Saturday, April 23, 2011

Several posts on Caroline T Anderson | Phoenix Rising

I'm told this is a pseudonym for a journalist who really does have ME/CFS.

Thursday, April 21, 2011

Energy Foundation Grant for WPI

Help WPI win enough to start seeing patients

Angel writes: "Go Here Now to Vote for Whittemore Peterson ♥ Millions Thank YOU. "
Tell all your friends, family, second cousins three times removed....

Having Trouble Making New Friends Stick?

Many CFS patients find that they lose their old friends when they become disabled, and it's hard to find new friends when you're sick and mostly housebound.
While I can't tell you how to make healthy friends in your own neighborhood who are willing to run errands and do your chores, I can tell you that if you join any of the numerous CFS support groups online, you'll find plenty of friends willing to talk you through those dark, lonely hours.

"If this was HIV, it would be 1983"

Wednesday, April 20, 2011

America’s 10 Most Popular Prescription Drugs – TIME Healthland

#1 - Vicodin

Type of drug: opioid
Used to treat: pain
Number of prescriptions in 2010: 131.2 million
Number of prescriptions in 2009: 128.2 million

Vicodin is prescribed to treat chronic pain, which affects 20% to 30% of adults and is twice as common in women as in men. The pill is also commonly prescribed to treat pain following dental procedures. Though drug misuse may account for part of the reason that hydrocodone is so popular, fewer than 3% of people prescribed opioids for chronic pain actually develop new addictions.

* * *

Do NOT let your doctor get away with refusing to prescribe pain pills "because you might become addicted" -- most people who "might" can be predicted because they have addictive personalities.  For the rest of us, it's perfectly safe, and can avoid worse problems developing later.

Think Like a Doctor: A Litany of Symptoms -


Tuesday, April 19, 2011

NIH Research Funding Chart

Read the numbers and prepare to scream.  A disabling condition like CFS gets the same funding as hay fever!!!!!

Art 4 XMRV | RedBubble

If you're an artist, send them something to sell to support WPI.  If you're not an artist, buy something!

Sunday, April 17, 2011



Isolating: Sure, some people need more social interaction than others, but we all need some. Too much isolation is not healthy. I know it's time to leave the house when I start feeling gloomy in my solitude, or like I'm getting weird. Weird is subjective, but when going to the supermarket feels like a major excursion, when I start worrying that I may have lost the ability to converse, when I get furious at near-strangers in my online social networks, I know it's time to for face time. I call a friend, do lunch, attend a party...anything to get my social gears cranking again. It needn't be anything deep and meaningful. Just a little something to reconnect me.

Montoya Lecture

This definitely wasn't an 'get acquainted with CFS' talk. There was no
boring scholarly introduction to CFS ("Chronic fatigue syndrome effects
blah, blah, blah….has x number of symptoms….blah, blah…..)…Dr. Montoya was
clearly trying to wake people up.

Calling ME/CFS one of the most 'mis-perceived' illnesses in medicine,
Montoya quickly got to the heart of the matter calling chronic fatigue
syndrome 'an extreme event' in the medical community and castigated them
(gently) a bit for mostly ignoring a disease which 'significantly
compromised the health' of millions of people.

Check out more at

Straight Talk from Dr. Montoya: the Stanford Hospital lecture:
Cort Johnson

Phoenix Rising*  - A non-profit 501(c)(3) charitable organization dedicated
to improving the lives of people with chronic fatigue syndrome (ME/CFS) and
other neuroendocrineimmune disorders

Canadian Conference

Source: MarketWire
Date:   March 15, 2011

The 10th International ME/CFS Clinical & Research
Conference "Translating evidence into practice"

OTTAWA, ONTARIO--(Marketwire - March 15, 2011) -
The International Association for CFS/ME and The
National ME/FM Action Network (Canada) are pleased
to announce the 10th International ME/CFS clinical
& research conference in Ottawa, Canada.

The professional conference themes focus on fatigue,
pain, sleep, pediatrics, cognition and brain
function in ME/CFS, Fibromyalgia and Related
illnesses and will be addressed in scientific
sessions on assessment and treatment and original
research in the fields of immunology, virology and
neuroendocrinology.There will also be workshops for
clinicians and researchers.

Conference details:

DATE:     September 22nd to 25th, 2011
CITY:     Ottawa, ON Canada
LOCATION: The Delta City Centre Hotel (613) 237-3600
          (formerly Crowne Plaza hotel) 101 Lyon Street
           North, Ottawa, ON K1R 5T9 CANADA

To view the Conference details and backgrounder, please
download the following PDF:
Registration will open in May, 2011. A call for abstracts
is now posted on the homepages of

ONE-DAY CONFERENCE FOR PATIENTS & advocates interested in
these illnesses IS SCHEDULED FOR SEPTEMBER 22ND, 2011.


For more information, please contact

National ME/FM Action Network
Lydia Neilson

(c) 2011 MarketWire

Mikovits: Fighting for a Cause

Published online 14 March 2011 | Nature 471, 282-285 (2011) |
News Feature
Virology: Fighting for a cause

When Judy Mikovits found links between chronic fatigue syndrome and a virus, the world took notice. Now, she's caught between the patients who believe her work and the researchers who don't.

On a sunny January afternoon in Santa Rosa, California, a small crowd
waits patiently for Judy Mikovits to arrive. She is scheduled to
deliver a talk on a mysterious virus called XMRV, which she believes
underlies chronic fatigue syndrome. Although she's two hours late —
held up by fog at San Francisco International Airport — not a single
person has left. And when she arrives, they burst into applause.

To a rapt audience, she gives a chaotic and wide-ranging talk that
explores viral sequences, cell-culture techniques and some of the
criticisms that have been thrown at her since she published evidence1
of a link between XMRV and chronic fatigue in 2009. Afterwards,
Mikovits is swarmed by attendees. A middle-aged woman who spent most
of the talk in a motorized scooter stands up to snap pictures of her
with a digital camera. Ann Cavanagh, who has chronic fatigue and has
tested positive for XMRV, says that she came in part for information
and in part to show her support for Mikovits. "I just wish there were
a hundred of her," Cavanagh says.

The event was "surreal", says Mikovits, a viral immunologist at the
Whittemore Peterson Institute for Neuro-Immune Disease (WPI) in Reno,
Nevada. She is discomfited by the attention from patients, which at
times borders on adulation. But her reception among scientists has
been markedly cooler. Numerous follow-up studies have found no link
between the virus and the disease; no group has published a
replication of her findings; and some scientists argue that XMRV is an
artefact of laboratory contamination. Now, even some of Mikovits's
former collaborators are having second thoughts.

Mikovits has dug in, however, attacking her critics' methods and
motives. She says that their distrust of her science stems from doubts
about the legitimacy of chronic fatigue syndrome itself. Chronic
fatigue, also known as myalgic encephalomyelitis, affects an estimated
17 million people worldwide, but it is extremely difficult to
diagnose. Many with the disorder are told that their symptoms — which
include exhaustion, joint and muscle pain, cognitive issues, and heart
and respiratory problems — are psychosomatic. "I had no idea there was
that much bias against this disease," Mikovits says.

The stakes are high and many are taking the risks seriously. Several
countries have barred people with chronic fatigue from donating blood
in case the virus spreads (see 'Something in the blood'). And the US
government has launched a US$1.3-million study to investigate the
link. Patients are already being tested for XMRV, and some are taking
antiviral drugs on the assumption that the virus causes chronic
fatigue by attacking their immune defences. Many say that such action
is premature, but Mikovits is steadfast. "We're not changing our
course," she says.

First findings

In October 2007, Mikovits attended a prostate-cancer meeting near Lake
Tahoe, Nevada, where she met Robert Silverman, a virologist at the
Cleveland Clinic in Ohio. Silverman co-discovered XMRV, which stands
for xenotropic murine leukaemia virus-related virus2. While examining
human prostate tumours, he and his collaborators found genetic
sequences that resemble retroviruses found in the mouse genome. Like
all retroviruses, XMRV rewrites its RNA genome into DNA on infection,
then slips the DNA into the genomes of host cells. Ancient remnants of
such viruses litter animal genomes. But the only active retroviruses
conclusively linked to human disease are HTLV-1, which causes
leukaemia, and HIV.

At the meeting, Silverman was presenting research linking XMRV to
deficiencies in a virus-defence pathway. Mikovits recalled that the
same pathway was weakened in some patients with chronic fatigue. She
wondered whether the prostate-tumour virus could also be behind
chronic fatigue. After the meeting, Silverman sent Mikovits reagents
to test for XMRV.

The idea excited Mikovits, but she had other priorities. After stints
in industry and at the US National Cancer Institute (NCI) in Maryland,
she had recently joined the WPI to lead its research programme. The
WPI was founded in 2006 by physician Daniel Peterson, an expert on
chronic fatigue, and by Annette Whittemore, the wife of a
well-connected Nevada businessman, whose daughter Andrea has had
chronic fatigue for more than 20 years. The Whittemores spent $5
million establishing the WPI, and several million more to support
Mikovits's research, which has attracted few other grants.

At the WPI, Mikovits established a sample collection from Peterson's
patients and began screening it for signs of an infection. A litany of
pathogens has been linked to chronic fatigue over the years, including
Epstein-Barr virus, Borna disease virus, human herpes virus 6 and
HTLV-2. None panned out. Still, the disorder bears some hallmarks of
an infection. Many patients report acute illness before chronic
symptoms appear, and their bodies often show signs of an immune system
at war. The disease can also crop up in apparent outbreaks, including
one characterized by Peterson near Lake Tahoe in the 1980s.

Just before Christmas 2008, Mikovits turned her attention to
Silverman's reagents. She and her postdoc, Vincent Lombardi, known as
Vinny, asked a graduate student to test for XMRV DNA in white blood
cells from some of the most seriously ill people being studied at the

The first try turned up just two positives out of 20. But by tweaking
the conditions of the test, Mikovits says her team found XMRV in all
20. "Vinny and I looked at each other and said, 'Well, that's
interesting'," she says. They spent the next few weeks convincing
themselves that they were onto something, and soon conscripted
Silverman and Mikovits's former mentor at the NCI, Frank Ruscetti, to
help prove that XMRV infection was behind chronic fatigue.

"We really retooled our entire programme and did nothing but focus on
that," she says. They kept the effort under wraps, dubbing it 'Project
X'. Even Peterson and the Whittemores weren't clued in. Mikovits says
that the secrecy was necessary because her team also found XMRV in the
blood of some healthy people, raising concerns about blood products.
She hoped to build an airtight case because she worried that sceptical
public-health officials would undermine her work.

In May 2009, the team submitted a paper to Science reporting the
identification of XMRV genetic material in two-thirds of the 101
patients with chronic fatigue they had tested and in 3.7% of 218
healthy people. They also included data suggesting that infected white
blood cells could pass the virus on to uninfected cells.

Reviewers wanted more evidence: a clear electron micrograph of
virus-infected cells, proof that patients mounted an immune response
to the virus, an evolutionary tree showing XMRV's relationship to
other viruses and the locations where viral DNA was integrating into
patient genomes. Mikovits's team went to work. "None of us took any
time off, not even a weekend," she says. They resubmitted the paper in
early July with everything the reviewers had asked for, except the DNA
integration sites, which many scientists consider a gold standard in
proving a retroviral infection.

Later that month, NCI officials who had learned about the work invited
Mikovits to give a talk at a closed-door meeting with other XMRV
researchers and government scientists. "When I finished speaking you
could've heard a pin drop," she says. Mikovits says she thinks at
least one of her manuscript's reviewers was at the meeting, because
soon after, she got a call from a Science editor. Their paper had been

Jonathan Stoye, a retrovirologist at the MRC National Institute for
Medical Research in London, wrote a commentary about the paper for
Science3. He had never heard of Mikovits, but Frank Ruscetti's name on
the paper gave him confidence, he says, and "if it were true, it was
clearly very important". Stoye's co-author John Coffin, a
retrovirologist at Tufts University in Boston, Massachusetts, says he
was satisfied with the data and thought it was time to "let the field
and public chew on them".

The BBC, US National Public Radio, The New York Times, The Wall Street
Journal and dozens of other news outlets covered the research.
"Prostate cancer pathogen may be behind the disease once dubbed
'yuppie flu'," Nature announced on its news website the day the paper
came out. Phoenix Rising, a forum for patients with chronic fatigue
that has become a hub for all things XMRV, called the work a "game
changer", and patients flocked to learn more about a virus that they
hoped would explain their condition. But others, including Britain's
leading chronic fatigue patient group, urged caution until more
research buttressed the link.

The first negative findings started to arrive in January 2010 —
failing to find XMRV in 186 people with chronic fatigue from the
United Kingdom4. A month later, a team including Stoye published a
paper5 showing no evidence of XMRV in more than 500 blood samples from
patients with chronic fatigue and healthy people. One day later, the
British Medical Journal accepted a paper reporting more negative
results in Dutch patients6. Studies began piling up so fast that
Coffin made a scorecard to show at talks. "I've lost count now," he

Mikovits says that the discrepancies can be explained by differences
in the geographical distribution of XMRV or in the methods used.

The most common way to detect XMRV is PCR, or polymerase chain
reaction, which amplifies viral DNA sequences to a level at which they
can be identified. Mikovits and her team used this method to detect
XMRV in some of their patients, but she contends that the most
sensitive way to detect the virus is to culture patients' blood cells
with a cell line in which the virus replicates more quickly. This
should create more copies of the virus, making it easier to detect
with PCR and other techniques. She says that none of the negative
studies applied this method exactly, a fact that annoys her. "Nobody's
tried to rep-li-cate it," she says, sounding out each syllable for

In summer 2010, some evidence emerged in Mikovits's corner. Harvey
Alter, a hepatitis expert at the NIH's Clinical Center, and his team
identified viruses similar to XMRV in 32 of 37 people with chronic
fatigue and in 3 of 44 healthy people. They were preparing to publish
their results in the Proceedings of the National Academy of Sciences.
But scientists at the Centers for Disease Control and Prevention (CDC)
in Atlanta, Georgia, were about to publish a negative report. The
authors delayed publication of both papers7,8 for several weeks to
assess discrepancies. The move agitated Mikovits as well as the
chronic-fatigue community, who suspected that important data were
being suppressed.

When Alter's work came out in late August7, Mikovits was ecstatic, and
the WPI released a YouTube video of her touting it. For other
researchers, however, the new paper had shortcomings. The viral
sequences from Alter's paper differed from XMRV, says Greg Towers, a
retrovirologist at University College London. "He doesn't get
variation, he gets a totally different virus." Towers says that mouse
DNA, which is chock-full of virus sequences like those Alter's team
found, probably contaminated their samples, which were collected in
the 1990s. But Alter says that his team found no contamination from
mouse DNA and recovered the same viral sequences from the same
patients sampled a decade later.

Contamination became a dirty word for Mikovits. Just before Christmas
2010, Retrovirology published four papers9,10,11,12 that highlighted
laboratory contamination as a possible explanation for her findings.
One showed, for example, that mouse DNA contaminates an enzyme from a
commercial kit commonly used for PCR. Coffin, an author on two of the
Retrovirology papers, urges caution against over-extrapolating. These
papers do not say that contamination explains Mikovits's results, he
says, just that extreme care is required to avoid it.

Towers and his colleague Paul Kellam, a virologist at the Wellcome
Trust Sanger Institute near Cambridge, UK, are less charitable,
however. Their study12 showed that the XMRV sequences that Mikovits
and Silverman had extracted from patients lacked the diversity
expected of a retrovirus that accumulates mutations as it passes
between patients. "This doesn't look like an onwardly transmittable
infectious virus," says Kellam. A press release for the paper issued
by the Sanger Institute put it more bluntly: "Chronic fatigue syndrome
is not caused by XMRV."

Mikovits is riled when the topic turns to Towers's paper over dinner
one night in Reno — "Christmas garbage", she calls it. Contamination
cannot explain why her team can reproduce its results both in her lab
in Reno and at Ruscetti's at the NCI, she says. Her team checks for
contamination in reagents and in the cells it grows the patients'
samples with. She says that her team has also collected viral
sequences that will address Towers's and Kellam's criticism but that
it hasn't yet been able to publish them. Meanwhile, an unpublished
study of patients in Britain with chronic fatigue bears out the link
to XMRV, she says. "I haven't for one second seen a piece of data that
convinced me they're not infected."

Jay Levy, a virologist at the Univer­sity of California, San
Francisco, has a window in his closet-sized office that looks out into
the laboratory where, in the 1980s, he became one of the first
scientists to isolate HIV. After his discovery was scooped by other
researchers, Levy turned his attention to chronic fatigue and started
a long but fruitless search for an infectious cause.

Now, Levy is putting the finishing touches on what could be the most
thorough response yet to Mikovits's Science paper, adopting the same
cell-culture techniques to detect the virus and using samples from the
same patients. He's done this with the help of Daniel Peterson, who
left the WPI in 2010 for what Peterson says are "personal reasons".
Peterson has questioned the institute's singular pursuit of XMRV, a
research direction that was pursued without his consultation.

Mikovits says that she kept the XMRV work secret from Peterson over
fears he would tell his patients, and left his name off the original
Science manuscript until a reviewer questioned the omission. When
asked whether that episode contributed to his departure, he says, "I
was surprised at the secrecy and lack of collaboration." As for his
motivation to team up with Levy: "I'm just trying to get to the truth.
It's my only motive, because this is such a deserving group of
patients who need to know what's going on."

Others, too, are rallying for a definitive answer. Ian Lipkin, a
microbial epidemiologist at Columbia University in New York, has a
reputation for getting to the bottom of mysterious disease–pathogen
links. His team debunked the association between Borna disease virus
and chronic fatigue, for example. Now he is spearheading the
$1.3-million effort funded by the US government. He is leaving the
testing to three labs: Mikovits's at the WPI, Alter's at the NIH and
the CDC. Each will receive coded samples of white blood cells and
plasma from 150 patients with chronic fatigue and from 150 healthy
controls. The labs will test for XMRV using their method of choice.
Lipkin will crunch the data and unblind the samples.

But even if a study confirms the link to chronic fatigue, it won't be
able to determine whether the virus is the cause. XMRV could, for
example, be an opportunistic infection affecting those whose immune
systems are already dampened by chronic fatigue. Even Mikovits can
only hypothesize as to how it might cause disease.

The virus might not even exist as a natural infection. At a retrovirus
conference this month in Boston, Massachusetts, Coffin and his
colleague Vinay Pathak at the NCI in Frederick, Maryland, presented
data showing that XMRV emerged in the 1990s, during the development of
a prostate-tumour cell line called 22Rv1. Developing the line involved
implanting a prostate-tumour sample into mice, retrieving cells that
might divide indefinitely and repeating the process. But looking back
at DNA samples taken throughout the cell-line's development showed
that human cells became infected only after passing through several
different mice. Importantly, XMRV's sequence seems to have come from
two different mouse strains. "They just sort of snapped together like
two puzzle pieces," says Coffin, an event extremely unlikely to have
happened twice.

XMRV sequences retrieved from patients with prostate cancer and
chronic fatigue — including some who have had chronic fatigue since
the mid-1980s — are nearly identical to the virus from 22Rv1 cells.
The implication, says Coffin, is that this virus, born in a
laboratory, has probably been infecting samples for more than a
decade, but not people. "Although people on the blogs aren't going to
believe me, I'm afraid this is by far the most reasonable explanation
for how XMRV came to be," says Coffin, who hoped that the association
with chronic fatigue would pan out and still thinks some pathogen
other than XMRV could explain the disease.

Silverman, who no longer works with Mikovits, says that he wasn't
using 22Rv1 cells when XMRV was discovered. Nonetheless, the work has
rattled his confidence in XMRV's link to both prostate cancer and
chronic fatigue.

Mikovits, however, is undeterred. The WPI owns a company that charges
patients up to $549 to be tested for XMRV, and Mikovits believes that
patients who test positive should consult their doctors about getting
antiretroviral drugs normally prescribed to those with HIV. Levy and
others worry that she is overreaching. "That's scary for me. These
antiretroviral drugs are not just like taking an aspirin," he says.
Mikovits argues that they might be some patients' only hope. "The
people who we know they're infected should have a right to get
therapy," she says, "They have nothing. They have no other choice."

Context and debate

Back in her Reno laboratory two days after the talk in Santa Rosa,
Mikovits examines a stack of small plastic flasks under a microscope.
Some contain patient cells that she hopes will turn into cell lines
and churn out XMRV. "On Wednesdays I get to take care of my cells, and
that's where I'm the happiest," she says.

She has just come off the phone from a sobbing patient infected with
XMRV whose symptoms had worsened. "They call me every single day,"
Mikovits says. "I don't do science any more. I spend so much time
trying to understand the patients, to understand this disease. People
have moved to Reno to be here," she says. They've left gifts: stuffed
animals, and stacks of bumper stickers that say "Today's Discoveries,
Tomorrow's Cures" and, more boldly, "It's the virus XMRV".

Mikovits clearly shares in the frustration of those with chronic
fatigue who have been marginalized over the years and told that their
disease is not real. She says that this disbelief in the disorder
drives the criticism of her work. Kellam and the others say that this
isn't true. They don't deny the existence of the syndrome or even the
possibility of an infectious origin. "What we're trying to understand
is the aetiology," Kellam says. "It's a scientific debate."

Mikovits says that she's analysed all the papers critical of her work
and found flaws in each of them. Nevertheless, she's quick to endorse
findings that support her work. She claims that Coffin and Pathak's
study, for example, "says nothing about human infection". Yet new work
presented at a different meeting that found XMRV using next-generation
DNA sequencing offers "no doubt it's not contamination — that the
whole story's real", she says.

Despite the growing choir of sceptics, Mikovits says that she has
simply seen too many data implicating XMRV and other related viruses
in chronic fatigue to change her mind. For her supporters, that
steadfastness offers legitimacy and hope. "The scientists are moving
forward," she announced at her talk in Santa Rosa, "and I think the
politics will go away shortly."
The crowd responded with vigorous

Ewen Callaway writes for Nature from London.

1.Lombardi, V. C. et al. Science 326, 585-589 (2009).
2.Urisman, A. et al. PLoS Pathog. 2, e25 (2006).
3.Coffin, J. M. & Stoye, J. P. Science 326, 530-531 (2009).
4.Erlwein, O. et al. PLoS ONE 5, e8519 (2010).
5.Groom, H. C. et al. Retrovirology 7, 10 (2010).
6.Van Kuppeveld, F. J. et al. Br. Med. J. 340, c1018 (2010).
7.Lo, S. C. et al. Proc. Natl Acad. Sci. USA 107, 15874-15879 (2010).
8.Switzer, W. M. et al. Retrovirology 7, 57 (2010).
9.Robinson, M. J. et al. Retrovirology 7, 108 (2010).
10.Oakes, B. et al. Retrovirology 7, 109 (2010).
11.Sato, E. , Furuta, R. A. & Miyazawa, T. Retrovirology 7, 110 (2010).
12.Hué, S. et al. Retrovirology 7, 111 (2010).

More on proteins in CSF in CFS patients

Note: This article expands on the spinal fluid abnormality stories
saying, "Because some of the proteins found in the spinal fluid of
chronic fatigue syndrome patients also are implicated in Alzheimer's
and Parkinson's diseases, the results support the idea that chronic
fatigue syndrome has an underlying neurological cause." / Business

PNNL scientist leads research into chronic fatigue syndrome treatment

From Herald news services

RICHLAND -- High-tech protein analysis done in Richland could lead to
improvements in diagnosis and treatment of the little-understood
chronic fatigue syndrome.

The analysis done at the Environmental Molecular Sciences Laboratory
on the campus of Pacific Northwest National Laboratory identified a
subset of proteins in the spinal fluid of patients with chronic
fatigue syndrome that are not present in healthy patients.

The discovery also calls into question the belief of some scientists
that chronic fatigue syndrome, with its debilitating fatigue, is an
umbrella category that includes other diseases, including Lyme
disease, that lingers after treatment.

Research was conducted by a team at the University of Medicine and
Dentistry of New Jersey's medical school and a team led by Richard
Smith at PNNL.

It relied on special protein separation techniques and high-powered
mass spectrometry equipment at the Department of Energy's
Environmental Molecular Sciences Laboratory.

Investigators looked at the spinal fluid of 43 people who had been
diagnosed with chronic fatigue syndrome, 25 patients who had failed to
completely recover from Lyme disease and 11 healthy people.

"Spinal fluid is like a liquid window to the brain," said Dr. Steven
Schutzer of the New Jersey Medical School, in a statement.

Researchers found some of the same proteins in chronic fatigue
syndrome and neurologic post treatment Lyme disease patients. But
patients also had proteins unique to each condition, despite their
similar symptoms.

Because some of the proteins found in the spinal fluid of chronic fatigue syndrome patients also are implicated in Alzheimer's and Parkinson's diseases, the results support the idea that chronic fatigue syndrome has an underlying neurological cause.

"These exciting findings are the tip of our research iceberg," Smith
said in a statement. Newer techniques are being developed to allow
researchers to learn more about chronic fatigue syndrome, lingering
Lyme disease and other neurological diseases, he said.

Read more:

Doctors Need to Know

We wanted to make sure you are aware of the Doctors Need to Know patient
advocacy project. Patients told us in the January survey they wanted
this project included in actions this year. Please go here to see the
simple instructions:

We are working to take charge and create a new perception of our
illness. Research does patients no good if physicians don't know about it. This project focuses on the ignorant physicians even more than those
already treating ME/CFS patients. Our hope is the next person who
describes the symptoms to their GP will not be given an inaccurate
diagnosis or ineffective or harmful treatment.
We are still receiving donations and gaining more members, now over
2,000. You can see that activity here:
We have the funds for the press release and the Public Service
Announcement video contest. Please go here to see the announcement:
Please help us spread the word about Doctors Need to Know.
Thank you.
Tina Tidmore
MCWPA Coordinator

Trouble with CFS starts with defining it

Troubles of Chronic Fatigue Syndrome Start With Defining It
Published: March 4, 2011

When reports emerged 30 years ago that young gay men were suffering
from rare forms of pneumonia and cancer, public health investigators
scrambled to understand what appeared to be a deadly immune disorder:
What were the symptoms? Who was most susceptible? What kinds of
infections were markers of the disease?

They were seeking the epidemiologist's most essential tool — an
accurate case definition, a set of criteria that simultaneously
include people with the illness and exclude those without it. With
AIDS, investigators soon recognized that injection-drug users,
hemophiliacs and other demographic groups were also at risk, and the
case definition evolved over time to incorporate lab evidence of
immune dysfunction and other refinements based on scientific advances.

"If you recognize something is happening, you need a case definition
so you can count it," said Andrew Moss, an emeritus professor of
epidemiology at the University of California, San Francisco, and an
early AIDS investigator. "You need to know whether the numbers are
going up or down, or whether treatment and prevention work. And if you
have a bad case definition, then it's very difficult to figure out
what's going on."

Once a disease can be diagnosed reliably through lab tests, creating
an accurate case definition becomes easier. But when an ailment has no
known cause and its symptoms are subjective — as with chronic fatigue
syndrome, fibromyalgia and other diseases whose characteristics and
even existence have been contested — competing case definitions are
almost inevitable.

Now a new study of chronic fatigue syndrome has highlighted how
competing case definitions can lead to an epidemiologic "Rashomon" —
what you see depends on who's doing the looking
— and has stoked a
fierce debate among researchers and patient advocates on both sides of
the Atlantic.

The study, published last month in The Lancet, reported that exercise
and cognitive-behavioral therapy could help people with the illness.
Advocates and some leading experts dismissed the findings and said the
authors' case definition was largely to blame.

The British scientists who conducted the research identified study
participants based largely on a single symptom: disabling and
unexplained fatigue lasting at least six months. But many researchers,
especially in the United States, say that definition takes in many
patients whose real illness is not the syndrome but depression — which
can often be eased with psychotherapy and exercise.

The Lancet authors "have written their case definition to include both
people with major depressive disorders and patients who clearly have
received an insult to their immune systems and are depressed because
they can no longer do things that they used to," said Dr. Andreas
Kogelnik, an infectious disease specialist in Mountain View, Calif.,
who treats many people with chronic fatigue syndrome.

In studying the condition, he and other researchers exclude patients
whose only symptom is fatigue, however disabling, and instead rely on
a case definition that includes other cognitive, neurological and
physiological symptoms. Those symptoms, they believe, indicate a
complex immune system disorder possibly caused by a virus or another

Since 2009, studies have produced contradictory results over whether
viruses related to mouse leukemia are associated with chronic fatigue
syndrome, which is also called myalgic encephalomyelitis. A recent
study found that people with the illness have distinct proteins in
their spinal fluid
, raising hope that a diagnostic test can someday be

No case definition is perfect; every disease has outliers. But whether
a definition is broadly or narrowly drawn can profoundly affect the
statistics vital for public health planning.

A recent study of workers, for example, found that 2.5 percent to 11
percent suffered from carpal tunnel syndrome, depending on whether the
case definition required reported symptoms, a physical exam, a nerve
test or a combination of the three. Another study found that rates of
acute gastroenteritis doubled when a looser case definition was used.
If researchers filter their perceptions through different lenses —
that is, case definitions that generate study populations varying in
size and characteristics — it is hard to know whether they are
studying the same phenomenon, overlapping ones or completely unrelated
ailments. Determining whether findings from one study can be
extrapolated to other patients becomes difficult at best.

"You have to really define the characteristics, and everybody has to
use the same criteria, because otherwise you're calling something an
apple and someone else is really looking at a peach and calling it an
apple," said Dr. Anita Belman, a neurologist at Stony Brook University
who conducts research on pediatric multiple sclerosis.

No one disputes that many people with chronic fatigue syndrome also
suffer from depression. The question is which came first. Are patients
depressed because a terrible disease has robbed them of their lives,
or is the illness itself a somatic expression of an underlying

To researchers who believe that chronic fatigue syndrome is merely a
psychological condition, that distinction may not seem important. But
it matters deeply to those convinced it is a viral disease, who say
the exercise therapy advised by the Lancet study can cause major
relapses in people with chronic fatigue syndrome — a claim supported
by some patient surveys.

The single-symptom case definition used by the Lancet authors, known
as the Oxford criteria, was developed in Britain in 1991. Like the
team that conducted the current study, the 1991 group included
prominent mental health professionals.

But many scientists and clinicians view a multisymptom case definition
published in 1994 by the Centers for Disease Control and Prevention in
the United States as the international standard.

In addition to six months of unexplained, disabling fatigue, the
C.D.C. definition requires at least four of eight common symptoms:
cognitive problems, sleep disorders, muscle pain, joint pain,
headaches, tender lymph nodes, sore throat and what is called
"postexertional malaise"— a relapse that occurs after even minimal

In 2005, the agency unveiled an "empirical" case definition that
recommended specific screening questionnaires and cutoff scores for
measuring fatigue, physical dysfunction and other symptoms. Critics
challenged these newer guidelines on the same grounds as the Oxford
criteria, arguing that the questionnaires and scoring methods were too

In contrast, a 2003 case definition from Canada is considered the most
restrictive and is preferred by many patients. It elevates
postexertional malaise to a central role in the illness and requires a
range of neurological, cognitive, endocrine or immunological symptoms.
In 2009, researchers from DePaul University in Chicago reported that
38 percent of patients in a study sample suffering from depression
alone were given misdiagnoses of chronic fatigue syndrome using the
C.D.C. screening tools but not the narrower Canadian definition.

The study suggests that the disease centers' "empirical case
definition has broadened the criteria such that some individuals with
a purely psychiatric illness will be inappropriately diagnosed" with
chronic fatigue syndrome, wrote Leonard A. Jason, a professor of
community psychology at DePaul, and his colleagues. The authors also
noted that using the new screening tools, the C.D.C. had greatly
increased its estimate of the prevalence of the illness, to 2.5
percent of the population, or four million Americans.

So the question remains: can therapy and exercise help patients with
chronic fatigue syndrome, as the Lancet study reported?

Yes, apparently — if the illness is identified with a case definition
relying on fatigue alone. But does the evidence from that study prove
that these strategies would help patients identified as having chronic
fatigue syndrome through very different criteria? That is a much
tougher argument to make.

The Puzzle of CFS / Dr. Bell

The Puzzle of Chronic Fatigue

For 20 years, a doctor in upstate New York has been trying to prove
that an outbreak of the strange syndrome in his community was caused
by a virus. Now new evidence is reopening the case.

One snowy afternoon in October 1985, eight children from the tiny
farming community of Lyndonville, N.Y., went sledding together. Within
a few weeks, they all got sick.

David Bell, the local doctor who treated the children, recalls that
their symptoms were similar to the flu: sore throats, fevers, muscle
aches and severe fatigue. After three days, they hadn't recovered.
Then a week. A month. Ninety days.

Six months after their sledding trip, the children still couldn't go
back to the lone school in town. They had trouble getting out of bed.
Light gave them a headache. Four of the eight were so sick that they
were essentially disabled, Dr. Bell recalls. Tests ruled out mono and
other infections. "We had no idea at all what it was," he says.

Over the next two years, the mysterious illness spread throughout this
rural village of 862 people halfway between Buffalo and Rochester. It
eventually affected 214 people within a 30-mile radius, 46 of them

For the next 25 years, Dr. Bell, a Boston University-trained
physician, would collaborate on studies, maintain a vast database of
patients and write books, searching in vain for the cause of the
illness from which some of his patients recovered and many did not.
The illness would eventually be identified as chronic fatigue
syndrome, but scientists still have not found its cause. "I figured I
would never know why the kids got sick," Dr. Bell says.

Chronic fatigue syndrome is an incredibly challenging disorder. There
is no diagnostic test, no blood test and no scan, so diagnosis is made
by excluding other conditions. The common symptoms, such as severe
fatigue, muscle pain and weakness, rely on a patient's perception and
are hard to measure. In addition, many of the symptoms are also
present in other conditions.

Some people diagnose themselves, mistakenly thinking they have chronic
fatigue syndrome when in fact they have something else. Many others
may have a wrong diagnosis, or none at all: The Centers for Disease
Control and Prevention believes that of the estimated one million to
four million Americans who have it, less than 20% have actually been

Now, patients with chronic fatigue syndrome are focusing on new
research—and Dr. Bell hopes his lifelong quest to find the cause of
the Lyndonville outbreak may eventually come to an end.

In 2009, researchers published a paper in the journal Science
announcing that in 67% of the samples of 101 chronic fatigue syndrome
patients, they had found a retrovirus called XMRV. Dr. Bell, who had
previously suspected a link to retroviruses, wondered if it was the
explanation he'd been looking for.

Lyndonville patients were elated by the discovery. "Holy smokes! Just
when I want to retire this comes along," Dr. Bell, 65, shared with
patients on his website at the time. A retroviral link would not only
prove a concrete cause but also open the possibility of treating it
with anti-retroviral drugs.

Dr. Bell sought out his old patients to test them. Although the
numbers tested were small, the preliminary results made him take
notice: 70% of them came back positive for XMRV-related viruses.

Then came a major setback: Other labs trying to duplicate the results
of the Science paper were unable to find the retrovirus in patients
with the disease. In a high-profile paper published last July,
scientists from the Centers for Disease Control and Prevention failed
to find XMRV in either patients with the disorder or in healthy
controls. The inability of other labs to confirm the results raised
questions about the validity of the retroviral finding.

The debate over XMRV has become intertwined with the larger
disagreement that touches almost every aspect of chronic fatigue
syndrome. Not all researchers agree with the criteria the CDC uses to
define patients with chronic fatigue syndrome, and use a different
definition. Over the years, CFS has been called different names in
other countries, including myalgic encephalomyelitis in the United
Kingdom. Many patients hate the name chronic fatigue syndrome because
they think it trivializes the condition.

Patients often report a sudden, flu-like onset, but one of the
difficulties is that a diagnosis of chronic fatigue syndrome cannot be
made unless symptoms persist for at least six months, making it
challenging to determine the initial trigger. Some studies have
indicated that CFS may be brought on by trauma like a car accident. A
recent study by the CDC found that childhood trauma can be a risk
factor—although the CDC points out that childhood difficulties do not
cause the disorder.

It is still not understood how—or even if—the syndrome spreads. But
since the 1930s, there have been at least 12 reported outbreaks in the
medical literature of chronic fatigue syndrome in communities around
the world
. A 2004 outbreak in Norway occurred after one town's public
drinking water was contaminated with the Giardia lamblia parasite; 58
people diagnosed with what is called post-infectious fatigue syndrome
are being followed there.

The various controversies have led many patients to feel that they
have been maligned—by friends who don't understand why patients look
well but cannot function, by doctors who doubt their symptoms, by
scientists who still don't understand why people get the syndrome.
This is one of the reasons why a possible link between XMRV and
chronic fatigue syndrome was so widely embraced by the patient
community. It offered a clear-cut explanation for how someone might
get sick and a possible path for a way to treat it.

The debate over XMRV has been felt deeply in Lyndonville, with its
picturesque countryside, red barns, bales of hay, and Amish farmers
driving horses and buggies. The community has become a laboratory for
research on chronic fatigue syndrome. Scientists continue to study the
village because the patients who got sick in the outbreak lived in the
same geographic area, fell ill after an infection, and were all
treated by one doctor.

Dr. Bell, who began working at the University of Rochester after
finishing his medical training, wanted to become a country doctor. One
afternoon in 1978, he was driving through Lyndonville when he saw a
farmhouse with a view of Lake Ontario, and on a whim decided to buy
it. Many of his patients were dairy farmers and factory workers who
weren't able to pay him in cash but would leave food on his doorstep
or fix his broken tractor as payment. He had an office in town but
made house calls on horseback.

When the outbreak began, Dr. Bell wasn't sure what it was and
researched any possible lead, including taking milk samples from the
goat whose milk went into the hot cocoa the children drank after going
sledding. He suspected an infectious cause because the children all
got sick at the same time.

Don Duncanson was one of the children who went sledding that October
day. At the time, Mr. Duncanson was a healthy 14-year-old on the
school wrestling team who says he was used to pain from constant

The experience of getting sick shocked him. His lymph nodes were
painfully swollen. The light gave him a headache. He missed weeks of
school unable to move from the sofa. After he returned to school, he
was often so tired that he fell asleep at his desk. Some teachers
smirked when he told them he didn't feel well. "You're a kid. You
think it might be in your head," he says. "I tried not to talk about

Ginger Burg was also 14 when she first fell ill in 1986. One summer
afternoon, she recalls being a healthy teenager playing basketball and
baseball. The next day, she couldn't get out of bed. Her parents
rushed her to the hospital, where doctors told her she had hepatitis,
strep throat and pneumonia.

When she finally went home, she seemed to get sick constantly. Every
time she stood up for longer than a few minutes, she felt dizzy. A
neurologist who tested her couldn't find anything wrong and suggested
she was a hypochondriac, she says.

Perplexed by the cause of the outbreak—which lasted until the end of
1987—Dr. Bell tried to get health authorities to pay attention to
Lyndonville. Dr. Bell's office sent lymph-node biopsies of 12 of the
sickest children to the CDC, but the biopsies came back normal.

Around the same time, CDC investigators studied a similar outbreak in
Lake Tahoe, Nev. They couldn't find a cause there, either. In 1988, a
CDC-sponsored workshop led researchers to name the condition chronic
fatigue syndrome.

In 1989, Dr. Bell sent blood samples of his Lyndonville patients to an
immunologist named Elaine DeFreitas at the Wistar Institute in
Philadelphia. She found evidence of a retrovirus in the blood of
two-thirds of 30 pediatric and adult patients diagnosed with chronic
fatigue syndrome.

This was a significant breakthrough because a retrovirus—unlike other
viruses—integrates into a person's DNA
, where under certain
circumstances it can suddenly start making a virus again. This might
explain the waxing and waning of people's symptoms over the years and
the severity of their sickness. HIV, the best known retrovirus, is
treated with a combination of anti-retroviral drugs that attack the
virus at different stages of its replication.

Dr. DeFreitas's findings were announced to great fanfare at a
scientific conference in 1990 and made the nightly news shows. Then,
in a devastating blow to this theory, scientists at the CDC could not
replicate her discovery.

"We were all convinced for a while [Dr. DeFreitas] was on to it," says
Thomas M. Folks, who was one of the CDC scientists who couldn't
reproduce her findings. The researchers came to believe that the
retrovirus she found was due to contamination that inadvertently got
into the samples she tested. "These things happen," says Dr. Folks.

Dr. DeFreitas could not be reached for comment. But Dr. Bell, who is
listed as a co-author on the paper, disagrees. He says he still
believes the CDC did not find the virus because scientists there did
not follow Dr. DeFreitas's exact protocol

Dr. Folks, who left the CDC in 2007, says the CDC should have been
able to find the virus following their own protocol. He believes that
researchers and doctors got close to patients and sincerely wanted to
help them. That makes it hard to let go of a finding that appears to
offer hope of a solution, he adds.

When the CDC couldn't duplicate the findings, funding dried up and
interest waned. Dr. DeFreitas eventually discontinued her research.

Over the next 25 years, some in Lyndonville would recover, but others
would not. Many were stigmatized as having made their illness up. "We
were [considered] crazy, delusional, lazy people," recalls Ms. Burg.

During this time, some doctors and scientists advanced theories that,
whatever the cause of the disorder, its duration and intensity could
be influenced by a person's coping style.

Nortin M. Hadler, a rheumatologist at the University of North Carolina
Hospitals, says the fact that there is no diagnostic test for the
syndrome can contribute to the way patients cope. Many patients feel
like they must prove they have a disease to feel validated, he says.
As a result, "they get sicker and sicker."

Despite the CDC's inability to find a retrovirus, Dr. Bell didn't give
up on his theory. He wrote books and maintained a database on the
children who fell ill during the outbreak. In 2001, he published a
follow-up report on 35 of them.

When the new discovery was published in Science in 2009, Dr. Bell went
to work getting the word out, notifying as many patients from the
original outbreak as possible.

At the same time, Maureen Hanson, a molecular biologist at Cornell
University, also saw the Science paper. Dr. Hanson, who has a family
member with chronic fatigue syndrome who had been diagnosed by Dr.
Bell, asked him about working together on a retrovirus study. She
wanted to test for the family of murine leukemia virus-related
viruses, or MLVs, to which XMRV also belongs.

Dr. Bell contacted patients he treated over the years for Dr. Hanson
to test. He identified 10 people who were still severely ill, 10
people who considered themselves recovered, and 20 healthy people to
serve as controls.

One of the first calls went to Don Duncanson. Now 40 years old with
salt-and-pepper hair, Mr. Duncanson works maintenance at a nearby
school and coaches wrestling. Mr. Duncanson says he still feels some
of the symptoms. Bright outdoor light hurts his eyes, and there are
still days he has to force himself to get out of bed. "It's normal to
me now,'' he says.

In the new study, Mr. Duncanson was classified as a recovered patient,
based on his symptoms. He tested positive for MLV-like virus.

Dr. Bell also contacted Ginger Burg. Now 38, she is still severely
affected by chronic fatigue syndrome. She spends hours every day lying
down and has a constant headache. She can't stand for long before she
feels dizzy. Ms. Burg also tested positive.

At a meeting in December, an FDA advisory committee on blood issues
invited Dr. Hanson to present the Lyndonville study. The committee was
trying to determine if patients with chronic fatigue syndrome should
be banned from donating blood.

In her presentation, Dr. Hanson said that seven of the 10 most severe
Lyndonville patients, seven of the 10 recovered patients, and four of
the 20 people in the control group tested positive for MLV-like virus.

The majority of committee members voted to recommend that people with
the disease be banned from donating blood, even though the science
remained uncertain. The FDA has not made a final decision, but the
American Red Cross, the largest supplier of blood in the U.S., no
longer accepts blood from people with the disorder.

Dr. Hanson's study has not been published yet. She says she has not
finished all the testing. A few days after the committee decision,
some papers were published identifying several sources of possible
mouse DNA contamination in XMRV studies. Dr. Hanson says she tested
her samples for mouse contamination and did not find any.

In addition to Dr. Hanson's study, there are large federally-led
studies under way. One working group is studying whether XMRV or
related viruses are affecting the blood supply. A different study, run
by the National Institute of Allergy and Infectious Diseases, involves
collecting and testing blood samples from chronic fatigue syndrome
patients. These studies on the link between the family of retroviruses
and the disorder are likely to carry significant weight in the
scientific community.

In his office in Lyndonville, Dr. Bell keeps a picture of the virus
that Dr. DeFreitas found growing in one of the cells of spinal fluid
taken from a child who went sledding in 1985. The picture reminds him
of what happened in the past, when conflicting studies caused
scientists to lose interest in the retrovirus. "My greatest fear,''
Dr. Bell says, "is that people will throw up their hands and say they
are not going to pursue it.''

Write to Amy Dockser Marcus at

An Illness that's Hard to Live With by Lenny Jason

There's a video on the webpage featuring Dr. Bell as well. Talkin'
bout some outbreaks, yeah...


An Illness That's Hard To Live With—Or Define

In 1990, after a bout with mononucleosis, I contracted chronic fatigue
syndrome. For month after month, I felt as if I had the worst case of
the flu, and I had little stamina to do even the most basic life
activities. I had to leave my work as a psychology professor for a
year and a half.

I was lucky to have a strong support system and an understanding work
setting—something many other patients don't have—but I discovered just
how mysterious and frustrating the illness is. I also realized how
easy it is for people to confuse the experience of everyday tiredness
with the incapacitating illness known as CFS.

Fatigue-related illnesses have periodically appeared over the past 150
years. Some have mistakenly compared CFS to what was called
neurasthenia in the late 1800s—a condition that was thought to be
caused by reading newspapers and, in the case of women, by education.
But by the early 1900s, many physicians had concluded that
neurasthenia was probably due to psychiatric conditions, and it was
eventually discredited.

Clustered outbreaks of another fatiguing illness attracted attention
in 1934 at the Los Angeles County Hospital, and then at a British
hospital in 1955. Both outbreaks involved the hospitals' medical
staffs. Some physicians believed both outbreaks might have been a
version of polio. The exact cause still remains unknown.

In the late 1950s, Dr. Melvin Ramsay in the U.K. began using the term
myalgic encephalomyelitis to describe an illness marked by muscle
fatiguability after minimal exertion and symptoms involving the
central nervous system, such as impaired memory and concentration.
Patients often experience a sudden onset, and proponents believed
there was a medical cause.

In the 1980s, in the Lake Tahoe region of Nevada, an epidemic of a
debilitating disease occurred. Infectious disease physicians at the
Centers for Disease Control later labeled the disorder chronic fatigue
syndrome. Patients thought the name belittled the seriousness of the
condition and argued that it placed too much emphasis on fatigue when
the illness is also typified by severe symptoms such as memory loss.
Some used the analogy that if bronchitis or emphysema were referred to
as "chronic cough syndrome," those illnesses would be trivialized too.

Because of my experience with chronic fatigue syndrome, I decided to
conduct my own research. In a 1999 study, my research team looked at
the effect of the condition's name on a group of medical students and
residents. We found that a more technical name is taken more
We gave case studies of patients to the trainees, described
the disease as chronic fatigue syndrome, Florence Nightingale disease
or myalgic encephalopathy to different groups, and then asked the
trainees about prognosis, illness cause and treatment. Those who were
told the condition was called myalgic encephalopathy were much more
likely to give the patient a poor prognosis and to attribute the
illness to a medical cause. Many activist groups have now begun using
other names for both their organizations and the illness, including
myalgic encephalomyelitis and neuroendocrine immune disorder.

Another challenge has been defining the disease. In 1994, the research
community began using what is called the Fukuda criteria to determine
who is afflicted. But the criteria were too vague and opened the
possibility that someone without the two core symptoms (extreme
exhaustion following physical or mental activity lasting more than 24
hours, and persistent or recurring impairment in short-term memory or
concentration) could still be defined as having chronic fatigue

In 2005, the CDC revised the Fukuda criteria in an attempt to identify
patients with more precision. My research team believes the new
criteria are still too vague and could potentially include people with
primary depression. This ambiguity over definitions has made it
difficult for researchers to pinpoint a biological cause. When
investigators compare very different samples, it is difficult, if not
impossible, to replicate findings from one lab to another. And when
consistent biological findings do not emerge, investigators might
inappropriately conclude that CFS is only a psychiatric problem.

—Mr. Jason is a professor of psychology and director of the Center for
Community Research at DePaul University.

10 Letters Campaign for Awareness Day (May 12)

Post Far and Wide!

On the cusp of the nineteen year anniversary of May 12th  Awareness Day,
RESCIND is proposing the "10 Letters Campaign" for May 12, 2011.

Fellow PWMEs and those who stand with us,

I've been lobbying my congressional representatives about M.E. for two
decades to no avail. Family members have even participated in the early
"Lobby Days" with no results. My latest attempt was in alerting my three
representatives to the "virus ad" in the Washington Post. I received one
response to it:

Dear Mr. Greyson:

     Thank you for sharing your thoughts with me.  I will certainly keep
your views in mind should this issue come before the Senate.


Carl Levin

Why do we keep banging our heads against the wall of congress? Where does
the buck really stop?

I remember an interview with President Obama and how he asks his staff to
bring him ten constituents' letters each evening for him to read.

I had written to the President some time ago regarding a situation other
than M.E. After several months I had forgotten about the letter I had
written to the President but to my surprise I received a small package in
the mail with the return address of 1600 Pennsylvania Avenue. In it was a
wealth of information on how to solve my problem, who to contact, etc. So,
even though it took longer than I expected and I'm sure the President
probably never saw my letter, it's obvious that his staff did read it and
they took the time to follow through with an answer for me.

I am writing a letter this May 12th. Not to my Congressperson or Senators
but to my President. I would like to suggest that everyone who can,
patients, family, doctors, healthy advocates, write a letter to President
Obama as well. Not an email. A real signed letter. Please mail your letter
so that it arrives as close to May 12th as possible. If we can get enough
letters into the White House mail box, maybe one of those ten letters
President Obama reads on the evening of May 12th will be one of ours.

I'm not going to write up a cut and paste letter. They should all be
different, genuine and from your heart. I will let you know what I'm going
to include in my letter and some ideas for you to consider for your letter.

· Of course I will start with my history and the devastation that has been
wrought upon me by M.E.

· Then I'll apprise the President of the malfeasance and corruption going on
at the CDC and parts of the NIH. And I will suggest to him whose
resignations to ask for.

· We need a proper name that reflects the severity of this illness. The
United States needs to recognize M.E. There is a petition with nearly ten
thousand signatures at
stating just that.

· Along with a proper name, we need a proper clinical definition. The
simplest way to do that would be to adopt the Canadian Consensus Criteria.
Several of the authors being from the United Sates.

· We need funding for research into XMRV and related viruses. A proper
replication of Lombardi et al needs to be done to find out once and for all
if MuLVs are the cause of M.E. and if not, we need to move on. I'm not going
to dwell on M.E. (or CFS) in the XMRV portion of my letter. I'm going to
play up the cancer angle because no one's really afraid of a little fatigue
but everyone's afraid of cancer.

· We need more funding into the ciguatera epitope that was discovered by Dr.
Hokama. This neurotoxin biomarker has been found in, I'm told, 100% of M.E.
patients. It has already received government funding and needs more funding
to flesh out the cause and cure, be it a virus or radiation poisoning.

· I'm going to ask that the President not rely on the CAA for information
but to ask for MY thoughts and to look to other organizations such as
RESCIND, Wisconsin CFIDS, The NCF, WPI, PANDORA and even my own physician.

· I'm going to mention the disparity of funding. According to the CDC, there
are 4 million M.E. patients in the U.S. And according to the NIH Estimates
of Funding for Various Research, Condition, and Disease Categories (RCDC),
anywhere from 4-6 million dollars per year has been spent on research. With
some years being ZERO! That's about a buck per patient. Obviously these are
the CDC's trumped up empirical numbers. But higher numbers SHOULD be of more

· I will apprise him of the economic losses due to M.E. and refer him to
Leonard Jason's economic loss study
that concluded the direct and indirect cost of ME and CFS to society was
estimated to be between $18,677,912,000 and $23,972,300,000.

· The Harvey Alter statement. He won the Lasker Prize for isolating
Hepatitis C and is the Chief of Infectious Diseases and Immunogenetics
Section of the Department of (Blood) Transfusion Medicine at the NIH:

"I'm not a CFS Dr, but have learned a lot in last 6 months. Absolutely
convinced when you define this by proper criteria, it's a very serious,
medical disease. Characteristics of a viral disease. If it's NOT XMRV, we
must continue the research to find out what is.''

· The New York Times article and the Nancy Klimas quote:

"But I hope you are not saying that C.F.S. patients are not as ill as H.I.V.
patients. My H.I.V. patients for the most part are hale and hearty thanks to
three decades of intense and excellent research and billions of dollars
invested. Many of my C.F.S. patients, on the other hand, are terribly ill
and unable to work or participate in the care of their families. I split my
clinical time between the two illnesses, and I can tell you if I had to
choose between the two illnesses (in 2009) I would rather have H.I.V."

Dr. Nancy Klimas as quoted from the Q & A New York Times article "Is a Virus
the Cause of Fatigue Syndrome?" - posted online Oct 15, 2009

· And the Dr. Marc Loveless congressional testimony of 1994:

"I have treated more than 2500 AIDS and CFS patients over the past 12 years.
and my CFS patients are MORE sick and MORE disabled, every single day, than
my AIDS patients are, except in the last two weeks of life"

· And finally I will point out Leonard Jason's "Causes of death among
patients with chronic fatigue syndrome" study.

The address to send your letter to is:

President of the United States of America,
Barack Obama
The White House
1600 Pennsylvania Avenue NW
Washington, DC 20500

I am also contacting the people below and suggest you do the same, if able.
It will be pretty much the same letter that I write to the President, just
changing the name. However, the President is the most important letter you

Speaker of the House,
John Boehner
1011 Longworth H.O.B.
Washington, DC  20515

First Lady, Michele Obama
The White House
1600 Pennsylvania Avenue NW
Washington, DC 20500

Vice President of the United States of America,
Joe Biden
The White House
1600 Pennsylvania Avenue NW
Washington, DC 20501

Dr. Jill Biden
The White House
1600 Pennsylvania Avenue NW
Washington, DC 20501

As this is being sent out 2 months ahead of May 12th, this should give
everyone enough time to put their letter(s) together.

This is up on the RESCIND website so you can refer back to it there, if
needed, and for updates on points to be made in our letters.

Other points to make are welcome. If you email them to me I'll put them up
on the RESCIND website. Keep an eye on the website for further information
and updates.

Make it short and sweet. Make it long and loud. Just make it into his hands.

Congress isn't paying attention to us. Will the President?

Jerry Greyson

Tom Hennessy

CFS: protein in spinal fluid

Source: College Media Network
Date:   28 februari 2011
Author: Jennifer Liu

Protein discovery validates chronic fatigue syndrome theory

The University of Medicine and Dentistry of New Jersey
(UMDNJ) collaborated with the Pacific Northwest National
Laboratory (PNNL) to discover around 3,000 proteins in
the spinal fluids of people who suffer from chronic
fatigue syndrome and Lyme disease.

"We discovered that both diseases - chronic fatigue
syndrome and post-treatment neurological Lyme disease
- are central nervous system disorders," said Steven
Schutzer, professor of medicine at UMDNJ. "They have
their own characteristic set of spinal fluid proteins
that lets us distinguish one from the other."

The two diseases were thought to be similar, and many
people did not believe chronic fatigue syndrome had a
real biological or physical basis, Schutzer said.
"[The discovery] provides extremely convincing evidence,
in my view, that these pathologies are real and
distinguishable," said Richard Smith, director of the
Proteomics Research Program at PNNL.

Smith said this recent discovery is especially important
for chronic fatigue syndrome patients. "For a significant
amount of patients, this will be validation that this
isn't all in their imaginations," he said. Smith believes
the breakthrough in this study should be credited, at
least in part, to the newly available technology. "There
are a couple of challenges with spinal fluid that limit
what has been done previously," he said. "One is just the
small size of the samples that are typically available.
[Another is] the ability to make broad measurements that
detect and quantify many different proteins." The
technology used in this study was based on mass
spectrometry and high-resolution liquid chromatography
separations, Smith said. "We used state of the art
instruments called mass spectrometers ... to identify
and quantify the proteins in the certain given sample,"
said Tao Liu, PNNL senior research scientist. Applying
extensive separations reduced the complexity of the spinal
fluid sample and allowed for the identification of more
proteins in the sample, Liu said. "In the end we did
arrive at a total of roughly 2,500 proteins ... which is
really the most comprehensive analysis report to date on
chronic fatigue syndrome ... spinal fluid," he said.

With the publication of this study, the medical world
has a list of proteins to start making hypotheses as to
the cause of chronic fatigue syndrome, Smith said. This
study gives them the building blocks and tools to do it.
"Once you begin to look at the proteins and begin to
understand which proteins are involved... you focus your
attention on what you may actually be able to do in
prevention to alter the outcome," he said.

Almost all drugs are targeted at proteins, Smith said.
Once a person discovers a protein that is involved in
crucial biological pathways, there is potential in at
least targeting that protein in drug development. Smith
said this study shows that the new technology used enables
careful and in-depth study of proteins in spinal fluid
for more diseases than just chronic fatigue syndrome and
Lyme disease. "There appear to be two distinct disease
states when we look at the molecular level, and there
probably are many types of cancers and many different
disease states that we lump together because we don't
understand the differences," he said.

The recent research development points a way to show how
a lot of diseases and disease states will be studied in
the future, Smith said. "I think these kinds of
developments are going to lead to real revolutions in
medical practice," he said. " They will probably reveal
many disease states that we don't know about or
distinguish at the present time and that's vital to
addressing them."

(c) 2011 College Media Network

IACFS/ME Statement on the PACE Trial

IACFS/ME Statement on the PACE Trial:

The Issue of Illness "Reversal"

The much publicized UK-based PACE trial (Lancet, Feb. 18th; reported positive outcomes for patients with CFS/ME who were treated with cognitive-behavior therapy (CBT) or graded exercise therapy (GET) in comparison to a standard medical care condition or an adaptive pacing condition. The adaptive pacing condition was intended to help patients adjust their activity levels according to their available energy (based on envelope theory).  The findings were similar to previous CBT and GET studies in CFS.  This trial was unique in incorporating a pacing condition and recruiting a very large sample. 

We certainly support any effective treatment for CFS/ME, medical or behavioral. Behavioral interventions are helpful for a number of major medical conditions (cardiovascular disease, diabetes).

Illness "Reversal" and Behavioral Intervention

The most fundamental concern we have is focused on the type of causal model that was linked to the CBT and GET conditions in this study.  The model, based on the application of cognitive-behavioral and physical conditioning principles, predicts that properly designed behavioral or exercise interventions will "reverse" the CFS illness.  Not improve symptoms/functioning or provide better management, but "reverse" the illness.  This term implies that the illness can be cured (or something close to it) with behavioral techniques.

If one assumes such a direct correspondence between behavioral treatment and curative outcomes, then the illness is by implication a psychiatric condition.  Once this assumption is made, then research efforts to assemble a biomedical model of CFS are more likely to be delegitimized.  And the public's perception of the illness as simply being tired is again reinforced. Perhaps this is the most unfortunate aspect of the PACE trial:  The omission of any reference to the medical complexity of this illness.

Furthermore, when one compares the study goal of illness "reversal" to the reported outcomes, the support for such reversal is modest at best: 30% of GET and CBT patients achieved normative physical functioning-- but the 30% figure was in comparison to 15% who achieved such normative function in the standard medical care control condition.

Thus a more accurate statement of this finding would be: An additional15% of patients in the CBT and GET conditions achieved normal functioning in comparison to standard medical care. The critical standard of clinical significance is that a therapy results in restoration of normal function.  But their own data do not support reversal outcomes above and beyond standard medical care for the vast majority of their subjects in the CBT and GET conditions.

Question of CFS/ME Diagnosis

In addition, the 15% advantage over standard care for patients in CBT and GET can be further questioned given that at least 1/3 of all patients did not meet the strict international criteria for CFS (Table 1 in study)—the diagnostic protocol most often used in published studies. Strict criteria for CFS are linked to poor prognosis and conversely, subjects who don't meet strict criteria for CFS have better outcomes.  So the PACE trial folded in a significant number of subjects who do not have CFS according to standard criteria.  Again this dilutes the significance of their findings as it makes it more difficult to generalize to the population of people who do have CFS.

To put behavioral approaches in context—they can be quite helpful, but they hardly meet the standard of clinical significance that would elevate them to curative interventions.   If this had been made clear in the study, it would have provoked far less controversy and debate.

Media Mis-reports

Finally, the media message from this study has often been:  "Exercise is good; Rest is bad."  Although the PACE trial authors did not issue such a statement, I think there is some responsibility to explain to the media that this type of recommendation is simplistic and potentially harmful for patients with CFS/ME.  Activity and exercise recommendations must be based on a thorough evaluation and a sensitive individualized approach, not the broad brush that has become the take home message of this study.

Fred Friedberg, PhD



Lydia E.  Neilson, M.S.M. , Founder
Chief Executive Officer
512 - 33 Banner Road
Nepean, ON K2H 8V7 Canada
Tel. 613.829.6667
Fax 613.829.8518


SEPTEMBER 22 - 25, 2011


CBS Video - Transcript

For those who can't watch it for some reason, there's a transcript at: i.e.

CBS Video about CFS/chronic Lyme spinal fluid study

Video about CFS/chronic Lyme spinal fluid study done by the University
of Medicine and Dentistry of New Jersey.


New study on Chronic Fatigue Syndrome

Researchers have found protein indicators that could be a result of
Chronic Fatigue Syndrome, a disease often dismissed by some medical
professionals. Michelle Miller reports on the promising study.

Stanford's new CFS website is now online

Stanford's new CFS website is now online.


Stanford Chronic Fatigue Initiative
An initiative dedicated to studying infection-associated chronic diseases

Mission Statement
To become a center of excellence that improves the health of patients
with chronic diseases in which infection or its immune response plays
a major etiologic role.

To provide leadership, facilitate multidisciplinary collaboration,
make new discoveries, and educate in the field of infection-associated
chronic diseases.

Our primary aim is to study the role that infection and its immune
response plays in the symptoms of patients suffering from chronic

XMRV, like HIV, causes chronic infection


Tina Tidmore

Study Shows XMRV, a
Human Retrovirus
Similar to HIV, Causes
Chronic Infection

Chronic Fatigue Syndrome Patients have
Hope that Research is Finding Answers

CORAL GABLES, FLA., FEB. 19 - On Feb. 16, the
Journal of Virology published a study that shows the
recently-discovered human retrovirus, XMRV, leads to
chronic infection in multiple body organs.

Previous peer-reviewed studies show a link between
XMRV and patients with aggressive prostate cancer
and ME/CFS, also known as myalgic
encephalomyelitis and chronic fatigue syndrome.

The study, from the Department of Pathology and
Laboratory Medicine at the Emory University School
of Medicine, shows Xenotropic Murine Leukemia
Virus-related Virus (XMRV) can be found in the
spleen, lungs, gastrointestinal tract, lymph nodes
and sex organs after being injected into the body.

Additionally, the monkeys in the study produced
antibodies to fight the infection. Chronic infection
and immune system reaction are also common in the
two other infectious human retroviruses: HTLV-1 and

*This brings hope that answers to this
disease are within reach,* said Tina
Tidmore, spokesperson for the ME/CFS
Worldwide Patient Alliance (MCWPA), a
grassroots patient advocacy group.

*For the sake of those who have been
left to suffer and with the goal of protecting
the blood supply, government leaders need
to seize this opportunity and immediately
fund more research into this retrovirus and
the ME/CFS disease process.*

In 2010, an FDA/National Institutes of Health study
showed XMRV-related retroviruses in 6.8% of blood
donors tested, indicating as many as 20 million
Americans could be infected.

ME/CFS is Disabling and Chronic

ME/CFS is a disabling NeuroEndocrineImmune
disease that afflicts more than 1 million Americans
and an estimated l7 million people around the world.

Patients are often confined to wheelchairs or become
bedbound. Common symptoms include profound
exhaustion after performing simple tasks, sudden
plunging blood pressure, cognitive dysfunction,
migraines and daily flu-like symptoms.

The illness strikes men and women, young and old,
and is incurable.

ME/CFS first came to national attention during the
AIDS epidemic in the early 1980s, when a cluster
outbreak of the illness occurred in Incline Village,
Nev. and Lyndonville, New York. A 1991 Wistar
Institute study also showed a link to a retrovirus,
but the government later halted their retroviral

In 2009, the Whittemore Peterson Institute (WPI) at
the University of Nevada, Reno, working with the
National Cancer Institute and Cleveland Clinic,
published a trailblazing study that found an HIV-like
retrovirus, XMRV, in the blood of 67% of ME/CFS
patients and in 3.7% of healthy controls.

Meanwhile, though more than 4,000 peer-reviewed
articles in medical journals have shown system-wide
immune, neurological, endocrine, gastro-intestinal
and cardiac abnormalities in patients, the general
public is largely unaware of the gravity and
prevalence of ME/CFS.

In addition, the US government has chronically
underfunded research. In the National Institutes of
Health budget for 2012, just $6 million is allocated
for ME/CFS research, compared to $135 million for
multiple sclerosis and $114 million for lupus.

Yet twice as many people suffer from ME/CFS than
multiple sclerosis.

For more information, and spokespeople, including
leading researchers, scientists, physicians, patients,
and historians, visit


About MCWPA: Our mission is to create an
effective, cutting-edge advertising campaign
addressing the poor quality of life of individuals with
ME/CFS. By issuing a collective and unified
statement, our community will no longer be silent
and invisible. The MCWPA ad campaign is supported
by P.A.N.D.O.R.A. Inc., Vermont CFIDS Association,
Inc., R.E.S.C.I.N.D., Rocky Mountain CFS/ME and FM
Association and the Wisconsin ME/CFS Association,