Saturday, May 8, 2010

Dr. Deckoff-James is trying Isentress for XMRV

"Merck's Isentress fought the virus, XMRV, more powerfully than 44 other
anti-HIV compounds tested against the pathogen in laboratory experiments,
according to researchers from the University of Utah and Emory University."

(quote from Jan Van Roijen)

We all look forward to the reports of whether she feels better!

CFS: Medicine's Problem Child

Source:   PharmExec
Date:     March 1, 2010
Author:   Walter Armstrong

The race is on - 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

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

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.'"

(c) 2010 Advanstar Communications, Inc.

Friday, May 7, 2010

Campaign to End Chronic Pain

May 7, 2010

Announcing the "Campaign to End Chronic Pain in Women"
To Be Launched May 19th on Capitol Hill

Campaign to Highlight Chronic Pain is Latest Example of Discrimination Against Women in U.S. Healthcare

Chronic pain - defined as pain persisting more than six months - is all too common. It is estimated to affect 25 percent of Americans and account for more than 20 percent
of all physician office visits. Some people suffer from two conditions, while others
have three or more. In some cases, individuals suffer from one condition for many
years before developing a second or third; in other cases, individuals experience
symptoms of several conditions simultaneously. These disorders make life very difficult
for millions of sufferers and their families.

Chronic fatigue syndrome (CFS), endometriosis, fibromyalgia, interstitial cystitis (IC), irritable bowel syndrome (IBS),  temporomandibular (TMJ) disorders and vulvodynia are just some of the conditions that have sidelined as many as 50 million lives and cost up to $80 billion each year. These four either solely affect women, or target women at least four times more often than men.

The Campaign to End Chronic Pain in Women aims to improve the quality of women's
lives by raising awareness of chronic pain conditions that disproportionately impact
women, as well as the neglect, dismissal and discrimination faced by women suffering
from chronic pain. Men suffering the double stigma of chronic pain and conditions
commonly considered to be women's conditions will be addressed as well. You can
help bring greater attention to these issues be responding to our Action Alert!

The Campaign's groundbreaking report, to be unveiled during a congressional briefing
on May 19, will offer recommended policy solutions that could save billions in wasted
health care costs each year. The launch will also feature the premier of the short
Campaign film, Through the Maze: Women and Pain, and the unveiling of a Campaign website. The briefing is being hosted by U.S. Representatives Lois Capps (D-CA), Tammy Baldwin (D-WI) and  Janice Schakowsky (D-IL). All are scheduled to speak at the event, along with Rep. Nita Lowey (D-NY). Representatives of the four organizations of the Overlapping Conditions Alliance (OCA) that have helped shape the campaign will highlight the findings of the report and outline the campaign.

You can be part of this ground-breaking campaign. Please contact your members of Congress with our Action Alert! and ask them to attend or send a staff representative
to this important briefing. Express your support for increased research, awareness
and attention to the issue of chronic pain that is barely addressed by recent health
care reform legislation, but takes a huge toll on our country and its economy.

The Overlapping Conditions Alliance (OCA) is a group of independent nonprofit organizations
seeking to advance the scientific, medical and policy needs of individuals affected
by medical conditions that frequently overlap. More information about the OCA can
be found at The OCA is comprised of the CFIDS Association of America, the Endometriosis Association, the National Vulvodynia Association and the TMJ Association. A recording of our May 5 webinar on chronic pain conditions with a preview of the Campaign to End Pain in Women is available at


Our Mission:
For CFS to be widely understood, diagnosable, curable and preventable.

Our Strategy:
To stimulate research aimed at the early detection, objective diagnosis and effective
treatment of CFS through expanded public, private and commercial investment.

Our Core Values:
To lead with integrity, innovation and purpose. []


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Ubiquinol - A More Advanced Form of the Energy-Producing Nutrient CoQ-10

By Karen Lee Richards*

With nearly 40 years of medical research showing its importance in managing a wide range of serious illnesses, it's not surprising that CoQ-10 has at times been described as "The Miracle Vitamin" and "The New Fountain of Youth." Now a new form of CoQ-10 called ubiquinol makes the benefits of CoQ-10 even more readily available to the body.

Coenzyme Q10 (CoQ-10) is a vitamin-like nutrient that is present in virtually every cell of the body and is an essential component of each cell's ability to produce energy. It is also a powerful antioxidant - a chemical that "mops up" potentially harmful substances.

In order to understand how CoQ-10 works, it is first necessary to understand the mitochondria. Imagine that each cell in your body is a car. Mitochondria are the engines - or energy producers - in each cell that make your "car" run. It is the job of the mitochondria to supply this energy in the form of adenosine triphosphate (ATP). This is where CoQ-10 comes in. To continue the car analogy, CoQ-10 is the oil that enables the engine to work.

CoQ-10 is the catalyst that makes it possible for the mitochondria to produce ATP, the molecule upon which all cellular functions in the body depend. Why Ubiquinol Works Better

The CoQ-10 found in most supplements is called ubiquinone. In order to produce cellular energy, the body must convert the ubiquinone to ubiquinol. It is the ubiquinol that carries electrons through the mitochondria and produces energy.

Young healthy people can easily convert CoQ-10 to ubiquinol. But as we age or when we have a chronic illnesses, our ability to convert CoQ-10 to ubiquinol diminishes. This decreased ability becomes apparent around the age of 40, although some scientists suggest that it may begin in the early to mid-20s.

Ubiquinol's superior effectiveness on the degenerative consequences of aging was demonstrated in a 2006 study published in Experimental Gerontology. Age-accelerated mice were divided into three groups. The first group was fed a standard diet with no supplementation. The second group received a standard diet plus the ubiquinone form of CoQ-10. The third group ate a standard diet plus the ubiquinol form of CoQ-10.

After a year, the first group suffered severe, degenerative changes related to aging. The second group, those receiving the ubiquinone, showed noticeable, but less harsh changes. The third group, who received the ubiquinol, remained alert and energetic, exhibiting the characteristics of young, healthy mice.

Overall, the ubiquinol group aged 51% slower than the group receiving no CoQ-10 and 40% slower than the ubiquinone group.(1)

Another peer-reviewed study compared how well humans absorbed ubiquinone and ubiquinol. The results showed that it takes 8 times as much ubiquinone to equal the blood plasma concentrations of ubiquinol. More specifically, 150 mg. of ubiquinol was equal to 1200 mg. of standard CoQ-10.(2)

Additionally, in an unpublished study with aged rats, blood concentrations were sustained longer with ubiquinol. After eight hours, the concentration of ubiquinol CoQ-10 was 3.75 times greater than standard CoQ10.(3)

Obviously, as these studies indicate, it is better to give the body CoQ-10 in the form it can most readily use - ubiquinol. But until recently, ubiquinol has been difficult to stabilize. It is also easily oxidized when exposed to air. Now a novel new patented process has made it possible to produce a stable form of ubiquinol that is protected from oxidation - Ubiquinol CoQ-10.

The Implications of CoQ-10 Deficiency

Because CoQ10 is so essential to the proper functioning of every cell in the body, it's not surprising that researchers have found a deficiency of CoQ-10 may be linked to a number of diverse diseases. A few of the illnesses in which low levels of CoQ-10 may be implicated include:

  • Heart Disease
  • Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS)
  • Cancer
  • Parkinson's Disease
  • Alzheimer's
  • Migraines
Small amounts of CoQ-10 can be found in foods, primarily meat and fish. The highest amounts are found in organ meats (heart, liver, kidneys) as well as beef, soy oil, sardines, mackerel and peanuts. CoQ-10 is also synthesized in bodily tissues. In healthy individuals, the combination of dietary intake and biosynthesis work to maintain normal CoQ-10 levels.

Why Do So Many People Seem to Be Deficient in CoQ-10?

No one knows for sure. There are likely multiple causes. Perhaps the emphasis in recent years on eating less red meat as well as generally poor eating habits have contributed to reducing our dietary intake of CoQ-10. And a number of other factors, such as environmental toxins, chronic diseases and some prescription medications may contribute to the impairment of the body's ability to synthesize CoQ-10.

For example, research has shown that the cholesterol-lowering drugs known as "statins" (Lipitor, Zocor, etc.) not only lower cholesterol, but also inhibit the biosynthesis of CoQ-10 by as much as 40%.(4) Anyone taking medication to lower cholesterol should seriously consider also taking CoQ-10 supplements.

Other types of medications thought to deplete the body of CoQ10 include beta-blockers, diuretics, tricyclic antidepressants, and diabetes medications such as metformin, tolazamide and glyburide.

CoQ-10 and the Heart

Due to their high energy requirements, the heart and liver contain the most mitochondria per cell and consequently need a very high concentration of CoQ-10 in order to function properly. Because of this, much of CoQ-10 research has concentrated on heart disease. Researcher Peter H. Langsjoen, MD, FACC, reviewed numerous studies and scientific papers related to the management of heart disease with CoQ-10 and found their conclusions to be remarkably consistent: "That treatment with CoQ-10 significantly improved heart muscle function while producing no adverse effects or drug interactions."(5)

Particularly interesting have been the studies showing a strong correlation between very low levels of CoQ-10 and congestive heart failure. The severity of the heart failure also correlated with the severity of the CoQ-10 deficiency.(6) In general, the sooner patients were given CoQ-10 after onset of congestive heart failure, the more dramatic their improvement.

Cardiomyopathy (inflammation/weakening of the heart muscle) is another form of heart disease shown to benefit from CoQ-10 supplementation. In a six-year clinical study, 85 percent of cardiomyopathy patients supplemented with CoQ-10 in addition to their conventional treatments improved by one or two NYHA classes (New York Heart Association's functional classification for the four stages of heart failure).(7)

CoQ-10 also appears to be beneficial in the management of hypertension (high blood pressure). In one study of 109 patients, 51 percent were able to stop taking between one and three antihypertensive medications an average of 4.4 months after starting CoQ-10 supplementation.(8)

The Importance of CoQ10 for ME/CFS Patients

When plasma CoQ-10 was analyzed in 58 ME/CFS patients and 22 normal controls, researchers found that CoQ-10 levels were significantly lower in the ME/CFS patients than in the normal controls.(9) This finding has far greater implications than the obvious lack of energy experienced by people with ME/CFS. Because CoQ-10 is essential to every cell in the body, a severe CoQ-10 deficiency can cause mitochondrial dysfunction, which in turn has a serious negative impact on multiple organs and body systems and can ultimately result in heart failure.

In fact, that is exactly what happens, according to Dr. Sarah Myhill, MD, a UK-based ME/CFS researcher and clinician. In her recent paper, "Chronic Fatigue Syndrome and Mitochondrial Dysfunction," she makes her case that ME/CFS is actually a symptom of mitochondrial failure.(10) Dr. Myhill recommends that ME/CFS patients have their CoQ-10 levels checked and begin taking CoQ-10 supplements if they are low. She also notes that CoQ-10 will work best in conjunction with acetyl L-carnitine, magnesium, D-ribose and Vitamin B3 (niacinamide).(11)

CoQ-10's Role in Other Illnesses

Because a deficiency of CoQ-10 can potentially affect every cell in the body, more and more research is being done to determine how much of a role it may play in other illnesses. Animal and/or preliminary human studies have been conducted to uncover how CoQ-10 may work in managing a number of diseases including: breast cancer, melanoma, Parkinson's disease, Huntington's disease, Alzheimer's, and migraines.(12-16) All have had promising results indicating that CoQ-10 may be helpful in supporting the prevention or treatment of those diseases.

How to Take Ubiquinol CoQ-10

The recommended dosage of Ubiquinol CoQ-10 is one to two 50 mg. softgels per day. Check with your physician before taking more than 100 mg a day.

While standard CoQ-10 needed to be taken with a fatty meal, Ubiquinol CoQ-10 bonds with water, making it easier to absorb and eliminating the need to take it with fatty foods.

(Note: Healthy individuals under the age of 25 can easily convert standard CoQ-10 to ubiquinol, but if you are over 25 or have a chronic illness, ubiquinol is the recommended form of CoQ-10.)

In Summary
Ubiquinol CoQ-10 is vastly superior to standard CoQ-10. It provides the body with the type of CoQ-10 that is more readily available to fuel the mitochondria and produce energy because it doesn't have to expend any energy converting the CoQ-10 to its usable form.

To pre-order Ubiquinol CoQ-10, click here

* Karen Lee Richards is Lead Expert specializing in Fibromyalgia and ME/CFS, for HealthCentral's ChronicPainConnection ( Karen is co-founder of the National Fibromyalgia Association (NFA) and was Executive Editor of Fibromyalgia AWARE magazine for four years.

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1. Yan J, et al. "Reduced coenzyme Q10 supplementation decelerates senescence in SAMP1 mice." Exp Gerontol. 2006 Feb;41(2):130-40.

2. Hosoe K, et al. "Study on safety and bioavailability of ubiquinol (Kaneka QH) after single and 4-week multiple oral administration to healthy volunteers." Regul Toxicol Pharmacol. 2007 Feb;47(1):19-28. Epub 2006 Aug 21.

3. Kaneka Corporation study. "Treadmill test with the aged rat at age of 61-63 weeks." 2006.

4. Ghirlanda, et al. "Evidence of plasma CoQ10-lowering effect of HMG-COA reductase inhibitors: a double-blind, placebo-controlled study." Journal of Clinical Pharmacology. 1993 Mar; 33(3):226-229.

5. Jangsjoen, P.H. (1994). "Introduction to Coenzyme Q10."

6. Folkers K., Vadhanavikit S., Mortensen S.A. "Biochemical rationale and myocardial tissue data on the effective therapy of cardiomyopathy with Coenzyme Q10." Proc. Natl. Acad. Sci., U.S.A., 1985; 82(3):901-904.

7. Langsjoen P. H., Langsjoen P. H., Folkers K. "A six-year clinical study of therapy of cardiomyopathy with Coenzyme Q10." Int J Tissue React. 1990; 12(3): 169-171.

8. Langsjoen P. H., Langsjoen P. H., Willis R., Folkers K. "Treatment of essential hypertension with Coenzyme Q10." Molecular Aspects of Medicine. 1994; 15:S265-72.

9. Maes M, et al. "Coenzyme Q10 deficiency in myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS) is related to fatigue, autonomic and neurocognitive symptoms and is another risk factor explaining the early mortality in ME/CFS due to cardi..." Neuroendocrinology Letters. 2009;30(4).

10. Myhill S., Booth NE, McLaren-Howard J. "Chronic fatigue syndrome and mitochondrial dysfunction." Int J Clin Exp Med. 2009; 2(1): 1-16.

11. Myhill S. (Oct. 2008) "Co-enzyme Q10 in Chronic Fatigue Syndrome."

12. Lockwood K, et al. "Progress on therapy of breast cancer with vitamin Q10 and the regression of metastases." Biochem Biophys Res Commun. 1995 Jul 6;212(1):172-7.

13. Rusciani L, et al. "Recombinant interferon alpha-2b and coenzyme Q10 as a postsurgical adjuvant therapy for melanoma: A 3-year trial with recombinant interferon-alpha and 5-year follow-up." Melanoma Res. 2007 Jun;17(3):177-83.

14. Yang L, et al. "Combination therapy with coenzyme Q10 and creatine produces additive neuroprotective effects in models of Parkinson's and Huntington's diseases." J Neurochem. 2009 Jun;109(5):1427-39.

15. Yang X, et al. "Coenzyme Q10 Reduces beta-Amyloid Plaque in an APP/PS1 Transgenic Mouse Model of Alzheimer's Disease." J Mol Neurosci. 2009 Oct 16.

16. Sandor PS, et al. "Efficacy of coenzyme Q10 in migraine prophylaxis: a randomized controlled trial." Neurology 2005;64:713-715.


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Thursday, May 6, 2010

May 13 National Council on Disability Open Meeting

From the Chairman of the National Council of Disability:

Subject: Invitation to NCD's Board Meeting in Arlington, VA

May 5, 2010
Dear Friends and Colleagues:
As the new Chairman of the National Council on Disability (NCD), it is my pleasure to invite you to attend NCD's next meeting, which will take place at the Key Bridge Marriott, 1401 Lee Highway , Arlington , Virginia , on Thursday, May 13, 2010, from 9:00 a.m. until 4:45 p.m. This meeting is open to the public.
NCD is an independent federal agency whose purpose is to promote policies, programs, practices, and procedures that guarantee equal opportunity for all individuals with disabilities and that empower individuals with disabilities to achieve economic self-sufficiency, independent living, and inclusion and integration into all aspects of society. To carry out this mandate we gather public and stakeholder input; review and evaluate federal programs and legislation; and provide the President, Congress, and federal agencies with advice and recommendations.
The agenda will include a detailed discussion on the upcoming National Disability Policy Summit 2010, which will take place this July in Washington , DC .
A public comment session will be held on Thursday, May 13 from 11:30 a.m. until 12:15 p.m. Additional time will be allotted if there is sufficient interest. The toll-free call-in number is (888) 989-9825, and the pass code is "NCD Meeting." Input is encouraged and greatly appreciated. Individuals or organizations can also provide written comments by e-mail, fax, or mail. Written comments on disability-related issues of concern or interest can also be emailed at any time to
For more information, please contact NCD's Director of Communications, Mark Quigley, at or by telephone at 202-272-2004 (V) or 202-272-2074 (TTY).
We hope you will attend and participate.
Jonathan Young                                                         
National Council on Disability


Wednesday, May 5, 2010

Today's Webinar on Women's Pain

ME Manifesto

On the eve of the UK Election :
A  Manifesto for the ME Party .

Greg Crowhurst 5th May 2010
(Permission to repost)

Dear ME Patients and Carers,

Our circumstances are largely driven by the eroding of facts about ME
through the clever use of language and the compromising of truth;
miles away from any hope of proper research, treatment and a cure.

Why do you  have to endure condescension and dismissal by neurologists
, doctors, nurses , social workers, not interested in your
neurological symptoms?

Why do you have to endure inappropriate therapeutic techniques, for
your serious physical disease,  as "treatments"?

Why do you  have to endure the denial of the WHO categorising of
your neurological disease in the NICE guidelines and the promotion of
a biopsychosocial approach to your  disease, when it is not a mental
health illness?

Why do you  have to endure a complete lack of biomedical ME clinics
and this  dearth of biomedical ME clinicians ?

Why do you have to endure  no government backing for physical ME research?

Why do you have to endure  lobbyists and psychiatrists  who have
vested interests in insurance companies being allowed to be advisors
to the DWP regarding guidance in your  illness?

Why do you have to endure  psychiatrists being  allowed to
inaccurately define  your disease with too few symptoms and promote a
vague symptom of fatigue that is not the primary dysfunction in ME?

Why do you have to endure  the psychiatric lobby getting  away with
changing the name of the disease from ME  to CFS to ensure this wrong

Why do you have to endure  the neurological nature of this illness
being  dismissed and the  people who have serious neurological
symptoms being  denied a proper service because of that?

Why do you have to endure  inappropriate therapeutic techniques being
promoted by NICE when they are not wanted by people with ME as they
make them more ill and disabled potentially ?

Why do you have to endure  the vast array of unending ME symptoms ,
the fact that there are no drugs to alleviate them  because the
Government has wasted millions of pounds upon pointless  psychiatric
research ?

Why do you have to endure  the  isolation caused by people , both
medical, official and in society including families, who do not
understand this ME is a serious and severely disabling physical
illness ?

Why do you have to endure  living  in fear that you will not  get your
benefits ?

Why do you have to endure  having to accept you will get wrong
treatment or poor treatment or no treatment for your ME ?

Why do you have to endure  knowing that you are physically ill but
here is no appropriate treatment for you and there is not going to be
unless the untruths  pedalled by the psychiatric  lobby are  drowned
out and shown to be false ?

Why do you have to endure  knowing that there are few clinicians if
any who can actually help you ?

Why do you have to endure  knowing  that you have not had proper
biomedical ME tests and that you are not going to get them even though
there are tests that could be done ?

Why do you have to endure  the psychiatric lobby downplaying this
serious neurological illness , saying it is a mental health issue and
that no research or tests are necessary ?

Why do you have to endure  knowing that you need a proper diagnosis
and medical assessment  but if your GP or clinician or benefit agency
doctor is psychiatrically oriented you are simply not likely to get
the right help and support that you need ?

Why do you have to endure  knowing that as your neurological symptoms
worsen that there are no neurologists who are willing or interested to
help you ?

Why do you have to endure  knowing that going to hospital for tests is
most likely a waste of time and energy and will lead to disappointment
because they will  not do the right ME  tests ?

Why do you have to endure  knowing that if you need drugs for some
other condition they may well react badly because of your ME so you do
not know if you dare take them , yet there is no Consultant to advise
you or your GP ?

Why do you have to endure  knowing that the psychiatric promotion of
the biopsychosocial approach is  wrongly influencing doctors and
nurses who may have to treat you one day and will not understand how
very ill you are and will not therefore understand how to treat you
properly ?

The ME Party would immediately begin to unearth the conflicts of
interest of  industry sympathetic groups that perpetuate the needless
suffering of ME patients.(Walker 2008).

The ME Party would immediately cease all negotiations and wasteful
Government  involvement of with the Wessely and associated  Schools of
Psychiatrists ,Therapists and "Quack Busters". To argue science  with
them is like arguing reality with Alice in Wonderland as she falls
through the looking glass. (Walker 2008)

The ME Party would seek an international agreement to end the
destructive  global practice of "policy " – based medicine  usurping
"evidence" - based medicine.

The ME Party will not tolerate the ongoing corporate takeover and
denial of ME any longer and will put an immediate end to the corporate
–led health care system that is being introduced rapidly  into the UK,
against a background of increasing social control and state

The ME Party will cease all funding to any patient representative
group that has  formed a partnership with those  that deny ME exists.

The ME Party will establish an independent scientific committee to oversee all
aspects of ME research with full backing and make full  funding and
backing for XMRV research a priority. (Clegg 2010)

…..oh and .the immediate  reinstatement of Sarah Myhill, the complete
dismantling of NICE…

Members of the ME Party  are currently occupying the GMC, MRC,  Kings,
Barts, NICE.....(cf Phillips 2010)

All of us, can and must  dream .


Clegg N (2010) in Greensmith J (2010) Open letter to Esther Rantzen,
when Independent candidate for Luton South, on behalf of the M.E.
Community Co Cure 4 May 2010.

Phillips T (2010) Battling for the powerless ordinary citizen Eastern
Daily Press, May 1 2010

Walker M (2008) Cultural Dwarfs and  Junk Journalism . Slingshot
Publications, London


Tuesday, May 4, 2010

Sexism and CFS

Permission to repost

Dear All,

Below is my comment provided to the APA.

Best Wishes,
Peter Kemp

Dear Members of the APA DSM-V Review Panel,

Re:  Concerns regarding any move to categorize Chronic Fatigue Syndrome (CFS) as a Functional Somatic Syndrome.

This matter presents numerous issues of scientific accuracy, vested interests, professional credibility and public trust which I imagine others will raise with the panel, so I will address issue of Gender Prejudice which I believe is relevant.

I note with interest that the DSM website states (1):

"…the Gender and Cross-Cultural Study Group has tried to determine whether the
diagnostic categories of mental illness in DSM need changes in order to be sensitive to the
various ways in which gender, races and culture affect the expression of symptoms."

I find it troubling that the APA appear to consider it appropriate to lump together Gender and Cross-Cultural issues.  There may be some cultural issues that include aspects of gender, but purely gender issues are nothing to do with cross-cultural issues and laws protecting equality in these matters are separate, as they should be.  It would be ridiculous if people living in a civilized democracy considered any gender prejudice they encountered to be automatically associated with culture rather than originating from outdated discriminatory attitudes.  By appointing a Study Group that apparently combines these completely different issues the APA seem to be guilty of such an attitude.

The US Dept of Health and Human Services states: "Women are four times as likely as men to develop CFS" (2).  This raises the question of discrimination which I believe the panel should respond to.

E.g.; Dr Peter Hudgson was a Consultant Neurologist at the Newcastle General Hospital and stated on camera (3):

"I don't know what M.E. is, but what I'm absolutely certain is, it is not an organic illness.  I don't want to make too much of the sexist issue, but, er, something like four-fifths if not more of the people I deal with are women in early middle age who have unsatisfactory marriages; who have children that are making life difficult for them…"

Disregarding the contradictions in these remarks they appear to reflect a prejudice that I believe underlies the attitude of some who seek to psychologise CFS. 

Of the many people with CFS that I know personally only a small percentage fit the stereotype that Dr Hudgson had to 'deal with'.  Yet so entrenched is this stereotype of the 'nervous housewife' that I find this prejudice is widespread.

Johnson (4) remarks on an interview with the CDC's Larry Schonberger:

"It was apparent Schonberger believed that the entity his division would go on to name "cfs" was less a disease than a manifestation of depression in women… Doctors who saw patients, even Harvard docs like Anthony Komaroff, were anathema to Schonberger and his staff; such doctors were rendered unreliable by their bias in favor of the disease existing. Agency staff considered clinical expertise equivalent to clinical ignorance: after all, if you thought depressed, hysterical women had an organic disorder that required medical attention, how credible could you be?"

Prejudice against women in the medical professions is nothing new and is, I suspect, so normalized as to make rational thinking about women's health issues nigh impossible for male-dominated institutions.  I do not mean this as a criticism even though this is clearly an unsatisfactory situation; I am simply referring to what is practically feasible.

I do not think it necessary that the review panel comprise 80% women to match the percentage of women diagnosed with CFS; but I do consider it essential that at least 50% of any panel considering this item for the DSM should be women.  It would be sexist to convene a panel that did not adequately represent the views of women.  Classifying CFS as a somatization disorder would lead to people with CFS being re-diagnosed as neurotically somatizing rather than suffering from a debilitating illness with an as yet, incompletely elucidated etiology.  Whether the APA like it or not, this would be viewed as, and may in fact be - sexual stereotyping.

The fact that men are also diagnosed with CFS does not obviate the gender issue, it may rather contribute to it by obscuring the psychological issues of those who seek to subjugate women.  It is possibly noteworthy that in the Middle Ages, depending on region, between 5% and 25% of people tried for witchcraft were men.  This does not alter that fact that the persecution of witches was a gender crime.

If those whose vested interests lie in categorizing CFS as a mental illness succeed in swaying the APA, I believe this would be viewed as sexist judgment against women.  If such a judgment were passed by a male dominated panel this would be completely unacceptable.

Peter Kemp MA (Counselling and Psychotherapy Research)


Sunday, May 2, 2010

Dr. Bell makes a personal appeal to send funds to WPI to speed progress of resea

Dr. Bell makes a personal appeal to send funds to WPI to speed progress of research
David S. Bell MD, FAAP
Lyndonville, NY 14098

May 1, 2010

To my friends with ME/CFS,

I would like to put out a personal appeal for funds to be sent to the Whittemore-Peterson Institute (WPI) in order to speed up the progress of the current research. Here is my reading of a very complex situation.

Medical authorities, educational institutions, governmental agencies, and most practicing physicians have disrespected and minimized CFS in just about every way possible, from creating an insulting name for the illness to advising extreme caution in treatment, except cognitive behavioral treatments.

It is easy to dismiss my remarks to follow by saying that I am biased. And it is true, I am very biased and for twenty-five years I have quietly sat on the sidelines believing that science will win out and true progress will be made. I am beginning to think this has been a great mistake. The profession I love has failed miserably.

In 1985 an outbreak of CFS hit Lyndonville NY and affected 210 persons, 60 of whom were children. The official response from the CDC and the New York Health Department was that this was mass hysteria. No one talked with a single patient. In 1990 I worked with Dr. Elaine DeFreitas and Dr. Paul Cheney and a retrovirus was found and the material published(1). A second paper had been accepted by PNAS and contained a photograph of C-type retroviral particles from a tissue culture of spinal fluid of one of the children in the Lyndonville outbreak. This paper was suddenly pulled and not published after a couple of flawed negative papers. A complete description of these troubled times is in Osler'sWeb by Hilary Johnson. The funding for our studies was pulled and all work on this abruptly stopped.

I think the same tactics are being employed to hamper the current work on XMRV by the WPI. The WPI is a private organization and, as I understand it, no federal grants or funding has been forthcoming. There have been three negative PCR-only studies, which have established only that CFS cannot to be superficially studied. At this time no study that has attempted to replicate the WPI study has been heard from. Many CFS research organizations have declared publically that "XMRV is a dead issue."

Nothing is farther from the truth. I cannot predict the future, but my fear is that the current political and scientific organizations who do not want to see retroviral involvement will attempt to stifle studies on XMRV in CFS. Huge amounts of money are spent on studies on cognitive therapy, and studies proving that CFS is heterogeneous (you can argue that polio is heterogenous).

We have not heard from the CDC, other than the inappropriate comment that this was not likely to turn out to be anything, made right after the Science paper publication in October 2009. We are now eight months later and not a peep. Maybe they are finding XMRV and want to be very careful. Maybe they haven't looked and are assuming that this heretical idea will blow away. Eight months? And the Band Played On.

It is possible that thirty other labs are finding XMRV in CFS or that no one else in the world is even looking for it. Science requires that labs do not disclose their findings prior to publication and I agree with this rule. But is the WPI going to be isolated by the scientific community and wither away because of lack of funding? Is XMRV going to become more of the compost of CFS research?

But there is an alternative. We cannot wait ten years for science to grind outs its conclusions. Every person in the world who believes that CFS is important should send $10 to the WPI. I plan to send $10 today. It may not be much, but it is a start. There may be 10 million persons in the world with CFS. Lets see, that's…I need a calculator. May 12 is our day. Lets do this.

After 25 years of work in this field I do not have much. But I have my integrity. I feel that WPI has made an important discovery and I feel they are an ethical organization, they are not padding their pockets. But I also have my fears. And the greatest fear of all is that their discovery may not be appropriately followed up.

For the 9,999,999 other people out there who think CFS is both real and important, send $10 to: Whittemore Peterson Institute, 6600 N. Wingfield Parkway, Sparks, NV 89436.

Thank you.

David S. Bell MD, FAAP

1. DeFreitas E, Hilliard B, Cheney P, Bell D, Kiggundu E, Sankey D, et al. Retroviral sequences related to T-lymphotropic virus type II in patients with chronic fatigue immune dysfunction syndrome. Proc Natl Acad Sci. 1991;88:2922-6.

Jazz Great Keith Jarrett Discusses Living with Chronic Fatigue Syndrome


List of people with chronic fatigue syndrome


'Whittemore Peterson Institute announces search for Medical Director'

'Whittemore Peterson Institute announces search for Medical Director'
Planned transition paves a smooth path for the fall opening of the new

Reno, Nev. – As part of a planned transition, the Whittemore Peterson
Institute (WPI) announces the national search for a full time Medical
Director as Dr. Daniel Peterson retires from this position. Dr.
Peterson, a pioneering physician in describing methods of diagnosing,
managing and treating "Myalgic Encephalomyelitis (ME/CFS)", was one of
the first physicians to identify this disease in the United States.
Annette Whittemore, founder and president of the Whittemore Peterson
Institute, remarked, "Dr. Peterson was a central figure in the
establishment of the Whittemore Peterson Institute. We are deeply
grateful to him for his significant advice and support through the
development of the Institute."

Dr. Peterson will continue his internal medicine practice in Incline
Village, Nevada. "I am extremely proud to have been a part of the
creation of this medical research Institute which promises to bring
exciting new answers to patients with complex neuroimmune diseases,"
stated Dr. Peterson.

The WPI will soon begin a national search for a new full-­‐time
medical director and practicing physician with extensive experience in
infectious disease, clinical trials and medical management.

The Whittemore Peterson Institute will move into a new
100,000-­‐square-­‐foot state-­‐of-­‐the art research and medical
facility, the
Center for Molecular Medicine, at the University of Nevada in the fall
of 2010. Led by the research of Dr. Judy Mikovits, WPI will be the
first Institute in the world dedicated to neuro-­‐immune diseases
integrating a comprehensive program of patient treatment, basic
research, clinical trials and medical education.

To learn more about the institute and ongoing research, please visit


About The Whittemore Peterson Institute

Located within the University of Nevada School of Medicine's Center
for Molecular Medicine, the Whittemore Peterson Institute will be the
nation's first comprehensive translational research facility dedicated
to the research and treatment of neuro-­‐immune diseases when it opens
in September 2010.