Saturday, December 24, 2011

Laura Hillenbrand’s Acclaimed Bestsellers Haven’t Changed Her

The future of XMRV: A doctor's view

 
Michael Snyderman MD says:

Quote:
The retraction of Lombardi et al by Science is not the end of the story. Negative studies looking at only XMRV are not relevant. Because XMRV is gone, Dr. Coffin and other scientists cannot go beyond their data as they have done and say that HGRVs do not cause CFS and by extension other human disorders. I counsel these scientists to not exclude other evidence which I have to believe they are fully aware of and will repeat below.

As a physician I am used to looking for as much evidence, from as many aspects as possible before excluding a diagnosis. This includes clinical evidence; after all we are not just test tubes. For example, the classic laboratory tests for B12 deficiency can be negative and yet the patient can respond to B12 administration. In this latter case the penalty for dismissing the diagnosis prematurely would be brain and spinal cord damage for the patient. As physicians, we know that there are indeed false positive lab findings but also, and just as importantly, false negative results. The textbook picture exists only in the textbook.

The first chapter of our story was written 30 years ago from three independent laboratories, including Robert Gallo's at the NIH. Lest the scientists forget this, the studies proved the association of MLRVs and human disease.

The second chapter is mine. As you know, I tested positive in Dr. Mikovits laboratory for antibodies to MLRVs. As you know, both my leukemia and my CFS have responded to ARVs. If I had listened to Dr. Coffin's advice to not take ARVs, I would have lost at least 18 months of life. Dr. Coffin and Science have seen my results. The only comment Dr. Coffin made was that it had to represent "selective toxicity" which as an Oncologist with 40 years' experience, I can confidently exclude.

Bruce Albert of Science never commented but relies heavily on Dr. Coffin's judgment. I presented my data at a peer-reviewed Hematological Malignancy conference at MD Anderson Cancer Institute in 2010 and it was well received. including by the physician that is considered the premier researcher in my leukemia, Dr. Kanti Rai. I am just one patient, but I am a typical patient and I am told the association of HIV and AIDS was initially made with data from only a few patients.

So where does that leave us? Research will continue. We still have some scientists with enough courage and wisdom not to abandon the quest. There is a virus, or viruses and these will be found. This story will never end, despite Dr. Coffin and Science. The viruses are likely to be involved in many more disease processes and the world will be a better, or at least healthier place, when they are tamed.

Michael Snyderman, MD

Friday, December 23, 2011

Irish doctor opens new chronic fatigue syndrome clinic in NYC

Irish doctor opens new chronic fatigue syndrome clinic in NYC
Clinic opens after $1 million donation from Doctor Enlander's patients

By MOLLY MULDOON, IrishCentral Staff Writer
Published Friday, December 23, 2011, 8:13 AMUpdated Friday, December
23, 2011, 8:13 AM


An Irish doctor has launched a specialized research clinic in New York
for chronic fatigue syndrome (CFS) at the Mt. Sinai Hospital in
Manhattan.

"I believe that an independent organization such as ours, which is not
funded by the government or answerable to the government, can be the
leader in new research," said Dr. Enlander.

The Mt. Sinai research team includes a geneticist, an immunologist and
a virologist. The center was established as a result of a $1 million
private donation from one of Dr Enlander's patients.

"I am very proud of it, we have got terrific people on board," Dr
Enlander told the Irish Voice.

"This is a very important center, it is the only ME/CFS center
attached to a major medical school," he added.

Dr Enlander has been a long-time advocate of the debilitating illness,
which he says many doctors misdiagnose.

"This is not a psychological disease," he notes, adding, "It's a
physical disease".

Born in Belfast, Enlander entered medical school at the age of 17.

"I wanted to be a doctor since I was five years old," he recalls.

He originally came to the U.S. in the sixties when he was offered a
fellowship to study at Stanford University Medical School.

"They gave me a faculty position in New York after Stanford," he said.

A faculty member of Mount Sinai Medical School, Dr Enlander is an
attending physician at Mount Sinai Medical Center in New York.

According to the Enlander's diagnosis, ME/CFS (myalgic
encephalomyelitis/chronic fatigue syndrome), is a debilitating and
complex disorder characterized by profound fatigue that is not
improved by bed rest and that may be worsened by physical or mental
activity.

Symptoms include fatigue, loss of memory or concentration, unexplained
muscle pain, and extreme exhaustion. It is most prevalent among women
in their 40s and 50s.

The doctor's interest in the condition began while on vacation in
Ireland almost two decades ago when an old school friend was suffering
from CFS.

"He told me he felt terrible and it and it spurred my interest," he recalls.

Two decades later, the Irish doctor has established himself as leading
profession in the illness, having conducted extensive research.

Up to 75 percent of Dr Enlander's patients are female between the ages of 18-52.

"This is not just ordinary tiredness, this is a debilitative disease," he noted.

With patients travelling from England, Ireland, Peru, France,
Bulgaria, and Romania, there is a great demand for his specialty.

"Patients have travelled from all over the world to see us," he noted.

The definite cause of CFS has not yet been identified, but the New
York based doctor's research has led him to believe that the disorder
is connected to the immune system.

"We believe that CGS is an immune system dysfunction," said Enlander,

"People used to think patients were imagining that they were sick as
all their blood tests were normal, doctors didn't pay as much
attention," he notes.

"The longer they have had it, the longer it takes to recover," he said.

The Belfast born doctor offers various treatment plans for the
illness. The Manhattan research facility is working with Hemispherx
Biopharma, a biopharmaceutical company, based in Philadelphia, to
examine the potential of the drug Ampligen, as a treatment for CFS.

Worldwide, 17 million people suffer from the syndrome, including at
least one million Americans, according to the New York Times.

For more information log onto www.enlander.com.



Read more: http://www.irishcentral.com/news/Irish-doctor-opens-new-chronic-fatigue-syndrome-clinic-in-NYC-136017443.html#ixzz1hNjiLK8I

90% of Patients Say They Want to Read Doctors' Notes

 
Because they don't want you to see what they're REALLY writing about you.  Not one page of my medical records from a respected institution doesn't have at least one outright lie that makes me look bad.  A lifelong history of depression was invented so they wouldn't have to deal with the phrase "diagnosed by a virologist".  I was accused of quitting work as soon as I got a diagnosis, not 12 years later when my health finally failed from pushing myself to my limits to keep working full-time.
 
Whether covering up the first doctor's malpractice or intended to deny me SSDI or both, it's still falsification of medical records.

Thursday, December 22, 2011

Mary Schweitzer's always-excellent testimony

I've uploaded my testimony from the November meetings of CFSAC to my blog.  You'll find a copy here:

http://slightlyalive.blogspot.com/2011/12/why-wont-cdc-study-my-disease.html

Mary Schweitzer

Pacing as a strategy to improve energy management in myalgic encephalomyelitis

 
Implications for Rehabilitation
  • Pacing is a strategy which helps patients with ME/CFS limit exertion-related increases in symptomatology.

  • Pacing is appropriate for those who operating near or at their maximum level of functioning, and for individuals with neurological and immunological abnormalities.

  • Pacing may be offered as part of an individualized, multi-component management programme.




Read More: http://informahealthcare.com/doi/abs/10.3109/09638288.2011.635746
Implications for Rehabilitation
  • Pacing is a strategy which helps patients with ME/CFS limit exertion-related increases in symptomatology.

  • Pacing is appropriate for those who operating near or at their maximum level of functioning, and for individuals with neurological and immunological abnormalities.

  • Pacing may be offered as part of an individualized, multi-component management programme.




Read More: http://informahealthcare.com/doi/abs/10.3109/09638288.2011.635746
Includes a PDF you can share with your doctor or anyone else who thinks you just need to get off the couch and go do stuff.
 
 

Monday, December 19, 2011

Chronic Fatigue Syndrome vs. Depression: One Doctor's View

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

Keep your mind active, for free!

 
www.nytimes.com
The new online learning platform will provide access to online laboratories, self-assessments and student-to-student discussions.
 
 

Sunday, December 18, 2011

Rampant Disability Fraud?

"Given the success rate of the "stop a benefit fraud" hotline is only 0.31%, a large number of people are being maliciously accused of benefit fraud. Such malicious people should be subject the criminal law similar to wasting police time."
 
Several years ago, the State of Connecticut launched a million-dollar disability fraud investigation and found only six people in the entire state who were deemed able to work.  It'll take decades to recoup the cost of that investigation.
 
Meanwhile, government contractors who fleece them for a million dollars a year go uninvestigated.
 
Remember those numbers: 1/3 of one percent, and six people, next time someone complains in your presence about fraudulent disability claims.
 
Someone within my own family has argued that the guy across the street must be committing disability fraud because he's able to do yard work, fix cars, etc.  In fact, it's entirely possible that he has a psychiatric condition that leaves him unable to cope with stress, but physically able to do things on his own schedule.  (Reports on his obnoxious personality leave me with no question that he's unemployable, though I certainly don't have the psych background to make a diagnosis.)

Whittemore Peterson Institute vows to get past setbacks

http://www.rgj.com/article/20111217/NEWS/112180351/Whittemore-Peterson-Institute-vows-get-past-setbacks?odyssey=tab%7Ctopnews%7Ctext%7CLocal%20News

Whittemore Peterson Institute vows to get past setbacks
Written by Lenita Powers
9:01 PM, Dec. 17, 2011


The Whittemore Peterson Institute for Neuro-Immune Disease in Reno
made headlines around the world in 2009 when news spread that its
researchers had discovered XMRV, a new retrovirus that might lead to
breakthroughs in the treatment of chronic fatigue syndrome and other
neurological diseases.

Two years later, aspirations of Reno becoming the mecca of a medical
breakthrough that could lead to treatment for chronic fatigue, an
illness that affects an estimated 17 million people worldwide,
evaporated when the research was discredited.

But the latest blow came this year when Dr. Judy Mikovits, the
Whittemore Peterson Institute's lead researcher behind the discovery
of XMRV, was fired in September for "insubordination and insolence."

In November, she was arrested on felony charges for allegedly
enlisting a fellow researcher to steal research notebooks and other
proprietary materials from the institute.

Annette Whittemore, president and founder of the institute, calls the
discredited research and Mikovits' arrest "a bump in the road" that
will not stop the institute's commitment to finding the cause and, she
hopes, a cure for chronic fatigue syndrome.

"The whole issue, until it is resolved, has a lot of people confused
and wondering whether we will be going forward and whether the federal
government is still going to be committed," she said, referring to
federal research grants and other funding. "There is more federal
funding for this disease than ever, and they're deeply committed."

Two current grants from the National Institutes of Health totaling
about $660,000 were made to the WPI, not to Mikovits, Whittemore said,
so those funds will remain with the institution.

More research under way

The WPI is continuing its research into the underlying causes of
neuroimmune diseases, including finalizing two research projects
involving gamma retroviruses and several studies related to the innate
immune system.

"We're as committed as ever," Whittemore said. "Ultimately, this
institution is looking for the right answers, and nothing else
matters. So we are going to continue to do the good work and find the
answers to the best of our ability and make sure others can reproduce
and confirm that good work."

Meanwhile, the implosion of the institute's research with XMRV and the
firing of Mikovits has frustrated chronic fatigue syndrome patients.

"I was cautiously optimistic at beginning," said 73-year-old Penny
McCracken, a Fallon resident who has struggled with the illness since
1981.

"I'm just kind of resigned now," she said. "It's like, 'Oo-ha, here we
go again.' We've seen promising things fall apart before."

Hurtful comments

Whittemore is keenly aware of the disappointment, anger and even
mistrust voiced by people with chronic fatigue syndrome who have
commented on WPI's website, blogs and other sites on the Internet. In
a recent interview at the institute's office, she recently addressed
those comments as well as what she said was the real reason Mikovits
was fired.

At the nearly two-hour interview, Whittemore was joined by Vincent
Lombardi, who has replaced Mikovits as the WPI's lead researcher.
Whittemore refuted claims being made on the Internet that Mikovits was
fired because the Whittemore family was trying to make money from
tests being conducted to detect XMRV in patients with chronic fatigue,
but Mikovits opposed the $400 to $650 cost for the tests as being too
expensive.

Whittemore said WPI did not receive funds from the tests, and she said
the comment by one person on the Web who called the Whittemores greedy
was "very hurtful. Our family has given millions of dollars over the
last 40 years in support of charitable organizations, including WPI,"
she said.

VIPdx, the Reno laboratory that conducted the tests, is a privately
owned laboratory and is not affiliated with WPI, Whittemore said.
VIPdx did pay to license the use the technology from WPI to do the
testing, but that money was used by WPI to help fund its research.

And, despite news reports to the contrary, Mikovits was not fired
because she refused to share her research cell lines with other WPI
scientists, Whittemore and Lombardi said.

"In fact, those cell lines weren't shared," Lombardi said. "They
belonged to me, and she took them."

Lombardi said he had asked Japanese researchers who had built a cell
line to share it with him.

"When you publish research using a cell line you have developed, then
you're kind of obligated to share it with anybody who wants to use it,
and they said they would be happy to do that," he said.

Lombardi said the package with the cell line has his name on it, but
it apparently was sent to Mikovits' laboratory.

"She took them and never told me they came. When I called FedEx to
track them down, I found out that she had them. I asked her for them
back, and she said 'no' when they weren't even hers. So I talked to
Annette."

Whittemore said she confronted Mikovits, who refused to return the
cell line to Lombardi, so she fired her for insubordination.

"And what she did interfered with (Lombardi's) ability to complete his
study," Whittemore said.

Petitioners support Mikovits

Mikovits, who is facing a civil lawsuit and criminal charges filed in
Washoe District Court, could not be reached for comment. Her lawyer,
Scott Freeman, also declined to discuss his client's case.

And researchers who had worked with her at the National Cancer
Institute or were listed as co-researchers on the XMRV article
published in Science refused to return telephone calls or hung up when
they were contacted by the Reno Gazette-Journal.

However, Orlando, Fla., resident Patricia Carter has created an online
petition in support of Mikovits that garnered about 380 signatures,
which Carter said would be sent to the U.S. Senate and the Whittemore
Peterson Institute. The petition calls for the institute to "treat
Mikovits fairly," return to her any research material that was hers
and refrain from taking any legal or other action that would
"intentionally damage Dr. Judy Mikovits' reputation of credibility."

However, Whittemore said Mikovits had signed a contract stating that
all research material belongs to the institute.

Peterson's new center

Earlier this year, a new research player came onboard in search for a
cause and treatment for neuroimmune diseases.

Dr. Daniel Peterson, the doctor who treated hundreds of Chronic
Fatigue Patients during an outbreak in Incline Village in the 1980s,
resigned from the Whittemore Peterson Institute that bears his name
and opened his own nonprofit research foundation in Incline Village.

Neither Peterson nor the director of the Simmaron Research Inc.
returned repeated telephone calls, but the research foundation's
website cites its mission as "playing a key role in bringing science
to the clinician to better diagnose, treat and manage patients" who
have chronic fatigue syndrome and myalgic encephalomyelitis.

Simmaron Research is working in collaboration with Sonya Marshall and
colleagues at the Bond University of Australia and Konnie Knox with
the Wisconsin Viral Research Group.

K. Kimberly McCleary, president of the Chronic Fatigue and Immune
Dysfunction Syndrome Association of America, said the high-profile
split with Mikovits at the Whittemore Peterson Institute, the
investigation by Science into the XMRV research paper and ensuing
legal actions "are of deep concern" to many of those in the patient
and scientific communities.

"Because of the hope that XMRV raised for better care, Dr. Mikovits
and the WPI have both attracted considerable support that is now being
tested as details of civil and criminal charges are made public,"
McCleary said. "We remain concerned for the well-being of all who are
affected by this dispute and hope that the various investigations will
yield an equitable resolution."

She said her organization will continue to focus on research to
improve the diagnosis and treatment of chronic fatigue syndrome, "and
efforts to end the life-altering disability, stigma and isolation CFS
imposes."

For 17-year-old Rebecca Ghusn of Reno, who suffers from chronic
fatigue syndrome, the failure to link XMRV to her illness is just
another false lead in the scientific hunt to find a cause and a cure.

"You always hope something will happen when they find a lead, but they
had lots of leads, so this is just one step forward and two steps
back," she said. "And I think the whole XMRV thing was blown out of
proportion, but, yes, it was disappointing."

UNR research untainted

The WPI is not part of the University of Nevada, Reno, but the
institute's office and laboratories are housed in UNR's Center for
Molecular Medicine, a state-of-the-art facility that opened August
2010 and to which the Whittemores donated an undisclosed amount of
money.

But the widely reported fact that the XMRV research has been
discredited and the lawsuits pending against Mikovits that have now
enveloped WPI won't impugn the credibility of the research being
conducted by the university's scientists, said Marc Johnson, UNR's
interim president.

"The Whittemore Peterson Institute is located on our campus, although
it is independent of the university," he said. "The institute is in
the midst of a challenging time, and the university is noted in many
media reports as the location of the institute. However, this
geographic relationship does not detract from or even relate to the
outstanding caliber of work being done by our university researchers."

Johnson said Annette and Harvey Whittemore have been good friends of
the university and have made significant contributions to the
community and state.

"We wish them well in their scientific endeavors," he said.