Saturday, October 10, 2009

Stop Health Insurers From Getting Away With Murder -- Nataline's Law

If you're concerned about "death panels", they're already here!
 
 
 admin@consumerwatchdog.org writes:


 

It's unconscionable. In America you can sue a health insurance executive for giving you the finger, but not for denying your daughter a life saving liver transplant. Ask your Senator today to change this legal loophole.

Today's Los Angeles Times reports that the family of Nataline Sarkisyan was prevented from going to court over her death because of a legal loophole that prevents wrongful death cases when health insurance is paid for by private sector employers. However, Nataline's family was allowed to sue for emotional distress because an insurance executive made an obscene gesture at the family during a rally at CIGNA's headquarters.

Consumer Watchdog has joined with Nataline's parents to call on Congress to close the legal loophole that bars her family and 132 million Americans from having their day in court. The lack of accountability allows health insurers to deny access to care without fear of reprisal when private employers pay for health coverage.

Please ask your US senators to introduce Nataline's Law and close the legal loophole that allows heath insurers to get away with murder.

Thanks for weighing in,

Jamie Court
President, Consumer Watchdog


Consumer Watchdog is a nonprofit, nonpartisan consumer protection organization. Your contributions are tax-deductible.







 
 
 

Medically Unexplained No More

October 9, 2009, Integrative Medicine

From Chronic Fatigue to Lyme: Medically Unexplained No More


Labeling sick patients psychiatric is medical abuse.



Over the past year,  some forces in the highest reaches of medicine have
made ever stronger efforts to burden the sick, diseased, and infected with
psychiatric labels, and thus, to invalidate them and consign them to lives
of numbing medication and endless untreated pain. Some pundits see this as
psychiatric abuse perpetuated by non-psychiatrists --since it is rarely the
psychiatrist, but rather, those in other specialities who step outside the
circle of their formal training to impose these crude diagnoses on the
medically ill.

to read the entire blog, visit:
http://www.psychologytoday.com/blog/emerging-diseases/200910/chronic-fatigue-lyme-medically-unexplained-no-more
* * *

TRUE! 
 
One of my particular hobbyhorses is that we need legislation (since mere ethics ain't doing it!) that a psych diagnosis can only be placed in a patient's records by a licensed psych.  I have amateur diagnoses of depression, anxiety, and a couple of other things from doctors who flatly refused to accept the concurrent psych eval giving me a clean bill of mental health, because it was EASIER for the doctor to put a psych diagnosis in the chart than to figure out what was really wrong.



Cheney's thoughts

Mac Angel has been a busy little beaver scouring the web for information on the new development!

Dr. Cheney's Research page has posted some of his comments
in a number of posts commenting on the current issues we have been discussing.

http://www.cheneyresearch.com/category/subscribers/new-thinking

 

Request from Mac Angel

Here's our latest Tweet that I am having the world
bombard you know who with after this latest set of News..
a TV program would be PERFECT very soon, don't ya think?

TO: @DrOz Please listen to the Researchers about NEW Retrovirus
and #MECFS & Pls Help http://bit.ly/1tdvnw RT
 
Those of you who Twitter, please RT it for us!
  





Audio media interviews about new research

Various articles-
http://www.npr.org/search/index.php?searchinput=xmrv


(links to audio embedded on pages)
'All Things Considered' with Dr. Mikovits and Annette Whittemore - length: 03:37
http://www.npr.org/templates/story/story.php?storyId=113613955

'Morning Edition' with Dr. Peterson(includes transcript of interview)
- length: 04:34
http://www.npr.org/templates/story/story.php?storyId=113650222
 





 

News story/video about new research

Thanks to Mac Angel for making the phone calls to get this video on the website!
 
Contains interview with Dr. Mikovits
 
 






Friday, October 9, 2009

Comment on Reeves' Attempt to Downplay Research Findings

Another Bill Reeves quote:

http://www.latimes.com/news/nationworld/nation/la-sci-fatigue9-2009oct09,0,3
368993.story

-------

"It is almost unheard of to find an association of this magnitude in any
study of an infectious agent and a well-defined disease, much less an
[ill-defined] illness like chronic fatigue syndrome," he said in an e-mail.
It is extremely difficult to prove causation with a ubiquitous virus like
XMRV, and it "is even more difficult in the case of CFS, which represents a
clinically and epidemiologically complex illness," he said.

-------

This quote is similar to the last quote so the same points apply except that
he is now saying that XMRV is a "ubiquitous virus".

Some viruses could be said to be "ubiquitous" e.g. most of the adult
population will have some sort of antibodies to EBV.

However, the XMRV virus was only identified in 8 of 218 (3.7%) healthy
controls (compared to 68 of 101 patients (67%) of the patients).

The researchers also did some extra experiments, summarised in plain English
here:
-----
http://www.nhs.uk/news/2009/10October/Pages/Does-a-virus-cause-ME.aspx

"Testing the white blood cells from thirty CFS patients showed that 63% (19
people) of the samples tested showed viral proteins. Tests on samples from
five healthy controls did not show any viral proteins.

"Overall, samples from people with CFS were 54 times as likely to contain
viral sequences as samples from healthy controls.

"The researchers found that XMRV found in the white blood cells of CFS
patients could be transmitted to prostate cancer cells when grown together
in the laboratory. In 10 out of 12 people with CFS (83%), fluid taken from
their blood samples could also infect the prostate cancer cells in the
laboratory. Similar results were found when uninfected white blood cells
were exposed to this fluid. Fluid from the blood samples of twelve healthy
controls did not infect the prostate cancer cells.

"The researchers found that half (nine out of 18) of CFS patients carrying
XMRV DNA had antibodies against a similar virus, while none of the seven
healthy controls tested showed an antibody response. This suggested that
half of the CFS patients had had an immune response to the XMRV."

-----

To summarise, these experiments (admittedly using smaller sample sizes)
again don't show XMRV to be ubiquitous like Bill Reeves claims.

Tom Kindlon
===============================================================
Don't support the Reeves/empirical definition/criteria for CFS?
Sign the petition at: http://CFSdefinitionpetition.notlong.com
===============================================================



Sometimes, Dreams DO Come True

Like many CFS activists, my mantra has been that I look forward to the day that Modern Medical Science puts me out of business.  I like doing CFS activism, but not as much as I loved the career I had to abandon when my health got worse.  I'd like nothing more than to stop doing this and go back to doing that.  With yesterday's announcement, I'm a few steps closer to doing just that.
 
Throughout my 22-year nightmare of living with this Damned Disease, I have clung to the dream that someday, someone would take us seriously, do the right research in the right way, and find what has always been tantalizingly close and frustratingly just out of reach. 
 
Patients have always been sure that there was a virus behind their ailments -- my problems started with what appeared to be a severe case of stomach flu -- and I have bemoaned the unenlightened doctors who've tried to erase that flu-like illness and diagnose depression or anxiety or some other psychological cause, despite the objective symptoms like fever and swollen glands that proved to me that they were wrong.
 
Next time I'm in Reno, I'm inviting the Whittemores for a steak dinner with a bottle of Dom Perignon to celebrate this finding and thank them for their willingness to put their money behind the belief that there's a findable physical cause for their daughter's symptoms.  I don't care if the expense requires me to eat peanut butter sandwiches for a year; it'll be worth it.
 
But, if they can find a medication that helps, I can go back to doing what I do best, which pays well, and I wouldn't bat an eye at spending that kind of money to treat them to dinner and champagne.
 
 
 
 







Thanks to Jan

>>>>> Help ME Circle <<<<
  >>>> 9 October 2009 <<<<
  Editorship : j.van.roijen@chello.nl
  mail scanned by Comodo I. Security
  ~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~

  THE WALL STREET JOURNAL

  Cancer-Causing Virus
  Linked to Chronic Fatigue

  By AMY DOCKSER MARCUS

  Researchers have linked an infectious virus known to
  cause cancer in animals to chronic-fatigue syndrome,
  a major discovery for sufferers of the condition and
  one that concerned scientists for its potential
  public-health implications.

  An estimated 17 million people world-wide suffer
  from chronic-fatigue syndrome, and the Centers for
  Disease Control and Prevention puts the U.S. figure
  at between one million and four million.

  CFS is characterized by debilitating fatigue and
  chronic pain, but there are no specific treatments,
  and the diagnosis is often made by ruling out other
  diseases.

  Thus there is disagreement in the medical
  community as to whether CFS is a distinct disease.
  A study showing a strong viral association with CFS
  could change that equation.

  But the significance of the finding, published
  Thursday in Science, extends far beyond the
  community of people living with CFS.

  Researchers are just as concerned about the finding
  that nearly 4% of healthy people used as controls in
  the study were also infected with the virus, called
  XMRV.

  If larger studies confirm these numbers, it could
  mean that as many as 10 million people in the U.S.
  and hundreds of millions of people around the world
  are infected with a virus that is already strongly
  associated with at least two diseases.

  The study was done by researchers at the
  Whittemore Peterson Institute for Neuro-Immune
  Disease in Reno, Nev., the National Cancer Institute
  and the Cleveland Clinic.

  In September, researchers at the University of Utah
  and Columbia University Medical Center found XMRV
  in 27% of the prostate-cancer samples they
  examined.

  That study also showed that 6% of the benign
  prostate samples had XMRV. The chronic-fatigue
  study is the first to find live XMRV virus in humans.

  Neither study conclusively shows that XMRV causes
  chronic-fatigue syndrome or prostate cancer. But the
  National Cancer Institute was sufficiently concerned
  to convene a closed-door workshop in July to discuss
  the public-health implications of XMRV infection.

  "NCI is responding like it
  did in the early days of HIV,"

  says Stuart Le Grice, head of the Center of
  Excellence in HIV/AIDS and cancer virology at NCI
  and one of the organizers of the July workshop.

  Like HIV, XMRV is a retrovirus, meaning once
  someone is infected, the virus permanently remains
  in the body; either a person's immune system keeps
  it under control or drugs are needed to treat it.

  The virus creates an underlying immune deficiency,
  which might make people vulnerable to a range of
  diseases, said Judy Mikovits of the Whittemore
  Peterson Institute and one of the lead authors on
  the paper.

  So far, XMRV, known fully as xenotropic murine
  leukemia virus-related virus, doesn't appear to
  replicate as quickly as HIV does. Scientists also don't
  know how XMRV is transmitted, but the infection was
  found in patients' blood samples, raising the
  possibility that it could be transmitted through blood
  or bodily fluids.

  Dr. Le Grice of the NCI said the highest priority now
  was to quickly develop a validated blood test or
  other assay that could be used in doctors' offices to
  determine who has XMRV.

  At the workshop, participants also raised the issue of
  protecting the nation's blood supply. Dr. Le Grice
  said there isn't enough evidence yet to suggest that
  people with XMRV shouldn't be blood donors but that
  determining how XMRV is transmitted was a critical
  issue.

  "A large effort is under way to answer all these
  questions," he said. "I do not want this to be
  cause for panic."

  Although Thursday's scientific paper doesn't
  demonstrate conclusively that XMRV is a cause of
  CFS, additional unpublished data make it a very
  strong possibility.

  Dr. Mikovits said that using additional tests, the
  scientists determined that more than 95% of the
  patients in the study are either infected with live
  virus or are making antibodies that show their
  immune systems mounted an attack against XMRV
  and now had the virus under control.

  "Just like you cannot have AIDS without
  HIV, I believe you won't be able to find a
  case of chronic-fatigue syndrome without
  XMRV,"

  Dr. Mikovits said.

  At the July workshop, Dr. Mikovits also presented
  preliminary data showing that 20 patients of the 101
  in the study have lymphoma, a rare form of cancer.

  The link between XMRV and lymphoma is still being
  investigated, but it raised the possibility that XMRV
  may be associated with other cancers in addition to
  prostate cancer.

  NCI's Dr. Le Grice said studies will be launched to
  determine whether XMRV is associated with other
  diseases. At the Whittemore Peterson Institute, Dr.
  Mikovits said they also found XMRV in people with
  autism, atypical multiple sclerosis and fibromyalgia.

  The Science study was based on blood samples from
  a national repository at the Whittemore Peterson
  Institute collected from doctors in cities where
  outbreaks of chronic-fatigue syndrome occurred
  during the 1980s and '90s. One of the key questions
  that the NCI's Dr. Le Grice says must now be
  answered is whether XMRV shows up in large
  numbers of CFS patients all over the country.

  Robert Silverman, a professor at the Cleveland Clinic
  Lerner Research Institute who is one of the
  co-authors of the study and one of the discoverers of
  the XMRV virus, said he believes the virus began in
  mice and then spread to humans, and that:

  "in most cases, people's immune systems are
  probably able to control the virus."

  Researchers are already starting to test antiretroviral
  therapies developed for AIDS to see if they are
  effective against XMRV.

  The work on XMRV in chronic-fatigue patients initially
  was funded by Annette and Harvey Whittemore and
  the University of Nevada, Reno.

  The Whittemores set up the institute in 2006 after
  watching their daughter Andrea suffer from
  chronic-fatigue syndrome for most of her life. They
  spent millions of their own money to pay for
  administrative services, office space, lab equipment
  and research operations.

  They were frustrated by the lack of government
  funding for scientific research into the disease.

  At their home in Reno, Andrea Whittemore-Goad, 31
  years old, used oxygen before speaking about the
  devastating toll CFS has taken on her.

  Ms. Whittemore-Goad says she was a regular school
  girl, playing sports and involved in school activities,
  until the age of 10, when she became ill with a
  monolike virus that she couldn't shake.

  She said doctors first told her parents that the
  illness was psychological, that she had school phobia
  and was under stress from her parents. "We kept
  searching for an answer," says Ms. Whittemore-
  Goad, who says lymph nodes in her groin were so
  painful that her brothers and sisters used to have to
  carry her upstairs. She was diagnosed at age 12 with
  chronic-fatigue syndrome.

  Over the years, doctors have treated her symptoms,
  like intense headaches and severe pain, but the
  illness persists. She has had her gallbladder, spleen,
  and appendix removed because they became
  infected. She tried an experimental drug that she
  says gave her relief for years, but she then started
  experiencing side effects and had to stop taking it.
  Recently the illness has become worse; she began
  suffering seizures and can no longer drive.

  Sitting on the couch next to her husband, whom she
  married six months ago, Ms. Whittemore-Goad says
  the news that she is infected with XMRV "made
  everything that has happened to me make sense."

  Brian Goad, her husband, said he felt relieved
  knowing "now we can find a way to treat and
  hopefully cure it."

  For both of them, the discovery of the virus is
  life-changing. There are more than 10 families in the
  group where family members also tested positive for
  XMRV. Members of the Whittemore family are now
  being tested.

  Write to Amy Dockser Marcus at
  amy.marcus@wsj.com

  Printed in The Wall Street Journal, page A4

  Copyright 2009 Dow Jones & Company, Inc.

  ````````````

  http://bit.ly/V3vAB

  The Washington Post

  Virus Associated With
  Chronic Fatigue Syndrome

  Scientists have found evidence that a virus may play
  a role in chronic fatigue syndrome.
  Vincent C. Lombardi of the Whittemore Peterson
  Institute in Reno, Nev., and scientists elsewhere
  studied 101 patients with chronic fatigue syndrome,
  a baffling, debilitating and controversial condition
  that affects an estimated 17 million people
  worldwide.

  They discovered that 68 of the patients -- 67 percent
  -- had a virus in their blood known as the xenotropic
  murine leukemia virus-related virus or XMRV.

  Only eight of 218 similar subjects who did not have
  chronic fatigue syndrome -- 3.7 percent -- had the
  virus in their blood, the researchers report in a paper
  published online Thursday by the journal Science.

  Further studies showed that the virus is indeed
  infectious, and can "provoke" the immune system to
  respond.

  The researchers cautioned that the findings far from
  prove that the virus causes chronic fatigue. It may
  be just part of the picture. But they suggest that the
  virus may at least contribute to the development of
  the disorder.

  This isn't the first time a virus has been associated
  with the condition. Previous research has suggested
  that some herpes viruses and other viruses may also
  play a role.

  In an article accompanying the research, John Coffin
  of Tufts University in Boston and Jonathan Stoye of
  the National Institute for Medical Research in London
  agreed.

  They noted that there are many unanswered
  questions about the virus, including how it is
  transmitted.

  But if the findings are representative of what's going
  on in the general public, perhaps 10 million
  Americans and hundreds of millions of people
  worldwide might be infected with the virus, which
  could turn out to be playing a role in a variety of
  diseases. The virus previously was found in some
  patients with prostate cancer.

  By Rob Stein

  October 8, 2009;

  © 2009 The Washington Post Company

  ``````

  http://bit.ly/aQcub

  AFP

  Scientists link chronic
  fatigue ailment to retrovirus

  WASHINGTON - Chronic Fatigue Syndrome (CFS), a
  mysterious and debilitating exhaustion that is not
  relieved by sleep, appears to be linked to a
  retrovirus, researchers announced Thursday in a
  breakthrough study.

  In the latest issue of Science, researchers said their
  findings could lead to a treatment for an ailment
  affecting millions of Americans and that in some
  cases render them unable to work or engage in even
  moderately robust activities.

  The study was hailed as a breakthrough in
  understanding the perplexing syndrome for which
  there is no known treatment.

  "We now have evidence that a retrovirus named
  XMRV is frequently present in the blood of
  patients with CFS,"

  said Judy Mikovits, director of research for the
  Whittemore Peterson Institute (WPI) located at the
  University of Nevada, Reno, one of the organizations
  which led the research.

  "This discovery could be a major step in the
  discovery of vital treatment options for millions of
  patients,"

  Mikovits said.

  Other health agencies which contributed to the study
  were the National Cancer Institute (NCI), the
  National Institutes of Health, and the Cleveland
  Clinic.

  Researchers cautioned that while there appears to be
  a relationship between the retrovirus and Chronic
  Fatigue Syndrome, they have not proven that the
  illness is caused by XMRV.

  They noted that earlier research has linked the
  retrovirus with prostate cancer as well.

  "The discovery of XMRV in two major diseases,
  prostate cancer and now chronic fatigue
  syndrome, is very exciting,"

  said Robert Silverman, a professor in the Department
  of Cancer Biology at the Cleveland Clinic Lerner
  Research Institute, and co-author of the CFS study.

  "If cause-and-effect is established, there would
  be a new opportunity for prevention and
  treatment of these diseases,"

  he said.

  In the study released Thursday, WPI scientists
  identified XMRV in the blood of 68 of 101 (67
  percent) CFS patients.

  By contrast, the retrovirus was found in the blood of
  only eight of 218 healthy people (3.7 percent).

  "These compelling data allow the development of a
  hypothesis concerning a cause of this complex and
  misunderstood disease, since retroviruses are a
  known cause of neurodegenerative diseases and
  cancer in man,"

  said Francis Ruscetti, of the Laboratory of
  Experimental Immunology at NCI.

  Retroviruses like XMRV have also been shown to
  activate a number of other latent viruses. This could
  explain why so many different viruses, such as
  Epstein-Barr virus have been associated with CFS.

  "The scientific evidence that a retrovirus is
  implicated in CFS opens a new world of
  possibilities for so many people,"

  said Annette Whittemore, founder and president of
  WPI and mother of a CFS patient.

  "Scientists can now begin the important work of
  translating this discovery into medical care for
  individuals with XMRV related diseases."

  © 2009 AFP.

  ````

  http://bit.ly/VPl6W

  ajc

  Retrovirus May Be at Root
  of Chronic Fatigue Syndrome

  THURSDAY, Oct. 8 (HealthDay News) -- About
  two-thirds of patients with chronic fatigue syndrome
  sampled in a recent study were infected with a
  retrovirus called XMRV.

  The finding, albeit preliminary, has raised hopes that
  there might be a concrete cause for the mysterious
  malady and thus, down the line, treatments for the
  disease.

  "This study does not prove that XMRV is the cause
  of chronic fatigue syndrome, however it does
  suggest it is a viable candidate for a cause,"

  said Robert H. Silverman, co-author of a report
  appearing online Oct. 8 in Science.

  "But if it can be proven that the virus causes the
  disease, that would be a breakthrough in
  diagnosing, combating and preventing the
  disease,"

  added Silverman, a professor of cancer biology at the
  Cleveland Clinic Lerner Research Institute. "There
  could be an antiretroviral drug that could prevent this
  virus from replicating."

  Another expert was similarly hopeful.

  "This article could give a spark of hope, one, that
  chronic fatigue syndrome is caused by something,
  and two, if that bears out, maybe we could do
  something about it,"

  said Dr. Tamara Kuittinen, an emergency physician
  with Lenox Hill Hospital in New York City.

  Chronic fatigue syndrome was first recognized in the
  late 1980s and initially dubbed the "yuppie flu,"
  resulting in an enduring credibility crisis.

  Some segments of the medical community do not
  believe it is a discrete illness because there is no
  known cause, and diagnosis can only be made
  through excluding other conditions, such as
  depression.

  "There's no test, no clear etiology, the symptoms
  are vague, there's no treatment and no cure,"
  said Kuittinen. "It's very frustrating."

  Possible explanations for the disease have been
  far-reaching, ranging from different viruses, including
  Epstein-Barr, enteroviruses and herpes, to childhood
  trauma.

  The illness affects an estimated 1 percent of people
  worldwide and, as its name implies, involves
  crippling fatigue as well as aching joints, headaches
  and various other symptoms.

  Recently, XMRV was detected in prostate cancer
  patients and in prostate tumor biopsies. Like other
  retroviruses, it can activate latent viruses in the
  body, such as Epstein-Barr, which has been linked to
  chronic fatigue syndrome.

  For this study, researchers analyzed 101 blood
  samples taken from patients with chronic fatigue
  syndrome and found the virus in 68 of the samples,
  as compared with only eight samples in 218 healthy
  patients (67 percent versus 3.7 percent).

  Although 3.7 percent seems a small proportion, the
  authors do note that this could mean millions of
  people are infected with a virus whose effects are as
  yet unknown.

  Retroviruses, a group that includes both
  XMRV and HIV, have genomes made of
  RNA instead of DNA.

  "When the virus infects cells, the RNA gets copied
  into the DNA, then the DNA inserts itself or
  integrates into the host DNA,"

  explained Silverman.

  "One of the many problems with infections with
  retroviruses is that it's very difficult to actually
  cure the patient because the virus DNA becomes
  part of the infected person's DNA. Patients need
  to continually take drugs to keep it from
  replicating."

  XMRV is simpler than HIV, though, Silverman added,
  which is a good thing.

  "It's a kind of stripped down version of a
  retrovirus. It has just the genes required for
  infection and replication. We could probably stop it
  with an antiretroviral drug."

  There's also the possibility that a vaccine would
  prevent people from being infected in the first place.

  But, stressed Silverman, "there are lots of
  qualifiers because it hasn't actually been proven
  that it causes disease, although the evidence looks
  pretty intriguing. This is an area that needs more
  research."

  More information

  The U.S. Centers for Disease Control and Prevention
  has more on chronic fatigue syndrome.

  Copyright © 2009 ScoutNews,

  ````````

  Much more links can be found at:

  http://bit.ly/13nShx

  ~jan van roijen




THE Press Release

U.S. Department of Health and Human Services
  NATIONAL INSTITUTES OF HEALTH NIH News
  National Cancer Institute (NCI) http://www.nci.nih.gov/ 
  Embargoed for Release: Thursday, October 8, 2009, 2 p.m. EDT

  CONTACTS:
  NCI Office of Media Relations, 301-496-6641, e-mail: ncipressofficers@mail.nih.gov  

  Whittemore Peterson Institute, Frankie Vigil, 775-336-4555, e-mail: Frankie.vigil@rrpartners.com

  Cleveland Clinic Corp. Communications, Megan F. Pruce, 216-445-7452, e-mail: prucem@ccf.org  

  CONSORTIUM OF RESEARCHERS DISCOVER RETROVIRAL LINK TO CHRONIC FATIGUE SYNDROME

  Scientists have discovered a potential retroviral link to chronic fatigue syndrome, known as CFS, a debilitating disease that affects millions of people in the United States. Researchers from the Whittemore Peterson Institute (WPI), located at the University of Nevada, Reno, the National Cancer Institute (NCI), part of the National Institutes of Health, and the Cleveland Clinic, report this finding online Oct. 8, 2009, issue of Science.

  "We now have evidence that a retrovirus named XMRV is frequently present in the blood of patients with CFS. This discovery could be a major step in the discovery of vital treatment options for millions of patients," said Judy Mikovits, Ph.D., director of research for WPI and leader of the team that discovered this association. Researchers cautioned however, that this finding shows there is an association between XMRV and CFS but does not prove that XMRV causes CFS.

  The scientists provide a new hypothesis for a retrovirus link with CFS. The virus, XMRV, was first identified by Robert H. Silverman, Ph.D., professor in the Department of Cancer Biology at the Cleveland Clinic Lerner Research Institute, in men who had a specific immune system defect that reduced their ability to fight viral infections.

  "The discovery of XMRV in two major diseases, prostate cancer and now chronic fatigue syndrome, is very exciting. If cause-and-effect is established, there would be a new opportunity for prevention and treatment of these diseases," said Silverman, a co-author on the CFS paper.

  Commonality of an immune system defect in patients with CFS and prostate cancer led researchers to look for the virus in their blood samples. In this study, WPI scientists identified XMRV in the blood of 68 of 101 (67 percent) CFS patients. In contrast, they found that eight of 218 healthy people (3.7 percent) contained XMRV DNA. The research team not only found that blood cells contained XMRV but also expressed XMRV proteins at high levels and produced infectious viral particles. A clinically validated test to detect XMRV antibodies in patients' plasma is currently under development.

  These results were also supported by the observation of retrovirus particles in patient samples when examined using transmission electron microscopy. The data demonstrate the first direct isolation of infectious XMRV from humans.

  "These compelling data allow the development of a hypothesis concerning a cause of this complex and misunderstood disease, since retroviruses are a known cause of neurodegenerative diseases and cancer in man," said Francis Ruscetti, Ph.D., Laboratory of Experimental Immunology, NCI.

  Retroviruses like XMRV have also been shown to activate a number of other latent viruses. This could explain why so many different viruses, such as Epstein-Barr virus, which was causally linked to Burkitt's and other lymphomas in the 1970s, have been associated with CFS. It is important to note that retroviruses, like XMRV, are not airborne.

  "The scientific evidence that a retrovirus is implicated in CFS opens a new world of possibilities for so many people," said Annette Whittemore, founder and president of WPI and mother of a CFS patient. "Scientists can now begin the important work of translating this discovery into medical care for individuals with XMRV related diseases."

  Dan Peterson, M.D., medical director of WPI added, "Patients with CFS deal with a myriad of health issues as their quality of life declines. I'm excited about the possibility of providing patients, who are positive for XMRV, a definitive diagnosis, and hopefully very soon, a range of effective treatments options."

  The Whittemore Peterson Institute for Neuro Immune Disease exists to bring discovery, knowledge, and effective treatments to patients with illnesses that are caused by acquired dysregulation of both the immune system and the nervous system, often resulting in lifelong disease and disability. www.wpinstitute.org

  The Lerner Research Institute is home to Cleveland Clinic's laboratory, translational and clinical research. Its mission: to promote human health by investigating in the laboratory and the clinic the causes of disease and discovering novel approaches to prevention and treatments; to train the next generation of biomedical researchers; and to foster productive collaborations with those providing clinical care. More than 1,200 people in 11 departments work in research programs focusing on cardiovascular, cancer, neurologic, musculoskeletal, allergic and immunologic, eye, metabolic, and infectious disease. The Institute also is an integral part of the Cleveland Clinic Lerner College of Medicine of Case Western Reserve University.

  The National Cancer Institute (NCI) leads the National Cancer Program and the NIH effort to dramatically reduce the burden of cancer and improve the lives of cancer patients and their families, through research into prevention and cancer biology, the development of new interventions, and the training and mentoring of new researchers. For more information about cancer, please visit the NCI Web site at http://www.cancer.gov  or call NCI's Cancer Information Service at 1-800-4-CANCER (1-800-422-6237).

  The National Institutes of Health (NIH) -- The Nation's Medical Research Agency -- includes 27 Institutes and Centers and is a component of the U.S. Department of Health and Human Services. It is the primary federal agency for conducting and supporting basic, clinical and translational medical research, and it investigates the causes, treatments, and cures for both common and rare diseases. For more information about NIH and its programs, visit www.nih.gov.
  -------------------------------
  REFERENCE: Lombardi VC, Ruscetti FW, Gupta JD, Pfost MA, Hagen KS, Peterson DL, Ruscetti SK, Bagni RK, Petrow-Sadowski C, Gold B, Dean M, Silverman RH, and Mikovits JA. Detection of Infectious Retrovirus, XMRV, in Blood Cells of Patients with Chronic Fatigue Syndrome. Online October 8, 2009. Science.

  ##





More on XMRV

Prof. Kenny De Meirleir:

  Hi Friends, here is the long awaited paper!

  Lombardi, V.C. et al. 2009. Detection of an
  infectious retrovirus, XMRV, in blood cells of
  patients with chronic fatigue syndrome. Science,
  online October 8. - doi:10.1126/science.1179052

  http://bit.ly/BXUnc

  ````

  ~jan van roijen: see below

  

  Retrovirus might be culprit in chronic fatigue syndrome

  People with the condition are much more
  likely than others to harbor a little-known
  pathogen

  By Nathan Seppa

  The long, fruitless search for the cause of chronic
  fatigue syndrome has taken a curious turn. Scientists
  report online October 8 in Science that an obscure
  retrovirus shows up in two-thirds of people
  diagnosed with the condition. The researchers also
  show the retrovirus can infect human immune cells.

  These findings don't establish that the pathogen,
  called gammaretrovirus XMRV, causes chronic
  fatigue, cautions study coauthor Robert Silverman, a
  molecular biologist at the Lerner Research Institute
  of the Cleveland Clinic.

  "Nevertheless, it's exciting because it is a viable
  candidate for a cause."

  Roughly 1 to 4 million people in the United States
  have chronic fatigue syndrome, according to the
  Centers for Disease Control and Prevention.

  The condition shows up as mental and physical
  exhaustion, memory lapses, muscle pain, insomnia,
  digestive distress and other health problems.
  Doctors often diagnose chronic fatigue only after
  ruling out everything else. Its cause is unknown.

  In the new study, the researchers tested blood from
  101 people with chronic fatigue syndrome and found
  that 68 were infected with XMRV. When the
  scientists analyzed blood from 218 healthy people as
  a control group, only eight had the virus - 4 percent.
  The study participants lived in various parts of the
  United States.

  "This is a very striking association - two-thirds of
  the patients," says John Coffin, a virologist at Tufts
  University in Boston who wasn't involved in the
  study. A 4 percent infection rate in the healthy
  controls is also substantial, he notes, because it
  suggests that 10 million people in the United States
  are harboring this hidden infection.

  If the retrovirus indeed is found to cause chronic
  fatigue, the infected 4 percent in the control group
  might represent people who have been infected for a
  short time and haven't developed symptoms, or who
  have kept the virus in check, says study coauthor
  Judy Mikovits, a cell biologist at Whittemore
  Peterson Institute in Reno and at the University of
  Nevada, Reno.

  Based on its genetic makeup, XMRV arose from a
  mouse retrovirus that somehow jumped to humans.

  Mikovits asserts that the retroviral infection might
  result in an immune deficiency that leads to chronic
  fatigue symptoms.

  Retroviruses are known to attack the immune
  system, with HIV being the best-known example.
In
  this study, researchers showed that XMRV infected
  immune cells in the blood.

  "This may end the controversy as to whether there is
  an underlying infection in some cases of chronic
  fatigue syndrome, but is unlikely to explain all
  cases," says internist Dedra Buchwald of the
  University of Washington in Seattle.

  Retroviruses can awaken latent viruses already in
  cells. It is possible that chronic fatigue symptoms
  are caused not by XMRV but by other viruses that it
  activates, she says.

  Meanwhile, retroviruses harbor pro-growth genes,
  and some cause the blood cancer leukemia in
  animals and people.

  XMRV - or xenotropic murine-leukemia-virus-related
  virus - itself shows up in some men with prostate
  cancer, particularly those with aggressive
  malignancies, another research team reported last
  month in the Proceedings of the National Academy of
  Sciences.

  Gammaretroviruses, a subset of retroviruses, also
  cause disease in gibbons, cats and koalas, Silverman
  says. "XMRV is the first member of this genus of
  retrovirus to be found in humans," he notes.

  In the new study, the researchers also found hints
  that the retrovirus is transmitted by blood, as are
  some other viruses, including HIV.

  But it's probably not spreading very fast, because
  people with chronic fatigue "are too sick to do
  anything," Mikovits says.

  Further research is under way to fine-tune testing for
  the retrovirus, and more blood analyses are planned
  that will clarify its occurrence rate in the general
  population.

  Mikovits and her colleagues are investigating
  already-approved antiretroviral drugs to see if these
  will benefit people who have chronic fatigue.

  ~~~~~~







Epidemic of Mental Illness in Doctors

Epidemic of Mental Illness in Doctors
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
The emergence of Medically Unexplained Illnesses has revealed an epidemic of behavioral problems and personality disorders in doctors.
 
Patients expressing unfamiliar complaints to their physicians often induce the "It's All In Your Head" (AIYH) or the "That's Impossible" response in doctors suffering from these behavioral problems and personality disorders.
 
Physicians fixated upon the metaphysical belief system of "If we don't know about it, then it doesn't exist" are suffering from a mental defect or psychological condition known as "Doctors with Unexplained Medical Beliefs": D.U.M.B.
 
DUMB doctors are comprised of subgroups characterized by opportunists who are feigning to be DUMB for monetary gain: "Medicalingering" or of those doctors who are not in possession of sufficient information to render an intelligent diagnosis: "Factlessitious Disorder".
 
Physicians who are suffering from DUMB disorder place an inordinate emphasis on theories of psychological causality for virtually any unfamiliar complaints that are presented, and manifest a distinctive lack of observational skills when confronted with obvious abnormalities.
 
Doctors who exhibit obsessive preoccupation with psychosocial etiologies should be regarded with extreme caution:
 
"Psychosomatization Fixation Disorder" or "Psychologizing" is a distinctive characteristic of mental illness, and should be considered a warning sign that the individual is not rational and may in fact be dangerously DUMB.
 
DUMB disorder may be concomitant but should not be confused with Signs of Thoroughly Unmistakable Physician Intelligence Deficiency: "S.T.U.P.I.D.", as a STUPID physician is uniformly incompetent, while a DUMB doctor is only mentally paralyzed into "psychologizing" by unfamiliar symptoms and complaints.
 
An immediate investigation is warranted to assess the prevalence of DUMB and STUPID doctors, and to determine the detrimental impact that physicians suffering from these mental defects are having on their patients and the health care system.
-Erik Johnson
Incline Village CFS survivor
 
may be reposted
 
- -Erik Johnson






Hillary Johnson's take on the WPI findings

I have a post on my blog, it's called, "Our Vietnam War ended today." 

http://www.oslersweb.com/blog.htm?post=638469


Hillary
 






News from One Click

Breakthrough Science For M.E. Millions After Decades Of Chronic Abuse And Neglect

The symptoms are disabling tiredness, irritable bowels, intense headaches, depression and cognitive dysfunction. Yet for years many doctors argued that Chronic Fatigue Syndrome didn't exist. They refused even to dignify it with the name previous sufferers preferred – Myalgic encephalomyelitis. ME, they said, was just "me" writ large and dismissed it as yuppy flu. In the event the flu has lasted longer than the yuppies did. Some four million people suffer from it in the United States alone. Now two potential avenues for cures come along at once. Researchers in Utah claim to have discovered the gene involved. Another team in Nevada have found compelling evidence that a retrovirus, like HIV, might well be implicated. Scientists could be on the brink of a breakthrough. We must hope that they are. That would – at least – go some way to compensating for the shameful manner in which sufferers were treated for so long by the medical profession.
Independent Leader & Steve Connor, Science Editor - The Independent
Related Links:
*
The New Journalism - Challenging The Status Quo, page 3, The Case Of Ean Proctor
Professor Simon Wessely in Witch Finder General action in the lives of ME/CFS labelled children
Jane Bryant, National Vaccine Information Center Conference Speech, United States of America
*
Most cases of chronic fatigue syndrome linked to virus
Richard Alleyne, Daily Telegraph
*
Virus Is Found in Many With Chronic Fatigue Syndrome
Denise Grady, New York Times
 




 

Thursday, October 8, 2009

More on the CFS retrovirus research

Thanks to Mac Angel for these links:
 
 
Thought you might like Today's Breaking NEWS Alert about CFS.

It's caused by a newly discovered Retro-virus " XMRV "

It is NOT "all in our head's"
Maybe we can get some Help & Respect NOW?

Read these articles  for info:

**********************************************
click "XMRV Research" and also "Q & A"
Click "In the News" for the PDF of the Release

***********************************************
from the Wall Street Journal:

Cancer-Causing Virus Linked to Chronic Fatigue 

http://online.wsj.com/article/SB125501227713473525.html?mod=WSJ_hpp_MIDDLENexttoWhatsNewsThird

************************************************
from Reuters:

Study isolates virus in chronic fatigue sufferers


************************************************
from NPR with audio link:

Virus Linked To Chronic Fatigue Syndrome







 

Landmark study published in Science magazine today

 

Landmark study published in Science magazine today

In today's issue of Science Express, researchers at the Whittemore-Peterson Institute (WPI), the Cleveland Clinic and the National Cancer Institute report that 67% of 101 chronic fatigue syndrome (CFS) patients tested positive for infection with xenobiotic murine retrovirus (XMRV), a gammaretrovirus associated with a subset of prostate cancer. Only 3.7% of 218 healthy subjects tested were positive for the virus. Read the joint press release issued today. An abstract of the article will be available later today at http://www.sciencemag.org/sciencexpress/recent.dtl. The full article text is available to Science subscribers, American Association for the Advancement of Science members; one-day access to the AAAS site can be purchased for $15.00.
 
These important results provide evidence of the association of at least a subset of CFS cases with retroviruses, a hypothesis formed in the mid-1980s and pursued by several independent research groups. XMRV was recently discovered in a subset of prostate cancer patients' tumor cells and the finding by Lombardi et al may be the first documentation of XMRV infection in women.
 
The authors raise questions about this discovery at the end of the article, including "Is XMRV infection a causal factor in the pathogenesis of CFS or a passenger virus in the immunosuppressed CFS patient population?" This question and others warrant additional investigation and the replication of this study's findings in other patient cohorts should be a priority for the field. There is currently no commercial test available for XMRV and studies of antiviral and antiretroviral treatments must be conducted to test their efficacy against XMRV infection.
 
The CFIDS Association of America congratulates Dr. Mikovits and her team at the Whittemore-Peterson Institute and their collaborators at the Cleveland Clinic and National Cancer Institute for this landmark discovery. The findings themselves and publication of them in a journal of the stature and circulation of Science is a highly significant contribution to the field. This study and the high-profile publication are important validation of the reality and seriousness of CFS and those who suffer and have been stigmatized too long.
 
 
Citation:
 
Detection of an infectious retrovirus, XMRV, in blood cells of patients with chronic fatigue syndrome. Lombardi VC, Ruscetti FW, Gupta JD, Pfost MA, Hagen KS, Peterson DL, Ruscetti SK, Bagni RK, Petrow-Sadowski C, Gold B, Dean M, Silverman RH, Mikovits JA. Science 8 October 2009. 1179052.
 
 

 






Monday, October 5, 2009

CFS Research using Second Life

Murdoch University is currently undertaking new research into how virtual
worlds on the Internet, such as Second Life can be used to help people with
ME/CFS, particularly in overcoming some of the isolation that is often
associated with these conditions, as well as providing a place where people
can meet others, and share information and support.

We are looking for volunteers who would be willing to participate in Canada
and Australia. This would involve two interviews either over the phone or
through Skype with one of our researchers, approximately six months apart,
as well as participating in a focus group discussion to be held in Second
Life in which other participants in the study from both Australia and Canada
would take part.

At the end of the study all participants will be able to maintain their free
Second Life account and continue to have access to all the online facilities
being constructed for this study on Murdoch University's Second Life Campus.

If you are interested in participating please contact Dr Mike Kent via email
at mike.kent@cultware.com or on 0412 442 808.


What are we trying to find out?

This research is looking at the potential for virtual worlds such as Second
Life to help ease the isolation that is often associated with conditions
such as ME/CFS. There is an existing ME/CFS support group in Second Life
that speaks very highly of the positive effect participation in Second Life
has had on their lives, and this study is looking at how these experiences
might to transferable to the broader ME/CFS community.

Who are we looking for?

We are looking for volunteers who currently have ME/CFS and are connected to
the Internet and who would be interested in participating in this study. You
would need to have a broadband connection of some sort and a computer
capable of running the Second Life Software (generally a computer that was
purchased in the last 3 or 4 years).

What would you be asked to do?

There would be two interviews that take place either over the phone or
through the Internet using Skype that would be arranged approximately six
months apart at your convenience as well as participation in a focus group
with other people in the study that would be conducted in Second Life.

What is Second Life?

Second Life is a virtual world accessed through the Internet. It creates a
3D virtual world, where people are able to virtually move around and
interact with the world and with each other. Murdoch University has
developed its own campus on Second Life, with a dedicated building for this
research.

Who is conducting this research?

This research is being conducted by Murdoch University through funding from
the Australia Research Council. The Chief Investigator in this project is Dr
Kirsty Best. Dr Best has been heavily involved in the ME/CFS support
community in her native Canada before moving to Australia and maintains
strong links with that organisation. Dr Mike Kent is the researcher with
responsibility for the Australian based division of this project.

I am currently running a research project in Canada and Australia that is
looking at the potential for the virtual world Second Life to help ease the
isolation frequently experienced by people with ME/CFS. I was wondering if
you would mind forwarding a request for volunteers in those two countries
through your site? We have constructed a resource centre in Second Life for
ME/CFS on Murdoch Universities virtual campus, that we are hoping will
continue as a resource once this study is completed. I have attached below a
suggested letter to be posted if that would be OK. Please feel free to
contact me if you would like any further information.

Your faithfully,

Mike

Dr Mike Kent
Critical Digital Hub
The Popular Culture Collective
www.popularculturecollective.com
 


Solve CFS

It's time! Solve CFS.

As promised, we're back!
 
Please join us at www.solvecfs.org for a brand new way to share information about CFS with family and friends.
 
Watch our video, "What Would You Do?" It describes CFS and the things that people living with CFS told us they would do tomorrow if they were completely well.
 
View our growing photo album of people who want to end the suffering caused by CFS. Print the "Solve CFS" sign, take your own photo and add it to the album.
 
Read the stories of Merritt, Robert, Tyler, Rachel, Beth, Will, Alan and Anna who reveal what it's like to live with CFS. These stories will build over the coming weeks, so return often for the next additions. Share your story with us.
 
Find new ways to get regular updates on Facebook, twitter and YouTube.
 
Support the essential research, policy and communication programs that only the CFIDS Association of America can lead. The October edition of CFIDSLink will be sent to you on Wednesday, with updates on all these vital activities.
 
Thank you for your interest and engagement in making CFS widely understood, diagnosable, curable and preventable. Together we will solve CFS.
 
Your friends at the CFIDS Association of America