Friday, July 30, 2010

Research Shows Controversial Illness is Real and Treatable

Research Shows Controversial Illness is Real and Treatable

CHARLESTON, S.C., July 27 /PRNewswire/ -- Today, Policyholders of
America (POA) released a consensus statement written by treating
physicians and researchers in the field on the mechanism and
treatment of illness found in people sickened by exposure to
water-damaged buildings. This illness has been the subject of heated
debate that has resulted in harsh allegations being lobbed at
patients by experts hired by industry to cast doubt on the legitimacy
of the illness. Today however, so-called "Sick Building Syndrome" is
now unveiled to be very real; it's a chronic inflammatory illness
that is easily identified with available lab testing and treatable
using FDA-approved medications.
  The research paper is the first in
the field written by physicians with experience treating the
illness.  Thorough and rigorous, the paper references governmental
agency opinions, current published literature and an extensive review
of patient data that has made this subject a political and legal hot
potato obstructing patient care.

Nearly six months ago, a distinguished and credentialed panel of
medical doctors and researchers, all from outside of POA's
membership, were assembled and charged with developing a consensus
statement on the diagnosis and treatment of a growing public health
problem across America:  illness acquired from water-damaged
buildings. The consensus statement was then peer-reviewed by other
medical doctors and researchers.  The research paper is being
released to help physicians and their patients understand the
mechanisms, symptoms, diagnosis and treatment protocols available for
sickened patients.

After reviewing hundreds of peer reviewed studies, analyzing hard
data from research conducted on thousands of patients, and
incorporating published results of treatment of thousands of
patients, the authors embarked on this massive assignment with eyes
wide open -- knowing that if the resulting research did not lessen
liability of the powerful stakeholders involved, industry would
likely attempt to discredit the findings.

With the research now concluded, the mysterious illness now has a
name: Chronic Inflammatory Response Syndrome or "CIRS", and when the
cause of the illness can be directly linked to a water-damaged
building, or  ("WDB"), it is called "CIRS-WDB".

Says Co-Author, Ritchie Shoemaker, MD, of Pocomoke, Maryland, "This
statement builds consensus by debunking false ideas about illness
from water-damaged buildings and establishes the basis by which
practicing physicians can assess the complex illnesses these patients
experience. We don't have to guess what might be wrong when we have
the labs to prove what is abnormal.
  Patients don't have to suffer
any longer after being given incorrect diagnoses such as allergy,
stress or depression."

Co-authors included Laura Mark MD from Williamsburg, Virginia; Scott
McMahon MD from Roswell, New Mexico; Jack Thrasher PhD of Oakland,
California and Carl Grimes HHS, CIEC, President of the Indoor Air
Quality Association, from Denver, Colorado.

The 161-page research paper can be found, in its entirety, at:

A layperson's summary of the research paper follows:
    * CIRS-WDB is a multisystem, multi-symptom illness acquired
following exposure to the interior environment of WDB.  It exists as
a recognizable syndrome that is identifiable and treatable;
    * CIRS-WDB is identified as immunologic in origin, with
differential inflammatory responses seen according to (i) genetic
susceptibility and (ii) unique aspects of host innate immune responses.
    * CIRS-WDB consistently involves loss of normal control of
inflammation and the resulting "inflammation gone wild."
    * Treatment of human illness that is acquired following exposure
to the interior environment of WDB involves a series of steps, each
correcting the physiologic problems one by one.
    * CIRS-WDB can be readily identified by current methods of
clinical diagnoses. This process of diagnosis is supported by (i)
identification of unique subsets ("clusters") of symptoms found in
epidemiologic cohorts of affected patients; (ii) identification of
unique groupings of biomarkers, such as genetic markers,
neuropeptides, inflammatory markers, and autoimmune findings.
    * Patients with CIRS-WDB are often given incorrect diagnoses such
as depression, stress, allergy, fibromyalgia, Post Traumatic Stress
Disorder, and somatization.  Those conditions, when actually present,
will not improve with therapies employed in CIRS-WDB.
    * CIRS-WDB is acquired primarily from inhalation of microbial
products that are contaminants found in the complex mixture of WDB.
    * Re-exposure of previously affected patients will bring about
immunological host responses that are enhanced in their rapidity of
onset and magnitude, such that these patients are "sicker, quicker."

Melinda Ballard, POA's president said, "About 25% of our members have
experienced health effects after exposure to toxigenic mold and other
organisms in their homes and of those, the vast majority put on the
treatment protocol outlined in this paper have reported back to us
that their symptoms have either subsided or vanished altogether.
While our experience with these members is purely anecdotal, this
research paper is not; the findings are irrefutable.  Most
importantly, the rigorous science in the paper offers hope to so many
who are in desperate need of an effective and inexpensive treatment.

POA is a nonprofit educational organization that, at no charge, helps
policyholders receive adequate payment when a property insurance
claim is filed. Since it was founded in 2001, more than 2.5 million
people have joined, an unfortunate reflection on the manner in which
claims are often handled by insurance companies. Its web address is:
POA is a member of ACHEMMIC (the Action Committee on the Health
Effects of Mold, Microbes and Indoor Contaminants), a group of
scientists, researchers, physicians, indoor air quality experts,
environmental engineers, industrial hygienists, structural engineers,
teachers and advocates working to advance the understanding of the
health effects of mold, microbes and indoor contaminants. ACHEMMIC's
website is


Melinda Ballard

Policyholders of America

(843) 367-4574

SOURCE Policyholders of America


Wednesday, July 28, 2010

EmpowHer CFS resources

Jody Smith at EmpowHer has a list of the top 10 sites for CFS patients
wishing to learn more about XMRV and this neuroimmune disease. They range
from a WSJ blog to patient sites to the award winning blog of a virology
professor. Other sites have been added in the comment section.

Tuesday, July 27, 2010

Immunological Terms You Should Know


Push and Pull over CFS,0,6870104.story?page=2

Push and Pull Over Chronic Fatigue Syndrome
Study that linked chronic fatigue syndrome to a retrovirus draws doubts.

Chicago Tribune
July 27, 2010

Both Hillerby and Mikovits say the team's paper was closely examined by peer reviewers looking for evidence of contamination — and that the researchers also found evidence of an immune response to XMRV, something they said would not occur in a contamination situation.

Other research teams may not be finding XMRV in chronic fatigue syndrome patients because they are not doing the experiments in the same way as the institute, Mikovits said.

In January, the Reno Gazette-Journal quoted her as saying one British team had "skewed" its study design to avoid finding XMRV in patient samples. "Some are not trying in completely good faith," she said in an interview with the Tribune.

Dr. Jos W.M. van der Meer of Radboud University Nijmegen Medical Centre in the Netherlands, a co-author of one of the studies that failed to replicate the findings, told the Tribune: "I don't like these kinds of fights. I would prefer to have scientific debates on the scientific level."

Sexism suggested

Driven by what she says is the urgent need for action on XMRV, Mikovits has publicly tied the retrovirus to disorders including atypical multiple sclerosis — though she has not published data supporting these claims.

Last month, she spoke at the Autism One conference in Chicago about her new research on XMRV and autism, joining a lineup of speakers that included disgraced autism researcher Andrew Wakefield, who recently lost the right to practice medicine in Britain for serious professional misconduct.

Mikovits wrote in an e-mail that she realizes presenting at the conference "could destroy what is left of my career" but felt she had to accept in order to help sound the alarm.

She accused researchers and government agencies of being more interested in previously published research linking XMRV and a form of prostate cancer than in her work. Chronic fatigue syndrome affects women at four times the rate of men, according to the Centers for Disease Control and Prevention.

"So research dollars will go for XMRV-infected men with cancer but not women with CFS," she wrote in an e-mail. "[This] left me no recourse but to play the autism card! Will they ignore the children too?"

Virologist Vincent Racaniello of Columbia University said raising an alarm about XMRV would be premature given how little is known about the retrovirus.

"Her claim has to be validated," Racaniello said. "Otherwise, not only is money wasted, but people can be harmed, physically and psychologically."

Dr. Jamie Deckoff-Jones, a physician in Santa Fe, N.M., and her daughter both suffer from chronic fatigue syndrome and have been taking AZT, raltegravir and tenofovir. Deckoff-Jones said she is aware of the risks but feels ready to accept them.

"I am still a scientist at heart," she wrote in an e-mail. "But life sometimes forces leaps of faith."

Deckoff-Jones, whose blog about her treatment includes dosages, said other people interested in trying anti-retrovirals have contacted her. "Some of us simply don't have the time to wait," she said. <cont>

UNUM loses in court again


WARDLAW, Circuit Judge.

The Metropolitan Life Insurance Company ("MetLife") appeals from the
district court's judgment awarding Michael Mitchell long-term disability
("LTD") benefits and attorneys' fees, in an action arising under the
Employee Retirement Income Security Act of 1974 ("ERISA"), 29 U.S.C. §§ 1001
*et seq.* MetLife is the current insurer and administrator for the LTD
benefits plan ("the Plan") provided by Mitchell's employer, CB Richard
Ellis, and it insured and administered the Plan at the time that Mitchell
filed his claim for benefits. Unum Life Insurance Company of America
("UNUM") was the insurer and administrator of the Plan at the time of onset
of Mitchell's claimed disability in October 2003.

*Because we conclude that the district court correctly held that Mitchell
was eligible for benefits under MetLife's policy, and because MetLife failed
to cross-claim for indemnification from UNUM in the district court action,
we affirm.*


*A. Mitchell's Employment and Disability*

Since 1983, Mitchell has worked as a commercial real estate broker at CB
Richard Ellis. In February 2001, Mitchell was first diagnosed with restless
leg syndrome after he suffered symptoms of fatigue. Over time, Mitchell's
condition grew more severe. In October 2003, he was diagnosed with major
depression, chronic fatigue syndrome, restless leg syndrome, REM-related
obstructive sleep apnea syndrome, and hemochromatosis. Although Mitchell
continued to work full time hours, his physical condition deteriorated to
the point where he could not effectively perform in his job by March 2004.
Because Mitchell's disability reduced his capacity to produce sales, his
compensation, based entirely on commissions and bonuses, decreased
substantially over time as his disability grew more severe: he earned
$179,678 in 2001 and $243,857 in 2002, but only $29,329 in 2003 and $12,585
in 2004.
*B. The Plan*

CB Richard Ellis provides LTD benefits to its employees under an employee
benefit plan governed by ERISA. From January 1, 2000, until December 31,
2003, CB Richard Ellis funded the Plan by purchasing insurance from UNUM,
which served as the insurer and administrator of the Plan. On January 1,
2004, MetLife replaced UNUM as the insurer and administrator of the Plan. At
that time, MetLife issued a new insurance policy, which specified that it
held discretionary authority to determine a participant's eligibility for
benefits. The two insurers' coverage provisions differed, particularly in
their definitions of "disability."

Nos. 08-55277, 08-55686

United States Court of Appeals, Ninth Circuit.

Argued and Submitted December 11, 2009—Pasadena, California.

Filed July 26, 2010.

*Why we need to start treating ME much more seriously* Opinion: Dr Neil Abbot

*Why we need to start treating ME much more seriously*

Opinion: Dr Neil Abbot

Herald Scotland

27 Jul 2010

*David has been ill for 21 years.*

An engineer and a keen squash player, he started to feel unwell and got
progressively worse over several weeks until he felt dreadful – in his own
words, "dead on my feet."

Months later, a consultant diagnosed David with post-infectious fatigue
syndrome, now called ME/CFS. Developing the illness – extreme exhaustion,
headaches and aching limbs – forced him to leave work at the age of only 29
and return to the family home near Kirkcaldy.

The GP's assurances that he would "recover with time and rest" kept him
going for a while, but as the months wore on, he began to realise that he
was in for the long haul.
And what a haul it's been. Thin, drawn, unable to
work, and largely confined to home for two decades, David says: "I've
learned to cope, but coping is not a cure. And without my family's support I
don't know where I'd be."

You rarely hear about the Davids, yet it's estimated that about 20,000
people in Scotland have ME/CFS. The condition is characterised by physical
and mental exhaustion following even moderate exercise, but most people also
have muscle pain, gastrointestinal problems and recurring flu-like symptoms,
and a significant minority are house or bedbound. Diagnosis is usually made
after the most common alternative diagnoses, like cancer or diabetes, have
been excluded. However, for many a diagnosis is only the start of their
problems. They have been given a label for which there is no known cause, no
specific treatment and an uncertain outcome.

Indeed, new patients, rather alarmingly, find two black holes awaiting them.  The first is lack of credibility. The enduring stigma of "yuppie flu" and confusion with general tiredness means the public perception of ME/CFS is poor. Patients' families can, therefore, be unsympathetic, as can doctors.  Indeed, studies show that roughly half of GPs don't believe the condition actually exists.

This is in spite of official and authoritative confirmation that the condition is genuine. The World Health Organisation classifies post-viral ME/CFS as a neurological illness. NICE states that symptoms can be just as disabling as multiple sclerosis, congestive heart failure and other chronic conditions.

The second black hole relates to treatment. Since the underlying causes of
the illness remain unresolved and no treatment exists, prescriptions are
given for particular symptoms, such as chronic pain or sleep problems. This
can cause patients to become disillusioned, and many tell me they have not
seen a GP for many years, preferring to struggle on alone rather than face
what they see as a lack of understanding.

Failure to appreciate the serious nature of the illness coupled with a lack
of specialist knowledge about ME/CFS is not only distressing for sufferers,
it impacts directly upon their quality of life.

This situation could be transformed if Scotland had an ME/CFS centre of
excellence. This would give GPs a place to refer patients in the early
course of their illness for expert neurological and biomedical assessment.
This is essential for a proper diagnosis since we know from studies in
England that about 40% of people diagnosed by their doctors end up getting alternative treatable diagnoses (e.g., muscle, connective tissue, endocrine disorders, sleep apnoea, depression and anxiety) at specialist ME/CFS clinics. Moreover, the centre would house professionals who have a detailed
knowledge of the condition and could refer to other specialists and receive
reports back, creating over time a large reservoir of clinical expertise.

Importantly, it would also provide a validated "research resource" of
properly diagnosed patients (something that doesn't exist at the moment)
contributing to investigations into the origin of the condition across the
world which would, hopefully, ultimately lead to treatments.

We see a similar model working successfully in the ME/CFS service serving
the north-east of England. Based in Newcastle, it's linked to world-class
research facilities at the nearby university. Government willpower and
backing would be required for a similar facility in Scotland, and is, I
believe, long overdue.

Dr Neil Abbot, ME Research UK (

Monday, July 26, 2010

Disabilities debate rages 20 years later -

20 years ago today the ADA was signed.  Most disabled people are still unemployed, and unemployable, not because they don't want to work, but because no one will hire them.
"According to the Census Bureau, 54 million Americans have a disability. That's almost one in five people. More than three million 15 years or older use a wheelchair."