Friday, July 30, 2010

Panorama ME Investigation Campaign

The Petition

"For clarity, this document uses ME in reference to the disease Myalgic
Encephalomyelitis, CFS in reference to idiopathic chronic fatigue,
and CFS/ME when referring to the attempts by psychiatrists to merge the two and redefine Myalgic Encephalomyelitis as a somatoform disorder (i.e. a psychiatric condition).

We, the undersigned, request that the Panorama Team conduct an
investigation into the conduct of the Department of Health, Medical
Research Council and National Institute for Clinical Excellence with regards to the diagnosis, treatment and research of the neuro-immune disease Myalgic Encephalomyelitis (ME)1 - the disease that affected the late Lynn Gilderdale.2

Why has the Department of Health allowed psychiatrists to dismiss a
seriously debilitating,3 potentially fatal disease as so called “chronic fatigue syndrome”?"

Wednesday, July 28, 2010

WSJ's blog on XMRV

By Amy Dockser Marcus, The Wall Street Journal

The controversy surrounding XMRV, a virus that has been linked to chronic-fatigue syndrome and prostate cancer, has been heating up recently.

Earlier this month, CDC researchers published a paper in Retrovirology that reported the absence of XMRV in either the CFS patients studied or healthy controls. A much-anticipated study by researchers from the FDA and NIH supposedly reached a different conclusion, finding the virus in the blood of CFS patients. It’s expected to run in the journal PNAS but has yet to be published.

So lots of people are waiting for answers - patients anxious to find out whether their disease is linked to XMRV, scientists interested in learning more about what is only the third known human retrovirus and public health officials trying to determine whether XMRV could affect the nation’s blood supply.

And that wait may not be a short one, say experts participating in a webinar today sponsored by the advocacy group CFIDS Association of America. Vincent Racaniello, a professor of microbiology and immunology at Columbia University, said that there’s a lot of work yet to be done in patients in order to answer the key questions surrounding the issue, and the full dimensions of the XMRV story will take time to understand.

"We can learn a lot from history," he said on the webinar, noting that it took 15 years from the time clusters of AIDS patients were identified to the development of effective therapies. Racaniello doesn’t study XMRV in the lab, but he blogs about the controversy.

In a follow-up chat with the Health Blog, Racaniello said that so far, all the published studies have been done in relatively small numbers of patients - 50 or 100 people.

What’s needed to really get answers, he says, is a 500- or 1,000-person, federally funded study conducted at more than one research site. Ideally participants would be existing CFS patients who’d be available to be interviewed for detailed medical and case histories, and who could give fresh blood samples. And centers would use uniform definitions of CFS and lab methods, he said.

Another webinar participant, Lucinda Bateman, an internist who evaluates CFS patients at her Salt Lake City clinic, says that up until now there’s been "no consistency in the way we diagnose and treat patients" with CFS. Potential treatments for XMRV infection exist, she says, but there are plenty of questions about which are safe and effective - and sorting all that out will take (you guessed it!) - time.

Still, that’s not to say that the scientific process - and the debate - hasn’t been fruitful, she says. Even negative studies help shape the direction of future research, and the differing results of the published studies have led to greater scrutiny of the way CFS is defined.

Interest in CFS is growing in major academic centers and attracting more scientists.

And more people are donating money to help fund CFS research, she adds - which eventually should lead to the kinds of trials that Racaniello and others want to see done.

Friday, July 16, 2010

Professor Wessely, you might like to know what the 12 Most Hated Professions on the Planet are ...

These 12 professions are the most hated for reasons that will quickly become clear: for all their good intentions, these are the professionals with the most power to screw up your day and put you in a world of financial hurt.


Thursday, July 15, 2010

Delay in Release of Study on Chronic Fatigue Syndrome Prompts an Outcry

From the New York Times, 14 July 2010 (Story by David Tuller)

Researchers at the National Institutes of Health and the Food and Drug Administration, citing a need to re-evaluate their data, have delayed publication of a new study believed to provide evidence of a link between chronic fatigue syndrome and a little-known retrovirus.

The study, already peer-reviewed, was supposed to appear in the prestigious Proceedings of the National Academy of Sciences. The delay has sparked an outcry on blogs and social networking sites among chronic fatigue patients, who are desperate for answers about their debilitating illness and fear that important scientific data are being suppressed.

“A cabal of top government administrators” with a habit of “heavy-handed, anti-science manipulation of peer-reviewed science” ordered the delay, Hillary Johnson, author of a book about the history of chronic fatigue syndrome

Friday, July 9, 2010

CBT research for dummies in a nutshell

It’s no federal crime to be a jerk, or to select the wrong group of patients, do a phone(y) survey and a one-hour clinical evaluation, and then write the same paper over and over again.

Delete all evidence to the contrary, and earn shedloads of money by offering your services to anybody who wants you to deny everything and anything.

And then you become a professor about a disease you know nothing about, nor do you have any inclination to find out ...

Furthermore, what happens to and with the patient is totally irrelevant.

And that is CBT research by modern CBT psychiatrists, about a serious neurological illness, in a nuttershell.

Tuesday, July 6, 2010

To keep the Big Lie going

By Hillary Johnson: "This was never going to be easy, but who could have imagined the depths to which the government would sink to protect the reputation of the country’s famous disease control agency? Or to keep the Big Lie going about ..."

Altered Realities: the Disappearing XMRV Papers Trick

Whittemore Peterson Institute Statement regarding Centers for Disease Control XMRV Study.

Contrary to the WPI study published in Science in October, 2009, as well as studies done by others, including the NIH and FDA, Mr. William Switzer of the Centers for Disease Control reported that his research team was unable to detect XMRV in CFS patient samples. This negative finding is in contrast to the WPI study in which we detected XMRV in 67% of CFS patient samples.

To correctly replicate scientific studies it is imperative that researchers use the same methods and patient criteria to ensure accurate results. The methodology used by the CDC was not the same as that used in the WPI study nor was the patient selection criteria.

In September 2009, WPI sent the CDC twenty confirmed positive samples and the appropriate methodology to help them develop a clinically validated test. However, this team chose not to do this.

Until researchers use clinically validated tests to detect XMRV in patient samples, as WPI and their collaborators have successfully done, an accurate association of XMRV to any diseased population cannot be made. For this reason, WPI researchers and many others are currently validating more sensitive clinical assays to assist federal agencies in their search for the true prevalence of XMRV in the human population.

WPI will continue its core mission to deliver answers to patients with neuro-immune diseases by supporting the development of accurate diagnostics and providing effective therapeutics and clinical care.


Related Posts with Thumbnails