Narcolepsy

…
Narcolepsy is as common as MS, or Parkinson's disease, but only 25 percent, or one in four, of people with the disorder have been diagnosed. Of the estimated 200,000 Americans with narcolepsy, only 50,000 have been identified.
…

Individuals do not always readily bring up their symptoms with their health care providers, and begin to see symptoms as their personal norm, because the onset is often gradual. They believe that their problems will be seen as psychological in nature and fear that their concerns might be misunderstood or will not be taken seriously.

Their concerns are not unfounded. Many people with narcolepsy were misdiagnosed with psychiatric problems or told sleepiness was due to the effect of an unrelated medication. On average they had to see five physicians before being diagnosed with narcolepsy.

The mean length of time between the onset of symptoms and the diagnosis of narcolepsy is 15 years.

“…the reality is that many clinicians are unable to identify and diagnose narcolepsy, and patients end up losing their jobs, relationships, and other important elements of their lives instead of receiving the treatment they need."

(Word Document)

It all sounds so familiar.

Gerwyn Morris published a paper with Michael Maes

So Michael Maes might have gone to Thailand, but publishing with Gerwyn is proof that he has always been in quack-land.

Insulin and Obesity?

A nail in someone's coffin?

Apparently these rats are a nail in the coffin of the insulin hypothesis of obesity.

Peter at Hyperlipid destroys the "insulin and obesity" theory – what fun.

Call it what you want, Evolution has happened

If you don't like the word evolution, I don't care what you call it, but life has changed. You can lay out all the fossils that have been collected and establish lineages that even a fool could work up. So the question is why, how does this happen? It's not covered by Genesis. There's no explanation for this change going back 500 million years in any book I've read from the lips of any God.
-- Richard Leakey

(via)

Key Differences Between Celiac Disease and Gluten Sensitivity

Key Differences Between CD and Gluten Sensitivity

Study from University of Maryland Center for Celiac Research Places Gluten Sensitivity on Center Stage of Spectrum of Gluten-Related Disorders

Baltimore, MD – March 10, 2011. Scientists at the University of Maryland School of Medicine’s Center for Celiac Research have proven that gluten sensitivity is different from celiac disease at the molecular level and in the response it elicits from the immune system. The research, published online in BMC Medicine, provides the first scientific evidence of a different mechanism leading to gluten sensitivity. It also demonstrates that gluten sensitivity and celiac disease are part of a spectrum of gluten-related disorders.

"We found differences in levels of intestinal permeability and expression of genes regulating the immune response in the gut mucosa," says lead investigator Alessio Fasano, M.D., professor of pediatrics, medicine and physiology at the University of Maryland School of Medicine and director of the Center for Celiac Research. The research documents the genes and the pathways—a sequence of reactions in the small intestine—possibly associated with gluten sensitivity. "Identifying and isolating specific 'biomarkers' in the immune response of people with gluten sensitivity could lead to diagnostic tools for the condition," says Dr. Fasano, who also directs the University of Maryland School of Medicine Mucosal Biology Research Center.

…

Misidentified and contaminated cell lines lead to faulty cancer science

Misidentified and contaminated cell lines lead to faulty cancer science

AURORA, Colo. (June 20, 2012) -AURORA, COLO (June 20, 2012) -- Modern cancer therapies start in cells – researchers compare cancer samples to healthy cells to discover how cancer is genetically different, and use cell lines to test promising new drugs. However, a University of Colorado Cancer Center study published this week in the journal Gynecologic Oncology shows that due to a high rate of contamination, misidentification and redundancy in widely available cell lines, researchers may be drawing faulty conclusions.

"I've seen faculty and graduate students leave my lab in tears when we discovered the cells on the label weren't the cells they were actually experimenting on," says Christopher Korch, PhD, investigator at the CU Cancer Center and director of the center's DNA Sequencing and Analysis Service, the paper's co-first author. "When you get a cell line, you have to look that gift horse in the mouth – there's up to a 40 percent chance it's a Trojan horse, not what it says it is."

For example, the cell line known as HES has been widely used as a "normal" model of endometrial cells since its development in 1989. There are literally hundreds of papers that, for example, look for differences between endometrial cancer cells and these supposedly normal HES endometrial cells. Unfortunately, HES is not, in fact, an endometrial cell line. It's another cell line known as HeLa which was first derived from cervical cancer.
…

"I see two people working with different cultures in the same hood, or using the same growth medium for the same cultures with the same pipette," Korch says. "And especially HeLa is superwoman – it can fly." HeLa cells can travel in aerosols and once they land where they shouldn't, they're so adaptive and aggressive that they tend to out compete other cell lines wherever they land – contamination leads to a quick HeLa takeover and perhaps a vial labeled HES when in fact it's HeLa.

…

Medical Science: Professor steals from Grad Student, gets Nobel Prize

…
A lab notebook belonging to Albert Schatz, left, with his supervisor, Selman A. Waksman, and discovered at Rutgers helps puts to rest a 70-year argument over credit for the Nobel-winning discovery of streptomycin.
…
The 60 boxes contained details of how streptomycin was found — and also of the murky story behind it, a vicious legal battle between Dr. Waksman and his graduate student Albert Schatz over who deserved credit.
…
As word of the discovery spread, reporters flocked to Rutgers to record the amazing event. But in telling and retelling the story, Dr. Waksman slowly began to drop Dr. Schatz’s name and claim sole credit. He also arranged with Rutgers to receive hundreds of thousands of dollars in royalties from the patent that he and Dr. Schatz were awarded; Dr. Schatz received nothing.

… the scientific establishment sided with Dr. Waksman, scolding Dr. Schatz for having the effrontery to challenge his professor. And two years later Dr. Waksman alone was awarded the Nobel Prize for the discovery. Dr. Schatz protested, but the Nobel committee ruled that he was a mere lab assistant working under an eminent scientist. Dr. Schatz disappeared into academic obscurity and died with the full story still untold.
…
http://www.nytimes.com/2012/06/12/science/notebooks-shed-light-on-an-antibiotic-discovery-and-a-mentors-betrayal.html?_r=1

PLoS Data Sharing/Archiving Policy

Steve Mosher on the PLoS policy for sharing materials, methods, and data:

By submitting to PLoS ONE, authors agree to make to make freely available any materials and information described in their publication that may be reasonably requested for the purpose of academic, non-commercial research. Authors should make every effort to allow immediate and unrestricted access to all data and replaceable materials that are relevant to an article, except where this would breach confidentiality rules related to human-subject research.

If restrictions on access to data or materials come to light after publication, PLoS ONE reserves the right to post a correction, contact the authors’ institutions and funders, or retract the publication.

PLoS ONE will not consider a study if the conclusions depend solely on the analysis of proprietary data. If proprietary data were used, and the authors are unwilling or unable to make these data public, then the paper must include an analysis of public data that validates the conclusions so others can reproduce the analysis and build on the findings. These policies have been developed in accordance with the principles established in Sharing Publication-Related Data and Materials (National Academies Press, 2003).

Data for which public repositories have been established should be deposited before publication, and the appropriate accession numbers or digital object identifiers (DOIs) published in the “Methods” section of the paper. Please contact plosone [at] plos.org with any questions about appropriate discipline-specific repositories.

If an appropriate repository does not exist, data should be provided in an open access institutional repository, a general data repository such as Dryad, or as Supporting Information files with the published paper. If none of these options are practical, data should be made freely available upon request.

The Mikovits/Ruscetti/Lombardi train-wreck could have been caught much earlier if that tabloid "Science" had a similar data sharing/archiving policy.

Corrupted TLAs and The State of Health-Science

When it emerged in the late 1990s that the agency [CDC] had been diverting funds designated for CFS to other programs and then lying to Congress about it, Dr. Reeves—who was in charge of the program while the financial irregularities were taking place–sought and received whistle-blower protection.
…

Two years after the CDC issued its 1994 case definition, Osler’s Web was published to strong reviews. The book documented how the CDC routinely diverted money slated for CFS research to other projects because of lack of concern about the illness. (The CDC did not officially comment on the book at the time, according to a CDC spokeswoman.) Two years later, Dr. Reeves leveled similar charges against his superiors, noting that the CDC lied to Congress about how it spent CFS funding; he received whistleblower protection.

In his statement, he reported that, for example, in 1996 the agency spent $1.2 million for laboratory equipment and supplies for measles and polio and charged it to the CFS account. In 1995, he reported, the agency charged the CFS program $2.6 million for funding spent on unrelated studies. He had, he stated “attempted to rectify this within CDC” before going public.

“I believe that CDC has intentionally misrepresented monies allocated to CFS research and I cannot ethically support this,” wrote Dr. Reeves in his public statement. “The misrepresentations involve systematically charging between $400,000 and $2 million incurred by unrelated activities to CFS between 1995-97 and reporting to DHHS [Department of Health and Human Services], Congress and patients that the monies were used for CFS research.”

A 1999 report from the inspector general of HHS found that of the $22.7 million the CDC charged to its CFS program between 1995 and 1998, less than half was clearly spent on the illness. The report noted: “CDC spent significant portions of CFS funds on the costs of other programs and activities unrelated to CFS and failed to adequately document the relevance of other costs charged to the CFS program…As a result of these inappropriate charges, CDC officials provided inaccurate information to Congress regarding the use of CFS funds.”

The inspector general’s report found that $8.8 million was spent on non-CFS projects and that the documentation on an additional $4.1 million was so poor that it was impossible to determine whether they were used to support CFS research or not. Even as the CDC shortchanged the CFS program, the report noted, it disregarded Congressional requests to support important research initiatives. As an example, the report noted that Congress had urged the CDC to expand its surveillance of CFS among adolescents and to hire a neuroendocrinologist “to enable expansion of its research efforts and pursue promising findings from other Federal agencies and the private sector.”

At the time of the inspector general’s report, however, the CDC had halted an ongoing adolescent study and had not hired an endocrinologist—even as allocated money wasn’t being spent. The report noted: “Internal correspondence… indicated that delays were forced due to a ‘lack of available funds.’ Yet, we found that large portions of budgeted CFS funds had been held in reserve by the Division Director during the year, and were not released until after the deadline for obligations had passed. Thus, while important enhancements were not being implemented, more than $850,000 of FY 1998 budgeted funds were never made available to the program.”

In the wake of the scandal, Dr. Reeves’ boss left his position; the agency agreed to reform its accounting practices and restore more than $12 million to the CFS program over the next several years. Although Dr. Reeves’ whistleblower status effectively solidified his position at the CDC, his statement didn’t answer all outstanding questions. Given the revelations from Osler’s Web in 1996, it seemed unlikely to many patients and advocates that key officials at the agency could have been unaware of accounting irregularities–especially since they apparently continued through 1998, according to the federal investigators.
…

Kim McCleary, the head of the CFIDS Association of America, testified that the CFS program, based on a review of the CDC financial documents that the committee had sought, suffered from “shameful scientific leadership, zero accountability, invisible outcomes and millions and millions of dollars stuck in suspended animation, if not wasted…Only the government contractors seem to be benefiting from millions spent for which there are no worthwhile outcomes for American taxpayers, or CFS patients.”

The largest chunk of the program’s funding, reported McCleary, went to a single private research organization, Abt Associates in Cambridge, Massachusetts, in sole-source or no-bid contracts for the epidemiologic research that was being widely criticized by other scientists. At least $2.7 million committed to Abt was “in limbo”–obligated to specific projects but remaining unspent—and work on other projects was proceeding slowly and at great cost, she testified. The financial mismanagement, testified McCleary, “has resulted in program management coming often to this committee and telling other investigators that no funds are available for new projects or collaborations.”

The CDC? Corrupted. Psychopathologizing illnesses they don't want to understand.
The NCI? Corrupted. Faking XMRV research, while siphoning off billions for cancer research that goes nowhere.
The NIH? Corrupted. An dog-don't-eat-dog umbrella organization.
The WPI? Corrupted. Pushing their "Neuro-Immune" woo.
The USDA? Corrupted. Their nutritional advise is positively malicious.
The AHA? Corrupted. In league with the USDA.
The APA? Corrupted. Psychopathologizing society.
And then there is an army of freelance quacks.

Have I forgot anybody? I'm sorry if I hurt somebodies feelings by leaving them out – my bad.

The best health advise is to stop smoking, start eating something resembling Paleo, vaccinate, go only to doctors for problems you know they can help with (emergencies, surgical, dental, and so on) and otherwise stay as far away from these quacks as possible – and hope you will never get an chronic disease that forces you to use the services of these hacks.

PS: In case you think I sound like I'm filled with bitterness – that's because I am.

Is There An Undetected Chagas Pandemic?

Chagas Disease: Poverty, Immigration, and the ‘New HIV/AIDS’:

The issue with Chagas isn’t only that its primary victims represent an undetected public health and healthcare burden; when they do not know they are infected, they can become a source of infection as well. The protozoan can pass from mother to child during pregnancy, causing congenital Chagas; and when infected people donate blood or become organ donors, the protozoan hitches a ride. The earliest cases of Chagas in New York City, back in the 1980s, were transmitted by transfusion. There’s been an FDA-approved test for Chagas in donated blood for just two years. The latest map from AABB (formerly the American Association of Blood Banks), showing where positive donations have been identified, vividly demonstrates how the disease has spread.

… A third paper, published two years ago in PLoS NTD, argues that Chagas is now endemic in Texas, traveling from Triatoma species through dogs and into people — and is going undetected because blood-donation screening is not mandatory in the state and physicians are not required to report the disease’s occurrence to health authorities. (Chagas in fact is only reportable in a handful of states.) …

When I read "new HIV/AIDS" and "undetected" in the context of pathogens, I become reminded of the XMRV fraud creative accounting by Mikovits/Ruscetti. The whole fear-mongering is just so similar to XMRV. And the reckless compassionate "Chronic Lyme" diagnosis by so called "Lyme Literate Medical Doctors (LLMD)" comes to my mind.

But then again, there might actually be an Chagas pandemic. And I know how ME/CFS has been treated by the health authorities.

And the AABB results are different from the XMRV wild goose chase – there seems to actually be something to find, unlike XMRV.

I wonder how many more "undetected" disease are out there…

40 Years War On Cancer

Has the NCI achieved much with its billions? I mean, besides faking XMRV research?

Margaret “Margie” Profet – The Tale of the Lost Scientist

Missing biologist surfaces, reunites with family:

At the time we lost track of her, Margie was in severe physical pain. Not wanting to trouble anyone else, she did not disclose the fact to us or to her friends, but moved to a new location in which she thought the pain would soon diminish. Instead, it persisted for many years.

Unable to work because of it and subsequent injuries, she had long lived in poverty, sustained largely by the religion she had come to early in the decade.

Get ill and you'll get poor.