Wednesday, February 29, 2012

Seven Charged in Texas Medicare and Medicaid Fraud - NYTimes.com

 
Since 2009, Medicare fraud strike forces — teams that are run by the Department of Justice in nine locations around the country — have charged more than 800 defendants with fraud totaling more than $2.2 billion, according to department officials. The case represents the largest fraud amount orchestrated by a single doctor in the history of the Medicare strike force operations, federal officials said.
 
* * *
Despite what some people would have you believe, Medicare fraud is not perpetrated by the poor patients, it's done by the rich doctors.  Eliminating Medicare would hurt the victims more than the criminals.
 

Top 10 Prescription Drugs and Natural Remedies - Prevention.com

Top 10 Prescription Drugs and Natural Remedies - Prevention.com

Truth Is An Absolute Defense To Libel | X Rx Blog

WPI Seeks Millions from Mikovits

http://www.rgj.com/article/20120228/NEWS/120228030/Whittemore-Peterson-Institute-seek-millions-damages-from-fired-researcher

Whittemore Peterson Institute seek millions in damages from fired researcher
Written by Martha Bellisle
8:01 PM, Feb. 28, 2012


Now that a judge has ruled in favor of the Whittemore Peterson
Institute in a civil case against a researcher who took a laptop,
notebooks and files after she was fired, the two sides are fighting
over damages.

The Whittemore Peterson Institute for Neuro-Immune Disease made world
headlines in 2009 after Dr. Judy Mikovits lead a team that discovered
a new retrovirus that could help treat chronic fatigue syndrome. But
the research was discredited last year and Mikovits lost her job. The
institute claimed she stole important research materials when she
left, a claim she denied.

But Washoe District Judge Brent Adams signed a default judgment last
month in favor of the institute, saying Mikovits failed to comply with
his rulings on releasing materials in the case.

A hearing on damages is expected this week. The institute is seeking
millions in salary and research costs as well as lost donations, while
Mikovits' lawyer, Dennis Jones, said her actions did not cause any
harm.

Criminal charges against Mikovits are pending, said her criminal
lawyer, Scott Freeman.

"At this point, Ms. Mikovits has returned all of the materials that
she had in her possession and they all are in evidence in the criminal
case," Freeman said. "The only reason the civil case was filed was
because she didn't give them up fast enough. But she has turned
everything over."

Meanwhile, the institute is defending itself against two lawsuits
filed by the Wingfield Nevada Group, owned by Harvey Whittemore's
former partners. The suits claim the institute owes Wingfield $1.7
million for using its staff and a company jet.

The lawsuits are just three on a list that Whittemore has been
fighting in recent weeks. His former partners, Tom and Albert Seeno
Jr. of Concord, Calif., claim he embezzled funds from Wingfield, while
Whittemore claims in another suit that the Seenos are guilty of
racketeering. Two banks also sued Whittemore for millions in unpaid
loans. And a federal grand jury is reportedly meeting Wednesday to
hear testimony on Whittemore's campaign contribution activities.

Following the judge's ruling on the claim against Mikovits, the
institute's lawyer, Tom Bowen, filed a list of documents in
preparation for a hearing on damages, which indicates they want to be
refunded all costs associated with Mikovits' work.

One document shows Mikovits was paid $693,485 since starting with the
institute in 2007. Another lists research costs totaling $2.3 million
and grant reimbursements that came to $655,838. The documents also
claim the institute saw a drop in donations of $133,100 after Mikovits
left.

Bowen also submitted copies of emails between Mikovits and various
colleagues as well as a statement by Max Pfost, who worked with
Mikovits at the institute. After she was fired, she directed Pfost to
go into her office and collect her materials, he said.

"I expressed some skepticism to Mikovits about whether she could take
the research and samples and stated that Dr. (Vince) Lombardi would
take over the projects and continue on behalf of WPI," Pfost said in
the affidavit. "Mikovits stated that she was in charge of the research
at WPI so technically it was her research and she could move it
somewhere else at any time."

Pfost said he went to WPI on Sept. 30 and took between 12 and 20
notebooks for Mikovits. He gave them to Mikovits on Oct. 16, he said,
and then she drove to Southern California.

"Mikovits informed me that she was hiding out on a boat to avoid being
served with papers from WPI," Pfost said in the affidavit. She was
arrested Nov. 18 in Ventura, Calif., after the Washoe County District
Attorney's office filed a criminal complaint alleging she stole
computer data.

Mikovits' lawyer filed a trial statement last week in the WPI case
asking the judge to ignore the list of costs associated with salary
and research when considering damages in the case.

"WPI does not allege that Dr. Mikovits did anything to harm WIP while
she was employed," the statement said. "All of the alleged tortious
conduct occurred after WPI terminated Dr. Mikovits."

It also said that people who decided to stop making donations to the
institute did so only after Mikovits was fired. To support that claim,
Jones attached 20 emails from former supporters who said they opposed
the firing and would no longer make donations to the institute.

"I would like to explain why I ceased donating to the Whittemore
Peterson Institute," said Paul Kayes in one email. He said he donated
every month "but when Dr. Mikovits was sacked" he said he lost faith
with WPI and decided he would no longer support the institute.

Another former donor, Annabel Luery, said the Whittemores were to
blame for WPI problems.

"If the WPI is suffering from a lack of revenue then it is because of
the actions of the Whittemores and certainly not because of anything
Dr. Mikovits either said or did," Luery said in an email to Mikovits'
lawyer.

Sunday, February 26, 2012

Reminder

Yes, I'm once again behind on posting info to the blog.  I am a CFS patient with limited energy.  My top priority is my paying work.  My next priority is household chores.  This blog is something I do when I have time and energy to spare.  It's a benefit to others but provides no benefit to me -- I don't get paid to do it, other than the psychic compensation of hearing from people the blog has helped -- so it is not and never will be my top priority.
 
I do my best, but sometimes life gets in the way.
 
Sometimes life forces its way in.  I am disabled and on a limited income.  Hired help either doesn't do the chores at all or does them in ways that I have to spend time undoing them, so for the most part, it's wasted money.
 
Following a big storm last month, I was cited by the City because my yard wasn't cleaned up promptly.  The friend I called to help picked a fight so he could stomp off leaving the work undone.  So everything else in life had to be put on hold for several days while I did what a healthy person could have done in a couple hours.  And since that took several days out of my schedule, I fell further behind on things like this blog.
 
So all I can do is ask for your patience as I find time to read through the backlog of information to look for things worth sharing here.  I know some people would like keeping up this blog to be my top priority, or, in fact, my only obligation, but that's not going to happen.

New info from Dr. Lerner

Note: The Stanford School of Medicine has a relatively extensive site
regarding ME and CFS as well as implicated pathogens. This is but, one
page and resource. A tip of the hat to XMRV Global Action.

Herpes Viruses - Experts and Research
Stanford School of Medicine/Infectious Diseases/Chronic Fatigue


A. Martin Lerner, MD
president of the Treatment Center for CFS

Lerner is an internist and infectious disease specialist. Before
beginning his practice, Lerner had background in Infectious Diseases,
particularly viral diseases, and was aware of virus-induced heart
disease.  Soon after beginning his practice in 1982, Lerner noticed
that the symptoms of CFS resembled a prolonged infectious
mononucleosis.  Infectious mononucleosis may be caused by one of three
herpes viruses: the Epstein-Barr virus (EBV), Human Herpesvirus 6
(HHV-6) or the Human Cytomegalovirus (HCMV).  These three
mononucleosis syndromes are self-limited; that is, patients recover.

Lerner began to question… Could the Chronic Fatigue Syndrome be a
prolonged mononucleosis syndrome?  Everyone with heart conditions is
fatigued.  Could the Chronic Fatigue Syndrome also involve the heart?

He began to look at patients with CFS for evidence of involvement of
the heart, and the three mononucleosis viruses (EBV, HHV-6, and HCMV).
The findings have been remarkable.

Abnormal Holter Monitoring

Holter monitoring records electrical activity in the heart, producing
an electrocardiogram. The T-wave of the electrocardiogram shows the
repolarization (electrical recovery) of the left ventricle after every
heartbeat in preparation for the next heartbeat. The normal T-wave is
upright. With increased heart rates and exercise, abnormal T-waves
occur.

Abnormal T-wave flattening and inversions are found in patients who
meet the US Center for Disease Control's diagnostic criteria for CFS.
This finding has been tested statistically, and at least 90% of
patients with CFS have abnormal electrocardiograms.  This abnormal
electrical activity in the heart is thus a biomarker for CFS. If a
fatigued patient lacks abnormal T waves, CFS is less likely to be the
cause of the patient's fatigue.1, 2, 3

Abnormal Contraction of the Heart

Patients with CFS who have been ill for months may have abnormal
cardiac dynamics.  This means that the rhythmic, symmetrical,
harmonious closure of the left ventricle is asymmetric.  This
indicates that there is some weakening of the left ventricular muscle.
(Patients with coronary artery disease may also have abnormal left
ventricular dynamics.)  Of patients who have had CFS for one year or
more, approximately one in four has abnormal asymmetric cardiac
dynamics.  Fortunately, treatment with anti-viral medication can
reverse this heart muscle weakness. 4,5,6,7

Heart Biopsies Show Cardiomyopathy

Biopsies of the heart from CFS patients indicate a cardiomyopathy.3

Viruses

Active Epstein-Barr virus (EBV), active cytomegalovirus (HCMV), active
Human Herpesvirus 6 (HHV-6), or a combination of these viruses is a
common finding in patients with CFS.  In 1997, Lerner hypothesized CFS
is caused by 3 herpesviruses: EBV, HCMV and/or HHV-6. These three
viruses establish "latent" infection in B-lymphocytes,
monocyte-macrophage precursors, or T-lymphocytes respectively.  Virus
reactivation, and both abortive (40-90 gene products) and complete
(200 gene products) virus multiplication occur.  Therefore CFS
patients have been described as having continuing primary (initial
onset) or reactivated (reactivation of a previous virus)
infections.3,8,9,10

Collaborators

Lerner has been fortunate to attract a very talented group of
physicians interested in studying CFS with him. Full list of
collaborators


Jose G. Montoya, MD,
associate professor of medicine in the Division of Infectious Diseases

Montoya is associate professor of medicine in the division of
infectious diseases at Stanford University Medical Center.  His
expertise is in infections of immunocompromised hosts and in the
laboratory diagnosis of toxoplasmosis.

His expertise in these two areas led him to postulate that CFS
patients with elevated titers against HHV-6 and EBV may be amenable to
long-term (e.g. ≥ 6 months) antiviral therapy. He proposes that the
humoral immune response to intracellular pathogens that persist for
the life of the host should be "low" and at a "steady" state as
suggested by Amanna et al.11

Thus, elevated titers for EBV and HHV-6 (e.g. EBV early antigen (EA) ≥
160 and/or HHV-6 ≥ 320) in CFS patients suggests the possibility that
these viruses have been reactivated and could be behind the complex
and unexplained symptoms observed in these patients.
He also postulated that in order to "control" this state of high viral
activation that the use of broad spectrum antivirals for a long period
of time would be necessary despite that previous reports had suggested
that antiviral therapy had not been successful.  In the 1980's Straus
et al. reported that five weeks of acyclovir (1 week intravenously
plus 4 weeks orally) had no clinical benefit to CFS patients infected
with EBV.12

However, Montoya began treating CFS patients with elevated titers
against EBV and HHV-6 and noted that approximately 60 to 70% of the
patients had a significant clinical response. For these patients he
has primarily used valganciclovir for 6 or more months.  The results
of a randomized, double blind, placebo controlled trial are being
analyzed at this time and a final manuscript to be submitted for
publication is expected shortly.

Other subgroups of CFS patients have been identified and treated by
Montoya and the Stanford CFS team.  CFS patients in whom elevated
antibody titers against Herpes Simplex Virus-1, Herpes Simplex
Virus-2, Q fever, Mycoplasma pneumonia, Chlamydia pneumoniae, and
Varicella Zoster Virus or any combination of those, have been
identified and treated accordingly appear to have significantly
improved.

However, it is important to emphasize that in some patients, antibody
titers against all the proposed pathogens have been found to be
negative or low.  Many of these patients, as well as approximately 30
to 40% of the patients with elevated titers, have not responded to
long-term antimicrobial therapy.

Another subgroup of CFS patients that has been identified at Stanford
is that of patients with very high (≥ 106) PCR copy numbers for HHV-6.
Several of these patients have been found to have HHV-6 integrated
into their chromosome, which is considered an extremely rare
occurrence among herpes viruses.  These patients also have responded
clinically to antiviral therapy but they have required higher does and
longer courses.

PLEASE READ THIS IMPORTANT DISCLAIMER REGARDING THIS PORTION OF THE WEBSITE:

The information and opinions contained in this portion of the website
are intended for educational and research purposes only. It is not
intended for the medical management of patients and does not
necessarily reflect the views of Stanford University or Stanford
Hospital and Clinics.

Only a physician familiar with a patient's individual medical history
can make medical judgments and give that patient specific medical
advice.

CITATIONS:

1 Lerner AM, Lawrie C, Dworkin HJ. Repetitively negative changing
T-waves at 24-h electrocardiographic monitors in patients with the
chronic fatigue syndrome (left ventricular dysfunction in a cohort).
Chest. 1993; 104:1417-1421.

2 Lerner AM, Goldstein J, Chang CH et al. Cardiac involvement in
patients with chronic fatigue syndrome as documented with Holter and
biopsy data in Birmingham, MI 1991-1993. Infectious Diseases in
Clinical Practice 1997;6:327-33.

3 Lerner AM, Zervos M, Dworkin JH, Chang CH, O'Neill W. A unified
theory of the cause of chronic fatigue syndrome. Infectious Diseases
Clinical Practice 1997; 6:239-243.

4 Dworkin HJ, Lawrie C, Bohdiewicz P and Lerner AM Abnormal left
ventricular myocardial dynamics in eleven patients with the chronic
fatigue syndrome. Clinical Nuclear Medicine 1994;19:675-677.

5 Lerner AM, Dworkin HJ, Sayyed T, Chang CH, Fitzgerald JT, Beqaj S,
Deeter RG, Goldstein J., Gottipolu P and O'Neill W. Prevalence of
abnormal cardiac wall motion in the cardiomyopathy associated with
incomplete multiplication of Epstein-Barr Virus and/or cytomegalovirus
in patients with chronic fatigue syndrome. In Vivo. 2004;18:417-424.

6 Lerner AM, Beqaj SH and Deeter RG et al. A six-month trial of
valacyclovir in the Epstein-Barr virus subset of chronic fatigue
syndrome: improvement in left ventrical function. Drugs of Today.
2002; 38:549-561.

7 Lerner AM, Beqaj SH, Deeter RG, Fitzgerald JT. Valacyclovir
treatment in Epstein-Barr virus subset chronic fatigue syndrome:
thirty-six months follow-up. In Vivo. 2007 Sep-Oct;21(5):707-13.

8 Lerner AM, Beqaj SH, Deeter RG and Fitzgerald JT. IgM serum
antibodies to human cytomegalovirus nonstructural gene products p52
and CM2 (UL44 and UL57) are uniquely present in a subset of patients
with chronic fatigue syndrome. In Vivo. 2002;16:153-160.

9 Lerner AM, Beqaj S, Deeter RG, and Fitzgerald JT. IgM serum
antibodies to Epstein-Barr Virus are uniquely present in a subset of
patients with the chronic fatigue syndrome. In Vivo.2004;18:101-106.

10 S H Beqaj, A M Lerner, J T Fitzgerald  Immunoassay with
cytomegalovirus early antigens from gene products p52 and CM2 (UL44
and UL57) detects active infection in patients with chronic fatigue
syndromeJ Clin Pathol 2008;61:623-626.

11 Amanna IJ, Carlson NE, Slifka MK. Duration of humoral immunity to
common viral and vaccine antigens. N Engl J Med 2007 Nov
8;357(19):1903-15

12 Straus SE et al. "Acyclovir treatment of the chronic fatigue
syndrome. Lack of efficacy in a placebo-controlled trial." N Engl J
Med. 1988 Dec 29;319(26):1692-8.


http://chronicfatigue.stanford.edu/infections/herpes-experts.html

Tinkerbell and Hummingbird Blog

*Please repost*

I'm so excited, the 'Tinkerbell and Hummingbird M.E. Blog' is now live!

This blog is the brainchild of severe M.E. patient Alison Bell (from the
UK), and she kindly invited me along for the ride. The blog aims to talk
about all sorts of issues surrounding M.E. and how it affects our lives
and what living with M.E. is like - rather than just giving the medical
and political facts like HFME does. Alison has done a great job putting
the site up.

Alison and I really hope this new blog is somewhere MEites will enjoy
spending some time! The first 2 blog posts are up and slowly but surely
more will be added over the coming months.

See:

http://thetinkerbelleandhummingbirdmeblog.blogspot.com/2012/01/in-depth-about-us-and-this-blog.html

plus

http://thetinkerbelleandhummingbirdmeblog.blogspot.com/2012/01/blog-2-adrenaline-surges-january-2012.html

--
Best wishes,
Jodi Bassett (and Alison Bell)
--
The Hummingbirds' Foundation for M.E.
www.hfme.org

Free full text to CFS & Orthostatis as biomarker

Free full text:

pdf: http://bit.ly/xciVbm  i.e.
http://iopscience.iop.org/0967-3334/33/2/231/pdf/0967-3334_33_2_231.pdf

or

html: http://iopscience.iop.org/0967-3334/33/2/231/article

(With thanks to ME/CFS-Evolving Science on Facebook)

------

Chronic fatigue syndrome and impaired peripheral pulse characteristics
on orthostasis-a new potential diagnostic biomarker.

Physiol Meas. 2012 Jan 25;33(2):231-241. [Epub ahead of print]

Allen J, Murray A, Di Maria C, Newton JL.

Source
Microvascular Diagnostics, Regional Medical Physics Department,
Freeman Hospital, Newcastle upon Tyne NE7 7DN, UK.

Autonomic Dysfunction as biomarker

http://www.ncbi.nlm.nih.gov/pubmed/22273713

Physiol Meas. 2012 Jan 25;33(2):231-241. [Epub ahead of print]
Chronic fatigue syndrome and impaired peripheral pulse characteristics
on orthostasis-a new potential diagnostic biomarker.
Allen J, Murray A, Di Maria C, Newton JL.
SourceMicrovascular Diagnostics, Regional Medical Physics Department,
Freeman Hospital, Newcastle upon Tyne NE7 7DN, UK.

Abstract

Autonomic nervous system dysfunction is frequently reported in chronic
fatigue syndrome (CFS) with orthostatic intolerance, a common symptom
that can be objectively assessed. The frequent finding of autonomic
dysfunction and symptoms on standing has the potential to provide a
diagnostic biomarker in chronic fatigue. In this study we explored the
clinical value of non-invasive optical multi-site photoplethysmography
(PPG) technology to assess cardiovascular responses to standing.
Multi-site PPG pulses were collected from tissue pads of the ears,
fingers and toes of 14 patients with CFS and 14 age-matched sedentary
subjects using a measurement protocol of a 10 min baseline (subject
supine) followed by 3 min of tilting on a tilt table (head-up to 70°).
Percentage change in pulse timing (pulse transit time, PTTf) and pulse
amplitude (AMP) at each site were calculated using beat-to-beat pulse
wave analysis. A significant reduction in the overall pulse timing
response to controlled standing was found for the CFS group (using
summed absolute percentage change in PTTf for ear, finger and toe
sites, median change of 26% for CFS and 37% for control with p =
0.002). There were no significant differences between subject groups
for the AMP measure at any site. Changes in AMP with tilt were,
however, weakly significantly and negatively correlated with fatigue
severity (p < 0.05). Receiver operating characteristic (ROC) analysis
of timing measures produced an area under the curve of 0.81.
Experimental linear discriminant classification analysis comparing
both timing and amplitude measures produced an overall diagnostic
accuracy of 82%. Pulse wave abnormalities have been observed in CFS
and represent a potential objective measure to help differentiate
between CFS patients and healthy controls.

PMID:22273713[PubMed - as supplied by publisher]

Sophia Mirza's sister's story

http://www.irishtimes.com/newspaper/health/2012/0124/1224310666209.html

I never imagined my sister would die
ROISIN WILSON
The Irish Times
Tuesday, January 24, 2012

MY HEALTH EXPERIENCE: RÓISÍN WILSON Sophia's nervous system had been
ravaged by ME

BEFORE MY sister Sophia got Myalgic Encephalomyelitis (ME), I had
subconsciously developed a disparaging view of the disease. The little
I knew about ME at the turn of the century was from how it had been
portrayed in the tabloid press.

ME had been painted as some kind of luxury illness, labelled "yuppie
flu". It seemed a very boring disease and I can't say I had any
interest in it.

I had got the impression ME was kind of a sabbatical illness, an
excuse for a few weeks off work to recharge the batteries. So when my
mum told me Sophia had ME, I wasn't that worried.

Sophia, two years my junior, had had meningitis before and malaria
twice. What was ME compared to those bad boys? My feisty sister could
easily whip this lily-livered ME.

I was living in New York at the time and on transatlantic phone calls
with our Irish mum, she would tell me how my sister had had to leave
her London life because she was too ill to look after herself. She
told me Sophia was getting worse and that nearly everything hurt my
sister.

I thought my mum was exaggerating; how can everything hurt Sophia?

Light hurt my sister, noise, smells, vibrations, the list went on. My
then 26-year-old sister had almost zero energy and had to lie in a
blackened room day and night, wearing a blindfold and earplugs, in
constant pain.

If that wasn't bad enough, the doctors treating her said this disease
was a mere "wrong belief", despite doing no physical tests on their
patient. And just for good measure they called my mum an enabler, for
believing her youngest child was genuinely ill and threatened to
remove her as Sophia's carer.

I listened to what my mum told me, but I couldn't really take it in.
How could Sophia be so desperately ill for months on end? The ME my
mum described was like nothing I had read about on the net. ME is
often referred to as Chronic Fatigue Syndrome (CFS) and the
information my Google searches revealed at the time did not correspond
with what my mum was describing about Sophia. I believed my mum, but I
could not grasp just how ill my sister was.

By the time I came back to Britain, I was still none the wiser, but I
was more clued up about telling people about my sister's disease, or
rather not telling people about it.

Upon hearing of my sibling's ME, people's reactions ranged from "Is
that all? I thought you were going to say something serious from your
tone of voice", to polite "humour-her" nodding and baffled,
sympathetic faces, and then the slam dunk of some responses.

"Maybe your sister has got issues with your mum/dad/whoever," or words
to that effect. "Issues!" I snapped at the last person who suggested
that, "Issues! If you got ME from having f***ing issues, then the
whole b*****d country would be down with it!"

Not long after I returned to Britain, 9/11 happened. My then husband
was in the Twin Towers that day, and with hindsight, I can see I
over-reacted to 9/11, because it was on the strength of that, that I
decided to become a nurse.

Throughout my three years of nurse training, I didn't tell a soul
about Sophia and the ME. I don't think I even mentioned I had a
sister. I saw how ME was viewed from the other side of the fence and
it wasn't good or accurate. One day during my second year of training,
I was on my cardiac placement and telephoned my mum on my break.

She was distraught, because at that very time I was calling her, the
police were breaking down the door so Sophia could be sectioned into a
mental hospital.

I didn't know what to do, so I called my brother Shane, who went
straight down to help mum and Sophia. I then went back to the ward and
couldn't say anything to anyone.

And it was around that time I nearly cracked. I very nearly told my
personal tutor about my fears and concerns for my sister. I was about
to blurt it out once when my tutor mentioned that our confidentiality
could be broken if somebody was at risk or over something illegal.

Confiding about Sophia could have me seen as an enabler, it could have
jeopardised Sophia even more; I couldn't risk it. I stayed schtum and
blamed my tears on PMT and the stress of course work.

Visits to Sophia were rare and precious, they had to be in the dark
with only a smidgen of light. Her body may have been torturing her,
but Sophia's mind was still all there. Those 13 days in the mental
hospital had done irreparable damage to my sister, though, she went
downhill from there.

I never imagined Sophia would die from ME, I thought she would outlive
the lot of us, by years. But my sister became the first person in
England to officially die from ME, a dubious honour indeed.

Sophia was 32 and had been bedridden for the last six years of her
life. I was in shock and grief-stricken for months after her death,
but in among all the pain, there was a tiny part of me that felt
lighter; that tiny light was one of relief, relief my sister was not
suffering so unbearably anymore.

The post-mortem revealed the physical evidence of Sophia's ravaged
nervous system, proof at last her disease was of physical origin.
Sophia's death from ME made news around the world, but it hasn't
changed how people with ME get treated in Britain – well not yet it
hasn't.

When Sophia got sectioned, the event was tape-recorded. This
profoundly moving audio is included in the award-winning documentary
Voices from the Shadows , a film made out of sheer desperation by the
family of a girl who suffers with severe ME.

This documentary includes the stories of other ME sufferers and
carers, as well as expert medical opinion and facts. This film needs
to be shown to as wide an audience as possible.

Voices from the Shadows will literally save lives and spare much
unnecessary suffering and bring much-needed understanding about the
reality of ME. This documentary urgently needs a way to be seen by the
masses. Please go to Voicesfromtheshadowsfilm.co.ukfor more
information.

Sophia suffered and died from ME, but nobody else should have to.

Psychobabble

I think it's important that CFS patients stop defending all the "psychological" claims.

The word 'psycho' should not even be acknowledged, even it were to come up in dialogue.

I believe that it is human nature that once a word is used repetitiously, that when the other party leaves the conversation, what they remember is the word that came up the most.

I recommend that CFS patients IGNORE any such statement, DON'T be defensive, and simply state what CFS is.

In the Corporate World, we called this an 'elevator speech.'  If you have 20secs to get your point across to a stranger what would you say? 

Would you waste your time defending what it's not or instead stating what it is?

"CFS/ME is a multi-system disease adversely affecting the heart, brain, immune system, nervous system, circulatory systems and muscles, including post-exertional malaise and neurological/cognitive manifestations."

Consistent marketing is very important. 

Let's just keeping stating what it is!

Be well.
www.cfsstraighttalk.blogspot.com

ME/CFS research grants

From: Susan Maier <maiers@OD.NIH.GOV>


ME CFS Research Funding Opportunity
Announcements posted in the NIH Guide
to Grants and Contracts

Note the following two grant funding opportunities for
ME/CFS research.

PAR-12-032:

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome:

Etiology, Diagnosis, Pathophysiology, and Treatment
(R01).

This funding opportunity announcement encourages
investigator-initiated R01 applications proposing to examine
the etiology, diagnosis, pathophysiology, and treatment of
Chronic Fatigue Syndrome (CFS), sometimes referred to as
myalgic encephalomyelitis (ME).

Applications will be received three times per year for three
years in response to this announcement.

Review the details for submitting an application, the due
dates, and eligibility factors at the following address:
http://grants.nih.gov/grants/guide/pa-files/PAR-12-032.html


PAR-12-033:

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome:

Etiology, Diagnosis, Pathophysiology, and Treatment
(R21).

This funding opportunity announcement encourages
investigator-initiated R21 applications proposing to examine
the etiology, diagnosis, pathophysiology, and treatment of
Chronic Fatigue Syndrome (CFS), sometimes referred to as
myalgic encephalomyelitis (ME).

Applications will be received three times per year for three
years in response to this announcement.

Review the details for submitting an application, the due
dates, and eligibility factors at the following address:
http://grants.nih.gov/grants/guide/pa-files/PAR-12-033.html


Other research funding opportunites may be found by
searching the NIH Guide for Grants and Contracts at:
http://grants.nih.gov/grants/guide/index.html

David Tuller on CFS

Note: According to David Tuller, science blogger Ed Yong had a
donation button on his blog in order for readers to reimburse the
writers of science writing that was outstanding, but for which they
were not reimbursed for writing by the usual media outlets. In this
case David Tuller said, "I did get $21 through contributions from the
"support science writers" button at Ed Yong's website." A ballpark
comparison would be that most large newspapers pay up to roughly $1.50
per word freelance for a complex story by a writer with Mr. Tuller's
credentials. This would have come out to about $15,000 for this piece
has Mr. Tuller been reimbursed at a professional rate.

What does $21 say about the value patients placed on a story rarely
told by a professional journalist?


David Tuller untangles the research history of chronic fatigue syndrome
Posted by Julie Rehmeyer on January 18th, 2012/ The Open Notebook

David Tuller
David Tuller has never shied away from controversial stories. Writing
for The New York Times for the last dozen years, he has covered a wide
range of topics, including infectious diseases, gay men's health, his
mom's 80th birthday, and most recently, chronic fatigue syndrome.
Tuller recently wrote a long piece that painstakingly examines, in a
way that few if any other journalists have, the role of the U.S.
Centers for Disease Control and Prevention in the twisted history of
research on this hotly debated illness. Here he tells TON guest
contributor Julie Rehmeyer about the complexities of covering a
disease that is little understood and often scorned, and about how he
published the story after editors turned him down. [Chronic Fatigue
Syndrome and the CDC: A Long, Tangled Tale appeared in virologist
Vincent Racaniello's blog in November 2011.]

What made you interested in writing about chronic fatigue syndrome?


I had a friend who was diagnosed with CFS about 20 years ago. I knew
him before he developed CFS and I watched him all these years. He got
me interested in XMRV [the virus that for some time appeared to be a
possible cause of CFS -- a link that has now been discredited]. The
more I looked into it, the more interesting and complicated it was as
an issue.


The first time I became aware of your work was last February. I myself
have had CFS for years, and it had suddenly gotten so bad that for two
months, I had rarely been able to get out of bed and was sometimes too
weak to even turn over.


I opened The New York Times one morning and read a story of yours on
the controversial PACE study, which claimed that cognitive behavioral
therapy and graded exercise therapy are effective therapies for CFS
patients. Your story said, "While this may sound like good news, the
findings…are certain to displease many patients and to intensify a
fierce, long-running debate about what causes the illness and how to
treat it… [The study] is expected to lend ammunition to those who
think the disease is primarily psychological or related to stress."
But the story didn't give much context to help readers understand the
patients' discontent or evaluate whether the illness is organic or
psychological. Although the story alluded to the controversy around
the definition of CFS, it didn't cite any of the mountain of evidence
for physiological abnormalities in CFS patients or quote the many
clinicians and researchers who had criticized the study and even
considered its recommendations dangerous.


You've since written more critically about that research — first in a
follow-up story in the Times, and most recently in the lengthy article
you wrote on the virologist Vincent Racaniello's blog. What made you
take a deeper look at CFS after that initial story?


When I wrote that first story about the PACE study, I'd been focusing
primarily on XMRV, not CFS more generally. I didn't understand the
problem with case definitions [a set of criteria for what symptoms
should be required for a person to be diagnosed with CFS], and there
was a context of controversy that wasn't part of my awareness at the
time. I wrote that story in a couple hours on deadline. It wasn't
until afterward that I realized that this wasn't the piece I would
have written had I known more about it.

I will say, though, that my story was better than most of the others
on it, which for the most part didn't have any caveats.

What dissatisfied you about the story?

I was driving home when it appeared, and by the time I got home I had
half a dozen emails about the piece. I realized that I hadn't focused
on the issue of the case definition. I've been a public health student
and I teach reporting about public health [at the University of
California-Berkeley Graduate School of Journalism and School of Public
Health's new concurrent Master of Public Health/Master of Journalism
program]. In the first semester, all public health students have to
take epidemiology, and one of the things they learn is that if you're
doing research, you have to have a good case definition so that you
know which patients have the illness and which don't. The PACE study's
definition of CFS is six months of unexplained fatigue — period. It's
not rocket science to figure out that that's likely to include people
who are depressed and don't have CFS. Fatigue is a common symptom of
depression, but people with CFS have some symptoms that are not
typical of depression. It was really because of that that I ended up
writing a second story, a month or so later, about case definition in
CFS. I tried to put it in a larger context — that this issue had been
fought over for years, and the PACE trial was the latest variation on
it.

What made you want to write an even more in-depth piece, explaining
the history of CFS research and relating that to the recent XMRV mess?

Writing the case definition story led me to start looking into the
Centers for Disease Control's role in defining the disease. I found
that in 2005, the CDC created a new way of defining the illness. Using
that framework, the agency calculated that the prevalence of CFS was
four times what everyone else thought it was, and ten times their own
previous estimate. But if four to ten times as many people now have
it, obviously something is really wrong with your case definition,
before or after. William Reeves was head of the CDC's research program
for CFS for two decades, and two years ago, they moved Reeves aside.
They never publicly said why, as far as I could tell. Furthermore, in
the 1990s, the CDC spent funds allocated for CFS research on other
projects, then lied to Congress about it.

I think all of this is really important for understanding why patients
can be so suspicious and paranoid. In most of the coverage, the XMRV
situation was decontextualized from the experience of patients and
history of the illness, although Amy Dockser Marcus did some terrific
reporting in the Wall Street Journal about the back story. But no one
had really focused in depth on the case definition problem and the
CDC's role in perpetuating that problem.

I didn't want to write a rant. I wanted to write, "This is what
happened with the epidemiology, and this is why the situation is so
screwed up." I wanted something that patients felt represented some of
the frustration they'd experienced in the past 20 years.

Did you think of the story as an advocacy piece?

No. I'm not a patient. I didn't want to write it as an advocate for
people with CFS. I wrote it because there was an undertold story. I
understood that it was something that would likely be useful to the
patient community; to the extent that that's the case, that's great.
My goal is to tell a story that's interesting, and one that I think is
important. Obviously I do think that the CDC has not done what people
expected it to do in this case. I think of writing this piece as being
a proper watchdog of a government agency in an area that hasn't gotten
much attention.

What dilemmas did you run into in writing the piece?

In the first version that I sent to a couple of editors, I started off
with Dr. Reeves' saying very soon after the initial XMRV finding that
his research team would look for the retrovirus but that he believed
they were unlikely to find anything. When he said it, I wondered,
"Should he have said that?" After all, his team hadn't even started
looking for it, and there hadn't been any evidence against the finding
at that point. It suggested that he was close-minded and partial. It
was particularly remarkable because individuals from all sides were
already calling for his ouster, before that point.

But when I looked back on it, [I realized] that story was too in the
middle of things to be a good beginning. If you weren't immersed in
the story, you didn't know why that was something he shouldn't have
said — it took too much explaining. For editors, it must have seemed
like, "What was that about?" So I reframed it as a more general piece,
with that as an example of his probably poor management skills — but I
put it way, way down in the hierarchy of things.

Instead, I decided to start with a patient's experience of having this
and that illness and infection. I thought it was really important to
have a credible patient who was understandable, sympathetic and
articulate. I thought it would be effective to juxtapose all her
health problems with the CDC's recent research concluding that CFS
patients tend to have personality disorders and a history of sexual
abuse. Here's this person dealing with all this terrible medical
stuff, and then they're telling her that she's kind of crazy. I could
then use that to lead into how the CDC really screwed up. I thought
that worked better than starting with the gaffe of Dr. Reeves', which
was really in the thicket of all these issues.

From there it was pretty much chronological. I segmented it to some
extent by topic, but then it was just a matter of tackling each chunk.
It's complicated to figure out how much detail you need, though: this
was a science-literate audience that I was writing for, so some things
I didn't have to go into in as much detail.

One thing that helped tremendously was looking through the minutes,
public testimony and recommendations of the Chronic Fatigue Syndrome
Advisory Committee, established to advise the Department of Health and
Human Services. Those documents detailed the collapse of all support
for Dr. Reeves and provided a few juicy quotes and details. Federal
advisory committee minutes are great sources for all kinds of stories
but used relatively infrequently.

What lessons can science journalists draw from your experience in
writing this story?

Once I started to get what the story was, I was able to listen to
patients more carefully. It's very hard when you're dealing with a
patient population that's been so mistreated: They interpret every
word that's written through such a fine magnifying glass. I've never
written about an issue that reverberates so extensively in the
blogosphere.

For science journalists writing about complex public health issues, I
think it's important not to take the CDC's word for it, nor academic
researchers, nor the press releases about the studies. Read the
studies yourselves. Read the studies criticizing those studies, and
the responses to the critics. I think reporters who are writing about
epidemiological issues should understand basic epidemiological
concepts.

What was the process of trying to sell the story like?

I think it's hard in general with this issue, because it's a hard
thing to explain to editors as much as anyone else who hasn't seen it
up close. First you have to convince people that it's an illness and
not just a psychological thing, and then you have to explain that the
CDC's program has been really screwed up. That preamble takes so long
that it's hard to explain the story. It's not a story that you can do
in 800 or 1500 words.

I tried four or five places which seemed like they'd be good venues
for it and I couldn't get any traction. I didn't hear back from a
couple of places, and a couple said it was interesting but cited
budget problems, or that it just didn't fit in with what they were
doing. I'm sure those things were the case, but I felt like it an
element of it was because it was CFS and not a disease with more
credibility and a better name. It's a much harder sell because this is
kind of squishy, and people don't understand it, and there's no
identified cause. No one said, "We don't really think this disease
exists so we don't want to spend time and money," nor do I think
anyone thought that. But I don't think it was on anyone's agenda as an
important thing to think about.

It was very frustrating, because I knew it was a story. But then I
thought, "Am I crazy? Maybe it's not a story." I had a colleague at
the journalism school who said, "No, this is an important story." He
couldn't quite understand why no one wanted to publish it. I felt like
I got a minor secondary echo of what patients must experience when
they go to doctors or talk to people about CFS.

Editors are like the rest of us: if you don't know someone who has it,
it's hard to understand what it is. And it's easy to ignore something
that makes people homebound and invisible.

What finally led you to decide to publish the story on Vincent
Racaniello's blog?

I felt like I wanted to get this out one way or another. I was
thinking that I'd just post it myself and link it to the Berkeley
journalism school faculty page, and then I talked to Vince and he
said, "Oh yeah, that'd be great." He said, "Write as long as you feel
like you need." That was really great. I started off to write
2000-3000 words, but it ended up being around 10,000 words. I felt
like I was able to touch on all of the issues, though not necessarily
in complete depth. Even as it was, there were things I took out and
things I didn't go into enough.

Did this experience leave you wary about trying to pitch big pieces on
CFS in the future?

You know, no. There are a couple of other pieces that I'd like to do.
It's made me think I may need to find an alternate way to publish
them, or to find a slam-dunk way of pitching them. But the truth is,
this is a piece I wanted to write, and I'm glad I wrote it. I'm glad
it's out there, and I like it. I'd love to have gotten paid, but that
wasn't my main priority. I felt like this was an important story that
I wanted to tell — I was in a position to tell it and I was going to
put it out there. I didn't need the money to continue to pay my bills.
Let me just be clear that I do think writers should be paid fairly for
our work! I would never have been able to do this when I was
freelancing full time. I'm lucky to have a job, at least for now, with
a decent paycheck.

I did get $21 through contributions from the "support science writers"
button at Ed Yong's website. I let him know that would come in handy.



Julie Rehmeyer
Guest contributor Julie Rehmeyer is a math and science writer who
contributes regularly to Wired and was a longtime mathematics
columnist for Science News. Her work has been included in The Best
Writing on Mathematics 2010. She recently wrote an article for Slate
on the demise of the XMRV retrovirus theory.

http://www.theopennotebook.com/2012/01/18/david-tuller-cfs/

CFS versus depression

Note: Confusion ensues sometimes when people confuse depression, which
is a psychiatric disorder, with a symptom of a disease. Disorders can
be concurrent with any disease, but they are not a symptom. A symptom
is any morbid phenomenon or departure from the normal in structure,
function, or sensation, experienced by the patient and indicative of
disease. Depression for example, can be experienced separately from
disease.


Chronic Fatigue Syndrome vs. Depression: One Doctor's View
By Adrienne Dellwo, About.com Guide   December 17, 2011

For decades,  people with chronic fatigue syndrome (ME/CFS) have
battled the misconception that they were "just depressed." Many
doctors and a large chunk of the general public believe that myth - in
spite of a wealth of research showing numerous physiological
abnormalities across multiple systems.

In a recent comment here, a doctor (obviously one of the good ones!)
left a comment that really rung true with me and I think is the best
description I've ever seen of the difference in mentality between
depression and ME/CFS:

"In my years of practice I have seen hundreds of pain sufferers with
depressed mood, but only a couple of patients with true clinical
depression. One of the features of true depression is anergy or the
lack of desire to do anything (it is very difficult to put this in
words). Another feature of clinical depression is "social apathy" or
having no desire to participate in social activities. These features
are exceedingly rare in people suffering from all types of chronic
pain and/or ME. Indeed, ME sufferers uniformly have an unabashed
yearning to be able to DO things, to participate in life!" - Doc
ForthePeople

I really think the doctor summed it up perfectly. In the 4 years I've
been hearing personal stories about ME/CFS, I've come across a lot of
people who say they miss the things they used to do, that it hurts
them to stay home when everyone else is off having fun, or perhaps
that they've given up trying to participate because they pay so dearly
afterward. However, I just don't hear people say that they don't want
to do things anymore.

Certainly, some people with ME/CFS become depressed. That's true of every single chronic, debilitating illness out there. When illness hits you out of the blue, derails your life, takes away myriad things that you love and that provide you with a sense of worth, and leaves you miserable and disabled ... um, yeah. It's depressing! Depression
is a major issue in cancer and no one blames the tumors on depression.
Likewise, it's being falsely implicated in ME/CFS. The same logic
applies to fibromyalgia.

I've seen the difference first hand...


Read the entire article here:
http://chronicfatigue.about.com/b/2011/12/17/chronic-fatigue-syndrome-vs-depression-one-doctors-view.htm

Keeping a symptom diary

PERMISSION TO FORWARD AND RE-POST ON OTHER FORUMS, SOCIAL NETWORKING
SITES AND USE IN NEWSLETTERS. PLEASE TWEET AND RE-TWEET ON TWITTER.

Letters to the Editor.

Many people affected by the illness M.E. (Myalgic Encephalomyelitis)
have been keeping a diary for decades. It is an ideal way to record
symptoms, experiences and feelings, as they happen and look back to see
if anything can be learned from it. But individual M.E. sufferers are
losing the best opportunity there is to compare all their observations
with fellow patients, from all over the world, simply by not sharing
them, as they could so easily do.

To achieve this connection, for everyone's benefit, the M.E. Community
Trust.org is inviting M.E. sufferers, to keep a diary in a uniform way,
in order to attempt to better understand the cause, onset, progression
and possible outcomes, using the benefit of a much bigger population for
statistical analysis and mutual support. Safety and confidentiality is
insured by each diarist, assuming an alias and saving data to their own
computers to avoid any hacking or personal abuse.

A more thoroughly explanatory press briefing has been sent to every
national and local newspaper in this country,in the hope that features
editors and health journalists will want to give it the further coverage
it deserves. In addition, we have "ambassadors" in every country in the
world - including Europe, USA&  Canada, Australasia, the Middle East,
Asia and Africa - who are publicising it in the same manner. It also
appears on our companion Facebook page, My M.E. Diary 2012 Trial -
http://www.facebook.com/pages/My-ME-Diary-2012-Trial/186206768135247

As a prelude to potentially the most ambitious longitudinal study of
M.E., on every continent, M.E. sufferers are invited to send an e-mail
from their assumed name to mymediary@mecommunitytrust.org with "My M.E.
Diary 2012 Trial" in the subject line today, or lose one of the best
opportunities ever for combined co-operative strength. Think of it this
way: If you don't do it, why should you expect anyone else to.

Everyone who does makes the collective M.E. voice more audible and this
awful illness more visible.

Yours sincerely
drjohngreensmith@mecommunitytrust. org
Dr John H Greensmith
ME Community Trust. org

Some countries still without ambassadors to distribute letters and press
briefings for this project.
Some M.E. support organisations conspicuous by absence of support.
Two few diarists signed up.
Please don't lose a good chance like this by leaving it to others -- who
may be doing the same!

Drug Repurposing Comes to CFS

 
"The high cost of developing new therapies has helped drive recent interest in drug repurposing. The concept is that a drug already approved for one condition will cost less and move faster into the clinic if it turns out to also work in a different disease.
 
...

"Hillenbrand, who says the success of her recent book "Unbroken" enabled her to make the $250,000 gift, tells the Health Blog she supports an integrated approach to CFS research. "Things are finally happening," Hillenbrand says.

"She points out that one of the most promising recent developments in CFS was actually a repurposing project. Researchers in Norway published research last year suggesting that the cancer drug Rituxan relieved symptoms in some CFS patients."

 

 

Sleeplessness Causes Our Mental Circuits to Overheat

 

Newborn Pariah

 

"Whittemore as a lobbyist always played hardball, often leaving bruised feelings. The way the scientific institute he and his wife founded went after a departed scientist with criminal charges instead of a civil lawsuit had his fingerprints all over it."

* * *

As yet, there are no comments on this story. Anyone up to writing something about CFS?