Friday, March 26, 2010

'Inhibition of Xenotropic Murine Leukemia Virus-Related Virus by APOBEC3 Protein

'Inhibition of Xenotropic Murine Leukemia Virus-Related Virus by
APOBEC3 Proteins and Antiviral Drugs'
Paprotka T, Venkatachari NJ, Chaipan C, Burdick R,
Delviks-Frankenberry KA, Hu WS, Pathak VK.

HIV Drug Resistance Program, National Cancer Institute at Frederick,
Viral Mutation Section and Viral Recombination Section, Frederick, MD
21702, USA.

J Virol. 2010 Mar 24. [Epub ahead of print]

http://www.ncbi.nlm.nih.gov/pubmed/20335265


Xenotropic murine leukemia virus-related virus (XMRV), a
gammaretrovirus, has been isolated from human prostate cancer tissue
and from activated CD4(+) T cells and B cells of patients with chronic
fatigue syndrome, suggesting an association between XMRV infection and
these two diseases. Since APOBEC3G (A3G) and APOBEC3F (A3F), which are
potent inhibitors of the murine leukemia virus and Vif-deficient human
immunodeficiency virus type 1 (HIV-1), are expressed in human CD4(+) T
cells and B cells, we sought to determine how XMRV evades suppression
of replication by APOBEC3 proteins. We found that expression of A3G,
A3F, or murine A3 in virus producing cells resulted in their virion
incorporation, inhibition of XMRV replication, and G-to-A
hypermutation of the viral DNA with all three APOBEC3 proteins.
Quantitation of A3G and A3F mRNA indicated that compared to human
T-cell lines CEM and H9, prostate cell lines LNCaP, and DU145
exhibited 50% lower A3F mRNA levels, whereas A3G expression in 22Rv1,
LNCaP and DU145 cells was nearly undetectable. A low frequency of XMRV
proviral genomes in LNCaP and DU145 cells were hypermutated with
mutation patterns consistent with A3F activity. XMRV proviral genomes
were extensively hypermutated upon replication in A3G/A3F-positive T
cells (CEM and H9) but not in A3G/A3F-negative cells (CEM-SS). We also
observed that XMRV replication was susceptible to nucleoside reverse
transcriptase (RT) inhibitors AZT and tenofovir, and integrase
inhibitor, raltegravir. In summary, the establishment of XMRV
infection in patients may be dependent on infection of
A3G/A3F-deficient cells and that cells expressing low levels of
A3G/A3F, such as prostate cancer cells, may be ideal producers of
infectious XMRV. Furthermore, anti-HIV-1 drugs AZT, tenofovir, and
raltegravir may be useful for treatment of XMRV infection.
 




Website: living with severe ME

Announcing  the launch of  a new  ME-friendly web site , designed and
built by Greg Crowhurst , on the experience of living with Severe ME,
from a carer and sufferer perspective.

Please do visit : www.stonebird.co.uk

Greg Crowhurst
 

 

Thursday, March 25, 2010

Invest in ME: XMRV - Just the Beginning

 
 

www.disability.gov

www.disability.gov is a new Federal Government website with thousands of resources for those living with disabilities
 





Wednesday, March 24, 2010

Petition against Fluorescent Bulbs

WE NEED YOUR HELP!

A coalition of industrialists, environmentalists, and energy specialists is banding together to try to eliminate the incandescent light bulb.  There is legislation proposed in California, Canada, and Australia to sell only fluorescent light bulbs.  While this legislation helps the environment, it hurts people.

CLICK HERE TO SIGN THE PETITION! >> 

Nearly one-quarter of the world's population will suffer negative physical effects if this legislation is allowed to pass.  For this portion of the population, fluorescent light triggers headaches, migraines, stomachaches, fatigue, eye strain, anxiety, and irritability.  Fluorescent lights can also negatively impact the immune system, literally making people sick.  Energy conservation is an important goal that we should strive to achieve, but there are ways to conserve energy that do not hurt 25% of the population. Please don't let your government hurt the people you love.  Please sign the petition and send this information to others asking them to sign the petition. 

Please read the following information on the toxicity of fluorescent lighting.  It was a real eye opener to me; and once you read it, I am sure you will agree and will want to sign the petition immediately!  

Environmental Hazards

Fluorescent light bulbs have a toxic substance in them (mercury) and MUST BE RECYCLED IN A MOST RESPONSIBLE WAY. The lack of recycling will put this mercury into landfills where it will leach into drinking water sources and contaminate landfills.  Presently, there are no city collection services for toxic substances and each person must go to waste disposal sites, driving miles to safely dispose of them.  Casually throwing these bulbs away in the trash may cause untold mercury contamination in the future!  It is inevitable that some bulbs will break in the home, contaminating the area with toxic materials such as mercury vapor and exposing the people, pets, and the environment to these hazards.  The discussion of this issue has been practically blocked. 

Mercury has long been known to have toxic effects on human and wildlife. Mercury is a toxic, persistent, bioaccumulative pollutant that affects the nervous system.  As it moves through the environmental media, mercury undergoes a series of complex chemical and physical transformations.  Local, state, and federal agencies should be working to reduce the amount of mercury in the environment, not promoting more usage of this highly toxic chemical. No one currently knows how many fluorescent bulbs are in landfills at this time.  If we expand their usage, we are adding to a monumental mercury pollution problem.

Further Information About the Negative Effects of Fluorescent Lights

For more information about the negative effects of fluorescent lights, please visit the Websites listed below:

http://www.theness.com/neurologicablog/index.php?p=157
http://news.bbc.co.uk/2/hi/health/7170246.stm
http://www.news.com.au/adelaidenow/story/0,22606,23000203-5006301,00.html

With all of us working together on this and not procrastinating, hopefully we will achieve success.  Such obstacles are worthy of efforts to counteract them.

Thank you,

Helen L. Irlen, MA, LMFT
Executive Director
Irlen Institute International Headquarters

 

Irlen Institute Receives 2009 Best of Long Beach Award
 
Long Beach, CA (July 15, 2009) – The Irlen Institute has been selected for the 2009 Best of Long Beach Award in the Individual & Family Services category by the U.S. Commerce Association (USCA).
 
The Irlen Institute identifies and corrects a unique perceptual processing problem, which can affect achievement, learning, and performance for both struggling and good readers.   Irlen then eliminates this problem using colored overlays and Irlen Spectral Filters worn as glasses or contact lenses. 
 
This type of perceptual problem is not detected by educational, visual, or medical tests. Immediate improvements are achieved without daily or weekly therapy sessions. Approximately 46% of those with reading problems, AD/HD, LD, or dyslexia can be helped as well as individuals who are seen as underachievers with behavioral, attitudinal, or motivational problems. 
 
The Irlen Method has helped hundreds of thousands of children and adults throughout the world. There are presently over 4,000 educators who have been trained in the Irlen Screening Method. 
 
The Irlen Method is backed by professional and scientific advisory boards of leading experts in the fields of medicine, optometry, ophthalmology, neuroscience, research, education, autism, and dyslexia. 
 

The USCA "Best of Local Business" Award Program recognizes outstanding local businesses throughout the country. Each year, the USCA identifies companies that they believe have achieved exceptional marketing success in their local community and business category. 

Pilot Project at Edwardsville Elementary: This pilot study looked at presence of Irlen Syndrome/Scotopic Sensitivity in children in School District USD 204. Of the 30 students evaluated, 21 showed evidence of moderate Irlen symptoms and showed moderate-significant improvements in visual perception with colored overlays.

None of the students evaluated were in Special Education. Nevertheless, they were struggling with reading, headaches, frustration, and discomfort from bright lights. The study indicates that a number of children in Edwardsville Elementary School demonstrate Irlen Syndrome. Evaluation and treatment of this condition is likely to lead to improved reading skills and less frustration for many of these students. There should be at least one staff member in each school who is trained to screen students and use the Irlen interventions. Kay Shevling, School Board Member.

State and National Standardized Testing Accept Colored Overlays: The GED, TABE (Tests of Adult Basic Education by CTB McGraw-Hill) and CASAS Test of Life Skills ALL accept colored overlays and lighting modifications to be used during testing at the student's request.

Colored Overlays Accepted for Standardized Testing: California Department of Education's website lists colored overlays as a standard accommodation (www.cde.ca.gov/ta/tg/sa/documents/matrix5.pdf,) Oklahoma also has a website listing colored overlays as a standard accommodation. The easiest method for getting to this website is to do a google search for "colored overlays" and find "accommodations for Students on an IEP or 540 Plan Oklahoma CORE" which will directly link you to the website: www.se.sde.state.ok.us/ses/3-21yrs/accommodationhandout.pdf. The Standards and Assessment Division of Riverside Publishing Company of the Woodcock-Johnson Test list colored overlays are a Category 2 accommodation allowable to all students with an IEP or 504 Plan.

Irlen International Diploma Course. For those of you who are interested in pursuing further study and qualifications, we are pleased to announce the International Diploma of Irlen Institute (IDII). This is a diploma on learning difficulties of which Irlen is one of eight units. The course runs over 18 months and will be conducted on-line through a password-protected portal on the website www.irlenwa.com.au. For information and application form, please email Steve Stanley at steve@irlenwa.com.au.

Books. Margit Tuabenschmid, Visuelle ahrnehmungsschwache und Ir;en-Syndrom (Visual perception condition and Irlen Syndrome);ISSN 1431-7273; ISBN 3-631-52374-2, A German book edited by Univ. Prof. Dr. Richard Olechowski. In the introduction, Univ. Prof. Dr. Richard Olechowski states that the study on Irlen Syndrome is an "important research result for special and remedial education." The placebo controlled research study proves the significant advantages in reading rate and reading accuracy using Irlen coloured overlays for children with Irlen Syndrome.

LouAnne Johnson, author of the best selling book that inspired the movie Dangerous Minds, has written another book, the Queen of Education, in which she states, "In my own experience, about one-half of a given class of remedial readers showed signs of scotopic sensitivity and responded positively and immediately to using overlays to read. Other teachers have reported similar success."

Community College Research. Brenda Elliott, an Irlen Screener at one of the community colleges, has been testing and providing overlays to her students in GED or Adult High School programs. She has them take the TABE testing without overlays and then with overlays within less than a week. Improvement ranged from 1.5 grade levels to 4.7 grade levels. The mean improvement was 3.4 grade levels.

Brain Research. Initial results of brain scans of a few individuals with Irlen Syndrome. showed a 4 standard deviation in hyperexcitability and delayed processing. Over excitability alters the input which leads to difficulty with visual integration and visual processing.

Navy Research. The U.S. Naval Education and Training Command (NETC) are sponsoring the Naval Aerospace Medical Research Laboratory (NAMRL) to assess the prevalence and possible impact of Scotopic Sensitivity Syndrom or Irlen Syndrome. They also plan to assess the effectiveness of colored overlay intervention.

Courses. Irlen Center Boston with Cambridge College Professional Development, The Distance Learning Program (DLP). "The Brain and Irlen Syndrome" EED641 Course may be taken separately or as part of the Applied Neuroscience Certificate Program. For details contact www.irlenboston.com.

Copyright © 1998 Perceptual Development Corp/Helen Irlen.  All rights reserved.

 
 

The Race is On - Pharmaceutical Executive


The CFIDS Assoc. posted a summary of the following article to their
Facebook page today- "A long article about CFS, XMRV and drug
companies' new interest in CFS appears this month in Pharmaceutical
Executive, a magazine that serves the pharmaceutical and biotech
industry. Writer Walter Armstrong interviewed many people for the
article that provides historical context as well as a look to the
horizon for treatments."
http://www.facebook.com/CFIDSAssn

-------------------------------------------------------------

'The Race Is On'
Mar 1, 2010
By: Walter Armstrong
Pharmaceutical Executive

http://pharmexec.findpharma.com/pharmexec/article/articleDetail.jsp?id=661633&pageID=1&sk=&date=


"I really, really, really want to die and have had enough of being so
sick and in so much pain every second of every day and, basically, one
serious health crisis after another," wrote Lynn Gilderdale in a 2006
Web post during one of many discussions the 31-year-old British woman
had with parents and friends on whether to hasten her own death.

In July 2009, Gilderdale decided to act, injecting herself with what
she believed to be a lethal quantity of morphine. An hour later, she
was unconscious but still alive, so her mother, Kay, took over the
duty of assisting her daughter's suicide. She crushed antidepressants
and sedatives and inserted the powder into her daughter's nasogastric
tube. When that remedy failed, Kay gave Lynn several more injections
of morphine, and later, increasingly desperate, several injections of
air. Finally, toward dawn, Lynn's spirit made good her longed-for
escape from a body ravaged for 17 years by severe chronic fatigue
syndrome (CFS).

The Gilderdales' personal tragedy became a public story following Kay
Gilderdale's arrest for attempted murder. With the British government
inching toward legalizing assisted suicide, Lynn's CFS-related loss of
almost every physical function, coupled with her mother's steadfast
devotion, rendered the Gilderdales the most sympathetic in a series of
highly publicized right-to-die cases.

In January, a British jury unanimously found Kay Gilderdale not guilty
of attempted murder. Her exoneration marked a triumph for advocates of
the legalization of assisted suicide. But lost in that debate was what
patients with CFS view as a more urgent story: The disease that took
Lynn Gilderdale's life remains as untreatable in 2010 as it was when
the first known outbreak occurred in Lake Tahoe in 1984.

"CFS simply gets no respect. It has been underfunded, understudied, underdiagnosed, and the healthcare system would like nothing better than to sweep it under the rug," says Donnica Moore, a women's health expert and CFS advocate. "But we're not going to allow that."

Medicine's "Problem Child"

From almost any angle, CFS presents a vexing picture. No cause—not
even a single biomarker—has been identified. Symptoms are as diverse
as they are unpredictable, including debilitating fatigue,
post-exertion malaise, and an enduring flu-like state ranging from
aches and pains to severe headaches, cognitive disturbances,
paralysis, and myriad complications. "CFS defies the established structure of medical disease," says Kimberly McCleary, who has headed the CFIDS Association of America for 20 years. "Many doctors still don't 'believe' in it. They treat a single symptom without seeing the whole. Or, worse, they dismiss it as a psychological problem." In
turn, a fierce mistrust of not only the medical profession but the
federal research establishment is endemic in the CFS community.
Conspiracy theories abound.

Some 200,000 Americans have been diagnosed with CFS, while anywhere
from 1 million to 4 million may suffer from it, according to the CDC.
Average life expectancy is about 55, with suicide the third most
frequent cause of death. Depression is rampant. "CFS is not a death sentence—it's a life sentence," is a CFS community truism. Meanwhile,
skeptics persist in dismissing it as "yuppie flu" and "shirker
syndrome."

Yet recent studies show that most CFS patients did not experience clinical depression prior to getting sick. And increasing diagnoses of
pediatric and adolescent cases reveal that kids who fall victim to the
disease include many high achievers, whose parents can trace the onset
of the illness to a routine infection of unusual severity or duration.
Still, the CDC's sole treatment recommendation is cognitive-behavioral
therapy. The agency's longtime CFS program head was finally axed in
February, following years of public criticism by doctors for favoring
a research focus on early sexual abuse rather than the search for
pathogens.

The tenacity of its "disputed diagnosis" status has earned CFS the dubious distinction as the only orphan disease with literally millions of "silent sufferers." Pharma's longstanding disinterest in CFS is predictable, given the disease's unforgiving uncertainties. "I don't blame the drug industry—CFS is medicine's 'problem child,'" says
virologist Suzanne Vernon, the CFIDS Association's scientific director. "If so many doctors do not recognize CFS, how can a drugmaker sell a treatment?"

CFS presents a kind of Gordian Knot to any pharma wishing to brave
clinical trials: the lack of a biomarker confounds diagnosis; the lack
of quantitative measurements of fatigue—the telltale symptom—confounds
evaluation of a drug's efficacy; the presence of such diverse symptoms
confounds validation of data.

"The drug industry works best on a 'bug and drug' model, and CFS has
been slow to deliver a target," says McCleary. Early on, hopes were
high that basic science would uncover a single virus behind CFS's
devastating immune-system collapse—as took place in HIV. Academic
research into the human retrovirus HTLV-II yielded especially
promising preliminary results in 1991, raising patients' hopes, but
replication studies foundered and funding was cut.

Until now, pharma's contribution to CFS treatment has been largely
limited to the off-label use of a panoply of drugs, such as
stimulants, sedatives, antidepressants, and anti-migraine medications
to treat symptoms. However, with the success of Lyrica and Cymbalta
for fibromyalgia (another "disputed diagnosis") drugmakers may find
themselves inching into the CFS market.

Pharma may in fact stand to gain considerably by investing in CFS R&D.
Expert consensus is that CFS is actually a suite of diseases, with
some overlapping symptoms but many differences—and multiple causes.
Advanced research is identifying biological trends, including chronic
low-grade immune activation, latent activation of infections, and
specific abnormalities in cognition, metabolism, and blood pressure.
Deeper forays into CFS pathogenesis could yield finds that apply to
many other conditions.

"CFS is a huge opportunity for pharma," says Moore. "The market is
big, the bar is low, and they don't need a home run. Even incremental
improvements to quality of life would be fantastic."

Unfortunately, the first CFS drug to face FDA review bombed in
December: Hemispherx's sloppy NDA for Ampligen, an antiviral and
immune booster in experimental use since the late '80s, contained
15-year-old data that "did not provide credible evidence of efficacy."
The drug, which requires twice-weekly IVs and costs thousands of
dollars a month, appears to work well in about 15 percent of patients.
"This is the right drug in the wrong hands," says McCleary. "They cut
too many corners."

In XAND Land

Into this bleak landscape last October blazed an unpredictable claim
by an obscure researcher from a little-known institute that the cause
of CFS may have been discovered: a human retrovirus called xenotropic
murine leukemia virus–related virus (XMRV). Biochemist Judith Mikovits
at the Whittemore Peterson Institute (WPI) in Reno, NV, along with
colleagues at the National Cancer Institute and the Cleveland Clinic,
reported in the journal Science that DNA from the mouse-derived
retrovirus were found in 67 out of 101 blood samples of CFS patients.
Testing of 300 additional samples was said to hit 98 percent. What's
more, 3.7 percent of the 218 control samples also contained XMRV.

The media predictably amplified the remarkable, if preliminary,
findings into a "cause-of-CFS" story, and WPI was only too happy to
oblige. "This is the breakthrough that we have been hoping for. Now we
have scientific proof that this infectious agent is a significant
factor in CFS," Annette Whittemore, WPI founder and president,
proclaimed in the initial press release, which also announced that WPI
had renamed CFS as XMRV-associated neuro-immune disorder (XAND).

WPI did not discover the XMRV virus, however. That distinction goes to
scientists at the Cleveland Clinic and the University of California
San Francisco, who in 2005 detected this fourth human retrovirus in
the cancerous prostate tissue of 40 percent of men with a particular
defective gene. WPI's Mikovits made the opportune leap from prostate
cancer to CFS when she learned of the high incidence of lymphoma among
the original Lake Tahoe cohort. XMRV seemed a possible culprit because
it decimates natural killer blood cells, the immune defense against
cells infected by HTLV-I. In addition, some CFS patients carry the
same genetic mutation as men with prostate cancer who tested positive
for XMRV. The working hypothesis at WPI is that XMRV indirectly causes
CFS by inflicting so potent an assault on the immune system that it
reactivates other viral infections and a chronic inflammatory
response. "XMRV is the sort of agent that could create that effect on
the immune system," Daniel Peterson, WPI's medical director and the
co-discoverer of the original Lake Tahoe outbreak, told The New York
Times in a piece headlined "A Big Splash by an Upstart Medical
Center."

WPI was founded in 2006 by Whittemore and her husband, Harvey, a
prominent Nevada couple whose daughter, Andrea, 31, has lived with a
severe case of CFS for 20 years. Frustrated by Andrea's
marginalization by doctors and by the lack of leadership, funding, and
research at CDC, Annette Whittemore invested $5 million to launch her
own research institute at the University of Nevada Medical School in
Reno.

A flurry of activity followed on the heels of the discovery. Other
researchers raced to confirm the WPI study. Patients flocked to the
Internet for more information: Was XMRV fatal? How was it transmitted?
Could they get tested for it? The answer to the last question was yes.
A diagnostic test for the virus was already being marketed at $650 a
shot by VIP Dx, which just happens to be owned by Annette and Harvey
Whittemore. "Leaving aside the issue of who's right and who's wrong,
the original paper did not establish the virus [causes CFS] and didn't
establish it as a viable marker," Tufts University retrovirologist
John Coffin, who wrote the editorial accompanying the original Science
study, told the journal. Nevertheless, VIP Dx reported a
six-to-eight-week backlog for results.

In general, patients' emotions bordered on the euphoric. Cort Johnson,
whose Phoenix Rising Web site is one of the most trusted sources of
information in the CFS community, says, "Patients are starved for good
news. A discovery like this excites researchers, brings in funding,
and gives patients hope—something they haven't had for many years."
Meanwhile, the nation's handful of CFS specialists tried to temper
patients' expectations with YouTube educational lectures on XMRV and
its potential treatment implications.

For public health officials, the most alarming data point was XMRV's
3.7 percent prevalence rate in the control group. Extrapolating a
worst-case scenario led to the prospect that as many as 10 million
Americans could be carrying an infectious retrovirus already linked to
two serious diseases. In January, a federal task force was convened to
safeguard the nation's blood supply, an operation that could take a
year or more, according to member Suzanne Vernon. Then again, a little
public panic has its upside. "As we saw in the early years of HIV,
fear among the general population at least gets the money flowing,"
says Moore.

A Pharma Screening

XMRV is exactly the kind of bug that hooks Big Pharma. "Two of the
world's biggest drug companies contacted us the day our Science paper
appeared," says Judith Mikovits. "By showing that XMRV is an
infectious agent, we think we've convinced them to become interested
in this target."
Although Mikovits refused to disclose the identity of
the two companies—"for fear that patients might seek out the
treatments before studies"—she said that both were already screening
HIV antiretroviral compounds in WPI cell lines for a hit.

Given the similarities among human retroviruses, an HIV drugmaker may
already possess an effective anti-XMRV agent—if not a drug already on
the market, then one of the thousands of marginally variant molecules
made in the painstaking process of discovery—and currently gathering
dust.
Two classes of HIV drugs are in the running.

Both HIV and XMRV replicate by virtue of reverse transcriptase, the
enzyme that links their viral RNA to the host cell's DNA.
Reverse-transcriptase blockers were the first victory Big Pharma
scored against HIV. Ironically, in the February Virology, Mayo Clinic
researchers reported that after testing 10 HIV drugs against XMRV in
vitro, the virus was susceptible only to AZT, a nucleoside
reverse-transcriptase inhibitor (NRTI) notorious for its toxicity. "No CFS patient wants to go near AZT," says Mikovits.

Other RTs (or experimental versions) that may show promise include
Bristol-Myers Squibb ddI and d4T, GlaxoSmithKline's Ziagen, and
Gilead's Emtriva and Viread. Merck's first-in-class integrase
inhibitor, Isentress, may work "because of its broad-spectrum
activity," according to Coffin. In the best case, an already-approved
antiretroviral will reveal XMRV-busting prowess, allowing the
drugmaker to bypass safety and other early tests and advance straight
into humans. "If one of the drugmakers currently screening candidates
gets lucky, we could start a clinical trial in a month," says
Mikovits.

Veteran advocates like Kimberly McCleary do a double-take at the news
that two global pharmas are on the trail of CFS. "Now what we need is
a race between them to see which can be first to market," she says.

WPI and Full Disclosure

When XMRV was first discovered in 2005, pharma held back because it
was reported that the virus appeared to be inactive in prostate cancer
cells. But Abbott Diagnostics jumped at the challenge of developing
assays to detect XMRV. Last month, Abbott HIV Global Surveillance
Program's John Hackett reported early progress on several fronts. But
the main takeaway was that detecting XMRV in human blood samples is
proving far more difficult than the WPI study had led anyone to
expect. Using their new assay that can detect three different antibody
proteins, the Abbott team found XMRV in only three of 2,851 random
human samples. That's good news for the general population—a .01
percent extrapolated prevalence rate—but bad news for CFS patients.

Nor is Abbott alone in judging XMRV hard to find. Since January, three
confirmation studies—two British, one Dutch—have reported results, and
none found the retrovirus in either their CFS blood samples or their
controls. As doubt is increasingly cast on WPI's theory that XMRV
causes CFS, arguments have raged across the Atlantic. Accusations of
sloppiness, bias, and even fraud have been hurled, mostly by Judith
Mikovits and WPI's defenders. Old suspicions of patients have
reappeared.

When asked for a more considered opinion, others choose their words
carefully. "Validation and confirmation are not coming as fast as one
might like, that's for sure," says John Coffin. "If you can't
establish a disease association, then there is less interest in
developing a drug, obviously." Coffin also notes that uncertainty
remains about whether or not the virus is replicating. "If it does so,
like HIV, then an antiretroviral would be very effective. But if not,
as it appears in prostate cancer, a drug would not make any
difference."

Writing on the CFIDS Association of America's Web site, Suzanne Vernon
made a valiant effort to keep hope in the causal hypothesis flickering
by emphasizing that none of the three studies is a "proper and robust
replication study." And she concluded by throwing down the gauntlet:
"Until methods are standardized and the scientific community is
provided information about the specific characteristics of the CFS
subjects who tested positive in the Science paper, be prepared to read
more negative studies. Hopefully the Science investigators will make
this information available before interest in XMRV being associated
with CFS fades."

Given the great diversity in CFS symptoms, disclosure of the medical
histories and clinical conditions of the high number of WPI's
XMRV-infected CFS patients is critical. "Of course, this would
generate more questions, but a cleaner association is needed," Vernon
says. "I don't know why WPI won't provide this."

So far, Mikovits has refused to budge. "No additional medical
histories or anything about the patient population would shed any
light on XMRV," she says.

Sleuthing on her own, Vernon was able to uncover some suggestive
information about the 32 CFS patient samples about which WPI
originally reported assay results. Only 12 tested positive on more
than one assay (WPI ran four assays); of those 12, four had been
diagnosed with cancer. Another 13 of the total 67 XMRV-positive CFS
samples also had cancer.

Whether XMRV is a cause or a passenger or merely a geographical
coincidence of a particular CFS outbreak remains to be learned. But
one thing is clear: With its big discovery, the upstart medical center
has made more than a big splash. WPI has placed CFS—and itself—at the
center of the perfect storm. "I knew how serious a retrovirus is,"
Annette Whittemore told the Times. "I was very concerned, knowing the
implications. My second thought was, 'Of course, it was going to be
something serious like that. Look at my daughter and how ill she is.'"
 





 

How many times have we said this?

 
Thanks to Terri Libenson, Pajama Diaries

Help Whittemore-Peterson at No Cost to You!


In just three short months, thousands of causes just like Whittemore Peterson Institute have, all together, earned tens of thousands of dollars from our special challenges.  The most earned by a cause was over $1,000.  We're tremendously pleased that these Challenges work and we're excited that supporters like you are making it happen.  So pleased that we've put together another 24 hour / $5,000 challenge.

According to the Nonprofit Finance Fund's recent survey:

  * Nearly 90% of nonprofits surveyed expect 2010 to be as difficult or more difficult than 2009.
  * 80% anticipate increased demand for services in 2010.
  * Only 18% of organizations expect to end 2010 above break-even.
  * The majority - 61% - have less than three months of cash available; 12% have none.

Together, you and iGive.com can make times a little less tough for Whittemore Peterson Institute. 

We'll donate our marketing budget, you spread the word, and Whittemore Peterson Institute gets the money.  It's that simple.

We'll give Whittemore Peterson Institute a dollar for each person who joins iGive using the special link below and visits one store via iGive between noon Wednesday, March 24, 2010 (Chicago time) and noon Thursday, the next day. 

Here's where you come in.  Send your friends, family, and colleagues the following link in an e-mail, tweet it, do a Facebook posting, put up posters, shout from mountain tops (you know the drill) and let them know you think Whittemore Peterson Institute is pretty cool and deserves their support, especially since it's free!  You can even just forward this e-mail.  The only way Whittemore Peterson Institute will get new supporters and that free $1 (or more) is if you invite them. 

This is the link:
    http://www.igive.com/welcome/warm_reg_promo.cfm?m=706712
   
Make sure you tell your friends to perform a store visit, so that they earn the dollar.

5,000 new members, $5,000.  No purchase necessary. That's 5,000 new members for all causes, not just yours, and it's only for 24 hours, so it's a bit of race.

It can turn into more than a dollar, much more ... if these new members search or buy something at an iGive store they'll earn much-needed money for Whittemore Peterson Institute.  Right now, we're donating a special bonus of $5 for that first purchase plus the usual percentage.  Active iGive members raise an average of over $40 per year for their cause.
   
The details:

     - Offer active between 12:00 p.m. (noon) March 24, 2010 and 11:59 a.m., March 25, 2010 (Chicago time).
     - New members only (never have been an iGive member previously). 
     - All the normal rules of membership, searching, and purchasing apply, our site has the details.
     - Once we've given away $5,000 in total, the offer ends.
     - The special link and visiting a store via iGive are necessary.  No link, no store visit, no $1.

That's it.  We've added tons of new stuff in the last months that we want to really test out, so spreading the word helps both Whittemore Peterson Institute and iGive. Check it out yourself at http://www.iGive.com .  You may need to login first.

Yours,

Robert N. Grosshandler
Founder

P.S. If you want to track how you are doing, just visit http://www.iGive.com/html/referralsreport.cfm.

If you want to track how your cause is doing, please visit http://www.iGive.com//html/causestats.cfm .

For help and questions, please visit http://support.iGive.com

Tuesday, March 23, 2010

Floyd Skloot, Author, Patient

    Floyd Skloot is an award-winning poet from Oregon who describes
the disease Myalgic Encephalomyelitis in a way that makes clear
that we are dealing with a brain injury due to viral assault.
CDC Reeves "empiric" definition leaves out important information
and substitutes the biopsychosocial nonsense of CFS Wessely school.

    Floyd Skloot has written 6 books of poetry, including Music
Appreciation (1994), The Evening Light (2001), The Fiddler's
Trance (2001) and The End of Dreams (2006), 3 memoirs,
1 collection of essays and 4 novels. He is the winner of the Emily
Clark Balch Prize in Poetry from Virginia Quarterly Review and
three Pushcart Prizes.

    Below is part of his description of the disease from the preface
to
Skloot's memoir "A World of Light" which matches quite well with
the clearly delineated criteria of Drs. Ramsay, Dowsett, and Hyde
available in this patient handout for doctors:
http://www.name-us.org/MECFSExplainPages/HandoutForPatientsDoctors.pdf

From the preface of Skloot's book:
   "At World of Light is a memoir of the reassembled life.
In early December 1988, at the age of 41, I boarded a plane
in Portland, Oregon, and during the flight to Washington, DC,
contracted a virus that targeted my brain.  It was probably a common
virus, according to my doctors; the most likely suspect is human
herpes virus
carried on the plains recirculated air.  But my immune system was
unable
to stop its assault on my brain.
    By the time I flew back to Oregon, three days later, I was a
changed man.  I knew I was very sick, but didn't perceive that
the cascading symptoms were connected to a grave or illness until,
after six weeks of continuing deterioration, I was no longer able
to work or think or remember.  I couldn't run anymore, and when
I tried I would get lost on the wooded trails where I had run 50 miles
a week, year after year....
    As brain scans finally revealed, a viral assault had he been away
parts
of my brain, the resulting damage showing up as scattered punctate
lesions in the cerebral cortex whose effects left me totally disabled.
Connections were afraid and severed, with scar tissue scattered
like frozen spots in the fiery landscape of gray matter....
    Neuropsychological testing confirmed that my abstract reasoning
powers, long-and short-term memory, visual learning capacity,
and ability to make sense of what I see at all been severely
compromised.
My IQ had diminished almost twenty percent.
    More than 15 years have passed and I remain totally disabled....
My previous book, In the Shadow of Memory, took eight years to write."

    In the midst of one of his poems, he relates the problems of
Myalgic Encephalomyelitis in the course of his life one Sunday
morning:

The Winter Branch
    "All pleasures and all pains, remembering
    The bough of summer and the winter branch."

Skloot's website: http://www.floydskloot.com/

Steven Du Pre
Poetry website: http://www.angelfire.com/poetry/soareagle/index.html
"By words the mind is winged."  Aristophanes
Website for National Alliance for Myalgic Encephalomyelitis:
http://www.name-us.org



Monday, March 22, 2010

The sort of education we need to be doing....

Feel free to circulate this essay to anyone who makes disparaging remarks about those who stand to benefit from the new legislation -- it's NOT "socialized medicine" that gives us something for nothing, it's a consumer protection/industry regulation bill that ensures that we get what we're paying for.  It is immaterial to me whether you leave it in the first-person or edit it to "I know a woman who owns a small business, she..."
 

Chuck writes: "I believe in personal responsibility while you obviously believe in entitlement."
 
Let me give you some background here, Chuck. I co-own a small business.
 
All of our employees have pre-existing conditions; some (including me) legally qualify as "disabled" but choose to work instead of collecting government benefits. We employ people that no other company is willing to hire because of their age and/or disability.
 
Because we are a SMALL business, our insurance policies are individually underwritten; we don't have enough employees to get the no questions asked policy that a large corporation would get
 
Now, where you get "entitlement mentality" out of that is beyond me. I am a hard-working responsible person who struggles to pay premiums on a policy that pays nothing. Do I believe that I am legally entitled to get what I contracted for and have been paying for? Yes.
 
If we really had entitlement mentality, we'd cancel our insurance, close down the business, and tell all our employees to apply for government benefits. In my case, I would be better off financially to do just that, yet I continue to work.
 
So don't go applying some fantasy stereotype to those of us who back the legislation, because you're wrong. My entire company, regardless of political affiliation, was behind this consumer protection legislation because it affects us personally.
 
One of the Congressmen brought up a disabled constituent who cannot go back to work because he can't get insurance and can't risk losing his Medicaid. That's the real story here, not "socialism" or "irresponsibility".
 

 
 




Sunday, March 21, 2010

Update on the Documentary Film

Hello there

you may think that we have stopped work on our documentary on ME as it 
has taken a while to reach this point, however to the contrary, we are 
now picking up the pace. These films take a long time to get off the 
ground, such is the nature of the beast, but the path is opening up 
and to start it off we have the new website which you can find here,on 
the film named named WHAT ABOUT ME? www.whataboutme.biz
This is where we plan to start increasing information as we go, if you 
remain interested please keep the link. Apologies to anyone whose 
emails have not been returned or if you haven't been updated, we had 
to get this far to be able to keep in contact via the site.
Please visit when you can to keep up with the progress. Those of you 
who have offered to be interviewed for the doc, or to be involved in 
some way, we haven't forgotten , but it would be good to reconfirm to 
us , as there is a lot of information, and some of it does get lost 
between the cracks!
I will be off to the US shortly for further meetings towards the 
film.If anyone knows of any funding bodies here or in theUS, who may 
be interested in helping with the production please let me know. Of 
course we are approaching a lot of possible sources anyway, but you 
never know there may be that big one out there, that we don't know 
about!
Please feel free to circulate the link to any parties that you think 
would be interested.

All for now and thank you for your interest.

Very best wishes

Susan
Susan Douglas
susan@digitaldocumentaries.co.uk

Producer
Double D Productions
1st Floor
57 Poland St
London W1F 7NW
Ph : 44 (0) 203  214 0091
M: 44 (0) 7792459362
www.digitaldocumentaries.co.uk