Saturday, November 7, 2009

ME/CFS Sufferers Vindicated by Science

  ME/CFS Sufferers Vindicated By Science

Often dismissed as hypochondriacs, ME sufferers have been vindicated by science.
"Since the original Science paper was submitted, we have continued to refine our test for XMRV and have surprisingly found that 95pc ME/CFS samples tested positive for XMRV antibodies in the plasma," said Dr Judy Mikovits who led the research at the Whittemore Peterson Institute (WPI) in the University of Nevada, Reno. The best way forward for ME sufferers here -- at least to diagnose them -- is for doctors to apply Canadian guidelines which set out a number of fixed criteria for diagnosing the illness.
Susan Daly, Irish Independent
Related Links:
XMRV ME/CFS Breakthrough - Information Flow In Europe
ESME - European Society for ME/The One Click Group
Dr David S Bell MD Lecture On ME/CFS And XMRV Virus, NY
Dr David S Bell MD, Lyndonville News
Detection of an Infectious Retrovirus, XMRV, in Blood Cells of Patients with Chronic Fatigue Syndrome
Judy A. Mikovits et al, 10.1126/science.1179052, Science Express
* * *
How many times over the past 22 years have I been told that the severe virus in 1987 couldn't possibly be causing symptoms months/years later?
I  was sure that was the start of my symptoms, but doctors who weren't there repeatedly insisted that I was wrong and they were right, I never had any virus, it was just some psychiatric problem: I didn't like being married (or, later, I didn't like being divorced), I think married women should be housewives (or, later, that divorced women should receive enough alimony that they don't have to work), I'm depressed, anxiety-ridden, lazy, crazy, faking, hypochondriac, anything so that they don't have to accept that objective symptoms like vomiting, diarrhea, fevers, fainting, swollen glands, etc. exist and cannot be explained away by their amateur psychiatry.  (The real psychiatrists could never find anything wrong with me, but the MDs refused to accept that verdict and wanted me to keep going to more and more psychs until one finally said what they wanted to hear!) 
In fact, as the information comes out about the symptoms this virus is supposed to cause, it sounds exactly like the "stomach flu" I had, with fever approaching 105 and resultant delirium for several days.  How could I have made up that history 22 years ago, if the information is only coming to light now?!

Thursday, November 5, 2009

GOP Health Reform Bill Shifts More Costs to You


It's not "reform", it's just more of the same.  The same anti-consumer bills they've been introducing for years, that do nothing to make policies affordable or guarantee coverage for those with pre-existing conditions, just continue to enrich the insurance companies at the expense of the people they supposedly "insure".
If more costs are shifted to the consumer and insurance companies are exempt from consumer protection laws, the only thing that's going to happen is that even more people are going to file bankruptcy as a result of medical bills they can't pay.


Wednesday, November 4, 2009

2 letters about CFS

[Some people might like to reply to take part in this correspondence and,
for example, reply to some of Dr Mayer's statements such as: "Chronic
fatigue syndrome has become a diagnosis that seems to do more harm than
benefit. One study concludes: Poor outcome was predicted by membership of a
self-help group and being in receipt of sickness benefit at the start of
treatment. [6]".  I don't have the time. TK]

Rapid Responses published:

Suggestions for diagnosis of patients presenting with fatigue
Nancy Blake   (29 October 2009)

Re: A comment from a psychiatrist on Nancy Blake`s letter on patients
presenting with fatigue in primary care.
Karl C. Mayer   (1 November 2009)


Suggestions for diagnosis of patients presenting with fatigue 29 October

Nancy Blake,
UKCP Accredited Neurolinguistic Psychotherapist
64 Ella Street, Kingston upon Hull, HU5 3AY

As a very experienced psychotherapist who also is nearly recovered from
Myalgic Encephalomyelitis after 24 years, I would offer the following

Consult  the article Smoke and Mirrors for a
detailed account of the nature of ME, and the political/economic interests
which have lead to the label Chronic Fatigue Syndrome, an umbrella term for
any patient who has suffered fatigue for six months, with a wide range of
possible causes.

Very recent developments, reported on the front page of The Independent a
week or so ago, suggest that there may soon be a diagnostic test for ME,
based on the finding of a specific retrovirus in a large percentage of
people with ME, and antibodies for this virus in an even larger percentage.

In the meantime, it is easy to make a differential diagnosis between
depression and ME. As Professor Douglas Hooper confirms, exercise
intolerance is a definitive symptom of ME. A person who is depressed has a
low mood, and will have to be persuaded to exercise, after which the mood
will lift, due to the production of endorphins as a result of exercise.

People who have ME are typically highly motivated, very active people up to
the point where they become ill. A person who has ME will be eager to
perform some activity, and almost immediately find themselves unable to
continue, at which point they are likely to become quite upset.
Straightforward diagnosis: If your patient feels better after exercise, he may be depressed. If your patient feels worse after exercise, he may have ME.

Fatigue is also a feature of many other physical illnesses, and I think a
doctor would be wise to perform at least a range of routine tests to
eliminate other possibilities - anaemia, MS, chronic low-grade infection,
and so on, before deciding on a psychiatric diagnosis. People don't normally die from a misdiagnosed psychiatric condition, or at least not as often as from a misdiagnosed physical condition.

The post-exertional malaise associated with ME is a result of defective
functioning of muscle metabolism - the aerobic system doesn't work, so even
slight exertion calls the anaerobic metabolism into play. ME is apparently
the result of damage or disfunction in the lower brain stem, hence
disruption of normal body control mechanisms - appetite, sleep patterns,
body temperature, as well as short-term memory problems, and confusion
especially after exertion; also emotional responses may seem exaggerated.
Symptoms vary from hour to hour and day to day, and make the patient sound
like a raving hypochondriac, but the configuration of symptoms is very
recognisable, and a person would have to be very creative to make them up.

Because the level of disability present in ME (especially if a patient is
forced, either by circumstances or by medical misjudgement, to exercise) is
very expensive to pay for, insurers, and our government, have been willing
to pay well psychiatric consultants prepared to testify that this is a
psychiatric, rather than a medical condition. The 'effectiveness' of
therapies such as CBT and GET is researched with funding which should be
used for medical investigation, and based on studies which eliminate
individuals who suffer 'post exertional malaise', but the results are then
used to justify forcing these therapies onto people who have ME and can be
severely damaged both by the assumptions implicit in treatment for 'faulty
thinking' and by physical exercise. Hopefully further research on viral
factors will discredit these approaches sooner rather than later.

Nancy Blake, UKCP Accredited Neurolinguistic Psychotherapist

Competing interests: None declared

Re: A comment from a psychiatrist on Nancy Blake`s letter on patients
presenting with fatigue in primary care. 1 November 2009

Karl C. Mayer,
psychiatrist and neurologist
Bergheimer Straße 56a, 69115 Heidelberg, Germany,

The study you cite shows, that there was a lack in psychiatric diagnotics
by the participating general practices across the Netherlands. Not only that
the medical records listet just one out of 34 patient complaints of sleep
problems, it also listet only 1 in 14 patient complaints of distress or
worry. So in my opinion the study of I. Nijrolder et al [1]shows a clear
need for a better intergration of psychiatric diagnoses in the differential
diagnostics of fatigue complaints. The letter of Nancy Blake [8]is definitly
wrong in her statement : "People don't normally die from a misdiagnosed
psychiatric condition, or at least not as often as from a misdiagnosed
physical condition" . Suicide is still one of the leading causes of death in
psychiatric disorders.  The World Health Report  WHO 2001[3] lists 4
psychiatric disorders among the 10 leading causes of years of life lived
with disability, unipolar depression beeing the number one. On the other
hand psychiatric disorders can be treated with greater success than most
"physical conditions". Psychiatric treatment is not only saving lives, it
makes lives for many people worth living again. Studies have shown that
elevated premorbid stress is a significant risk factor for chronic
fatigue–like illness and that emotional instability assessed 25 years
earlier is associated with chronic fatigue.  [4]

Up to now, there is no prove of a "chronic low-grade infection" as a cause
of chronic fatigue. Nancy Blake states a simple test to differentiate
between the organic chronic fatigue syndrome and depression.  She claims
that exercise intolerance is a definitive symptom of chronic fatigue
syndrome, where as depressed people just have to be persuaded to start
going, and their body will produce the healing  endorphins. Depressed people
have mostly great difficulties in getting startet with excercise, often only
possible when symptoms are getting better. The profit of excercise in both
depression and chronic fatigue usually comes late and probably needs weeks
of regular graded excercise. For both conditions there is some proof of the
effect of excercise. Selfhelp groups for people with CFS often persuade
their members to abstain from excercise, which worsens their condition. A
study says: The severity and chronicity of chronic fatigue syndrome symptoms
do not predict response to psychological treatment aimed at encouraging
graded exercise[6] . An other study shows, that benefits of an educational
intervention designed to encourage graded activity for CFS patients were
maintained at 2 years. [7]

A birth cohort study comes to the conclusion: "Individuals who exercise
frequently are more likely to report a diagnosis of CFS in later life. This
may be due to the direct effects of this behaviour or associated personality
factors. Continuing to be active despite increasing fatigue may be a crucial
step in the development of CFS." [5]   Chronic fatigue syndrome has become a
diagnosis that seems to do more harm than benefit. One study concludes: Poor
outcome was predicted by membership of a self-help group and being in
receipt of sickness benefit at the start of treatment. [6]

1.        Iris Nijrolder et al., Diagnoses during follow-up of patients
presenting with fatigue in primary care CMAJ 2009.DOI:10.1503/cmaj.090647
2.        David Spurgeon  Fewer than half of patients with fatigue get
explanation for their symptoms within a year, study shows BMJ 2009;339:b4393

3.        The World Health Report 2001, World Health Organisation, 2001.
available under
last visited 1 november 2009
4.        Kenji Kato, Patrick F. Sullivan, Birgitta Evengård, et al.,
Premorbid Predictors of Chronic Fatigue Arch Gen Psychiatry.
5.        Samuel B. Harvey, et al., Etiology of Chronic Fatigue Syndrome:
Testing Popular Hypotheses Using a National Birth Cohort Study Psychosomatic
Medicine 70:488-495 (2008)
6.        Richard P. Bentall et al., Predictors of response to treatment for
chronic fatigue syndrome  The British Journal of Psychiatry (2002) 181:
7.        Pauline Powell, et al., Patient education to encourage graded
exercise in chronic fatigue syndrome 2-year follow-up of randomised
controlled trial The British Journal of Psychiatry (2004) 184: 142-146
8.       Nancy Blake Suggestions for diagnosis of patients presenting with
fatigue, Rapid Responses, 29 Oct 2009 [Full text]

Competing interests: None declared

Social Security to revisit CFS Ruling

Representatives from the four of the five federal health agencies, Social Security Administration (SSA), National Institutes of Health (NIH), Food and Drug Administration (FDA), and Centers for Disease Control & Prevention (CDC), gave brief updates. SSA's Mike O'Connor informed the Committee that they will be updating Social Security Ruling 99-2p that recognizes CFS as a potentially disabling condition to reflect medical and research advances made since 1999 when the ruling was published. He also stated that responses to 13 questions about Social Security disability received from the CFSAC were being researched and developed.


Tuesday, November 3, 2009

No longer fakes?

(Highlights from the article)
"Now, drug companies are taking an interest in her work treating eight patients with reverse transcriptase inhibitors, antiretroviral drugs similar to those used today in HIV/AIDS patients."
"The very name itself is a stigma, according to Solomon: "It's so pathetic, like calling Parkinson's 'shaky person syndrome.'"

Chronic Fatigue Patients: No Longer Fakes?
Virus Found in CFS Patients Might Explain Bone-Aching, Unrelenting Symptoms, Help Find Therapies
Oct. 30, 2009—
In 1982, Cynthia Toussaint, a 21-year-old North Hollywood, Calif., ballerina and actress, had a hamstring injury that wouldn't heal. Her leg pain was so severe, it was like "being doused with gasoline and lit on fire."
As her symptoms grew worse, the muscles spasms contracted her right arm and leg so tightly that her limbs "folded up."
Then came the fatigue -- so deep and persistent, Toussaint could barely lift her eyelids on awakening and often would fall out of a chair with sleepiness.
"I was bedridden for a decade and could barely crawl to go to the toilet," she told "They said it was in my head -- that I had stage fright or tendonitis from Mars. People said I was making it up."
Toussaint eventually got relief from what was diagnosed as complex regional pain syndrome, but what she believed was chronic fatigue syndrome persisted.
For years, she fought with doctors, her insurance company and other skeptics, who would not believe her illness was real and painted her as lazy, complaining or just plan "nuts."
But now, scientists have identified a retrovirus that may explain the cause of CFS -- a condition once sarcastically called the "yuppie flu."
Since it was first identified 25 years ago, the syndrome often has been considered a sham, and many patients have been referred to psychiatrists when no clear diagnosis was made.
"Once my HMO even asked me to take a truth serum to see if I was lying," said Toussaint, now 48 and founder of For Grace, an organization that advocates for women in pain. "I was so ashamed."
Patients like Toussaint, who say they feel vindicated that their illness is real, are celebrating the news.
Though many in the health field await more proof, investors and medical technology companies are buzzing about the implications of finding a biomarker and possibly an eventual vaccine and treatment.
Between 1 million and 4 million Americans suffer from CFS, according to the Centers for Disease Control and Prevention. At least one-quarter of those are impaired enough to be unemployed or on disability.
This research, announced this month in the journal Science, was led by Judy Mikovits, a 22-year veteran of the National Cancer Institute and retrovirus expert at Reno, Nev.'s Whittemore Peterson Institute.
She reported 68 out of 101 CFS patients were infected with the contagious xenotropic murine leukemia virus, or XMRV. By contrast, only 3.7 percent of 218 healthy people were infected.
After the paper was published, her work showed that 98 percent of 300 patients tested positive for the retrovirus, which was found in fresh blood and plasma, as well as saliva.
XMRV also has been associated with prostate cancer, and some leukemias and lymphomas. Retroviruses carry their genetic information in RNA rather than DNA, inserting themselves into their hosts' genetic material, where they stay for life.
Although CFS only occurs in about 4 percent of the population, many more asymptomatic Americans could be carriers.
"The study is intriguing," said Dr. Joshua Prager, director of the California Center for Rehabilitation of Pain Syndromes. "There could be a sampling error, but there is hope. If, in fact, there is a marker for the disease, it is something that is truly treatable."
Chronic Fatigue Syndrome Once a Mystery
CFS long has baffled doctors, according to Prager.
The CDC is specific in its diagnostic criteria: Patients must exhibit unexplained fatigue that is not related to exertion and cannot be relieved by rest. At least four other symptoms also must be present for six months of more, including impaired memory, unrefreshing sleep, muscle aches, joint pain, headaches of a new kind, sore throat or tender glands.
Rivka Solomon's battle with CFS began two decades ago at the age of 21 when she and two best friends contracted infectious mononucleosis.
"They were sick for a week and I was bedridden for a year," said Solomon, now 47 and founder of the Boston-based women's empowerment group, That Takes Ovaries.
Seven years later, her symptoms intensified after a bout with "walking pneumonia," and she was forced to give up a career in international politics and to confine her work to writing her book, "That Takes Ovaries," about women being "bold, gutsy and courageous."
"It's unrelenting fatigue and comes with non-restorative sleep," she told "You are damned exhausted all the freaking time. It's a deep, to-the-bone exhaustion.
"I feel like taking a shower," she said, "but putting my arms up to wash my hair is too much work. And it doesn't ever go away."
Like Toussaint, Solomon experiences a "brain fog," which feels like "you are thinking through a thick cloud of pea soup," and chemical and perfume smells make her "dizzy and wacky."
The very name itself is a stigma, according to Solomon: "It's so pathetic, like calling Parkinson's 'shaky person syndrome.'"
The CDC has called the new CFS research exciting, but preliminary.
"If I don't know the nature of the cases and controls, I can't interpret the findings," Dr. William C. Reeves, who directs public health research on the syndrome, told The New York Times.
"We and others are looking at our own specimens and trying to confirm it," he said. "If we validate it, great. My expectation is that we will not."
The CFS debate goes back to an outbreak in Lake Tahoe, Nev., in 1984. Several hundred patients developed flu-like symptoms, fever, sore throat, headache and neurological problems like memory loss.
Chronic Fatigue Outbreak Dismissed by CDC
The CDC dismissed the epidemic at the time, even though the patients were infected with several viruses, and suggested these were psychiatric problems, according to Hillary Johnson, the author of "Osler's Web: Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic."
The name was coined in 1987 and "functioned as kind of a social punishment," Johnson said in an op-ed piece for The New York Times. CFS, which now carries the scientific name X-associated neuroimmune disease, is associated with a high suicide rate.
In 1991, Dr. Elaine DeFreitas, a virologist at the Wistar Institute in Philadelphia, found retroviral DNA in 80 percent of 30 her patients with chronic fatigue. Some of them also had rare forms of cancer.
The CDC tried to replicate her efforts, but ended research prematurely
and later criticized her work. The CDC acknowledged in 1999 that it had diverted millions of dollars allocated by Congress for CFS to other programs.
But at about the same time in the 1990s, University of Miami researcher Dr. Nancy Klimas pioneered lymph node extraction therapies for what was then called chronic immune activation syndrome.
Now, drug companies are taking an interest in her work treating eight patients with reverse transcriptase inhibitors, antiretroviral drugs similar to those used today in HIV/AIDS patients.
"They went from very ill to much, much improved," said Klimas, who now directs the Gulf War Illness and Chronic Fatigue Syndrome Clinic at the Miami Veterans Affairs Medical Center.
One company that hopes to find new therapies with Klimas is Ohio-based Neo Probe, which explores activated cellular therapy technology to treat cancer, as well as viral and autoimmune diseases.
According to Frederick Cope, vice-president for pharmaceutical research and clinical development, the one "lingering question" is whether Klimas' sequencing matches those done in the Reno research.
"I wouldn't necessarily assume that it is," Cope said.
Another is getting more information on the long-term effect of this therapy, "not only that is safe, but that it is effective."
But Klimas said, "It's exciting to be excited. It's been a tough field to be in. Like Rodney Dangerfield, we don't get no respect."
The research also may bring new insight into other diseases like Gulf War illness, autism and even schizophrenia.
Klimas understands the urgency in finding vaccines and treatments.
"I take care of HIV patients all day and chronic fatigue patients another day," she said. "Between the two, the CFS ones are the more miserable. Most of my HIV patients are hale and hearty. My CFS patients cannot even participate in the care of their own families."
But no one is more excited than the CFS patients themselves.
"The news completely changed my life," said Solomon. "There's a skip in my walk because, for 20 years, even though no doctor ever discounted me, it's been a real burden and embarrassment. It means there is hope."
"[Chronic fatigue syndrome] doesn't kill you like HIV/AIDS did before treatments, but it really does limit you. You have a very small life," she said. "Now we can focus on strategies and maybe I can get my life back before I am dead."
Click here for more information on theChronic Fatigue and Immune Dysfunction Syndrome Association of America.
Copyright © 2009 ABC News Internet Ventures

Dr. Bell Speaks

Lyndonville News: XMRV and the Oct. 29 CFSAC Meeting

XMRV and the Oct. 29, 2009 CFSAC Meeting

David S. Bell, MD, FAAP

In the CFS Advisory Committee meeting October 29, Dr. Dan Peterson filled in several blanks. I will present much of what he said at the lecture December 6th. But here is the important piece:

XMRV DNA was found from 68 of 101 patients (67%), and this was in the Science paper. That leaves 33 patients with CFS who were negative. But on further testing 19 of these 33 are XMRV antibody positive, 30 of these 33 had transmissible virus in the plasma, and 10 of these 33 had protein expression. Overall 99 of the 101 patients show evidence of XMRV infection.

David S. Bell, MD, FAAP
These results have interesting implications. The most important is that there is not a simple test now that will tell you if you have XMRV or if the virus is active in your system. And we need a good control study using all three measures to accurately know control presence of the virus. This is not a fly-by-night operation. Right now, it is necessary to do several tests to know the XMRV status:

a) DNA by PCR
b) Viral infectivity
c) Detection of viral proteins
d) Antibody to the XMRV envelope

As time goes on and we learn more, this process will be simplified. What I do not want is poor science that will cast doubts on an illness that already has its fill of doubters. Let's do it right from the beginning. If by doing it right XMRV proves not to be the cause, so be it. Something is the cause.

Dr. Coffin of Tufts University and the National Cancer Institute presented some very interesting observations. He is a true veteran (45 years) of retroviral research. There have been comments from various people saying that there are lots of viruses associated with CFS, so what is the big deal? Among the points raised by Dr. Coffin:

a) it is relatively difficult to isolate live retrovirus from patients with HIV infection, but relatively easy to isolate live XMRV in CFS. There is a high percentage of infected cells.

b) The percentage of positive controls for XMRV not that much different between CFS controls and prostate cancer controls, 4 or 5%. However, much work needs to be done to verify the control incidence. This is particularly true because the nations' blood supply could be contaminated. (By the way, no patient with ME/CFS should donate blood - personal opinion) The Japanese Red Cross has said that there is a "low incidence" of XMRV in their blood supply.

c) Could some mouse have contaminated the tests by shedding some XMRV in the lab? XMRV is a big family of "simple" retroviruses. In the XMRV strains isolated in CFS patients there is a 0.3% diversity from what are carried in mice - a relatively large diversity. This virus does not vary with replication as much as HIV does. In two weeks of HIV replication the diversity is greater than 0.3%. And this is both good and bad news. Good news for the ultimate production of a vaccine. The diversity has been a roadblock in the production of a HIV vaccine. Bad news for the antiviral therapy implications. But that is way down the road.

d) Dr. Coffin presented a slide of the many things we do not know about XMRV. There are lots of things to do.

e) Dr. Coffin mentioned that there is excitement in the retroviral scientific community - very good news for the ME/CFS community. We will get confirmation, or lack of confirmation, from many good scientists. It will be difficult for biased scientists to squelch this, if it is, in fact, true.

The statement that made my socks roll up and down all by themselves was a reply to a question from the committee. Dr. Coffin said "This was as good as it gets for a first paper, but it is still just a first paper."

Theory of Mechanism of XMRV and ME/CFS

Dr. Peterson presented an update of a theory of mechanism that has been circulating for many years. Ironically enough, it was once called the "X factor theory."

Step 1: Infection with XMRV. No idea of how this happens. Could it be that the tiny XMRV piggybacks onto some huge, lumbering herpes virus like EBV, or HHV6. That mechanism is known to occur. Lots of other possibilities.

Step 2: Infection of B, T lymphocytes and NK cells. Dr. Klimas has said that up to 70% of lymphocytes are "activated". Something is going on.

Step 3: Impairment of NK cell number and activity. Because of the retroviral infection, the NK cells are impaired. This is parallel to what is known to happen in HIV disease with the CD4 lymphocytes. As a result of poor NK cell and function (and other T & B cell problems) the person now has an immunodeficiency. NK cells are important in the control of herpes viruses and other agents.

Step 4: Reactivation of other agents. Increased viral load of EBV and other agents cause cytokine production, activation of 2'-5'A Synthetase, RNAse L which contribute to symptoms. It is interesting to note that AIDS patients feel better with suppression of secondary infections. This could explain why treatment with antibiotics, antivirals, gamma globulin and other agents make some patients with ME/CFS feel better for a while.


Archived video of Dr. Daniel Peterson's presentation of the CFSAC 10/29/09 should be available at: It is my personal opinion that it is history in the making. Time will tell.

And while I am making rash predictions, let's talk about the name of this illness. It has been a favorite topic of mine since the "Disease of a Thousand Names." Chronic fatigue syndrome is a miserable name. I think that XMRV is going to turn out to be the puppet-master that pulls the strings of illnesses variously called CFS, ME, fibromyalgia, atypical multiple sclerosis, chronic mononucleosis…. And if it does, the name should be XAND, for Xmrv Associated Neuroimmune Disease. I heard Mrs. Annette Whittemore use this term and it feels right. History.

Lyndonville Research Group Report

The Lyndonville Research Group is back in business. A couple of phone calls, a pizza, and we are off again. I think that is the definition of a grass roots organization. We have four projects listed and have begun working on them. #1 is the lecture in Batavia on December 6 at 2 PM. I anticipate the talk will be about 1 hr to 1 ½ hours, then a break, then questions until 5 pm. The rental of the conference room is reasonable, and it holds 400 people. I think now is the time for communities to get active again, and I will be happy to present this talk to any community, providing a local group or individual pays airfare and lodging. It might be a good way to get support groups active again.

Project #2 is to begin organizing support for the New Jersey NEI center and their satellite branch in western New York. If I did not have to run the business, I would be happy to see patients with CFS in western New York.

Project #3 is important. It is now 25 years since the outbreak in Lyndonville, and we are tracking down the 60 kids who got ill at that time to find out what has happened to them. The 15 year follow up study was published (Bell D, Jordan K, Robinson M. Thirteen-year follow-up of children and adolescents with chronic fatigue syndrome. Pediatrics 2001;107:994-8) 20% of the kids in that study were still sick, but what is happening now? We'll see.

Project #4 is perhaps the most important of all. Did XMRV cause this cluster outbreak? If so the 60 kids should have demonstrable exposure to XMRV. Does this virus cause some to stay sick? If so, we should find viral DNA and viral proteins showing replication in those still sick, but not in those who got well.

Question and Answer
Question: There were many questions about getting tested for XMRV.

Answer: I am reluctant to suggest to anyone that they spend big bucks for a commercial test now. We do not know if a particular test is accurate, and even if it is accurate we do not know what it means, and even if we did know what it meant we would not know what to do with it. I would be patient. Answers will start flowing soon, so stay tuned

Public Lecture, December 6, 2009 in Batavia, NY on XMRV and ME/CFS

Because of the enormous interest generated, I will be giving a talk on the XMRV virus and what is known about its relationship to ME/CFS on Sunday, December 6, 2009. The talk will take place from 2 pm to 5 pm at the Holiday Inn of Batavia NY (8250 Park Road, Batavia, NY, 14020), right next to the NY State Thruway. The location was chosen because it was roughly equidistant from both Rochester and Buffalo, and the presence of rooms at a reasonable cost ($80) for those persons wishing to stay overnight. There will be a $10 per person charge at the door to cover the costs.

In this lecture, material will be presented from the Science paper, Dr. Dan Peterson's testimony at the CFS Advisory Committee meeting, and our hopes for a study to help confirm these findings. I will also share my opinions about treatment options that may open up in the future.

To subscribe to Lyndonville News: Go to and follow the instructions. The e-mail subscription is free.

Numerous articles from Reno about XMRV

There is a main article, 'Medical breakthrough puts Reno in
spotlight', plus an absolute ton of other articles by the same
reporter, I guess she got so much info it wouldn't all fit into one!
They're all good reads though.


'Medical breakthrough puts Reno in spotlight'
Medical study buoys patients, earns scientists global acclaim
By Lenita Powers • • October 31, 2009

Judy Mikovits remembers that "eureka" moment when she realized that
she and her team of researchers at the Whittemore-Peterson Institute
in Reno had discovered a new retrovirus that could lead to a possible
treatment, even a vaccine, to combat Chronic Fatigue Syndrome.

"It was January 22, and we were in a San Diego restaurant called the
Yard House," said Mikovits, who had gone there with fellow scientist
Vincent Lombardi to present the results of their research to Frank
Ruscetti and Robert Silverman, two of the world's leading virologists.

"We kept waiting for them to say something," Mikovits said. "I was
nauseous. Bob (Silverman) waited a long a time, and then he looked up
and said, 'Well, this is going to change their world.'"
And it has.

The research resulted in a paper that was published last month in a
prestigious scientific journal, which set off a flurry of media
coverage that put the Whittemore-Peterson Institute and Reno's name in
reports from the New York Times, the Wall Street Journal and the BBC.

The institute's finding also heralds the prospect of money to be made
from intellectual property that could be used to develop drugs and a
vaccine, and of prestige for Reno and Nevada as scientists from around
the country and the world take part in future research, Mikovits said.

This breakthrough discovery of a new infectious human retrovirus in
Chronic Fatigue Syndrome patients also holds out hope to those who
suffer from other illnesses, including fibromyalgia, nongenetic autism
and possibly even some forms of cancer, WPI researchers said.

In addition to money and fame, the discovery of the new retrovirus
XMRV and its link to Chronic Fatigue Syndrome could provide the
medical world with the first means to diagnose those stricken by the
disease, Lombardi said.

"What makes this especially exciting is patients, who basically have
been ridiculed and poked fun at for having a disease that has been
given very little credibility, finally would have hope," Lombardi
said. "And it could lead to real treatment strategies."

'If we could develop a vaccine'
Annette Whittemore, founder and president of the Whittemore-Peterson
Institute, said the recent findings could lead to drugs to treat
syndrome patients, but just as important, it also could mean the
development of a vaccine to protect others from the illness.

"The idea of another generation that could be so deeply impacted ...
If we could develop a vaccine and actually stop that from happening,
it would be fantastic," Whittemore said.

The rate of the syndrome within families suggests it could be
transmitted more easily than previously thought, but additional
studies must be done to determine how the retrovirus passes from
person to person, Mikovits said.

"That's why the National Institutes of Health is interested. There's
some misconception that just because XMRV is an HIV-related
retrovirus, it's sexually transmitted, but that's not been shown yet,"
she said. "What our paper shows is we can get it out of the blood, but
more research is needed."

She cautioned that just because someone is found to have the
retrovirus doesn't mean they will develop the symptoms of the
syndrome. "People who are resistant, their immune systems could be so
strong that, although they're replicating the virus like mad, they may
never get sick because they can keep the virus down," Mikovits said.
"So we're looking at that, too."

Further research also is needed to determine if XMRV causes the
syndrome or if the retrovirus sets up an immune deficiency that
results in susceptibility to the syndrome and possibly other diseases
such as autism or some cancers.
"We saw (the retrovirus) in 30 percent of a small number of autistic
patients we looked at," Mikovits said. "That's 30 percent, but if one
in about 100 children have autism, that's a lot."

The XMRV retrovirus also was found in 3.7 percent of the control group
of 218 healthy people who did not have Chronic Fatigue Syndrome.

Mikovits said extrapolating that percentage to the rest of the nation
could mean as many as 10 million people in the United States could
have the retrovirus, but it might never result in illness among those
with strong immune systems.

Vaccines, treatments
If further research demonstrates XMRV causes the syndrome, then drugs
to treat it and a vaccine to prevent its spread could be developed,
Mikovits said.

The National Cancer Institute already has started working on a
vaccine, and clinical trials are expected to begin at the
Whittemore-Peterson Institute sometime next year, Mikovits said.

The world's largest pharmaceutical companies have been calling the
institute asking if they can test their lines of a drug now used to
treat patients with HIV, another retrovirus, to see if their
anti-viral drugs can be adapted to treat Chronic Fatigue Syndrome

"They want us to send them the (XMRV) retrovirus so they can screen
huge libraries of compounds and see what they have that could work,"
Mikovits said. "They already have drugs to treat HIV, so they could
redesign a compound for the XMRV virus. Since they already have FDA
approval, they could get something out to people fast."

Among the drug companies lining up are LabCorp and Quest, two of the
largest diagnostic companies in the world, Mikovits said.

The drug companies will pay for the Reno institute's cell lines, the
established cultures that will grow the XMRV retrovirus so they can
test their antiviral drugs on them, she said. "I think this will bring
money into the state right now," Mikovits said. "Investigators will
want to come to the University of Nevada, Reno to do science, and we
will have to hire doctors and nurses for the clinical trials."

Future research and biotechnology stemming from the initial study is
expected to generate more research and intellectual property.

"And the Whittemore-Peterson Institute is nonprofit, so we can put it
all back into the patients," Mikovits said.
Lombardi, Mikovits' colleague at the institute, said the recent media
attention has overlooked the critical contributions made by UNR.

"They haven't gotten credit for the resources and the lab space and
support they have given, without which this never would have
happened," Lombardi said.

"For the university, Reno and the whole state, it will put us on the
map," Mikovits said. "It's already doing that."


Daughter's illness led family to seek help, start institute
By Lenita Powers

The vision to create the Whittemore-Peterson Institute for
Neuro-immune Disease in Reno began when the parents of a young girl
debilitated by illness joined forces with an Incline Village doctor
who became renowned in the field of Chronic Fatigue Syndrome for the
cluster of cases he treated in 1984.

"Andrea really was the inspiration for this place," said Annette
Whittemore, founder and president of the institute, of her now
31-year-old daughter, Andrea Whittemore-Goad, who still suffers from
the illness.

Whittemore said she and her husband, developer and former lobbyist
Harvey Whittemore, became frustrated by the lack of answers from
doctors who struggled to treat their daughter, who first started
showing symptoms of the syndrome at age 12.
With the support of other medical professionals and families affected
by the illness, the Whittemores and Dr. Daniel Peterson of Incline
Village established the Whittemore-Peterson Institute in 2005 to help
millions of patients suffering from Myalgic Encephalomyelitis/Chronic
Fatigue Syndrome, fibromyalgia and related illnesses.

"The institute also grew out of Annette's desire to honor Dr. Peterson
for his life's work," Harvey Whittemore said.
In 2005, the Nevada State Legislature approved $10 million toward the
construction of a new research facility at the University of Nevada,
Reno to further a joint project with the University of Nevada School
of Medicine and the Whittemore-Peterson and Nevada Cancer institutes.

Harvey Whittemore said his wife has been the driving force behind
making the institute a reality, but he remembers the day he became
determined to see the project through.

"I came home, and Andrea was on the couch, and the lymph nodes in her
neck and shoulder were so swollen, and her heart was racing over 140
beats a minute. I just said, 'Andrea, I don't need any more signs as
to how sick you really are.' And from that moment, it became part of
our life's work, and I didn't care what people said or who supported
or did not support what we were going to do."

The institute will have a new home next year when it moves from its
one small laboratory and tiny office in the Applied Research Facility
at UNR into a new $86 million state-of-the-art research facility
scheduled to open in the fall on the north end of the university.

The Center for Molecular Medicine will house the university's research
programs in cancer biology, infectious disease, cardiovascular
disease, gastrointestinal disease and neurosciences. A portion of the
new building also will serve as the headquarters for the
Whittemore-Peterson Institute and UNR's Sanford Center for Aging.

Harvey Whittemore said his family has spent "millions" on the
institute, but he said he doesn't know the exact amount.
The institute is receiving mainly positive responses to the research
paper published last month about the infectious retrovirus found in a
large percentage of Chronic Fatigue Syndrome patients.

The institute is nonprofit, and donations are tax deductible.
Whittemore said the biggest benefit will be to Reno and Nevada.
"This is really a world-changing event. I don't think people realize
how amazing it is that this happened in Reno," he said. "But when you
see the stories in the Wall Street Journal and in the New York Times
and the worldwide coverage from the BBC, it's amazing."

The Institute
Established: 2005
the name: Named for the Whittemore family and Dr. Daniel Peterson, an
Incline Village doctor who is the institute's medical director.
Funding: The Nevada Legislature allocated the institute $400,000 in
2007 and $600,000 in 2008 for operations costs. The University of
Nevada, Reno gave the institute a $50,000 pilot grant in 2008.
Location: Now occupying a small laboratory and an office in the
Applied Research Facility on the UNR campus, the institute will occupy
a portion of the university's new Center for Molecular Medicine,
pictured above, when it opens next year.
Faculty/staff: Dr. Daniel Peterson of Incline Village; Judy Mikovits
of Reno and Nancy Klimas, a professor of immunology at the University
of Miami medical school and a consultant with the institute.
Scientific office staff: Mikovits, Vincent Lombardi and David Pomeranz.
Administrative staff: Klimas, conferences and think tanks; Michael
Hillerby, office of development; and Angelina Wyss, fundraising.


'I don't ever want to seem like I'm suffering from this disease'
By Lenita Powers

Andrea Whittemore-Goad may be the reason her parents decided to create
an institute to try to unlock the mysteries behind Chronic Fatigue
Syndrome, but an estimated 17 million people around the world also
stand to benefit.

The day after a respected scientific journal published the institute's
study that found an infectious retrovirus in a majority of Chronic
Fatigue Syndrome patients, Whittemore-Goad received a call from one of
those people.

"It was a woman from New Mexico, and she told me, 'You don't realize
what this means to me. For the first time in 18 years, I have hope. I
sat down and cried because after all the struggles, after all the pain
I've been through, I realized there is someone out there who cares and
wants to help me.'"

The study suggests but has not yet proven that the retrovirus actually
causes their condition. Much more research needs to be done, but for
the 31-year-old Whittemore-Goad, it has opened up a whole new world of

"This has brought attention that we never had before when it comes to
this disease," she said during a telephone interview from her Reno
home. "The Internet has brought a network of people together, and
we're all saying something has to be done now. We have kind of been
preaching to the choir all these years, but now the world is
listening. For the first time, they're hearing our cries for help."

Whittemore-Goad said she was about 11 or 12 when she first began
getting headaches and suffering from extreme fatigue that no amount of
sleep could relieve.

"I'd be in the classroom listening to the teacher, and I'd have to put
my head down on the desk and rest awhile," she said. "I had flu-like
symptoms, and my heart would race for no reason."

After years of being treated for the symptoms, she began seeing a
local homeopathic doctor, and by age 17, she started feeling well
enough to enroll at the University of Nevada, Reno.

But the university required she be current on her measles, mumps and
rubella vaccinations.

"I got the vaccination, and I relapsed and never recovered. My gall
bladder and appendix got infected, and they had to be removed. I also
was having chronic pain."

When she was 19, she began seeing Dr. Daniel Peterson in Incline
Village and with medication, her condition improved again by age 21.

"I moved out of home, and for the first time, I was independent and
could drive to the grocery store and do things I wasn't able to do
since 10 or 11 years old," she said. "I became a part-time yoga
teacher and got certified as an instructor."
But Whittemore-Goad had to go off her medication and had another
relapse two years ago. She began having seizures and went to a

"They haven't been able to get them under control," she said. "It's
been life-changing. I'm not able to go out of the house often, and I
have to have seizure medicine with me at all times."

Whittemore-Goad's health, like most syndrome patients, is cyclical,
with some good days among the bad.
But even on her wedding day last April, she had to have a nurse and
doctor present to take care of her and give her fluids intravenously.

That doesn't mean Whittemore-Goad sees herself as a victim, and there
are many moments of joy in her life, thanks mainly to her family and
Brian Goad, her husband of six months.

"The thing is, I don't ever want to seem like I'm suffering from this
disease, but rather that I have been surviving it and someday will
conquer it, and be able to live a normal life," she said. "I'd like to
go back to college, get a degree, become an elementary school teacher
and, one day, have a child with my husband."

She hopes that day will come sooner now with the research being
conducted by the Whittemore-Peterson Institute in collaboration with
the National Cancer Institute and the Cleveland Clinic.

"I have been so blessed because Brian and my family are so supportive,
but one of the biggest things I lost was my independence, and that has
been a hard struggle," Whittemore-Goad said.


Patients hope for vaccines; researchers eye links to other diseases
By Lenita Powers

As the news has spread that a retrovirus has been linked to Chronic
Fatigue Syndrome, people around the world who suffer from the illness
and similar neuro-immune diseases have been thanking the researchers
at Whittemore-Peterson Institute in Reno for giving them new hope.

"I used to describe having the syndrome as being akin to the sound of
one hand clapping," a woman wrote from London. "Well, now all those
hands are coming together in applause all around the world. I hope all
you brilliant people at the WPI can hear us cheering."

The discovery of a new infectious human retrovirus has prompted
positive reactions from patients, researchers and those suffering from
other illnesses. The next step for researchers is to determine if the
new retrovirus is the cause of the syndrome.
If it is, drugs and even a vaccine could be developed for syndrome
patients, and possibly for those who suffer from related diseases such
as autism.

Fred Friedberg, president of the International Association of Chronic
Fatigue Syndrome/Myalgic Encephalomyelitis, called the discovery of
the retrovirus "hugely exciting."

He said the study was the subject of a recent conference call among
the members of the international association, which is made up mainly
of professors, scientists and clinicians.

"We were discussing the implications of the findings and where it
could lead, and the research possibilities of therapy and a vaccine,"
said Friedberg.

However, Dr. William Reeves, who heads the research into the syndrome
at the Centers for Disease Control and Prevention, said the CDC would
use its own blood samples to try to confirm the results of the study
done by the Whittemore-Peterson Institute. "If we validate it, great,"
Reeves told a Florida newspaper. "My expectation is that we will not."

Reeves could not be reached for further comment.

Vincent Lombardi, a researcher at the Whittemore-Peterson Institute
and one of the authors of the research paper, said having the research
published in the journal Science, which is well-respected, underlines
the significance of it. "The one thing that makes our research so
credible is that there have been more than 5,000 peer-reviewed papers
on the syndrome, but they have never been published in the journal of
Science," Lombardi said.

Judy Mikovits, the lead researcher in the study, said their findings
also are being taken seriously by the rest of the scientific

"I've gotten more than 100 e-mails from physicians, and I've gotten
calls from the head of the Mayo Clinic and the clinical director at
Sloan-Kettering," she said. "Those people wouldn't take the time if
they didn't think this was a significant finding."
Mikovits said the Whittemore-Peterson Institute is working with
officials in other countries who want the blood samples of their
patients tested for the retrovirus.

"We've got about 500 samples from the United Kingdom, and we also were
approached by the head of the the syndrome organization in Spain," she
said. "We eventually expect to collaborate with many other countries:
Norway, Germany and others. Everybody is asking if we can test their
samples and asking how they can get in the clinical trials."


A brother's wish: 'I almost always wish for Becca to get better'
By Lenita Powers

When 9-year-old Benjamin Ghusn tosses a coin in a fountain and makes a
wish, he usually asks for the same thing: that his older sister won't
be in pain anymore

"I almost always wish for Becca to get better," Ben said recently as
he sat on the sofa in his family's southeast Reno home curled up next
to Rebecca, a petite 15-year-old who suffers from Chronic Fatigue
Syndrome. Her story is one that will be familiar to other people with
CFS and their families.

At age 11, she became ill with what appeared to be a severe case of
the flu. But this flu didn't go away and the symptoms persisted and
worsened. Rebecca grew so ill, she missed an entire year of school.

As she grew increasingly exhausted, at times to the point of fainting
and collapsing on the floor, her parents, Nancy and George Ghusn,
feared the worst.

Previous visits to a local pediatrician resulted in a battery of tests
but no diagnosis. Finally, the pediatrician told Rebecca's parents
that their daughter had psychological problems. She suffered from
depression and a phobia about going to school, the pediatrician told
her parents.

That didn't ring true for Nancy Ghusn, a Washoe District Court master.
Her daughter had been an A-student in the Gifted and Talented Program,
and she enjoyed school and the friends she had made there.

In desperation, Rebecca's parents finally took her to see Thomas
Klitzner, a pediatric cardiologist at the University of California,
Los Angeles, who told them their daughter had a classic case of
Chronic Fatigue Syndrome.

Then they learned about Dr. Daniel Peterson, who specializes in CFS,
and began taking Rebecca to the Incline Village physician's clinic.

"Until we found Dr. Peterson, we didn't know what to do," said George
Ghusn, owner of BJG Architects and Engineers. "We had a diagnosis but
we didn't know what to do."

"Oh, yes," Rebecca said. "Dr. Peterson has been a godsend."

But like all CFS patients, Rebecca still has her good days when people
can't believe there's really anything wrong with her.
And then there are the bad days.

"Sometimes I'm better and sometimes I'm not," Rebecca said. "When I'm
around people, I'll get all hyper and jittery but then I go home and
crash. Of course, I get really tired. Sometimes it feels like there's
something cold inside of me and I'm hollow inside. My temperature is
usually lower than 98.6."

Her father said his daughter occasionally will seem confused and have
trouble concentrating, a condition they call "brain fog."
"Yeah, it's horrible," Rebecca said. "And I get aches that feel like
my bone marrow turns to Blue Ice, that stuff you put in lunch boxes to
keep your food cold. My left knee bothers me, too, and I have aches
and pains. Sometimes I feel like I'm about 80 years old instead of
just 15."

The Galena High School sophomore said her immune system "crashed" and
she hasn't been able to go to school for the last couple of months.
She's had to have teachers for the homebound come to the house and she
takes a Latin class online.

Rebecca also suffers from a long laundry list of food allergies that
includs gluten, whey, pineapples, oranges, and onions.
It isn't any easy way of life, but George and Nancy Ghusn try to make
it as normal as possible for the family.

"We try to stay cheerful and we go on cruises so Becca can be with
other kids and see things without getting to tired," Nancy Ghusn said.
"It's kind of been our philosophy to live our lives as fully and
positively as we can."

George Ghusn said the family is "cautiously optimistic" about the news
last month about the Whittemore-Peterson Institute's study showing the
presence of a retrovirus in 67 percent of the CFS patients.

"Just because they found this doesn't mean that it will eliminate the
problem," he said. "Hopefully, it will lead to treatments that will

Symptoms of Chronic Fatigue Syndrome
A diagnosis of CFS should be considered in patients who have six
months or more of unexplained fatigue accompanied by other symptoms.
Primary symptoms: Impaired memory or concentration; exhaustion and
increased symptoms after physical or mental exercise; still exhausted
after sleeping; joint pain without redness or swelling; persistent
muscle pain; headaches of a new type or severity; tender lymph nodes
and sore throat.
The frequency of occurrence of these common symptoms varies among
patients: Irritable bowel, abdominal pain, nausea, diarrhea or
bloating; chills and night sweats; brain fog or trouble concentrating;
chest pain; shortness of breath; chronic cough; blurred vision,
sensitivity to light, eye pain or dry eyes; allergies or sensitivities
to foods, alcohol, odors, chemicals, medications or noise; difficulty
maintaining upright position , irregular heartbeat, dizziness, balance
problems or fainting; psychological problems such as depression,
irritability, mood swings, anxiety or panic attacks; jaw pain and
weight loss or gain.
Source: Centers for Disease Control and Prevention

Scientist's empathy for patients comes from family's own experience with cancer
By Lenita Powers

It was the death of her grandfather when she was a child that set Judy
Mikovits on a path to help others stricken with illness, especially
those who deal with the ridicule associated with Chronic Fatigue

"When I was about 12 years old, my grandfather got lung cancer," said
Mikovits, the lead researcher at Reno's Whittemore-Peterson Institute
for Neuro-immune Disease.

Her parents had divorced, and Mikovits moved with her twin sister and
mother into her grandfather and grandmother's home in Washington,
D.C., during the 1968 riots when the streets were literally on fire.

"My grandfather was a quiet, gentle guy," Mikovits recalled. "He kept
telling us everything was going to be OK, but we wondered what we
would do without him."

In those days, people didn't even say the world "cancer," and some
people still harbored the false belief that it was infectious, she

"My grandfather was dying of cancer, and nobody would talk about it,"
Mikovits said. "One day I said to him, 'Don't you know you're dying?'
And he said, 'Don't say that. I don't want your grandmother or your
dog, George, to know."

"He was dying of cancer, and nobody would talk about it. That's what
bothered me most."

It's what instilled the 52-year-old microbiologist with the empathy
she has today for patients with Chronic Fatigue Syndrome.
"All these CFS patients are stigmatized; that's why they stay in the
closet. I think we're where we were 40 years ago with cancer,"
Mikovits said. "It carried a stigma like CFS does."

Some medical professionals believe the symptoms of Chronic Fatigue
Syndrome patients are the physical manifestations of emotional or
psychological problems.

But the research conducted by Mikovits and her team of reachers at the
Whittemore-Peterson Institute could provide the first means to
actually diagnose the illness with the discovery of a new infectious
human retrovirus, XMRV.
"You talk to CFS patients and they say, 'Thank God I have a deadly
retrovirus. Thank you,' because now that makes their illness real.
They aren't just crazy," Mikovits said.

Mikovits (pronounced Mike-oh-vits) returned last week from an annual
conference of the Society for Leukocyte Biology, the International
Cytokine Society and the International Society for Interferon and
Cytokine Research held in Lisbon, Portugal, where she was invited to
discuss her team's latest research.

"They applauded before I gave my presentation," she said. "It was such
a surprise, because they never applaud before a presentation."


Judy Mikovits
Hometown: Flint, Mich.
Education: Bachelor's degree in biochemistry from the University of
Virginia; Ph.D. in biochemistry and molecular biology from George
Washington University.
Career: Worked from 1980 to 2002 at the National Cancer Institute in
Frederick, Md., where she directed the Lab of Antiviral Drug
Mechanisms. She also served as a senior scientist and group leader at
Biosource International, headquartered in Camarillo, Calif., and was
chief scientific officer and vice president of drug discovery at
Epigenx Biosciences in Santa Barbara, Calif. Mikovits has co-authored
more than 40 peer-reviewed publications that address fundamental
issues of viral pathogenesis, hematopoiesis and cytokine biology. She
joined the Whittemore-Peterson Institute as its lead researcher in

Monday, November 2, 2009

Hillary's latest
"In response to criticsm from members of the committee about Reeves' recent comments to the press, particularly Reeves' comment that he did not expect the agency to be able to replicate the WPI finding of XMRV in patients, Miller said, "Dr. Reeves is not doing the lab work," to which someone replied, loudly, "Thank God," a comment that was met with wide applause. "Those of us in the research arena know that you really haven't seen anything until you've seen it twice," Miller persisted. The WPI work has been confirmed in three labs already." 

"the tone of most posts is not the way pwcs post. We usually post as frustrated
people facing an invincible force. The posts there say the public is so upset that
Reeves is going to fall."

We made Science Magazine's Top Ten!

The XMRV news made one of the top ten news items in the monthly "Science" Roundup.
Viral Link to Chronic Fatigue

As its name implies, chronic fatigue syndrome (CFS) is characterized by debilitating fatigue that can persist for many years. Although often linked to immune system dysfunction, the cause(s) of the disorder remain mysterious. In a Report in the 23 Oct 2009 Science (published online 8 Oct), Lombardi et al. presented a potential new lead. The team found that blood samples from 68 of 101 CFS patients contained DNA from a human retrovirus called xenotropic murine leukemia virus–related virus (XMRV), which is genetically similar to a murine leukemia virus. Cell culture assays confirmed that XMRV derived from CFS patient plasma and from T and B lymphocytes was infectious. Interestingly, nearly 4% of the 218 healthy donors tested were also positive for XMRV, which suggests that the virus may be present in a significant proportion of the general population. As noted in an accompanying Perspective by J. M. Coffin and J. P. Stoye, CFS is not the first human disease to which XMRV has been linked: it has also been linked to an aggressive form of prostate cancer (see the related News story by S. Kean in the 9 Oct issue). Both laboratory and epidemiological studies are needed to determine whether the virus plays a causative role in these diseases



Don't Get Sick. If you do, Die Quickly.

Finally, a politician with enough guts to tell the truth!
When Democracy for America endorsed Alan Grayson for Congress last year conventional wisdom in DC said Grayson was a long-shot at best. No one thought he would win. No one, that is, but DFA members on the ground who were working hard every day to deliver results.

Alan Grayson hasn't looked back since Election Day. He's not afraid to say what it takes to get the message across and fight back against Republican lies and misinformation.

Now, one year from today, Alan Grayson is up for reelection and Republicans have put a giant target on his back. It's pretty straight forward why -- they're afraid of him. They're going to pull out all the stops to defeat him. We can't let that happen.

So today, DFA members are joining with others across the progressive movement for a one-day contribution "money bomb" in support of Alan Grayson. If we raise $400,000 today, we'll send chills down the spine of every single right-wing blowhard around the county.


So why DO the Republicans hate Grayson so much?

Well, Republicans spent the whole summer yelling lies about "Death Panels" and how President Obama was going to pull the plug on grandma.
And all August, Democrats in Congress went from town hall to town hall playing defense and trying to figure out what hit them. Alan Grayson had enough. There is no Republican plan on healthcare. They would rather do nothing, than fix it. Recognizing that over 42,000 Americans a year die because they don't have health insurance under our current system, Representative Grayson decided it was time to go on the attack and put the Republicans on defense.
"The Republican's healthcare plan:
1) Don't get sick
2) if you do, Die Quickly"
One sentence and Rep. Grayson reclaimed the debate. Everyone was talking about it. How many Americans don't have insurance? How many Americans die each year because of it? What actually IS the Republican plan?


Republicans aren't used to Democrats attacking back, but they immediately went on the war path. They demanded Grayson apologize. He was already a step ahead of them.

Rep. Grayson took to the floor of Congress and apologized to the dead. To every American who had died while Republicans held up the healthcare debate and Congress waited to enact reform.
Suddenly, it's the Republicans who didn't know what hit them. First a Democrat stands up and then he won't shut up and sit down when Republicans yell at him? You can imagine their surprise.

Thanks to Alan Grayson, for the first time all summer, Republicans were finally playing defense.

But that won't last forever. Congressional Quarterly recently downgraded Rep. Grayson's reelection race from a "toss-up" to "leans Republican." That's why we need to have Grayson's back. If we raise $400,000 in one day, we'll send a message to Republicans nationwide they won't miss.


Representative Alan Grayson is delivering results for progressives in Congress. Today, working together, we're going to make sure progressives deliver results for his reelection back home.

I just contributed $25. I hope you'll join me. Thank you for everything you do.


Charles Chamberlain
Democracy for America


IACFS/ME president's testimony to CFSAC

[permission to forward or re-post]

To the ME/CFS Community:

I presented the statement below to the CFS Advisory Committee meeting in
Washington, DC, Oct. 29-30, 2009. The most urgent and important issue
right now is changing the leadership and direction of the CFS program at CDC, as $25
million in research funding is at stake. If this meeting does not change the
status quo then further advocacy actions will be necessary.

Fred Friedberg, PhD

As president of the IACFS/ME, I thank the CFS Advisory Committee for this
opportunity to present testimony on behalf of my organization. Six months ago
the three major CFS scientific advocacy groups, the IACFS, the CFIDS
Association of America, and this committee all recommended new, open-minded leadership at
the CFS research program in the Centers for Disease Control.
We commend this
bold and important action by the CFSAC.

Despite this unprecedented consensus, the CDC has shown no indication of changing its CFS program leadership. This is surprising given its track record to date. After 25 years (and over $100 million) of CDC research, chronic fatigue syndrome remains a stigmatized illness without substantive progress on public health policy or objective diagnosis and treatment. And their new 5 year $25 million plan fails to inspire any confidence that change will occur.

In fact, the consensus recommendation of these scientific advocacy groups was
based on dissatisfaction with the CDC's ill-conceived and impossibly
far-reaching 5 year research plan.
President Obama said in his inaugural address: The fundamental question of our
time, is not whether government is too big or too small, it will be whether it
works. The CDC is the world public health authority; It can certainly provide
more effective leadership in this poorly understood domain.

I am speaking not only for my organization but for several prominent
scientists whose opinions should be considered in our ongoing efforts
to effect
change. These individuals were unable to speak today.

Gudrun Lange was a member of the distinguished external review panel that in
2008 evaluated the CFS program at CDC; She asked me to read this quote:

"I am very disappointed that CDC has not been more proactive in implementing
important suggestions made by peer reviewers
. The committee recommended that
CDC, as the lead health agency dealing with CFS, establish closer
with other traditional public health agencies to further promote CFS as a
significant health concern. This includes using public service
announcements to
alert the public about CFS as an important health issue. In addition, it is
rather surprising that CDC has not shown any initiative to address obvious
research questions posed by the H1N1 epidemic. Why are we not surveilling the
population for post-infectious fatigue following H1N1?"

Distinguished UK scientist and geneticist, Jonathan Kerr, expressed the

Research output on CFS from the CDC in the last 5 years has been
principally in
the areas of gene expression and mutation. These studies used patients who did
not attend CFS clinics and were not diagnosed by recognised CFS clinicians
. A
microarray was utilised which did not represent the entire human genome (yet
such an array was available at the time). But, at no time were the microarray
gene profiles confirmed using real-time PCR, a standard procedure in
studies because the arrays are very sensitive but not very specific. The
findings of these papers do not lead anywhere and were not followed up by CDC.
They do not provide insights into pathogenesis, nor do they indicate candidate
treatment targets. The authors made no effort to explain their work in context
of the available CFS gene expression literature.

Although the CDC program has ignored the views of scientific advocacy groups,
their CFS program will not go forward without challenge
. Nor will this widely
supported protest be confined to one meeting of this committee. We
ask the CFSAC
to support us in our ongoing efforts. We respectfully recommend the following:

·    A continuing critical focus on the CDC chronic fatigue syndrome
program during
this and subsequent meetings until the leadership is changed.

·    A new scientific forum at the CFSAC that allows biomedical
scientists who wish
to speak at the meeting the opportunity to do so. This is important because
prominent scientists and clinicians who attempted to register to speak 3 weeks
in advance of this meeting were wait- listed.

·    Permission for non-US biomedical experts in CFS to participate in these
scientific forums. They are not permitted to speak now. Given that
there are so
few CFS experts worldwide, we need informed views to make informed

If we the CFS scientific community remain united in common purpose we can lead
the way to major new public policy initiatives and research programs that
advance the recognition and understanding of this still poorly understood

Thank you.

XMRV testing available from Redlabs

Dr. Vincent Lombardi, the primary investigator and first author on paper
that appeared in the 8 October 2009 issue of "Science", is the Director of
Operations for the licensing and development of the XAND test assays used by
VIP Dx for the detection of XMRV. To download a copy of the paper by Dr.
Lombardi et al, "Detection of an Infectious Retrovirus, XMRV, in Blood Cells
of Patients with Chronic Fatigue Syndrome" please go to  VIP Dx has licensed the same technology used in the
research of the XMRV virus to develop their XAND (XMRV associated
neurological disease) testing.

Press Releases

October 23, 2009, Reno, Nevada

It is with great pleasure that Viral Immune Pathology Diagnostics (VIP Dx)
announces the introduction of its family of diagnostic tests for the
Xenotropic Murine Leukemia Virus-like Virus for XMRV associated neurological
disease (XAND).

Test acceptance will commence on October 23rd, 2009. Please contact our
Client Relations staff to arrange the shipment of test kits and acceptance
of samples. Each XAND specimen must have an XAND acceptance code on the test
requisition. The XAND acceptance code is assigned by our staff and will
arrive on the test requisition in your specimen kit. Specimens sent without
the appropriate acceptance code may result in the delay or inability to
perform the diagnostic test. The diagnostic tests available for XAND* are as

XAND by PCR for XMRV active infection: Test Code XAND ($400)

XAND1 by virus culture for XMRV latent infection: Test Code XND1 ($500)

XAND2 by PCR for XMRV active infection and virus culture for latent
infection: Test Code XND2 ($650)
Coming Soon!

XAND with Western Blot (reflexive) as confirmation of XMRV active infection

XAND by serology: Serological assay for XMRV IgG antibodies will be
available shortly. Samples requiring serological testing may be banked for
future testing if requested.

We are accepting XAND tests on Tuesdays and Fridays only due to the
incubation period required for proper analysis. Therefore, you must have
your blood drawn on Monday or Thursday and ship immediately back to us by
priority overnight FedEx for receipt by us on Tuesday or Friday.

For XAND testing you must use the coded test requisition provided with your
kit. Refer to the updated specimen guidelines in the right column of the
test requisition for proper blood draw.

No special preparation is required for specimens; ship specimens at ambient
(room) temperature. Specimens must be received within 24 hours for proper
analysis. Collection and shipping instructions are included in each kit
along with all required specimen tubes. The return clinical envelope and
overnight airbill are also included.

We are very excited about our latest technology and new XAND test menu. To
order you test kit and check on test availability, please call Client
Relations at (775) 351-1890. Our Client Relations desk is open from 9:00
a.m. – 5:00 p.m. Monday – Friday PST. You can also e-mail your request to

On behalf of the VIP Dx team, we thank you for your continued support.

* The XAND tests were developed and their performance characteristics were
determined and validated by VIP Dx. These tests have not been approved by
the U.S. Food and Drug Administration (FDA) for diagnostic purposes. The
XAND tests are for informational use and medical expertise is required for
the correct interpretation.

Order XAND test kits:

5625 Fox Avenue, Suite 369
Reno, NV 89506

Phone: (775) 351-1890
Fax: (775) 682-8517
Client Relation Hours
9:00 a.m. - 5:00 p.m. (PST)

Vincent Lombardi, Ph.D.
Lab Manager & Assay Development

Marguerite Ross
Director, Marketing & Client Relations

Megan Martin
Client Relations Representative

Lois Ventura  

A new policy for CFS

Source: New York Times
Date:   October 31, 2009

A new health policy for Chronic Fatigue Syndrome
Re 'A Case of Chronic Denial,' by Hillary Johnson (Op-Ed, Oct. 21),
about chronic fatigue syndrome:

The Centers for Disease Control and Prevention estimates that one
million to four million people in the United States have chronic
fatigue syndrome, with approximately 80 percent of these cases
undiagnosed. Furthermore, the C.D.C. has indicated that chronic
fatigue syndrome is a debilitating illness with a yearly economic
impact of at least $9.1 billion.

Despite its prevalence, morbidity and economic impact, chronic
fatigue syndrome ranks near the bottom in federal research funding
of more than 200 diseases and conditions.

In 25 years of research on chronic fatigue syndrome, no
demonstrable progress has been made in identifying objective
criteria for diagnosis and treatment. Nor have physicians been
properly educated to care for these patients.

The illness continues to be stigmatized as frank malingering or a
nonserious psychiatric disorder. It is time for a thorough
overhaul of public health policy toward this debilitating illness.

Fred Friedberg
Stony Brook, N.Y., Oct. 23, 2009
The writer is president of the International Association for
Chronic Fatigue Syndrome.

(c) 2009 New York Times

Nobel Prize Winner on CFS -- Quote of the Month

"Scientists have already uncovered a lot about ME, but this information does not reach professional healthcare personnel, and the disease is still not taken seriously. It is about time this changes."
Professor Luc Montagnier,
Winnaar Nobelprijs voor de Geneeskunde in 2008,
(mede)ontdekker van het HIV-virus.  

Sunday, November 1, 2009

A History of Prejudice and Viruses

One key point, raised over and over at the October 29-30, 2009 meeting of the United States Department of Health and Human Services (DHHS) Chronic Fatigue Syndrome (CFS) Scientific Advisory Meeting was a reference to journalist Randy Shilts book "The Band Played On." It is a story of prejudice against patients that prevented the public and others from looking closely at a virulent, and uncontrolled virus that ravaged countless lives.
Whether XMRV is only found in the United States or whether like HIV it
originated in one geographic location and spread from there has yet to be
scientifically determined. The mode of transmission is also being explored.
But there appears to be some striking similarities both scientifically and
in regards to public perception.

Although it is well known within the CFS community that Wikipedia is full of
conflicting information about two separate things - unproven hypotheses
about neo-Freudian hysteria and unwellness and a severe neuroimmune disease
(ICD-10 G93.3) in regards to CFS, here is a brief summary of how prejudice,
a virus, and government foot dragging resulted in many lives lost and
destroyed in a much shorter time frame than CFS:

The history of *HIV/AIDS in the United States* began in about 1969, when HIV
likely entered the United
States  through
a single infected immigrant from Haiti .
[3]  In
the early 1980s, doctors in Los
Angeles,_California, New York City , and San
Francisco  began seeing young
men with Kaposi's Sarcoma , a
cancer  usually associated with elderly
men of Mediterranean ethnicity.

As the knowledge that men who had sex with men were dying of an otherwise
rare cancer began to spread throughout the medical communities, the syndrome
began to be called by the colloquialism "gay cancer." As medical scientists
discovered that the syndrome included other manifestations, such as
pneumocystis pneumonia ,
(PCP), a rare form of fungal pneumonia ,
its name was changed to "GRID," or *Gay Related Immune
This had an effect of boosting
homophobia  and
adding stigma to homosexuality in the general public, particularly since it
seemed that unprotected anal sex  was
the prevalent way of spreading the disease.

Within the medical community, it quickly became apparent that the disease
was not specific to men who have sex with men (as blood
patients, intravenous drug
users,heterosexual  and
bisexual  women, and newborn
babies became added to the list of afflicted), and the Centers for Disease
Control and Prevention
renamed the syndrome AIDS (Acquired
Immune Deficiency Syndrome) in 1982.

Hemophiliacs , who require
injections of blood clotting factor as a course of treatment, during the
late 1970s and 1980s also contracted HIV in large numbers worldwide through
the spread of contaminated blood
Regarding the social effects of the HIV/AIDS pandemic, there has been since
the 1980s a "profound
of sexuality ".[5]
Public perception

One of the best-known works on the history of HIV is 1987's book *And the
Band Played On *, by Randy
Shilts . Shilts contends that Ronald
Reagan 's administration dragged
its feet in dealing with the crisis due to
homophobia ,
while the gay community viewed early reports and public health measures with
corresponding distrust, thus allowing the disease to spread and hundreds of
thousands of people to needlessly die. This resulted in the formation of
ACT-UP, the AIDS Coalition to Unleash
by Larry Kramer .

This work popularized the
the disease was introduced by a gay flight
named Gaëtan Dugas ,
referred to as "Patient Zero ".
However, subsequent research has revealed that there were cases of AIDS much
earlier than initially known. HIV-infected blood samples have been found
from as early as 1959 in Africa *(see HIV  main
entry)*, and HIV has been shown to have caused the death of a sexually
active St. Louis boy in

Shilts also details the fact that despite recommendations from the Centers
for Disease Control, the Red Cross  and
other non-profit blood banking organizations refused to ban bisexual and gay
men from donating blood in an effort to keep the blood bank industry from
suffering shortages
, particularly in cities having large homosexual
communities; the same cities where AIDS was first discovered in. As a
result, tens of thousands of hemophiliacs and
transfusion  recipients
were infected and died.

It has been theorized that a series of
against hepatitis  that were
performed in the gay community of San
Francisco  were
tainted with HIV. Although there was a high correlation between recipients
of that vaccination  and initial
cases of AIDS, this theory has never been proven. HIV, hepatitis
B ,
and hepatitis C  are bloodborne
diseases with very similar modes of
transmission[1] ,
and those at risk for one are at risk for the others.

Activists and critics of current AIDS policies allege that another
preventable impediment to the attack on the disease was the academic
elitism  of
"celebrity" scientists. Robert
Gallo ,
an American scientist who was one of many to attempt to figure out if there
was some kind of new virus  in the
people who were affected by the disease, became embroiled in a legal battle
with French scientist Luc
Montagnier .
Gallo, too, appeared hung up on the possible connection between the virus
causing AIDS and HTLV , a
retrovirus  that
he had worked with previously. Critics claim that because some scientists
(and biological research companies) wanted glory and fame (and lucrative
patent rights), research progress was delayed and more people needlessly
died. Eventually, after meeting, the French scientists and Gallo agreed to
"share" the discovery of HIV.
Publicity campaigns were started in attempts to counter the often vitriolic
and homophobic perception of AIDS as a "gay plague." In particular this
included the Ryan White  case, red
ribbon campaigns, celebrity dinners, the 1993 film version of *And the Band
Played On*, sex education programs in schools, and television
advertisements. Announcements by various celebrities that they had
contracted HIV (including actor Rock
Hudson ,
basketball star Magic Johnson ,
tennis player Arthur Ashe  and
singer Freddie Mercury ) were
significant in making the general public aware of the dangers of the disease
to people of all sexual orientations.