, CFS is a one-way ticket to hell
By Llewellyn King, June 2, 2011:
Although it has been around for centuries, and variously labeled, modern concern with the disease dates to a major outbreak at London's Royal Free Hospital in 1955. That outbreak was big enough -- nearly 300 sufferers -- to worry public health officials.
Its appearance in a cluster at the hospital suggested that it was contagious. Then, as now, there was no real treatment and no clue as to the path of the potential contagion: Was it airborne or foodborne? How about contaminated surfaces? Were bodily fluids involved? Was there a genetic link?
None of those questions have been answered. What is known is that the disease can appear in clusters, but it is more often found in isolated cases. It has spread in families, making it frightening; but the spread is rare, and seemingly random.
The next major event to get the attention of health professionals was in Nevada at Incline Village, a resort on Lake Tahoe, in 1985. At over 300 cases, it proved too big to ignore, finally attracting attention from the CDC as well as state public health authorities.
The CDC sent two young epidemiologists to investigate the outbreak, Gary Holmes and Jon Kaplan. They estimated the number of sufferers at perhaps 20,000 throughout the United States, a majority of whom were women. The same year, a second outbreak occurred in Lyndonville, a farming and manufacturing village in the northwest corner of New York state, with 216 cases out of a population of 900. Lyndonville only had one doctor, David Bell. He has followed the disease's progress tirelessly, and he has become something of a trailblazer in the field.
Over the years, the disease popped up around the country, attracting distinguished researchers in its wake. In 1987, Harvard Medical School professor Anthony Komaroff published a report about increasingly significant numbers in his Boston practice. Dr. Nancy Klimas, an immunologist and AIDS expert at the University of Miami, found her clinic flooded with sufferers from the new disease and soon found their immune systems showed strange characteristics.
The numbers were clearly overflowing the CDC's estimate, but no one yet realized the extent.
Then entered Jason and his team of researchers at DePaul University. They studied the disease in society from a psychological point of view and found in 1990 about 1 million sufferers in the United States.
They also believe the disease was caused by an unknown pathogen, was not psychological in nature, and that the cure rate was extremely low. Additionally, they and other researchers found that one of the prevailing symptoms was immune system suppression.
For most patients, CFS is a one-way ticket to hell. The affliction is acute and mostly incurable. Horrifically, it takes away even life's littlest pleasures.
According to many interviews and hundreds of e-mails I have received since first covering the disease, sufferers are hit first with symptoms of what seems to be flu. Sometimes there is a short, deceptive remission -- sometimes two or three. Then the pattern emerges of collapse after every exertion, especially exercise. Finally, full onset occurs: There are no more normal days, only different degrees of weakness, pain and other symptoms. Doctors term the disease relapsing and remitting. That means you might have weeks, months or years of slightly better days, and then stretches -- often years, sometimes decades -- of almost total helplessness. It is goodbye to the life you have known; goodbye to work, to hobbies, to lovers and spouses, to everything short of hope.
Read more>>
Llewellyn King is executive producer and host of “White House Chronicle” on PBS. His e-mail is lking@kingpublishing.com.
Although it has been around for centuries, and variously labeled, modern concern with the disease dates to a major outbreak at London's Royal Free Hospital in 1955. That outbreak was big enough -- nearly 300 sufferers -- to worry public health officials.
Its appearance in a cluster at the hospital suggested that it was contagious. Then, as now, there was no real treatment and no clue as to the path of the potential contagion: Was it airborne or foodborne? How about contaminated surfaces? Were bodily fluids involved? Was there a genetic link?
None of those questions have been answered. What is known is that the disease can appear in clusters, but it is more often found in isolated cases. It has spread in families, making it frightening; but the spread is rare, and seemingly random.
The next major event to get the attention of health professionals was in Nevada at Incline Village, a resort on Lake Tahoe, in 1985. At over 300 cases, it proved too big to ignore, finally attracting attention from the CDC as well as state public health authorities.
The CDC sent two young epidemiologists to investigate the outbreak, Gary Holmes and Jon Kaplan. They estimated the number of sufferers at perhaps 20,000 throughout the United States, a majority of whom were women. The same year, a second outbreak occurred in Lyndonville, a farming and manufacturing village in the northwest corner of New York state, with 216 cases out of a population of 900. Lyndonville only had one doctor, David Bell. He has followed the disease's progress tirelessly, and he has become something of a trailblazer in the field.
Over the years, the disease popped up around the country, attracting distinguished researchers in its wake. In 1987, Harvard Medical School professor Anthony Komaroff published a report about increasingly significant numbers in his Boston practice. Dr. Nancy Klimas, an immunologist and AIDS expert at the University of Miami, found her clinic flooded with sufferers from the new disease and soon found their immune systems showed strange characteristics.
The numbers were clearly overflowing the CDC's estimate, but no one yet realized the extent.
Then entered Jason and his team of researchers at DePaul University. They studied the disease in society from a psychological point of view and found in 1990 about 1 million sufferers in the United States.
They also believe the disease was caused by an unknown pathogen, was not psychological in nature, and that the cure rate was extremely low. Additionally, they and other researchers found that one of the prevailing symptoms was immune system suppression.
For most patients, CFS is a one-way ticket to hell. The affliction is acute and mostly incurable. Horrifically, it takes away even life's littlest pleasures.
According to many interviews and hundreds of e-mails I have received since first covering the disease, sufferers are hit first with symptoms of what seems to be flu. Sometimes there is a short, deceptive remission -- sometimes two or three. Then the pattern emerges of collapse after every exertion, especially exercise. Finally, full onset occurs: There are no more normal days, only different degrees of weakness, pain and other symptoms. Doctors term the disease relapsing and remitting. That means you might have weeks, months or years of slightly better days, and then stretches -- often years, sometimes decades -- of almost total helplessness. It is goodbye to the life you have known; goodbye to work, to hobbies, to lovers and spouses, to everything short of hope.
Read more>>
Llewellyn King is executive producer and host of “White House Chronicle” on PBS. His e-mail is lking@kingpublishing.com.
CFS, like AIDS, suppresses the immune system
By Llewellyn King, June 2, 2011:
CFS, like AIDS, suppresses the immune system. Typical symptoms include tremendous fatigue that is unrelieved by sleep, as well as flare-ups of herpes- family diseases (such as HHV-6 and Epstein-Barr). Other typical symptoms include swelling of the lymph nodes, muscle aches and other pain, dysphasia (the inability to use the right words), general cognitive failure, nausea and faintness.
Read more>>
Llewellyn King is executive producer and host of “White House Chronicle” on PBS. His e-mail is lking@kingpublishing.com.
CFS, like AIDS, suppresses the immune system. Typical symptoms include tremendous fatigue that is unrelieved by sleep, as well as flare-ups of herpes- family diseases (such as HHV-6 and Epstein-Barr). Other typical symptoms include swelling of the lymph nodes, muscle aches and other pain, dysphasia (the inability to use the right words), general cognitive failure, nausea and faintness.
Read more>>
Llewellyn King is executive producer and host of “White House Chronicle” on PBS. His e-mail is lking@kingpublishing.com.
Recovery of ME/CFS is rare, If it does not occur within the first two years, it is unlikely to occur at all
By Llewellyn King, June 2, 2011:
What's in a name? A great deal, if you suffer from awful, long-term diseases that have no cure.
Chronic fatigue syndrome (CFS) is a name that infuriates patients, who number perhaps 1 million to 4 million in the United States and 17 million worldwide. It also frustrates the small but dedicated cadre of doctors and researchers who have made the disease and its casualties their concern.
The Centers for Disease Control in Atlanta picked the CFS moniker in 1988, although the term myalgic encephalomyelitis (ME) is still in use in Europe and elsewhere and is favored by patients.
The new name quickly became despised because “it trivializes the disease and misleads people,” in the words of Leonard Jason, professor of psychology at DePaul University in Chicago. Certainly it brings to mind chronic whiners and everyone's everyday fatigue.
Part of the misleading, Jason and numerous medical professionals have noticed, is that the name has allowed governments and psychiatrists, especially in Britain, to sweep a plethora of psychological diagnoses into the tent. This obscures the central unsolved mystery of CFS and its AIDS-like misery, while diverting government funding away from serious biomedical research. Jason and some of his colleagues believe that the most promising lines of investigation, pathogens, are being under-researched in the process.
Two years ago, the journal Science published the results of joint research by three teams of investigators pointing to the retrovirus XMRV as a likely culprit. But in a disappointing setback to CFS sufferers, the journal published two online articles Tuesday backing away from this conclusion. Although disheartening to the CFS community, this does not put everything back to square one. The most current thinking is that although CFS may be caused by a combination of factors, including genetic predisposition, the most likely trigger is one or more pathogens and the immune system’s hyper-response to infection.
“The immune system pours out its toxins to stop this agent,” Dr. Jay Levy, a University of California professor who co-authored the new studies told The New York Times. “And then the immune system doesn’t calm down.”
Although it has been around for centuries, and variously labeled, modern concern with the disease dates to a major outbreak at London's Royal Free Hospital in 1955. That outbreak was big enough -- nearly 300 sufferers -- to worry public health officials.
Its appearance in a cluster at the hospital suggested that it was contagious. Then, as now, there was no real treatment and no clue as to the path of the potential contagion: Was it airborne or foodborne? How about contaminated surfaces? Were bodily fluids involved? Was there a genetic link?
None of those questions have been answered. What is known is that the disease can appear in clusters, but it is more often found in isolated cases. It has spread in families, making it frightening; but the spread is rare, and seemingly random.
The next major event to get the attention of health professionals was in Nevada at Incline Village, a resort on Lake Tahoe, in 1985. At over 300 cases, it proved too big to ignore, finally attracting attention from the CDC as well as state public health authorities.
The CDC sent two young epidemiologists to investigate the outbreak, Gary Holmes and Jon Kaplan. They estimated the number of sufferers at perhaps 20,000 throughout the United States, a majority of whom were women. The same year, a second outbreak occurred in Lyndonville, a farming and manufacturing village in the northwest corner of New York state, with 216 cases out of a population of 900. Lyndonville only had one doctor, David Bell. He has followed the disease's progress tirelessly, and he has become something of a trailblazer in the field.
Over the years, the disease popped up around the country, attracting distinguished researchers in its wake. In 1987, Harvard Medical School professor Anthony Komaroff published a report about increasingly significant numbers in his Boston practice. Dr. Nancy Klimas, an immunologist and AIDS expert at the University of Miami, found her clinic flooded with sufferers from the new disease and soon found their immune systems showed strange characteristics.
The numbers were clearly overflowing the CDC's estimate, but no one yet realized the extent.
Then entered Jason and his team of researchers at DePaul University. They studied the disease in society from a psychological point of view and found in 1990 about 1 million sufferers in the United States.
They also believe the disease was caused by an unknown pathogen, was not psychological in nature, and that the cure rate was extremely low. Additionally, they and other researchers found that one of the prevailing symptoms was immune system suppression.
For most patients, CFS is a one-way ticket to hell. The affliction is acute and mostly incurable. Horrifically, it takes away even life's littlest pleasures.
According to many interviews and hundreds of e-mails I have received since first covering the disease, sufferers are hit first with symptoms of what seems to be flu. Sometimes there is a short, deceptive remission -- sometimes two or three. Then the pattern emerges of collapse after every exertion, especially exercise. Finally, full onset occurs: There are no more normal days, only different degrees of weakness, pain and other symptoms. Doctors term the disease relapsing and remitting. That means you might have weeks, months or years of slightly better days, and then stretches -- often years, sometimes decades -- of almost total helplessness. It is goodbye to the life you have known; goodbye to work, to hobbies, to lovers and spouses, to everything short of hope.
Deborah Waroff, a gifted New York author and securities analyst, is typical in the devastation of her life. Before, Waroff was a skier, a sailor, a passionate squash and tennis player. Now the aloneness of the disease weighs her down. Very old friends -- some from her days at Harvard, a few from childhood, a handful from work -- sustain her with telephone calls, when she can answer the phone, and some drop by. Nonetheless, the brutal loneliness is always there.
Waroff was first felled at the end of July in 1989. Her engagement calendar grew full of forlorn cancellations for dinners, parties and meetings. One day in 1991, a bad headache arrived that lasted three days; after that, it came again and again.
Gradually, with help from a tireless and creative doctor, Waroff began to find medications and methods that would allow her to work a few hours a day. Pushing herself with sheer willpower to complete a chore would exaggerate her symptoms -- more mixed-up speech, stumbles, near-falls, dizziness, rising fevers. Afterward, she would be immobilized for days.
Then things got worse.
In September 2003, Waroff woke up to find that she was too weak to fill out a simple form -- just to renew library books -- and fax it. That was the beginning of month after month of near-death incapacity. “I was as weak as you can imagine. I lay on the couch, its high back and sides making me think how much this was like being in a coffin, inert, my consciousness flattened by illness. I was too weak to read and often too weak to watch television. I would turn my back to the screen and let the sound wash over me, not taking it in.”
CFS, like AIDS, suppresses the immune system. Typical symptoms include tremendous fatigue that is unrelieved by sleep, as well as flare-ups of herpes- family diseases (such as HHV-6 and Epstein-Barr). Other typical symptoms include swelling of the lymph nodes, muscle aches and other pain, dysphasia (the inability to use the right words), general cognitive failure, nausea and faintness.
Elisabeth Tova Bailey, once a professional gardener in Maine, was felled by CFS. Unable to leave her bed for more than a year, she filled her days by watching a single snail in a terrarium make its fascinating way through life.
When she was feeling somewhat better, Bailey studied the snail through the wonderful work of the 19th-century naturalists -- that special breed of romantics who studied by watching, rather than by dissecting in the lab. The result is the sweet, well-reviewed book, The Sound of a Wild Snail Eating.
The most famous person to have CFS, and to have managed in great adversity to be productive, is Laura Hillenbrand who has over time written two incontrovertible bestsellers, Seabiscuit: An American Legend and Unbroken: A World War II Story of Survival.
Hillenbrand’s achievement is Herculean. She seldom is able to leave her home in Washington, D.C. In a recent interview, she told the story of how she had to leave her own wedding because she was so sick.
Statistically, two-thirds more women are afflicted than men. But I have heard from a lot of men, including a medical doctor and a young man, who was thrown out by his father who accused him of malingering. His plight is terrible, as is the plight of other people who do not have the intellectual capital or financial resources to do anything but suffer in isolation. Insurance companies drop coverage routinely, and many doctors misdiagnose or are influenced by psychiatric arguments.
Recovery, like that of DePaul's Leonard Jason, is rare. If it does not occur within the first two years, it is unlikely to occur at all. Usually only the young and well-supported socially are able to regain a good part of the health they once had. The beacon of hope in this wasteland of human wreckage is a private institute in Reno, Nev. Affiliated with the University of Nevada, it is called The Whittemore Peterson Institute for Neuro-Immune Disease (WPI). It was founded and funded by Harvey Whittemore and his wife, Annette. Their 33-year-old daughter, Andrea Whittemore Goad, has been a CFS sufferer since she was 11.
The medical establishment has been cool to WPI, and the NIH turned down all six research grant applications it made last year. But at least 1 million very sick Americans are cheering for this frontal attack on CFS, which they prefer to call ME/CFS in deference to the older, less trivializing name.
While these things are argued, the life in limbo that so many endure is described by Waroff this way: “You know the trouble with this disease? All this time goes by with nothing in it. You don't get a chance to put anything in it. It's just empty time.”
Llewellyn King is executive producer and host of “White House Chronicle” on PBS. His e-mail is lking@kingpublishing.com.
What's in a name? A great deal, if you suffer from awful, long-term diseases that have no cure.
Chronic fatigue syndrome (CFS) is a name that infuriates patients, who number perhaps 1 million to 4 million in the United States and 17 million worldwide. It also frustrates the small but dedicated cadre of doctors and researchers who have made the disease and its casualties their concern.
The Centers for Disease Control in Atlanta picked the CFS moniker in 1988, although the term myalgic encephalomyelitis (ME) is still in use in Europe and elsewhere and is favored by patients.
The new name quickly became despised because “it trivializes the disease and misleads people,” in the words of Leonard Jason, professor of psychology at DePaul University in Chicago. Certainly it brings to mind chronic whiners and everyone's everyday fatigue.
Part of the misleading, Jason and numerous medical professionals have noticed, is that the name has allowed governments and psychiatrists, especially in Britain, to sweep a plethora of psychological diagnoses into the tent. This obscures the central unsolved mystery of CFS and its AIDS-like misery, while diverting government funding away from serious biomedical research. Jason and some of his colleagues believe that the most promising lines of investigation, pathogens, are being under-researched in the process.
Two years ago, the journal Science published the results of joint research by three teams of investigators pointing to the retrovirus XMRV as a likely culprit. But in a disappointing setback to CFS sufferers, the journal published two online articles Tuesday backing away from this conclusion. Although disheartening to the CFS community, this does not put everything back to square one. The most current thinking is that although CFS may be caused by a combination of factors, including genetic predisposition, the most likely trigger is one or more pathogens and the immune system’s hyper-response to infection.
“The immune system pours out its toxins to stop this agent,” Dr. Jay Levy, a University of California professor who co-authored the new studies told The New York Times. “And then the immune system doesn’t calm down.”
Although it has been around for centuries, and variously labeled, modern concern with the disease dates to a major outbreak at London's Royal Free Hospital in 1955. That outbreak was big enough -- nearly 300 sufferers -- to worry public health officials.
Its appearance in a cluster at the hospital suggested that it was contagious. Then, as now, there was no real treatment and no clue as to the path of the potential contagion: Was it airborne or foodborne? How about contaminated surfaces? Were bodily fluids involved? Was there a genetic link?
None of those questions have been answered. What is known is that the disease can appear in clusters, but it is more often found in isolated cases. It has spread in families, making it frightening; but the spread is rare, and seemingly random.
The next major event to get the attention of health professionals was in Nevada at Incline Village, a resort on Lake Tahoe, in 1985. At over 300 cases, it proved too big to ignore, finally attracting attention from the CDC as well as state public health authorities.
The CDC sent two young epidemiologists to investigate the outbreak, Gary Holmes and Jon Kaplan. They estimated the number of sufferers at perhaps 20,000 throughout the United States, a majority of whom were women. The same year, a second outbreak occurred in Lyndonville, a farming and manufacturing village in the northwest corner of New York state, with 216 cases out of a population of 900. Lyndonville only had one doctor, David Bell. He has followed the disease's progress tirelessly, and he has become something of a trailblazer in the field.
Over the years, the disease popped up around the country, attracting distinguished researchers in its wake. In 1987, Harvard Medical School professor Anthony Komaroff published a report about increasingly significant numbers in his Boston practice. Dr. Nancy Klimas, an immunologist and AIDS expert at the University of Miami, found her clinic flooded with sufferers from the new disease and soon found their immune systems showed strange characteristics.
The numbers were clearly overflowing the CDC's estimate, but no one yet realized the extent.
Then entered Jason and his team of researchers at DePaul University. They studied the disease in society from a psychological point of view and found in 1990 about 1 million sufferers in the United States.
They also believe the disease was caused by an unknown pathogen, was not psychological in nature, and that the cure rate was extremely low. Additionally, they and other researchers found that one of the prevailing symptoms was immune system suppression.
For most patients, CFS is a one-way ticket to hell. The affliction is acute and mostly incurable. Horrifically, it takes away even life's littlest pleasures.
According to many interviews and hundreds of e-mails I have received since first covering the disease, sufferers are hit first with symptoms of what seems to be flu. Sometimes there is a short, deceptive remission -- sometimes two or three. Then the pattern emerges of collapse after every exertion, especially exercise. Finally, full onset occurs: There are no more normal days, only different degrees of weakness, pain and other symptoms. Doctors term the disease relapsing and remitting. That means you might have weeks, months or years of slightly better days, and then stretches -- often years, sometimes decades -- of almost total helplessness. It is goodbye to the life you have known; goodbye to work, to hobbies, to lovers and spouses, to everything short of hope.
Deborah Waroff, a gifted New York author and securities analyst, is typical in the devastation of her life. Before, Waroff was a skier, a sailor, a passionate squash and tennis player. Now the aloneness of the disease weighs her down. Very old friends -- some from her days at Harvard, a few from childhood, a handful from work -- sustain her with telephone calls, when she can answer the phone, and some drop by. Nonetheless, the brutal loneliness is always there.
Waroff was first felled at the end of July in 1989. Her engagement calendar grew full of forlorn cancellations for dinners, parties and meetings. One day in 1991, a bad headache arrived that lasted three days; after that, it came again and again.
Gradually, with help from a tireless and creative doctor, Waroff began to find medications and methods that would allow her to work a few hours a day. Pushing herself with sheer willpower to complete a chore would exaggerate her symptoms -- more mixed-up speech, stumbles, near-falls, dizziness, rising fevers. Afterward, she would be immobilized for days.
Then things got worse.
In September 2003, Waroff woke up to find that she was too weak to fill out a simple form -- just to renew library books -- and fax it. That was the beginning of month after month of near-death incapacity. “I was as weak as you can imagine. I lay on the couch, its high back and sides making me think how much this was like being in a coffin, inert, my consciousness flattened by illness. I was too weak to read and often too weak to watch television. I would turn my back to the screen and let the sound wash over me, not taking it in.”
CFS, like AIDS, suppresses the immune system. Typical symptoms include tremendous fatigue that is unrelieved by sleep, as well as flare-ups of herpes- family diseases (such as HHV-6 and Epstein-Barr). Other typical symptoms include swelling of the lymph nodes, muscle aches and other pain, dysphasia (the inability to use the right words), general cognitive failure, nausea and faintness.
Elisabeth Tova Bailey, once a professional gardener in Maine, was felled by CFS. Unable to leave her bed for more than a year, she filled her days by watching a single snail in a terrarium make its fascinating way through life.
When she was feeling somewhat better, Bailey studied the snail through the wonderful work of the 19th-century naturalists -- that special breed of romantics who studied by watching, rather than by dissecting in the lab. The result is the sweet, well-reviewed book, The Sound of a Wild Snail Eating.
The most famous person to have CFS, and to have managed in great adversity to be productive, is Laura Hillenbrand who has over time written two incontrovertible bestsellers, Seabiscuit: An American Legend and Unbroken: A World War II Story of Survival.
Hillenbrand’s achievement is Herculean. She seldom is able to leave her home in Washington, D.C. In a recent interview, she told the story of how she had to leave her own wedding because she was so sick.
Statistically, two-thirds more women are afflicted than men. But I have heard from a lot of men, including a medical doctor and a young man, who was thrown out by his father who accused him of malingering. His plight is terrible, as is the plight of other people who do not have the intellectual capital or financial resources to do anything but suffer in isolation. Insurance companies drop coverage routinely, and many doctors misdiagnose or are influenced by psychiatric arguments.
Recovery, like that of DePaul's Leonard Jason, is rare. If it does not occur within the first two years, it is unlikely to occur at all. Usually only the young and well-supported socially are able to regain a good part of the health they once had. The beacon of hope in this wasteland of human wreckage is a private institute in Reno, Nev. Affiliated with the University of Nevada, it is called The Whittemore Peterson Institute for Neuro-Immune Disease (WPI). It was founded and funded by Harvey Whittemore and his wife, Annette. Their 33-year-old daughter, Andrea Whittemore Goad, has been a CFS sufferer since she was 11.
The medical establishment has been cool to WPI, and the NIH turned down all six research grant applications it made last year. But at least 1 million very sick Americans are cheering for this frontal attack on CFS, which they prefer to call ME/CFS in deference to the older, less trivializing name.
While these things are argued, the life in limbo that so many endure is described by Waroff this way: “You know the trouble with this disease? All this time goes by with nothing in it. You don't get a chance to put anything in it. It's just empty time.”
Llewellyn King is executive producer and host of “White House Chronicle” on PBS. His e-mail is lking@kingpublishing.com.
The NIH turned down all six research grant applications by the WPI last year
By Llewellyn King, June 2, 2011:
What's in a name? A great deal, if you suffer from awful, long-term diseases that have no cure.
Chronic fatigue syndrome (CFS) is a name that infuriates patients, who number perhaps 1 million to 4 million in the United States and 17 million worldwide. It also frustrates the small but dedicated cadre of doctors and researchers who have made the disease and its casualties their concern.
The Centers for Disease Control in Atlanta picked the CFS moniker in 1988, although the term myalgic encephalomyelitis (ME) is still in use in Europe and elsewhere and is favored by patients.
The new name quickly became despised because “it trivializes the disease and misleads people,” in the words of Leonard Jason, professor of psychology at DePaul University in Chicago. Certainly it brings to mind chronic whiners and everyone's everyday fatigue.
Part of the misleading, Jason and numerous medical professionals have noticed, is that the name has allowed governments and psychiatrists, especially in Britain, to sweep a plethora of psychological diagnoses into the tent. This obscures the central unsolved mystery of CFS and its AIDS-like misery, while diverting government funding away from serious biomedical research. Jason and some of his colleagues believe that the most promising lines of investigation, pathogens, are being under-researched in the process.
Two years ago, the journal Science published the results of joint research by three teams of investigators pointing to the retrovirus XMRV as a likely culprit. But in a disappointing setback to CFS sufferers, the journal published two online articles Tuesday backing away from this conclusion. Although disheartening to the CFS community, this does not put everything back to square one. The most current thinking is that although CFS may be caused by a combination of factors, including genetic predisposition, the most likely trigger is one or more pathogens and the immune system’s hyper-response to infection.
“The immune system pours out its toxins to stop this agent,” Dr. Jay Levy, a University of California professor who co-authored the new studies told The New York Times. “And then the immune system doesn’t calm down.”
Although it has been around for centuries, and variously labeled, modern concern with the disease dates to a major outbreak at London's Royal Free Hospital in 1955. That outbreak was big enough -- nearly 300 sufferers -- to worry public health officials.
Its appearance in a cluster at the hospital suggested that it was contagious. Then, as now, there was no real treatment and no clue as to the path of the potential contagion: Was it airborne or foodborne? How about contaminated surfaces? Were bodily fluids involved? Was there a genetic link?
None of those questions have been answered. What is known is that the disease can appear in clusters, but it is more often found in isolated cases. It has spread in families, making it frightening; but the spread is rare, and seemingly random.
The next major event to get the attention of health professionals was in Nevada at Incline Village, a resort on Lake Tahoe, in 1985. At over 300 cases, it proved too big to ignore, finally attracting attention from the CDC as well as state public health authorities.
The CDC sent two young epidemiologists to investigate the outbreak, Gary Holmes and Jon Kaplan. They estimated the number of sufferers at perhaps 20,000 throughout the United States, a majority of whom were women. The same year, a second outbreak occurred in Lyndonville, a farming and manufacturing village in the northwest corner of New York state, with 216 cases out of a population of 900. Lyndonville only had one doctor, David Bell. He has followed the disease's progress tirelessly, and he has become something of a trailblazer in the field.
Over the years, the disease popped up around the country, attracting distinguished researchers in its wake. In 1987, Harvard Medical School professor Anthony Komaroff published a report about increasingly significant numbers in his Boston practice. Dr. Nancy Klimas, an immunologist and AIDS expert at the University of Miami, found her clinic flooded with sufferers from the new disease and soon found their immune systems showed strange characteristics.
The numbers were clearly overflowing the CDC's estimate, but no one yet realized the extent.
Then entered Jason and his team of researchers at DePaul University. They studied the disease in society from a psychological point of view and found in 1990 about 1 million sufferers in the United States.
They also believe the disease was caused by an unknown pathogen, was not psychological in nature, and that the cure rate was extremely low. Additionally, they and other researchers found that one of the prevailing symptoms was immune system suppression.
For most patients, CFS is a one-way ticket to hell. The affliction is acute and mostly incurable. Horrifically, it takes away even life's littlest pleasures.
According to many interviews and hundreds of e-mails I have received since first covering the disease, sufferers are hit first with symptoms of what seems to be flu. Sometimes there is a short, deceptive remission -- sometimes two or three. Then the pattern emerges of collapse after every exertion, especially exercise. Finally, full onset occurs: There are no more normal days, only different degrees of weakness, pain and other symptoms. Doctors term the disease relapsing and remitting. That means you might have weeks, months or years of slightly better days, and then stretches -- often years, sometimes decades -- of almost total helplessness. It is goodbye to the life you have known; goodbye to work, to hobbies, to lovers and spouses, to everything short of hope.
Deborah Waroff, a gifted New York author and securities analyst, is typical in the devastation of her life. Before, Waroff was a skier, a sailor, a passionate squash and tennis player. Now the aloneness of the disease weighs her down. Very old friends -- some from her days at Harvard, a few from childhood, a handful from work -- sustain her with telephone calls, when she can answer the phone, and some drop by. Nonetheless, the brutal loneliness is always there.
Waroff was first felled at the end of July in 1989. Her engagement calendar grew full of forlorn cancellations for dinners, parties and meetings. One day in 1991, a bad headache arrived that lasted three days; after that, it came again and again.
Gradually, with help from a tireless and creative doctor, Waroff began to find medications and methods that would allow her to work a few hours a day. Pushing herself with sheer willpower to complete a chore would exaggerate her symptoms -- more mixed-up speech, stumbles, near-falls, dizziness, rising fevers. Afterward, she would be immobilized for days.
Then things got worse.
In September 2003, Waroff woke up to find that she was too weak to fill out a simple form -- just to renew library books -- and fax it. That was the beginning of month after month of near-death incapacity. “I was as weak as you can imagine. I lay on the couch, its high back and sides making me think how much this was like being in a coffin, inert, my consciousness flattened by illness. I was too weak to read and often too weak to watch television. I would turn my back to the screen and let the sound wash over me, not taking it in.”
CFS, like AIDS, suppresses the immune system. Typical symptoms include tremendous fatigue that is unrelieved by sleep, as well as flare-ups of herpes- family diseases (such as HHV-6 and Epstein-Barr). Other typical symptoms include swelling of the lymph nodes, muscle aches and other pain, dysphasia (the inability to use the right words), general cognitive failure, nausea and faintness.
Elisabeth Tova Bailey, once a professional gardener in Maine, was felled by CFS. Unable to leave her bed for more than a year, she filled her days by watching a single snail in a terrarium make its fascinating way through life.
When she was feeling somewhat better, Bailey studied the snail through the wonderful work of the 19th-century naturalists -- that special breed of romantics who studied by watching, rather than by dissecting in the lab. The result is the sweet, well-reviewed book, The Sound of a Wild Snail Eating.
The most famous person to have CFS, and to have managed in great adversity to be productive, is Laura Hillenbrand who has over time written two incontrovertible bestsellers, Seabiscuit: An American Legend and Unbroken: A World War II Story of Survival.
Hillenbrand’s achievement is Herculean. She seldom is able to leave her home in Washington, D.C. In a recent interview, she told the story of how she had to leave her own wedding because she was so sick.
Statistically, two-thirds more women are afflicted than men. But I have heard from a lot of men, including a medical doctor and a young man, who was thrown out by his father who accused him of malingering. His plight is terrible, as is the plight of other people who do not have the intellectual capital or financial resources to do anything but suffer in isolation. Insurance companies drop coverage routinely, and many doctors misdiagnose or are influenced by psychiatric arguments.
Recovery, like that of DePaul's Leonard Jason, is rare. If it does not occur within the first two years, it is unlikely to occur at all. Usually only the young and well-supported socially are able to regain a good part of the health they once had. The beacon of hope in this wasteland of human wreckage is a private institute in Reno, Nev. Affiliated with the University of Nevada, it is called The Whittemore Peterson Institute for Neuro-Immune Disease (WPI). It was founded and funded by Harvey Whittemore and his wife, Annette. Their 33-year-old daughter, Andrea Whittemore Goad, has been a CFS sufferer since she was 11.
The medical establishment has been cool to WPI, and the NIH turned down all six research grant applications it made last year. But at least 1 million very sick Americans are cheering for this frontal attack on CFS, which they prefer to call ME/CFS in deference to the older, less trivializing name.
While these things are argued, the life in limbo that so many endure is described by Waroff this way: “You know the trouble with this disease? All this time goes by with nothing in it. You don't get a chance to put anything in it. It's just empty time.”
Llewellyn King is executive producer and host of “White House Chronicle” on PBS. His e-mail is lking@kingpublishing.com.
What's in a name? A great deal, if you suffer from awful, long-term diseases that have no cure.
Chronic fatigue syndrome (CFS) is a name that infuriates patients, who number perhaps 1 million to 4 million in the United States and 17 million worldwide. It also frustrates the small but dedicated cadre of doctors and researchers who have made the disease and its casualties their concern.
The Centers for Disease Control in Atlanta picked the CFS moniker in 1988, although the term myalgic encephalomyelitis (ME) is still in use in Europe and elsewhere and is favored by patients.
The new name quickly became despised because “it trivializes the disease and misleads people,” in the words of Leonard Jason, professor of psychology at DePaul University in Chicago. Certainly it brings to mind chronic whiners and everyone's everyday fatigue.
Part of the misleading, Jason and numerous medical professionals have noticed, is that the name has allowed governments and psychiatrists, especially in Britain, to sweep a plethora of psychological diagnoses into the tent. This obscures the central unsolved mystery of CFS and its AIDS-like misery, while diverting government funding away from serious biomedical research. Jason and some of his colleagues believe that the most promising lines of investigation, pathogens, are being under-researched in the process.
Two years ago, the journal Science published the results of joint research by three teams of investigators pointing to the retrovirus XMRV as a likely culprit. But in a disappointing setback to CFS sufferers, the journal published two online articles Tuesday backing away from this conclusion. Although disheartening to the CFS community, this does not put everything back to square one. The most current thinking is that although CFS may be caused by a combination of factors, including genetic predisposition, the most likely trigger is one or more pathogens and the immune system’s hyper-response to infection.
“The immune system pours out its toxins to stop this agent,” Dr. Jay Levy, a University of California professor who co-authored the new studies told The New York Times. “And then the immune system doesn’t calm down.”
Although it has been around for centuries, and variously labeled, modern concern with the disease dates to a major outbreak at London's Royal Free Hospital in 1955. That outbreak was big enough -- nearly 300 sufferers -- to worry public health officials.
Its appearance in a cluster at the hospital suggested that it was contagious. Then, as now, there was no real treatment and no clue as to the path of the potential contagion: Was it airborne or foodborne? How about contaminated surfaces? Were bodily fluids involved? Was there a genetic link?
None of those questions have been answered. What is known is that the disease can appear in clusters, but it is more often found in isolated cases. It has spread in families, making it frightening; but the spread is rare, and seemingly random.
The next major event to get the attention of health professionals was in Nevada at Incline Village, a resort on Lake Tahoe, in 1985. At over 300 cases, it proved too big to ignore, finally attracting attention from the CDC as well as state public health authorities.
The CDC sent two young epidemiologists to investigate the outbreak, Gary Holmes and Jon Kaplan. They estimated the number of sufferers at perhaps 20,000 throughout the United States, a majority of whom were women. The same year, a second outbreak occurred in Lyndonville, a farming and manufacturing village in the northwest corner of New York state, with 216 cases out of a population of 900. Lyndonville only had one doctor, David Bell. He has followed the disease's progress tirelessly, and he has become something of a trailblazer in the field.
Over the years, the disease popped up around the country, attracting distinguished researchers in its wake. In 1987, Harvard Medical School professor Anthony Komaroff published a report about increasingly significant numbers in his Boston practice. Dr. Nancy Klimas, an immunologist and AIDS expert at the University of Miami, found her clinic flooded with sufferers from the new disease and soon found their immune systems showed strange characteristics.
The numbers were clearly overflowing the CDC's estimate, but no one yet realized the extent.
Then entered Jason and his team of researchers at DePaul University. They studied the disease in society from a psychological point of view and found in 1990 about 1 million sufferers in the United States.
They also believe the disease was caused by an unknown pathogen, was not psychological in nature, and that the cure rate was extremely low. Additionally, they and other researchers found that one of the prevailing symptoms was immune system suppression.
For most patients, CFS is a one-way ticket to hell. The affliction is acute and mostly incurable. Horrifically, it takes away even life's littlest pleasures.
According to many interviews and hundreds of e-mails I have received since first covering the disease, sufferers are hit first with symptoms of what seems to be flu. Sometimes there is a short, deceptive remission -- sometimes two or three. Then the pattern emerges of collapse after every exertion, especially exercise. Finally, full onset occurs: There are no more normal days, only different degrees of weakness, pain and other symptoms. Doctors term the disease relapsing and remitting. That means you might have weeks, months or years of slightly better days, and then stretches -- often years, sometimes decades -- of almost total helplessness. It is goodbye to the life you have known; goodbye to work, to hobbies, to lovers and spouses, to everything short of hope.
Deborah Waroff, a gifted New York author and securities analyst, is typical in the devastation of her life. Before, Waroff was a skier, a sailor, a passionate squash and tennis player. Now the aloneness of the disease weighs her down. Very old friends -- some from her days at Harvard, a few from childhood, a handful from work -- sustain her with telephone calls, when she can answer the phone, and some drop by. Nonetheless, the brutal loneliness is always there.
Waroff was first felled at the end of July in 1989. Her engagement calendar grew full of forlorn cancellations for dinners, parties and meetings. One day in 1991, a bad headache arrived that lasted three days; after that, it came again and again.
Gradually, with help from a tireless and creative doctor, Waroff began to find medications and methods that would allow her to work a few hours a day. Pushing herself with sheer willpower to complete a chore would exaggerate her symptoms -- more mixed-up speech, stumbles, near-falls, dizziness, rising fevers. Afterward, she would be immobilized for days.
Then things got worse.
In September 2003, Waroff woke up to find that she was too weak to fill out a simple form -- just to renew library books -- and fax it. That was the beginning of month after month of near-death incapacity. “I was as weak as you can imagine. I lay on the couch, its high back and sides making me think how much this was like being in a coffin, inert, my consciousness flattened by illness. I was too weak to read and often too weak to watch television. I would turn my back to the screen and let the sound wash over me, not taking it in.”
CFS, like AIDS, suppresses the immune system. Typical symptoms include tremendous fatigue that is unrelieved by sleep, as well as flare-ups of herpes- family diseases (such as HHV-6 and Epstein-Barr). Other typical symptoms include swelling of the lymph nodes, muscle aches and other pain, dysphasia (the inability to use the right words), general cognitive failure, nausea and faintness.
Elisabeth Tova Bailey, once a professional gardener in Maine, was felled by CFS. Unable to leave her bed for more than a year, she filled her days by watching a single snail in a terrarium make its fascinating way through life.
When she was feeling somewhat better, Bailey studied the snail through the wonderful work of the 19th-century naturalists -- that special breed of romantics who studied by watching, rather than by dissecting in the lab. The result is the sweet, well-reviewed book, The Sound of a Wild Snail Eating.
The most famous person to have CFS, and to have managed in great adversity to be productive, is Laura Hillenbrand who has over time written two incontrovertible bestsellers, Seabiscuit: An American Legend and Unbroken: A World War II Story of Survival.
Hillenbrand’s achievement is Herculean. She seldom is able to leave her home in Washington, D.C. In a recent interview, she told the story of how she had to leave her own wedding because she was so sick.
Statistically, two-thirds more women are afflicted than men. But I have heard from a lot of men, including a medical doctor and a young man, who was thrown out by his father who accused him of malingering. His plight is terrible, as is the plight of other people who do not have the intellectual capital or financial resources to do anything but suffer in isolation. Insurance companies drop coverage routinely, and many doctors misdiagnose or are influenced by psychiatric arguments.
Recovery, like that of DePaul's Leonard Jason, is rare. If it does not occur within the first two years, it is unlikely to occur at all. Usually only the young and well-supported socially are able to regain a good part of the health they once had. The beacon of hope in this wasteland of human wreckage is a private institute in Reno, Nev. Affiliated with the University of Nevada, it is called The Whittemore Peterson Institute for Neuro-Immune Disease (WPI). It was founded and funded by Harvey Whittemore and his wife, Annette. Their 33-year-old daughter, Andrea Whittemore Goad, has been a CFS sufferer since she was 11.
The medical establishment has been cool to WPI, and the NIH turned down all six research grant applications it made last year. But at least 1 million very sick Americans are cheering for this frontal attack on CFS, which they prefer to call ME/CFS in deference to the older, less trivializing name.
While these things are argued, the life in limbo that so many endure is described by Waroff this way: “You know the trouble with this disease? All this time goes by with nothing in it. You don't get a chance to put anything in it. It's just empty time.”
Llewellyn King is executive producer and host of “White House Chronicle” on PBS. His e-mail is lking@kingpublishing.com.
The unsolved mystery of CFS and its AIDS-like misery
By Llewellyn King, June 2, 2011:
What's in a name? A great deal, if you suffer from awful, long-term diseases that have no cure.
Chronic fatigue syndrome (CFS) is a name that infuriates patients, who number perhaps 1 million to 4 million in the United States and 17 million worldwide. It also frustrates the small but dedicated cadre of doctors and researchers who have made the disease and its casualties their concern.
The Centers for Disease Control in Atlanta picked the CFS moniker in 1988, although the term myalgic encephalomyelitis (ME) is still in use in Europe and elsewhere and is favored by patients.
The new name quickly became despised because “it trivializes the disease and misleads people,” in the words of Leonard Jason, professor of psychology at DePaul University in Chicago. Certainly it brings to mind chronic whiners and everyone's everyday fatigue.
Part of the misleading, Jason and numerous medical professionals have noticed, is that the name has allowed governments and psychiatrists, especially in Britain, to sweep a plethora of psychological diagnoses into the tent. This obscures the central unsolved mystery of CFS and its AIDS-like misery, while diverting government funding away from serious biomedical research. Jason and some of his colleagues believe that the most promising lines of investigation, pathogens, are being under-researched in the process.
Two years ago, the journal Science published the results of joint research by three teams of investigators pointing to the retrovirus XMRV as a likely culprit. But in a disappointing setback to CFS sufferers, the journal published two online articles Tuesday backing away from this conclusion. Although disheartening to the CFS community, this does not put everything back to square one. The most current thinking is that although CFS may be caused by a combination of factors, including genetic predisposition, the most likely trigger is one or more pathogens and the immune system’s hyper-response to infection.
“The immune system pours out its toxins to stop this agent,” Dr. Jay Levy, a University of California professor who co-authored the new studies told The New York Times. “And then the immune system doesn’t calm down.”
Although it has been around for centuries, and variously labeled, modern concern with the disease dates to a major outbreak at London's Royal Free Hospital in 1955. That outbreak was big enough -- nearly 300 sufferers -- to worry public health officials.
Its appearance in a cluster at the hospital suggested that it was contagious. Then, as now, there was no real treatment and no clue as to the path of the potential contagion: Was it airborne or foodborne? How about contaminated surfaces? Were bodily fluids involved? Was there a genetic link?
None of those questions have been answered. What is known is that the disease can appear in clusters, but it is more often found in isolated cases. It has spread in families, making it frightening; but the spread is rare, and seemingly random.
The next major event to get the attention of health professionals was in Nevada at Incline Village, a resort on Lake Tahoe, in 1985. At over 300 cases, it proved too big to ignore, finally attracting attention from the CDC as well as state public health authorities.
The CDC sent two young epidemiologists to investigate the outbreak, Gary Holmes and Jon Kaplan. They estimated the number of sufferers at perhaps 20,000 throughout the United States, a majority of whom were women. The same year, a second outbreak occurred in Lyndonville, a farming and manufacturing village in the northwest corner of New York state, with 216 cases out of a population of 900. Lyndonville only had one doctor, David Bell. He has followed the disease's progress tirelessly, and he has become something of a trailblazer in the field.
Over the years, the disease popped up around the country, attracting distinguished researchers in its wake. In 1987, Harvard Medical School professor Anthony Komaroff published a report about increasingly significant numbers in his Boston practice. Dr. Nancy Klimas, an immunologist and AIDS expert at the University of Miami, found her clinic flooded with sufferers from the new disease and soon found their immune systems showed strange characteristics.
The numbers were clearly overflowing the CDC's estimate, but no one yet realized the extent.
Then entered Jason and his team of researchers at DePaul University. They studied the disease in society from a psychological point of view and found in 1990 about 1 million sufferers in the United States.
They also believe the disease was caused by an unknown pathogen, was not psychological in nature, and that the cure rate was extremely low. Additionally, they and other researchers found that one of the prevailing symptoms was immune system suppression.
For most patients, CFS is a one-way ticket to hell. The affliction is acute and mostly incurable. Horrifically, it takes away even life's littlest pleasures.
According to many interviews and hundreds of e-mails I have received since first covering the disease, sufferers are hit first with symptoms of what seems to be flu. Sometimes there is a short, deceptive remission -- sometimes two or three. Then the pattern emerges of collapse after every exertion, especially exercise. Finally, full onset occurs: There are no more normal days, only different degrees of weakness, pain and other symptoms. Doctors term the disease relapsing and remitting. That means you might have weeks, months or years of slightly better days, and then stretches -- often years, sometimes decades -- of almost total helplessness. It is goodbye to the life you have known; goodbye to work, to hobbies, to lovers and spouses, to everything short of hope.
Deborah Waroff, a gifted New York author and securities analyst, is typical in the devastation of her life. Before, Waroff was a skier, a sailor, a passionate squash and tennis player. Now the aloneness of the disease weighs her down. Very old friends -- some from her days at Harvard, a few from childhood, a handful from work -- sustain her with telephone calls, when she can answer the phone, and some drop by. Nonetheless, the brutal loneliness is always there.
Waroff was first felled at the end of July in 1989. Her engagement calendar grew full of forlorn cancellations for dinners, parties and meetings. One day in 1991, a bad headache arrived that lasted three days; after that, it came again and again.
Gradually, with help from a tireless and creative doctor, Waroff began to find medications and methods that would allow her to work a few hours a day. Pushing herself with sheer willpower to complete a chore would exaggerate her symptoms -- more mixed-up speech, stumbles, near-falls, dizziness, rising fevers. Afterward, she would be immobilized for days.
Then things got worse.
In September 2003, Waroff woke up to find that she was too weak to fill out a simple form -- just to renew library books -- and fax it. That was the beginning of month after month of near-death incapacity. “I was as weak as you can imagine. I lay on the couch, its high back and sides making me think how much this was like being in a coffin, inert, my consciousness flattened by illness. I was too weak to read and often too weak to watch television. I would turn my back to the screen and let the sound wash over me, not taking it in.”
CFS, like AIDS, suppresses the immune system. Typical symptoms include tremendous fatigue that is unrelieved by sleep, as well as flare-ups of herpes- family diseases (such as HHV-6 and Epstein-Barr). Other typical symptoms include swelling of the lymph nodes, muscle aches and other pain, dysphasia (the inability to use the right words), general cognitive failure, nausea and faintness.
Elisabeth Tova Bailey, once a professional gardener in Maine, was felled by CFS. Unable to leave her bed for more than a year, she filled her days by watching a single snail in a terrarium make its fascinating way through life.
When she was feeling somewhat better, Bailey studied the snail through the wonderful work of the 19th-century naturalists -- that special breed of romantics who studied by watching, rather than by dissecting in the lab. The result is the sweet, well-reviewed book, The Sound of a Wild Snail Eating.
The most famous person to have CFS, and to have managed in great adversity to be productive, is Laura Hillenbrand who has over time written two incontrovertible bestsellers, Seabiscuit: An American Legend and Unbroken: A World War II Story of Survival.
Hillenbrand’s achievement is Herculean. She seldom is able to leave her home in Washington, D.C. In a recent interview, she told the story of how she had to leave her own wedding because she was so sick.
Statistically, two-thirds more women are afflicted than men. But I have heard from a lot of men, including a medical doctor and a young man, who was thrown out by his father who accused him of malingering. His plight is terrible, as is the plight of other people who do not have the intellectual capital or financial resources to do anything but suffer in isolation. Insurance companies drop coverage routinely, and many doctors misdiagnose or are influenced by psychiatric arguments.
Recovery, like that of DePaul's Leonard Jason, is rare. If it does not occur within the first two years, it is unlikely to occur at all. Usually only the young and well-supported socially are able to regain a good part of the health they once had. The beacon of hope in this wasteland of human wreckage is a private institute in Reno, Nev. Affiliated with the University of Nevada, it is called The Whittemore Peterson Institute for Neuro-Immune Disease (WPI). It was founded and funded by Harvey Whittemore and his wife, Annette. Their 33-year-old daughter, Andrea Whittemore Goad, has been a CFS sufferer since she was 11.
The medical establishment has been cool to WPI, and the NIH turned down all six research grant applications it made last year. But at least 1 million very sick Americans are cheering for this frontal attack on CFS, which they prefer to call ME/CFS in deference to the older, less trivializing name.
While these things are argued, the life in limbo that so many endure is described by Waroff this way: “You know the trouble with this disease? All this time goes by with nothing in it. You don't get a chance to put anything in it. It's just empty time.”
Llewellyn King is executive producer and host of “White House Chronicle” on PBS. His e-mail is lking@kingpublishing.com.
What's in a name? A great deal, if you suffer from awful, long-term diseases that have no cure.
Chronic fatigue syndrome (CFS) is a name that infuriates patients, who number perhaps 1 million to 4 million in the United States and 17 million worldwide. It also frustrates the small but dedicated cadre of doctors and researchers who have made the disease and its casualties their concern.
The Centers for Disease Control in Atlanta picked the CFS moniker in 1988, although the term myalgic encephalomyelitis (ME) is still in use in Europe and elsewhere and is favored by patients.
The new name quickly became despised because “it trivializes the disease and misleads people,” in the words of Leonard Jason, professor of psychology at DePaul University in Chicago. Certainly it brings to mind chronic whiners and everyone's everyday fatigue.
Part of the misleading, Jason and numerous medical professionals have noticed, is that the name has allowed governments and psychiatrists, especially in Britain, to sweep a plethora of psychological diagnoses into the tent. This obscures the central unsolved mystery of CFS and its AIDS-like misery, while diverting government funding away from serious biomedical research. Jason and some of his colleagues believe that the most promising lines of investigation, pathogens, are being under-researched in the process.
Two years ago, the journal Science published the results of joint research by three teams of investigators pointing to the retrovirus XMRV as a likely culprit. But in a disappointing setback to CFS sufferers, the journal published two online articles Tuesday backing away from this conclusion. Although disheartening to the CFS community, this does not put everything back to square one. The most current thinking is that although CFS may be caused by a combination of factors, including genetic predisposition, the most likely trigger is one or more pathogens and the immune system’s hyper-response to infection.
“The immune system pours out its toxins to stop this agent,” Dr. Jay Levy, a University of California professor who co-authored the new studies told The New York Times. “And then the immune system doesn’t calm down.”
Although it has been around for centuries, and variously labeled, modern concern with the disease dates to a major outbreak at London's Royal Free Hospital in 1955. That outbreak was big enough -- nearly 300 sufferers -- to worry public health officials.
Its appearance in a cluster at the hospital suggested that it was contagious. Then, as now, there was no real treatment and no clue as to the path of the potential contagion: Was it airborne or foodborne? How about contaminated surfaces? Were bodily fluids involved? Was there a genetic link?
None of those questions have been answered. What is known is that the disease can appear in clusters, but it is more often found in isolated cases. It has spread in families, making it frightening; but the spread is rare, and seemingly random.
The next major event to get the attention of health professionals was in Nevada at Incline Village, a resort on Lake Tahoe, in 1985. At over 300 cases, it proved too big to ignore, finally attracting attention from the CDC as well as state public health authorities.
The CDC sent two young epidemiologists to investigate the outbreak, Gary Holmes and Jon Kaplan. They estimated the number of sufferers at perhaps 20,000 throughout the United States, a majority of whom were women. The same year, a second outbreak occurred in Lyndonville, a farming and manufacturing village in the northwest corner of New York state, with 216 cases out of a population of 900. Lyndonville only had one doctor, David Bell. He has followed the disease's progress tirelessly, and he has become something of a trailblazer in the field.
Over the years, the disease popped up around the country, attracting distinguished researchers in its wake. In 1987, Harvard Medical School professor Anthony Komaroff published a report about increasingly significant numbers in his Boston practice. Dr. Nancy Klimas, an immunologist and AIDS expert at the University of Miami, found her clinic flooded with sufferers from the new disease and soon found their immune systems showed strange characteristics.
The numbers were clearly overflowing the CDC's estimate, but no one yet realized the extent.
Then entered Jason and his team of researchers at DePaul University. They studied the disease in society from a psychological point of view and found in 1990 about 1 million sufferers in the United States.
They also believe the disease was caused by an unknown pathogen, was not psychological in nature, and that the cure rate was extremely low. Additionally, they and other researchers found that one of the prevailing symptoms was immune system suppression.
For most patients, CFS is a one-way ticket to hell. The affliction is acute and mostly incurable. Horrifically, it takes away even life's littlest pleasures.
According to many interviews and hundreds of e-mails I have received since first covering the disease, sufferers are hit first with symptoms of what seems to be flu. Sometimes there is a short, deceptive remission -- sometimes two or three. Then the pattern emerges of collapse after every exertion, especially exercise. Finally, full onset occurs: There are no more normal days, only different degrees of weakness, pain and other symptoms. Doctors term the disease relapsing and remitting. That means you might have weeks, months or years of slightly better days, and then stretches -- often years, sometimes decades -- of almost total helplessness. It is goodbye to the life you have known; goodbye to work, to hobbies, to lovers and spouses, to everything short of hope.
Deborah Waroff, a gifted New York author and securities analyst, is typical in the devastation of her life. Before, Waroff was a skier, a sailor, a passionate squash and tennis player. Now the aloneness of the disease weighs her down. Very old friends -- some from her days at Harvard, a few from childhood, a handful from work -- sustain her with telephone calls, when she can answer the phone, and some drop by. Nonetheless, the brutal loneliness is always there.
Waroff was first felled at the end of July in 1989. Her engagement calendar grew full of forlorn cancellations for dinners, parties and meetings. One day in 1991, a bad headache arrived that lasted three days; after that, it came again and again.
Gradually, with help from a tireless and creative doctor, Waroff began to find medications and methods that would allow her to work a few hours a day. Pushing herself with sheer willpower to complete a chore would exaggerate her symptoms -- more mixed-up speech, stumbles, near-falls, dizziness, rising fevers. Afterward, she would be immobilized for days.
Then things got worse.
In September 2003, Waroff woke up to find that she was too weak to fill out a simple form -- just to renew library books -- and fax it. That was the beginning of month after month of near-death incapacity. “I was as weak as you can imagine. I lay on the couch, its high back and sides making me think how much this was like being in a coffin, inert, my consciousness flattened by illness. I was too weak to read and often too weak to watch television. I would turn my back to the screen and let the sound wash over me, not taking it in.”
CFS, like AIDS, suppresses the immune system. Typical symptoms include tremendous fatigue that is unrelieved by sleep, as well as flare-ups of herpes- family diseases (such as HHV-6 and Epstein-Barr). Other typical symptoms include swelling of the lymph nodes, muscle aches and other pain, dysphasia (the inability to use the right words), general cognitive failure, nausea and faintness.
Elisabeth Tova Bailey, once a professional gardener in Maine, was felled by CFS. Unable to leave her bed for more than a year, she filled her days by watching a single snail in a terrarium make its fascinating way through life.
When she was feeling somewhat better, Bailey studied the snail through the wonderful work of the 19th-century naturalists -- that special breed of romantics who studied by watching, rather than by dissecting in the lab. The result is the sweet, well-reviewed book, The Sound of a Wild Snail Eating.
The most famous person to have CFS, and to have managed in great adversity to be productive, is Laura Hillenbrand who has over time written two incontrovertible bestsellers, Seabiscuit: An American Legend and Unbroken: A World War II Story of Survival.
Hillenbrand’s achievement is Herculean. She seldom is able to leave her home in Washington, D.C. In a recent interview, she told the story of how she had to leave her own wedding because she was so sick.
Statistically, two-thirds more women are afflicted than men. But I have heard from a lot of men, including a medical doctor and a young man, who was thrown out by his father who accused him of malingering. His plight is terrible, as is the plight of other people who do not have the intellectual capital or financial resources to do anything but suffer in isolation. Insurance companies drop coverage routinely, and many doctors misdiagnose or are influenced by psychiatric arguments.
Recovery, like that of DePaul's Leonard Jason, is rare. If it does not occur within the first two years, it is unlikely to occur at all. Usually only the young and well-supported socially are able to regain a good part of the health they once had. The beacon of hope in this wasteland of human wreckage is a private institute in Reno, Nev. Affiliated with the University of Nevada, it is called The Whittemore Peterson Institute for Neuro-Immune Disease (WPI). It was founded and funded by Harvey Whittemore and his wife, Annette. Their 33-year-old daughter, Andrea Whittemore Goad, has been a CFS sufferer since she was 11.
The medical establishment has been cool to WPI, and the NIH turned down all six research grant applications it made last year. But at least 1 million very sick Americans are cheering for this frontal attack on CFS, which they prefer to call ME/CFS in deference to the older, less trivializing name.
While these things are argued, the life in limbo that so many endure is described by Waroff this way: “You know the trouble with this disease? All this time goes by with nothing in it. You don't get a chance to put anything in it. It's just empty time.”
Llewellyn King is executive producer and host of “White House Chronicle” on PBS. His e-mail is lking@kingpublishing.com.
Rivka Solomon Acts Up for ME/CFS from Her bed
June 2, 2011 by Paula Kamen, msmagazine.com:
Rivka Solomon, the daughter of 1960s activists, has long been a rabble rouser. Her 2002 edited anthology, That Takes Ovaries!, now in its sixth printing, still inspires action with its essays by women telling their true stories of “being bold and brazen, outrageous or courageous”–from rallying against sexual harassment to chewing out a burglar in the act. That book (and play of the same name) has spurred its own international movement, serving as a blueprint for at least 600 open-mike speak-outs and performances in which girls and women celebrate their own “ovarian acts.”
But the amazing part is that she has done much of this from bed.
In 1990, while she was a graduate student studying international relations, she got sick, as she describes it, with an unknown illness from hell that took away all my physical energy and my brainpower. … The brain fog that accompanied–and still accompanies–the illness was scary. When I was halfway through a sentence, I’d forget what I was talking about. I forgot my own phone number. The exhaustion is so extreme, it is difficult to engage in routine tasks, like taking a simple shower. I crawled into bed and stayed in or near it for much of the next 20 years, and I’m still there now, to this day.
Solomon, now 48, who lives in the Boston area, was diagnosed with chronic fatigue syndrome (CFS), or what is officially termed ME/CFS, myalgic encephalomyelitis/chronic fatigue syndrome.
ME/CFS now has no treatment or cure, and typically creates extremely disability for the estimated one million sufferers in this country and 17 million worldwide. Adding to that suffering is the public stigma that it is all in their heads. As a result, the U.S. government has been resistant to fund research into the disease, with only an estimated $6 million allotted to it yearly.
So, following her own example of grassroots organizing, Solomon has been spearheading historic protests in the U.S. to raise awareness of the problem. She began last year with a one-woman protest in front of the Department of Health and Human Services (HHS) and Red Cross headquarters in Washington, D.C. She didn’t leave her bed to make her next protest video, a comedic one “where me and my family are demanding–via singing–’clinical trials now!’ for ME/CFS.’”
Most notably, ... Read more>>
Rivka Solomon, the daughter of 1960s activists, has long been a rabble rouser. Her 2002 edited anthology, That Takes Ovaries!, now in its sixth printing, still inspires action with its essays by women telling their true stories of “being bold and brazen, outrageous or courageous”–from rallying against sexual harassment to chewing out a burglar in the act. That book (and play of the same name) has spurred its own international movement, serving as a blueprint for at least 600 open-mike speak-outs and performances in which girls and women celebrate their own “ovarian acts.”
But the amazing part is that she has done much of this from bed.
In 1990, while she was a graduate student studying international relations, she got sick, as she describes it, with an unknown illness from hell that took away all my physical energy and my brainpower. … The brain fog that accompanied–and still accompanies–the illness was scary. When I was halfway through a sentence, I’d forget what I was talking about. I forgot my own phone number. The exhaustion is so extreme, it is difficult to engage in routine tasks, like taking a simple shower. I crawled into bed and stayed in or near it for much of the next 20 years, and I’m still there now, to this day.
Solomon, now 48, who lives in the Boston area, was diagnosed with chronic fatigue syndrome (CFS), or what is officially termed ME/CFS, myalgic encephalomyelitis/chronic fatigue syndrome.
ME/CFS now has no treatment or cure, and typically creates extremely disability for the estimated one million sufferers in this country and 17 million worldwide. Adding to that suffering is the public stigma that it is all in their heads. As a result, the U.S. government has been resistant to fund research into the disease, with only an estimated $6 million allotted to it yearly.
So, following her own example of grassroots organizing, Solomon has been spearheading historic protests in the U.S. to raise awareness of the problem. She began last year with a one-woman protest in front of the Department of Health and Human Services (HHS) and Red Cross headquarters in Washington, D.C. She didn’t leave her bed to make her next protest video, a comedic one “where me and my family are demanding–via singing–’clinical trials now!’ for ME/CFS.’”
Most notably, ... Read more>>
Thursday, June 2, 2011
A brilliant reply to Science's "Editorial Expression of Concern" regarding the Oct. 2009 study by Lombardi et al.
Please sign the petition: http://www.change.org/petitions/an-open-letter-to-the-editors-of-science-2
=================================
To the editors of Science:
I was greatly saddened to see your May 31, 2011, “Editorial Expression of Concern” (EEC) regarding Lombardi et al (Oct 2009).
As rightly stated by Judy Mikovits (1), this action on your part is “premature” to say the least. In fact, your EEC all but admits this outright: “Science eagerly awaits the outcome of these further studies and will take appropriate action when their results are known.” I dare say you've already taken action (albeit of a purely inappropriate sort) in the form of this editorial and your request for retraction. Unfortunately, these actions will do little but cast a shadow of intimidation over the future of XMRV/HGRV research, a future that you simultaneously concede is still playing out. Was it your intention to foster intimidation and short-circuit the scientific process?
In order to partially justify your concern over Lombardi et al, you state: “Since then, at least 10 studies conducted by other investigators and published elsewhere have reported a failure to detect XMRV in independent populations of CFS patients.” This line of reasoning is fundamentally flawed in at least two ways:
Firstly, it selectively ignores any and all evidence supporting Lombardi et al. Much of this evidence has been concisely presented by Judy Mikovits in her response (1), so I will not repeat it in detail. Nonetheless, the palpable bias of this statement is very disconcerting.
Secondly, this argument belies a woefully unscientific reliance on counting studies instead of analyzing methods. None of these negative studies, including Knox et al, represents a genuine replication attempt. This has been made clear by Annette Whittemore’s detailing of many (though not all) methodological differences in response to your EEC (2). It should not need to be reiterated that no number of non-replication studies can ever substitute for genuine replication, especially when employing techniques as intricate as those in question. How is it that the world’s premier scientific publication can be persuaded by quantity over quality, by tally over technique, by rhetoric over replication?
This latter issue is problematic for other reasons as well. It creates a self-fulfilling outcome dictated largely if not entirely by money and influence. Quantity is trumpeted as “consensus,” which in turn creates perceptual bias in favor of this faux “consensus.” It is well-known that since the publication of Lombardi et al, its authors have been denied for funding numerous times (six-plus times by the NIH) and have been blocked from publishing further evidence in support of their original paper. The truism that “negative studies are rarely published” has been turned upon its head with respect to XMRV research, where those who have demonstrated an ability to find the virus are starved for resources and shunned at every turn, while those who demonstrate abhorrence toward genuine replication are lavished with funds and granted journal space without so much as the peer-review equivalent of a gentle pat down.
You further support your concern by appealing to the conclusions of Knox et al and Paprotka et al.
With respect to Knox et al, it is made clear in the response from the Lombardi et al authors (1, 2, 3) that no attempt was made to faithfully replicate their methods. PCR is a complex process dependent on many variables, many if not all of which were modified by the authors of Knox et al. Their assays failed to detect XMRV in clinically positive samples. As such, Knox et al is merely another "failure to detect" using novel, clinically-unvalidated methods. I would normally have thought such banal attempts rather below the stature of Science. Certainly no amount of publication prominence can transform absence of evidence into evidence of absence, as your EEC implies.
The issue of clinical assay validation is a very critical point worth exploring further. None of the authors of negative studies to date have proven the ability of their assays to detect virus in human clinical samples. In the cases of Knox et al and Shin et al, the authors clearly demonstrated the insufficiency of their assays against clinical positives. In all of these negative studies, only the analytical sensitivity and specificity of their assays was shown, and this was assumed to be sufficient. Needless to say this would not be sufficient for any assays intended for clinical diagnosis. As the issue here is to determine disease association with a retrovirus with a very low copy number, it is vital to prove that one's assay can detect viral nucleic acid sequences in their natural matrix and naturally occurring structures (circular DNA, pre-integration complexes, and integrated DNA), which are very different chemically and physically from plasmid spiked into water, placental DNA, or even blood.
With respect to Paprotka et al, you claim that “laboratory contamination with XMRV produced by a cell line (22Rv1) derived from these early xenograft experiments is the most likely explanation for detection of the virus in patient samples.” This claim embraces a profound, unsupported leap from possible origination event to ubiquitous presence in laboratories that have never used any known contaminated materials. It is also strange that this presumed (not proven) contamination seems to have a strong and persistent affinity for patient samples over control samples.
Furthermore, the conclusion of Paprotka et al that this supposed recombination is the "most likely" origination event is largely speculative and powered primarily by the exclusion of very plausible alternative explanations. For example, their failure to find XMRV in progenitor prostate cancer xenografts does not conclusively rule out the possibility that one (or more) of these xenografts was already infected (especially with the data showing prostate cancer association). Given the difficulty of many researchers in finding XMRV via PCR, as well as the fact that propagation of these cell lines requires use of materials (e.g. testosterone) that would induce replication, it is quite plausible that Paprotka et al were only able to detect XMRV in the resultant cell line despite its earlier introduction via one of the xenografts. This explanation could be deemed speculative, but unfortunately it is no less supported by their evidence than their own conclusions.
Lastly, I want to point out the unscientific nature of retraction itself. Barring cases of clearly demonstrated fraud or manipulation (charges that no one could plausibly level at Lombardi et al), all data is important to the scientific process, both true and false. Science is the process of data accumulation; it is a record of both mistakes and successes. It is not a retrospective whitewash of everything except what is deemed correct at present. For one thing, some "mistakes" are vindicated in time. For another, genuine mistakes are still instructive to other researchers. If, as many seem to believe, Lombardi et al is the result of pervasive and devious (to the point of mimicking a real human infection in multiple ways!) contamination, is there truly no value in retaining the one study that has most thoroughly revealed the extent and nature of this issue and the potential experimental errors that exacerbate it?
As the gatekeepers of the world’s preeminent scientific publication, I believe you have a moral obligation to steward the honest pursuit of truth, no matter how frail and beleaguered, through the seething proclivities of human weakness. Here you have not only failed in this task, you have sacrificed honest inquiry at the altar of expediency. I am left wondering: what happened to science, Science?
In light of these concerns, I believe it behooves the editors Science to publicly account for the following questions:
1. Was Science made aware of the gross conflicts of interest between Konstance Knox and the WPI prior to its publication of Knox et al? If so, how did it deem these conflicts of interest acceptable and why were they not included as part of the publication? If not, will the publication of Knox et al be reconsidered with respect to this information? I sincerely hope that Science hasn't become a willful vehicle for vendetta.
2. Who were the peer reviewers of both Paprotka et al and Knox et al? Have any of the reviewers displayed prior public bias against the original Lombardi et al findings?
3. Will you grant the authors of Lombardi et al time and space to augment the findings of their original paper with new data?
4. Will you consider retracting your “Editorial Expression of Concern” in light of the numerous and varied criticisms leveled by myself and others?
I sincerely hope you will provide answers to these very pertinent questions in order to restore faith in your publication following the rather brazen and unwarranted issuance of this editorial.
Sincerely,
asleep
(1) http://www.wpinstitute.org/news/docs/FinalreplytoScienceWPI.pdf
(2) http://files.me.com/jdj88/tnmi0f
(3) http://files.me.com/jdj88/hok3p2
=================================
To the editors of Science:
I was greatly saddened to see your May 31, 2011, “Editorial Expression of Concern” (EEC) regarding Lombardi et al (Oct 2009).
As rightly stated by Judy Mikovits (1), this action on your part is “premature” to say the least. In fact, your EEC all but admits this outright: “Science eagerly awaits the outcome of these further studies and will take appropriate action when their results are known.” I dare say you've already taken action (albeit of a purely inappropriate sort) in the form of this editorial and your request for retraction. Unfortunately, these actions will do little but cast a shadow of intimidation over the future of XMRV/HGRV research, a future that you simultaneously concede is still playing out. Was it your intention to foster intimidation and short-circuit the scientific process?
In order to partially justify your concern over Lombardi et al, you state: “Since then, at least 10 studies conducted by other investigators and published elsewhere have reported a failure to detect XMRV in independent populations of CFS patients.” This line of reasoning is fundamentally flawed in at least two ways:
Firstly, it selectively ignores any and all evidence supporting Lombardi et al. Much of this evidence has been concisely presented by Judy Mikovits in her response (1), so I will not repeat it in detail. Nonetheless, the palpable bias of this statement is very disconcerting.
Secondly, this argument belies a woefully unscientific reliance on counting studies instead of analyzing methods. None of these negative studies, including Knox et al, represents a genuine replication attempt. This has been made clear by Annette Whittemore’s detailing of many (though not all) methodological differences in response to your EEC (2). It should not need to be reiterated that no number of non-replication studies can ever substitute for genuine replication, especially when employing techniques as intricate as those in question. How is it that the world’s premier scientific publication can be persuaded by quantity over quality, by tally over technique, by rhetoric over replication?
This latter issue is problematic for other reasons as well. It creates a self-fulfilling outcome dictated largely if not entirely by money and influence. Quantity is trumpeted as “consensus,” which in turn creates perceptual bias in favor of this faux “consensus.” It is well-known that since the publication of Lombardi et al, its authors have been denied for funding numerous times (six-plus times by the NIH) and have been blocked from publishing further evidence in support of their original paper. The truism that “negative studies are rarely published” has been turned upon its head with respect to XMRV research, where those who have demonstrated an ability to find the virus are starved for resources and shunned at every turn, while those who demonstrate abhorrence toward genuine replication are lavished with funds and granted journal space without so much as the peer-review equivalent of a gentle pat down.
You further support your concern by appealing to the conclusions of Knox et al and Paprotka et al.
With respect to Knox et al, it is made clear in the response from the Lombardi et al authors (1, 2, 3) that no attempt was made to faithfully replicate their methods. PCR is a complex process dependent on many variables, many if not all of which were modified by the authors of Knox et al. Their assays failed to detect XMRV in clinically positive samples. As such, Knox et al is merely another "failure to detect" using novel, clinically-unvalidated methods. I would normally have thought such banal attempts rather below the stature of Science. Certainly no amount of publication prominence can transform absence of evidence into evidence of absence, as your EEC implies.
The issue of clinical assay validation is a very critical point worth exploring further. None of the authors of negative studies to date have proven the ability of their assays to detect virus in human clinical samples. In the cases of Knox et al and Shin et al, the authors clearly demonstrated the insufficiency of their assays against clinical positives. In all of these negative studies, only the analytical sensitivity and specificity of their assays was shown, and this was assumed to be sufficient. Needless to say this would not be sufficient for any assays intended for clinical diagnosis. As the issue here is to determine disease association with a retrovirus with a very low copy number, it is vital to prove that one's assay can detect viral nucleic acid sequences in their natural matrix and naturally occurring structures (circular DNA, pre-integration complexes, and integrated DNA), which are very different chemically and physically from plasmid spiked into water, placental DNA, or even blood.
With respect to Paprotka et al, you claim that “laboratory contamination with XMRV produced by a cell line (22Rv1) derived from these early xenograft experiments is the most likely explanation for detection of the virus in patient samples.” This claim embraces a profound, unsupported leap from possible origination event to ubiquitous presence in laboratories that have never used any known contaminated materials. It is also strange that this presumed (not proven) contamination seems to have a strong and persistent affinity for patient samples over control samples.
Furthermore, the conclusion of Paprotka et al that this supposed recombination is the "most likely" origination event is largely speculative and powered primarily by the exclusion of very plausible alternative explanations. For example, their failure to find XMRV in progenitor prostate cancer xenografts does not conclusively rule out the possibility that one (or more) of these xenografts was already infected (especially with the data showing prostate cancer association). Given the difficulty of many researchers in finding XMRV via PCR, as well as the fact that propagation of these cell lines requires use of materials (e.g. testosterone) that would induce replication, it is quite plausible that Paprotka et al were only able to detect XMRV in the resultant cell line despite its earlier introduction via one of the xenografts. This explanation could be deemed speculative, but unfortunately it is no less supported by their evidence than their own conclusions.
Lastly, I want to point out the unscientific nature of retraction itself. Barring cases of clearly demonstrated fraud or manipulation (charges that no one could plausibly level at Lombardi et al), all data is important to the scientific process, both true and false. Science is the process of data accumulation; it is a record of both mistakes and successes. It is not a retrospective whitewash of everything except what is deemed correct at present. For one thing, some "mistakes" are vindicated in time. For another, genuine mistakes are still instructive to other researchers. If, as many seem to believe, Lombardi et al is the result of pervasive and devious (to the point of mimicking a real human infection in multiple ways!) contamination, is there truly no value in retaining the one study that has most thoroughly revealed the extent and nature of this issue and the potential experimental errors that exacerbate it?
As the gatekeepers of the world’s preeminent scientific publication, I believe you have a moral obligation to steward the honest pursuit of truth, no matter how frail and beleaguered, through the seething proclivities of human weakness. Here you have not only failed in this task, you have sacrificed honest inquiry at the altar of expediency. I am left wondering: what happened to science, Science?
In light of these concerns, I believe it behooves the editors Science to publicly account for the following questions:
1. Was Science made aware of the gross conflicts of interest between Konstance Knox and the WPI prior to its publication of Knox et al? If so, how did it deem these conflicts of interest acceptable and why were they not included as part of the publication? If not, will the publication of Knox et al be reconsidered with respect to this information? I sincerely hope that Science hasn't become a willful vehicle for vendetta.
2. Who were the peer reviewers of both Paprotka et al and Knox et al? Have any of the reviewers displayed prior public bias against the original Lombardi et al findings?
3. Will you grant the authors of Lombardi et al time and space to augment the findings of their original paper with new data?
4. Will you consider retracting your “Editorial Expression of Concern” in light of the numerous and varied criticisms leveled by myself and others?
I sincerely hope you will provide answers to these very pertinent questions in order to restore faith in your publication following the rather brazen and unwarranted issuance of this editorial.
Sincerely,
asleep
(1) http://www.wpinstitute.org/news/docs/FinalreplytoScienceWPI.pdf
(2) http://files.me.com/jdj88/tnmi0f
(3) http://files.me.com/jdj88/hok3p2
Wednesday, June 1, 2011
PNAS editor-in-chief Randy Scheckman: Even if the original findings in a paper don’t hold up, “that is an unusual situation to retract a paper under’
By Amy Dockser Marcus, JUNE 1, 2011, WSJ's blog on health and the business of health:
PNAS editor-in-chief Randy Scheckman tells us he is closely following the scientific debate and what it means for the findings reported in that paper, the authors of which include renowned NIH infectious disease specialist Harvey Alter.
The PNAS paper, published last August, has a complicated backstory of its own. When doubts about the findings and worries about contamination were raised after the paper’s acceptance, Alter and his colleagues went back to eight of the patients whose stored samples they used and asked for fresh blood samples. All but one re-tested positive for the viruses.
Scheckman says it’s part of the scientific process for different groups to publish findings, for other groups to try to replicate them, and for researchers to debate conflicting results. Even if the original findings in a paper don’t hold up, “that is an unusual situation to retract a paper under.’”
The PNAS study gave Alter, who is best known for his work on hepatitis, a high profile in the CFS world. At a recent NIH conference on CFS, Alter presided over a spirited debate between John Coffin — a co-author of one of two papers published yesterday in Science calling the XMRV finding into question — and Judy Mikovits of the Whittemore Peterson Institute, which led the team of researchers that reported the CFS-XMRV link in 2009.
Scheckman says he is “interested enough in the debate that I will ask Dr. Alter for comment.”
The Health Blog asked too. Through an NIH spokesperson, Alter replies that the PNAS paper did not link XMRV to chronic fatigue syndrome but rather the larger family of polytropic murine leukemia viruses to which XMRV belongs. The paper never reported finding XMRV itself. Thus the finding that XMRV may be a contaminant traced to cancer cells in mice “does not pertain to the finding” published in PNAS, Alter says.
Since PNAS published the paper, the journal has received a half-dozen papers from other authors documenting no correlation between XMRV and CFS but “we declined to publish all of them because they are not substantial additions to the literature, just more of the same,” says Scheckman.
Alter and his colleagues will have another crack at this issue: their lab, along with Whittemore Peterson and others, are set to participate in an NIH study of XMRV and polytropic murine leukemia viruses that is getting underway.
Read more>>
PNAS editor-in-chief Randy Scheckman tells us he is closely following the scientific debate and what it means for the findings reported in that paper, the authors of which include renowned NIH infectious disease specialist Harvey Alter.
The PNAS paper, published last August, has a complicated backstory of its own. When doubts about the findings and worries about contamination were raised after the paper’s acceptance, Alter and his colleagues went back to eight of the patients whose stored samples they used and asked for fresh blood samples. All but one re-tested positive for the viruses.
Scheckman says it’s part of the scientific process for different groups to publish findings, for other groups to try to replicate them, and for researchers to debate conflicting results. Even if the original findings in a paper don’t hold up, “that is an unusual situation to retract a paper under.’”
The PNAS study gave Alter, who is best known for his work on hepatitis, a high profile in the CFS world. At a recent NIH conference on CFS, Alter presided over a spirited debate between John Coffin — a co-author of one of two papers published yesterday in Science calling the XMRV finding into question — and Judy Mikovits of the Whittemore Peterson Institute, which led the team of researchers that reported the CFS-XMRV link in 2009.
Scheckman says he is “interested enough in the debate that I will ask Dr. Alter for comment.”
The Health Blog asked too. Through an NIH spokesperson, Alter replies that the PNAS paper did not link XMRV to chronic fatigue syndrome but rather the larger family of polytropic murine leukemia viruses to which XMRV belongs. The paper never reported finding XMRV itself. Thus the finding that XMRV may be a contaminant traced to cancer cells in mice “does not pertain to the finding” published in PNAS, Alter says.
Since PNAS published the paper, the journal has received a half-dozen papers from other authors documenting no correlation between XMRV and CFS but “we declined to publish all of them because they are not substantial additions to the literature, just more of the same,” says Scheckman.
Alter and his colleagues will have another crack at this issue: their lab, along with Whittemore Peterson and others, are set to participate in an NIH study of XMRV and polytropic murine leukemia viruses that is getting underway.
Read more>>
Studies are not finding the virus in the blood as XMRV has left the blood and moved into the tissue
JuliaHugoRachel wrote, 6/1/2011 2:42 AM EDT:
It is my perception that patients did not feel "vindicated" by the discovery of XMRV. I think the overall feeling was that of "progression" for a patient population that had been overlooked, ignored, suppressed, oppressed and discounted for over 40+ years. Patients of a debilitating disease don't want vindication, they want MEDICAL TREATMENT. They want THEIR Quality of life BACK. They want to work, they want to hold their grandchildren, they want to participate in life to the fullest and to contribute to society. Maybe your article has missed the boat by not considering a scientific fact at hand. Could it be that this retrovirus has left the blood and plasma and moved into the Tissue? Hence, studies are not finding the virus in the blood, which is common in many stealth viruses. In which case, it would not be found in blood, plasma, spinal fluid, but rather in the tissue. In which case, it would “No Doubt” exist. Perhaps XMRV or MTLV’s are not the causation of CFS….yet perhaps, XMRV plays an important role in the development, progression, initiation or reactivation of other viruses and pathogens scientifically proven to exist in CFS and GWI and LYME and Autism and other associated diseases. To take a “soundbite” and use the word “Doubt or Vindication” in this article is akin to taking away hope from suffering patients and throwing 4-20 million people off of a ship and watching them drown. Is this what humanity has come to? If so, It seems as if we have just regressed into the dark ages. Even worse, up to 10% of anyone, anywhere and anyplace reading thse words could be one of the folks getting shoved off that boat. This is an infectious disease. Check out the HHV-6 Foundation, educate yourselves. If not for yourself, then do so for your children and grandchildren. This is not a "blow" to "fatigue suffers"...this is an impact to patients with a Brain Virus. These patients are Autism/Gulf War illness. Chronic Fatigue Syndrome/Lyme Disease and many other associated notorious diseases such as cancers.
It is my perception that patients did not feel "vindicated" by the discovery of XMRV. I think the overall feeling was that of "progression" for a patient population that had been overlooked, ignored, suppressed, oppressed and discounted for over 40+ years. Patients of a debilitating disease don't want vindication, they want MEDICAL TREATMENT. They want THEIR Quality of life BACK. They want to work, they want to hold their grandchildren, they want to participate in life to the fullest and to contribute to society. Maybe your article has missed the boat by not considering a scientific fact at hand. Could it be that this retrovirus has left the blood and plasma and moved into the Tissue? Hence, studies are not finding the virus in the blood, which is common in many stealth viruses. In which case, it would not be found in blood, plasma, spinal fluid, but rather in the tissue. In which case, it would “No Doubt” exist. Perhaps XMRV or MTLV’s are not the causation of CFS….yet perhaps, XMRV plays an important role in the development, progression, initiation or reactivation of other viruses and pathogens scientifically proven to exist in CFS and GWI and LYME and Autism and other associated diseases. To take a “soundbite” and use the word “Doubt or Vindication” in this article is akin to taking away hope from suffering patients and throwing 4-20 million people off of a ship and watching them drown. Is this what humanity has come to? If so, It seems as if we have just regressed into the dark ages. Even worse, up to 10% of anyone, anywhere and anyplace reading thse words could be one of the folks getting shoved off that boat. This is an infectious disease. Check out the HHV-6 Foundation, educate yourselves. If not for yourself, then do so for your children and grandchildren. This is not a "blow" to "fatigue suffers"...this is an impact to patients with a Brain Virus. These patients are Autism/Gulf War illness. Chronic Fatigue Syndrome/Lyme Disease and many other associated notorious diseases such as cancers.
Prof Racaniello: chronic fatigue syndrome is an infectious disease
By DAVID TULLER
Published: June 1, 2011, nytimes.com:
Dr. Vincent Racaniello, a microbiology professor at Columbia University, said in an interview that it now appeared unlikely that XMRV infection is a cause of chronic fatigue syndrome. But it also would be wrong to conclude that chronic fatigue syndrome is not an infectious disease, he added.
“These patients have a lot of signs of hyper-immune activation, with their immune systems firing almost constantly,” he said.
Dr. Jay Levy, a professor of medicine at the University of California, San Francisco, and the senior author of one of the new studies, said he nonetheless believed that many or most people with chronic fatigue syndrome are suffering from a disease initiated by one or more viruses.
Many of the disease’s symptoms are likely caused by the immune systems’ response to an infection, rather than to the pathogens themselves, he said. Read more>>
Published: June 1, 2011, nytimes.com:
Dr. Vincent Racaniello, a microbiology professor at Columbia University, said in an interview that it now appeared unlikely that XMRV infection is a cause of chronic fatigue syndrome. But it also would be wrong to conclude that chronic fatigue syndrome is not an infectious disease, he added.
“These patients have a lot of signs of hyper-immune activation, with their immune systems firing almost constantly,” he said.
Dr. Jay Levy, a professor of medicine at the University of California, San Francisco, and the senior author of one of the new studies, said he nonetheless believed that many or most people with chronic fatigue syndrome are suffering from a disease initiated by one or more viruses.
Many of the disease’s symptoms are likely caused by the immune systems’ response to an infection, rather than to the pathogens themselves, he said. Read more>>
Negative XMRV studies "replicate" the findings by changing all the parameters ...
Gerwyn said...
lets try and replicate the findings of a chemical reaction by changing all the parameters that govern the performance of that chemical reaction
it sounds crazy does it not
but PCR is a chemical reaction and that is precisely what those people conducting the 00 studies with 00 talent are doing
Levi did not even use the same primer sets as Lombardi for gods sake!
The letters of concern should be about the level of knowledge of the Science editors and or their impartiality
I mentioned this to my sons Chemistry teacher and she would not believe me. When she saw I was serious she burst out laughing and said "well what do you expect from biologists. Why not get some real scientists involved"
lets try and replicate the findings of a chemical reaction by changing all the parameters that govern the performance of that chemical reaction
it sounds crazy does it not
but PCR is a chemical reaction and that is precisely what those people conducting the 00 studies with 00 talent are doing
Levi did not even use the same primer sets as Lombardi for gods sake!
The letters of concern should be about the level of knowledge of the Science editors and or their impartiality
I mentioned this to my sons Chemistry teacher and she would not believe me. When she saw I was serious she burst out laughing and said "well what do you expect from biologists. Why not get some real scientists involved"
professor Lipkin: Calls to retract the XMRV paper at this point are premature
By Elizabeth Lopatto and Michelle Fay Cortez - Jun 1, 2011, bloomberg.com:
The study of 150 patients with chronic fatigue syndrome and another 150 healthy volunteers should be complete by early 2012, said Ian Lipkin, a professor of epidemiology at Columbia University in New York, who is leading the effort. Until the research is complete, it’s too soon to know whether there is a link between a virus and chronic fatigue, he said.
“Calls to retract the paper at this point are premature,” said Lipkin, director of Columbia’s Center for Infection and Immunity, in a telephone interview. “We need to let this study take its course, look at the data in a coherent fashion and figure out what it tells us.” While interesting, “the publications don’t dissuade us from continuing our work.”
More than 1 million people in the U.S. have chronic fatigue syndrome, more than those with multiple sclerosis, lupus, or lung cancer, according to the Centers for Disease Control and Prevention in Atlanta. The condition, which saps people of energy for months or years, has no proven cause and mostly affects women ages 30 to 50, according to the National Institutes of Health. Women are four times more likely than men to develop the disease.
Read more>>
To contact the reporters on this story: Elizabeth Lopatto in New York at elopatto@bloomberg.net; Michelle Fay Cortez in Minneapolis at mcortez@bloomberg.net
To contact the editor responsible for this story: Reg Gale at rgale5@bloomberg.net.
The study of 150 patients with chronic fatigue syndrome and another 150 healthy volunteers should be complete by early 2012, said Ian Lipkin, a professor of epidemiology at Columbia University in New York, who is leading the effort. Until the research is complete, it’s too soon to know whether there is a link between a virus and chronic fatigue, he said.
“Calls to retract the paper at this point are premature,” said Lipkin, director of Columbia’s Center for Infection and Immunity, in a telephone interview. “We need to let this study take its course, look at the data in a coherent fashion and figure out what it tells us.” While interesting, “the publications don’t dissuade us from continuing our work.”
More than 1 million people in the U.S. have chronic fatigue syndrome, more than those with multiple sclerosis, lupus, or lung cancer, according to the Centers for Disease Control and Prevention in Atlanta. The condition, which saps people of energy for months or years, has no proven cause and mostly affects women ages 30 to 50, according to the National Institutes of Health. Women are four times more likely than men to develop the disease.
Read more>>
To contact the reporters on this story: Elizabeth Lopatto in New York at elopatto@bloomberg.net; Michelle Fay Cortez in Minneapolis at mcortez@bloomberg.net
To contact the editor responsible for this story: Reg Gale at rgale5@bloomberg.net.
Ann McPherson’s: I should have been able to choose to die
31 May, 11 | by BMJ Group:
http://blogs.bmj.com/bmj/2011/05/31/ann-mcpherson%E2%80%99s-i-should-have-been-able-to-choose-to-die/
The well known general practitioner and outstanding communicator Ann McPherson died on 28 May 2011 from pancreatic cancer. She is celebrated for her books for patients, including The Diary of a Teenage Health Freak (BMJ 2009;339:b3355); the DIPEx (Database of Individual Patient Experience) charity and its websites (www.healthtalkonline.org and www.youthhealthtalk.org); and Healthcare Professionals for Assisted Dying, the campaigning group that she established and chaired (www.hpad.org.uk). This May, Ann receiving the BMJ Group’s communicator of the year award (BMJ 2011;342:d1824). Here she gives her final message.
“I’m feeling pretty bloody awful. The nurse and doctor came today to incise the abscess around my chest drain and made the unhelpful suggestion that I might need some antibiotics even though antibiotics make me sick. The GP certainly understands where I am coming from, but when I said that I can’t understand why I have to carry on living like this and why I can’t just die, the nurse said, ‘Well you might change your mind.’
“I think it very unlikely I will change my mind, and even if I did I don’t care. It is nice to see people but if I had the choice there is no question that I would prefer to be dead than to see people. Because I feel so ill. I know everyone is different. It’s nothing specific: I just feel ill, and there seems to be nothing that can make that better. I am already on large doses of morphine and midazolam and haloperidol so that I mostly don’t have pain or sickness—but I still feel ill.
“I feel really furious at this. I think it is cruel. In my practice I saw people who felt like this, and I felt I had let them down. I think my GP thinks that, but all she can do is say is sorry and squeeze my hand.”
http://blogs.bmj.com/bmj/2011/05/31/ann-mcpherson%E2%80%99s-i-should-have-been-able-to-choose-to-die/
The well known general practitioner and outstanding communicator Ann McPherson died on 28 May 2011 from pancreatic cancer. She is celebrated for her books for patients, including The Diary of a Teenage Health Freak (BMJ 2009;339:b3355); the DIPEx (Database of Individual Patient Experience) charity and its websites (www.healthtalkonline.org and www.youthhealthtalk.org); and Healthcare Professionals for Assisted Dying, the campaigning group that she established and chaired (www.hpad.org.uk). This May, Ann receiving the BMJ Group’s communicator of the year award (BMJ 2011;342:d1824). Here she gives her final message.
“I’m feeling pretty bloody awful. The nurse and doctor came today to incise the abscess around my chest drain and made the unhelpful suggestion that I might need some antibiotics even though antibiotics make me sick. The GP certainly understands where I am coming from, but when I said that I can’t understand why I have to carry on living like this and why I can’t just die, the nurse said, ‘Well you might change your mind.’
“I think it very unlikely I will change my mind, and even if I did I don’t care. It is nice to see people but if I had the choice there is no question that I would prefer to be dead than to see people. Because I feel so ill. I know everyone is different. It’s nothing specific: I just feel ill, and there seems to be nothing that can make that better. I am already on large doses of morphine and midazolam and haloperidol so that I mostly don’t have pain or sickness—but I still feel ill.
“I feel really furious at this. I think it is cruel. In my practice I saw people who felt like this, and I felt I had let them down. I think my GP thinks that, but all she can do is say is sorry and squeeze my hand.”
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