In the ME/CFS community, since yesterday, there has been a swell of jubilation. This may seem odd to a lot of people considering that researchers just found something in our blood similar to HIV. None of us are shocked by this news because we've always known we had something like HIV, something serious and deadly, but we have had to face a surreal social gaslighting while simultaneously weathering the horror of a terrible, life-destroying illness. Dr. Mark Loveless once said that an ME/CFS patient feels every day significantly the same as an AIDS patient feels two months before death. Now that statement holds more weight: ME is to AIDS what vegetative is to death.
Jody later wrote about this confusing descent for my disability hearing: "It was during the summer of 1992 that I first became aware of the severity of Peggy's illness. I was moving out to San Francisco with Peggy and another friend, and we had decided it would be fun to take some time and drive across the country in two cars. So for almost two weeks we were together 24-hour days. Peggy was fairly incapacitated throughout the trip from a combination of headaches, nausea, and flu-like symptoms. At the time I think we chalked it up to an allergic reaction to something in the Southwest, and encouraged her to push herself to keep up. At some point during the trip it became clear to me that she wasn't just being lazy or tired, but that she was physically unable to keep up and was already straining herself in a dangerous way."
After that, in Providence, I briefly taught a writing workshop out of my apartment for people living with chronic illness. One participant with a teenager with AIDS, whose story was absolutely wrenching and it seemed like he would not live to see his twenties. A couple of years later, I ran into him -- after the dispersion of the AIDS cocktail drugs. He was elated, about to travel to San Francisco -- his T-cells were great, his viral load was almost nonexistent now. How was I? he asked. I gently told him how my health was plummeting.
Dr. Cheney may seem nonplussed by this new discovery since he has witnessed these connections all along. As I wrote about the ME/CFS-AIDS connections in my essay "The Paradox of Lost Fingerprints" in Stricken:
"It cannot be underestimated how much AIDS politics both eclipsed and influenced the lives of CFIDS patients. Many writers have also pointed out bizarre and alarming connections between the two illnesses -- such as similarities in brain scans and elevated HHV-6 titers. Dr. Paul Cheney, though, noticed what is perhaps the most remarkable correlative. When he entered data for 400 CFIDS patients into a computer, noting their time of onset and other factors, he found that CFIDS and AIDS cases have occurred -- over time -- at almost parallel rates of growth. But AIDS medical psychology also dramatically affected CFIDS patients. In the rhetoric of the AIDS years, people were taught to view illness as an outcome of behavior. Every illness in this era was shaped by the furor of AIDS politics. Even [Elaine] Showalter talked about CFIDS and Gulf War syndrome as 'sickness lifestyles.' This description was not unlike the homophobic AIDS rhetoric that confused gay 'lifestyle' with succeptibility. Once contagion was equated with behavior, and identity politics took over, pairing of illness and identity was almost inevitable. A strange contradiction emerged in this era when words such as 'multiculturalism' entered the public arena -- the need to identify, along with the need to believe in the transcendence of inborn identity." 
While AIDS patients got drug cocktails, ME/CFS patients got metaphors -- often offensive, derisive, and soul-crushing metaphors. Those metaphors and the cruel cultural bullying around patients can certainly help explain the two patients Cheney mentioned who committed suicide: now we finally have an explanation for the other three who died of AIDS-like opportunistic infections. The patient-blaming approach can also be blamed for other deaths that weren't suicides, such as the tragic death of Sophia Mirza who was forcibly sectioned to a psychiatric hospital for having severe ME and never recovered from her hospital stay, ultimately dying. As Ostrom wrote in 1993, " Is it possible that a mistake has been made in formulating the definition of AIDS? Is Chronic Fatigue Syndrome actually part of the AIDS epidemic? If this is even a remote possibility, why haven't other books been written about it? Why isn't every health reporter in the country writing about it, every investigative reporter investigating? The answer, I believe, is pretty simple, and it is a problem that has dogged the AIDS epidemic since the beginning: denial." I think we can now acknowledge that people like Mirza have died from this denial, and hopefully prevent more suffering and death.
At the first free medical clinic in America without a religious affiliation -- the Haight-Ashbury Free Clinic -- the motto "Health care is a right, not a privilege" was popularized, the year before I was born. It is not too late to actualize that motto for ME/CFS patients who have spent decades dealing with biased medical care. My blind writer friend on Haight Street said it best to me when she told me how much she hated the parable of the blind men and the elephant. She felt like that parable was an insult to the blind, who actually cultivate their senses, who look further to see the elephant that was there all along. She made it seem so simple, to cultivate awareness of the obvious, to deal with exactly what is there. Hopefully the medical establishment will listen now, to this retroviral elephant that can't be ignored.
09 October 2009
Researchers at the Whittemore Peterson Institute in Reno, USA have
identified genetic material (DNA) from a mouse virus - murine leukaemia
virus-related virus (XMRV) - in 68 out of 101 CFS patients (67%)
compared to 8 out of 218 (3.7%) of healthy people.
blood tests showed that more than 95% of CFS patients have antibodies
to XMRV, indicating they had been infected with the virus, which may
then have lain dormant in their DNA.
research director, Whittemore Peterson Institute, is testing a further
500 blood samples collated from patients diagnosed with CFS in London.
is still early days so we are trying not to get too excited but this
news is bound to raise high hopes among a large patient group that has
been ignored for far too long.
on to prove a definitive cause and effect between this retrovirus and
M.E., it will make an enormous difference to 250,000 British men, women
and children who have M.E. in this country."
Thu Oct 8, 2009 9:57pm BST
cancer also appears to play a role in chronic fatigue syndrome,
according to research that could lead to the first drug treatments for
a mysterious disorder that affects 17 million people worldwide.
blood of 68 out of 101 chronic fatigue syndrome patients. The same
virus showed up in only 8 of 218 healthy people, they reported on
Thursday in the journal Science.
is a retrovirus, a member of the same family of viruses as the AIDS
virus. These viruses carry their genetic information in RNA rather than
DNA, ...October 9, 2009 - By DENISE GRADY - Health / Research
breakthrough in understanding what causes the condition known as
chronic fatigue syndrome (CFS) or ME.
tiredness, irritable bowels, intense headaches, depression and
cognitive dysfunction. Yet for years many doctors argued that Chronic
Fatigue Syndrome didn't exist. They refused even to dignify it with the
name previous sufferers preferred – Myalgic encephalomyelitis. ME, they
said, was just "me" writ large and dismissed it as yuppy flu. In the
event the flu has lasted longer than the yuppies did. Some four million
people suffer from it in the United States alone.
for cures come along at once. Researchers in Utah claim to have
discovered the gene involved. Another team in Nevada have found
compelling evidence that a retrovirus, like HIV, might well be
Breakthrough offers hope to millions of sufferers around the world
By Steve Connor, Science Editor
discovered a strong link between chronic fatigue syndrome, which is
sometimes known as ME or myalgic encephalomyelitis,
Virus Linked to Prostate Cancer Is Also Tied to Chronic Fatigue
By Rob Waters
Oct. 8 (Bloomberg) -- A virus linked to aggressive forms of prostate cancer may
also be tied to chronic fatigue syndrome, a condition that saps people of energy
for months or years.
The virus, XMRV, was found in the blood of two-thirds of a set of tissue samples
taken from people with the condition and 3.7 percent of a group of healthy
individuals, according to a study published today in the journal Science.
Virus Associated With Chronic Fatigue Syndrome
Scientists have found evidence that a virus may play a role in chronic fatigue
Vincent C. Lombardi of the Whittemore Peterson Institute in Reno, Nev., and
scientists elsewhere studied 101 patients with chronic fatigue syndrome, a
baffling, debilitating and controversial condition that affects an estimated 17
million people worldwide. They discovered that 68 of the patients -- 67 percent
-- had a virus in their blood known as the xenotropic murine leukemia
virus-related virus or XMRV. Only eight of 218 similar subjects who did not have
chronic fatigue syndrome -- 3.7 percent -- had the virus in their blood, the
researchers report in a paper published online Thursday by the journal Science.
"Now we have scientific proof that this infectious agent is a significant factor
in ME/CFS," Annette Whittemore said. "Patients and their doctors will soon have
a blood test to verify their diagnosis and provide the answers that they've been
People with the condition are much more likely than others to harbor a
By Nathan Seppa
The long, fruitless search for the cause of chronic fatigue syndrome has taken a
curious turn. Scientists report online October 8 in Science that an obscure
retrovirus shows up in two-thirds of people diagnosed with the condition. The
researchers also show the retrovirus can infect human immune cells.
Posted by Edyta Zielinska
Chronic fatigue syndrome linked to 'cancer virus'
National Institute of Health
Retrovirus Linked to Chronic Fatigue Syndrome, Could Aid in Diagnosis
Recently implicated in some severe prostate cancer patients, the retrovirus XMRV
has now been found in many with chronic fatigue--changing the landscape for
diagnosis and possible treatment
By David Morgan David Morgan 55 mins ago
WASHINGTON (Reuters) – A virus linked to prostate cancer also appears to play a
role in chronic fatigue syndrome, according to research that could lead to the
first drug treatments for a mysterious disorder that affects 17 million people
Researchers found the virus, known as XMRV, in the blood of 68 out of 101
chronic fatigue syndrome patients. The same virus showed up in only 8 of 218
healthy people, they reported on Thursday in the journal Science.
Prostate cancer pathogen may be behind the disease once dubbed 'yuppie flu'.
A study on chronic fatigue syndrome (CFS) has linked the mysterious and
controversial disease to a recently discovered retrovirus. Just last month
researchers found the same virus to be associated with aggressive prostate
Chronic fatigue syndrome is seen as a serious but poorly defined
CFS is marked by debilitating exhaustion and often an array of other symptoms,
including memory and concentration problems and painful muscles and joints. The
underlying cause of the disease is unknown; it is diagnosed only when other
physical and psychiatric diseases have been excluded. Though the disease's
nebulous nature originally drew scepticism from both doctors and the general
public, most of the medical community now perceives it as a serious — if poorly
defined — disease.
Now Judy Mikovits of the Whittemore Peterson Institute for Neuro-Immune Disease
in Reno, Nevada, and her colleagues think they have discovered a potential
pathogenic link to CFS. In patients with the disease from different parts of the
United States, 67% were infected with a retrovirus known as XMRV. Less than 4%
of controls carried the virus.
By AMY DOCKSER MARCUS
Researchers have linked an infectious virus known to cause cancer in animals to
chronic-fatigue syndrome, a major discovery for sufferers of the condition and
one that concerned scientists for its potential public-health implications.
Emerging retrovirus turns up in new patients
Novel virus can spread between people, may lie behind other common illnesses
Electron micrograph of xenotropic murine leukemia virus-related virus (XMRV) in
the blood of a chronic fatigue syndrome patient.
Source: Whittemore Peterson Institute
A retrovirus first seen in prostate cancer patients three years ago has now been
discovered in the blood of people suffering from chronic fatigue syndrome (CFS),
Vincent Lombardi and colleagues report1 today in Science. The virus can be
passed on from person to person and may be linked with other health conditions,
October 8th, 2009 in Medicine & Health / Diseases
From America's Biggest Cover-Up: 50 More Things Everyone Should Know
About The Chronic Fatigue Syndrome Epidemic And Its Link To AIDS by
Neenyah Ostrom, published in 1993
"This book will attempt to
attempt to answer not only that question, but also other, potentially
even more alarming, ones: Is CFS actually part of the AIDS epidemic?
Are CFS and AIDS, in fact, the same illness?
Since the Berlin conference, for anyone interested in observing it,
evidence linking these two refractory epidemics, AIDS and Chronic
Fatigue Syndrome, has continued to accumulate.
Anxiety about the direction of AIDS research had really begun at the
previous international AIDS conference, held in Amsterdam in 1992.
The bombshell of 1992's AIDS conference was the announcement that some
researchers had identified cases of AIDS without evidence of infection
with the 'AIDS virus,' HIV.
These 'non-HIV AIDS cases' had severely depleted T4 (or CD4) cells,
like AIDS patients; they also developed life-threatening opportunistic
What wasn't known to most observers was that one of the researchers who
had first publicly identified some of the non-HIV AIDS cases, Dr.
Sidhur Gupta of the University of California, Irvine, is a Chronic
Fatigue Syndrome researcher.
And some of the non-HIV AIDS cases, it was soon revealed, were actually CFS patients.
Shortly after the June 1992 AIDS conference in Amsterdam, Chronic
Fatigue Syndrome researcher Dr. Paul Cheney announced that he had 20
CFS patients in his practice who had the same immune system
deficiencies as the non-HIV AIDS cases.
The hallmark of the HIV-negative AIDS cases, as defined by the Centers
for Disease Control and Prevention, is a depletion of the T4 (or CD4)
. . .
How can AIDS exist in the absence of the virus that causes it? None of
the AIDS researchers gathered in Amsterdam in June 1992 seemed able to
answer that question.
. . .
Dr. Cheney described the immune system damage seen in CFS patients for
the Food and Drug Administration in May 1993. Dr. Cheney told the FDA
that five of his CFS patients had died during the preceding six
months. Two of these patients committed suicide, which is all too
common among CFS patients. But three of Dr. Cheney's patients who
died, like AIDS patients, succumbed to overwhelming infections that
their damaged immune systems couldn't fight off.
But Dr. Cheney's CFS patients, like the ICL patients, appeared not to
be infected with HIV, even though they developed AIDS-like
immunodeficiencies and, in some cases, life-threatening opportunistic
. . .
Many researchers are attempting to create such a test for CFS. One
line of research that originally appeared to be promising involved
finding a retrovirus, like the virus that supposedly causes AIDS, in
CFS patients. Some researchers had believed that finding such a
retrovirus, and proving it causes CFS, would result in a definitive way
to diagnose this syndrome, as the HIV antibody test has done for AIDS.
But the 'CFS retrovirus' research apparently ran into some roadblocks,
and little progress has been made since the single report describing
the retrovirus was published in early 1991.
. . .
This takes us back to the original questions: Is it possible that a
mistake has been made in formulating the definition of AIDS? Is
Chronic Fatigue Syndrome actually part of the AIDS epidemic?
If this is even a remote possibility, why haven't other books been
written about it? Why isn't every health reporter in the country
writing about it, every investigative reporter investigating?
The answer, I believe, is pretty simple, and it is a problem that has dogged the AIDS epidemic since the beginning: denial."