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In addition to general news at this site, Hunter-Hopkins Center is pleased to announce our electronic newsletter.  This e-letter will allow us to keep patients up to date on new concepts and therapies, as well as changes at the Center. It will also provide a means of alerting patients to crucial or late-breaking developments.

Persons who are interested in signing up for the newsletter should make a request by email

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Dr.Lapp CHATS on ImmuneSupport.com

On the evening of February 1, Dr. Lapp was the host of ProHealth's Chat Room.  According to the producer, this particular program set a new record by attracting 3 times more participants than the previous chat. If you're interested in finding out more, click on the link below:

http://www.immunesupport.com/library/showarticle.cfm/id/8665

 

New York Times Article:  Is FM REAL?

On January 14, 2008, the front page of the New York Times featured an article by Alex Berenson titled, “Drug Approved.  Is Disease Real?”

Berenson pointed to the recent FDA approval of Lyrica® for the treatment of fibromyalgia, and then wondered how the FDA could approve a drug for a disease that doesn’t really exist.  He quotes several outspoken critics of FM in order to shore up his opinion.

I don’t know about you, but I was furious – as were most other physicians who (unlike Berenson or his skeptics) deal with FM every day. 

I encourage you take a sedative, lie down, then read the article at http://query.nytimes.com/gst/fullpage.html?res=9E04EFDD1531F937A25752C0A96E9C8B63

Here is Dr. Lapp's response to the Editor of the Times:

Alex Berenson's January 14 article on the front page of the Times queries, "Is [Fibromyalgia] Real?" How can Berenson – a young journalist and novelist with no obvious medical credentials – presume to challenge whether fibromyalgia (FM) is real when scientists with greater knowledge and understanding have already concluded that it is real?

The diagnosis of FM is accepted by such venerable institutions as the National Institutes of Health, the American College of Rheumatology, the FDA, and the World Health Organization. Those who suffer with FM know it's real; those with FM pain that interferes with sleep, and movement, and concentration know it's real; those who want and need to work but are disabled by FM know it's real.

It is distressing that a few individuals such as Fred Wolfe and Norton Hadler have been given such credence in the Times when the vast majority of authorities think otherwise. These men cling to an antiquated philosophy that says, "If you can't see something obviously wrong with a person, then the symptoms must be in the head." In a sense, FM is an invisible illness. You cannot see pain, or sleep disruption, or bone-crushing fatigue—but these are all real.

In addition to fibromyalgia, Hadler for one also discredits carpal tunnel syndrome and chronic low back pain. For those who have these painful and disabling problems, they are as real as rain. Other skeptics disregard "invisible" illnesses such as irritable bowel syndrome and PMS.

Skeptics will always exist. There are some who believe that AIDS is not real. As is the case with FM, the skeptics are clearly wrong but entitled to their beliefs. They don't usually get a forum on the front page of the New York Times, however.

Berenson's article is clearly one-sided, giving a few skeptics a greater voice. I sincerely hope you will balance their perception with the wider-held perspective that FM is a real disease and a real cause of morbidity and disability. As a specialist who treats men and women with FM, I am grateful for the companies that research medications for the management of this disorder.

Charles W. Lapp, M.D.
Director, Hunter-Hopkins Center, Charlotte, N.C.
Assistant Consulting Professor, Duke University Medical Center, Durham, N.C.

If you’d like to read other responses, go to the FM Network at: http://www.fmnetnews.com/basics-news.php#DrsRespond

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Name Change Campaign Begins in Earnest

In January 2007 a panel of CFS experts met in Fort Lauderdale, Florida, to spark a grassroots movement to change the name Chronic Fatigue Syndrome.

The hard work of ProHealth Founder, Rich Carson (Carson Bio) and the Name Change Advisory Board has now come to fruition with the recent launch of their website, Campaign For A Fair Name.

Learn more about the cause, electronically sign a petition to change the name, or leave your comments ... but please get involved!

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Norwegian ME Association

Dr. Lapp and other members of the IACFS/ME* Board spoke on October 18-19, 2007 at the Norwegian ME Association meetings in Oslo, Norway. Dr. Lapp addressed pain, sleep, and the diagnosis of ME/CFS in adults. Other subjects included immunology (Klimas), neuropsychiatric evaluation (Lange), teaching CFS/ME to medical students (Friedman), a behavioral approach (Fennell), GI problems (DeMeirleir), the pediatric case definition (Bell), and the importance of a name change (Jason). Over 450 patients and caregivers attended the Thursday, October 18, meetings; and over 400 professionals attended the all day meeting on Friday, October 19! *IACFS/ME stands for the International Association for CFS/ME and FM.

 

Dr.Lapp Produces Educational Course with the CDC and CAA

Many of our friends and patients are not aware that Dr. Lapp has co-authored an educational course with the Center for Disease Control and Prevention and the CFIDS Association of America.  Dr. Lapp and Leonard Jason, PhD are the trainers for this course, which is available on line.  Chronic Fatigue Syndrome: A Diagnostic & Management Challenge  is a 2-hour course of study designed to provide an overview of chronic fatigue syndrome. The goal of this course is to assist health care professionals in detecting, diagnosing, and managing this complicated disorder.

This is an excellent source of information that you can recommend to your primary physician!

More information can be found at: http://www.cfids.org/treatcfs/default.asp

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Hemispherx Biopharma Announces to the IACFS That FDA New Drug Application Is Underway.

January 13, 2007 -- Dr. William Carter, CEO of Hemispherx Biopharma, reported the Ampligen experience to a crowd of interested providers before IACFS sessions began on Saturday, January 13.  He stated that since the 1980’s about 1000 individuals have been treated with Ampligen, using about 80,000 doses of this experimental drug. Phase III studies have been positive -- showing a 16% increase in exercise ability in treated subjects – and preliminary data has been submitted to the FDA toward the New Drug Application for Ampligen.  There was no speculation when this process will be complete or when Ampligen might be available to patients.  An earlier press release provides more details, and can be found at the Hemispherx website. (Posted 2/3/07)

 

Be sure to look at our recommended websites under "Links".


Updated February 2008

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