2/17/07 article by Mike Stobbe of Associated Press

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There are 3 different titles/headlines for the same AP article:

1) U.S. funding for study of chronic fatigue illustrates role politics

plays in disease research

MIKE STOBBE, AP Medical Writer, ATLANTA | The Associated Press |

2007-02-17 | Description: Saturday 5:18 PM GMT, , DOMESTIC NEWS, 1895

words

2) AP IMPACT: U.S. funding for study of chronic fatigue shows politics

role in disease research

MIKE STOBBE, AP Medical Writer, ATLANTA | The Associated Press |

2007-02-17 | Description: Saturday 6:39 PM GMT, , DOMESTIC NEWS, 1895

words

3) Politics Plays Role in Disease Research

MIKE STOBBE, AP Medical Writer, ATLANTA | Associated Press Online |

2007-02-17 | Description: Saturday 9:29 PM GMT, , DOMESTIC NEWS, 1895

words

And here for your educational use only is the article:

Copyright 2007 Associated Press

All Rights Reserved

Associated Press Online

February 17, 2007 Saturday 9:29 PM GMT

SECTION: DOMESTIC NEWS

LENGTH: 1895 words

HEADLINE: Politics Plays Role in Disease Research

BYLINE: By MIKE STOBBE, AP Medical Writer

DATELINE: ATLANTA

BODY:

The television spot shows a 40-year-old woman, in slow motion, as

her family and co-workers rush by over the course of a day. It ends

with her sitting alone, amid the remnants of a birthday party.

" The worst part isn't even that everyone thinks the problem's in my

head, " a female voice intones. " The worst part of chronic fatigue

syndrome is missing my life. "

The spot is the centerpiece of a remarkable $4.5 million public

awareness campaign bankrolled by the U.S. Centers for Disease Control

and Prevention. It's remarkable, in part, because of the role advocacy

and politics played in creating it.

Chronic fatigue syndrome is not contagious or life-threatening, and

medical skeptics continue to question its merits as a focus for public

health. But the money is being spent, in part, thanks to strategic

lobbying and congressional interest.

It is not the only example, or the most successful. In 2000, the

March of Dimes lobbied Congress to create a center on birth defects

within the CDC. In December, advocates including Autism Speaks, an

effective fundraising organization founded by General Electric Co.

Vice Chairman Bob were credited with passage of a bill that

targeted nearly $1 billion over five years to research that condition.

But chronic fatigue syndrome paved the way, said Hearne,

former executive director of Trust for America's Health, a public

health advocacy group. She is now a visiting scholar at s Hopkins

University's Bloomberg School of Public Health.

In the 1990s, Congress authorized money for CDC to study the cause

of chronic fatigue syndrome. In 1998, advocates caught the CDC

diverting nearly $13 million of that funding and spending it in other

areas. There was a federal probe, and CDC eventually replaced the money.

It proved to be a turning point in how the agency interacts with

and is influenced by advocates and the lawmakers who support them,

Hearne said.

" I think it was really the first wake-up call to the agency that it

needed to understand and respond to the needs of the public, " she said.

Clearly, most researchers believe chronic fatigue is real and that

there is strong justification for the CDC to be working on it. But

some are skeptical, and feel the agency has leaned too far, at times

putting lesser ailments ahead of the public good because advocates and

politicians demand it.

" I personally believe the CDC's emphasis on this has been wrong

from day one. They have responded to pressure, " said Dr. Manu, a

New York-based researcher who does not believe chronic fatigue is a

real disease.

Chronic fatigue syndrome is characterized by at least six months of

severe fatigue not helped by bed rest. Patients also report muscle

pain and impaired memory. The CDC estimates more than 1 million

Americans have the condition, with the rate four times higher among

women.

It became a national health issue in 1984, when clusters of cases

were reported in Incline Village, Nev., and in Lyndonville, N.Y.

Similar reports came in from around the country, although

scientists believe the illness probably existed before then but wasn't

recognized.

One challenge is that chronic fatigue syndrome doesn't have

observable symptoms, said Hillenbrand, a journalist who wrote

the best-selling book " Seabiscuit " and who has been diagnosed with the

illness.

" I have definitely gotten a raised eyebrow and a 'You look fine!' "

said Hillenbrand, 39.

Chronic fatigue syndrome came to be known as " yuppie flu, " because

many of the sufferers were white, educated and relatively affluent.

Several key members of Congress took it seriously, though,

including Harry Reid, the Democratic Senate majority leader, who was a

Nevada congressman when the Incline Village cluster was reported.

Another was Porter, an Illinois Republican on the House

Appropriations subcommittee that oversees public health programs and

agencies. Porter became involved when a constituent, Chicago-area

philanthropist Ted Van Zelst, visited and told Porter about his

daughter's mystery illness. In 1987, Van Zelst became the first person

to testify before Congress requesting research money for chronic fatigue.

At about the same time, a small organization formed in Charlotte,

N.C., that became the nation's most influential chronic fatigue

advocacy group the Chronic Fatigue and Immune Dysfunction Syndrome

(CFIDS) Association of America.

The group was influenced by AIDS activists, who in the 1980s

eschewed gentle advocacy for hard-nosed politicking and government

watchdogging. But the CFIDS Association had a tougher challenge: Their

syndrome doesn't shorten lives, there 's no proof it's infectious, and

many doctors refused to take it seriously. It was unexplained, yes,

but not fatal more like a Drew mystery than an Agatha Christie.

At the CDC, the investigation was placed in the division

responsible for deadly infections like influenza and rabies. The

response there to chronic fatigue was tepid, said Dr. Reeves,

who now heads the CDC's chronic fatigue syndrome research.

" They deal with acute infectious agents that make people dead. That

was the mind-set, " he said.

The CFIDS Association, led by Kim McCleary, applied pressure by

becoming a part of the government apparatus. Heeding congressional

requests, federal officials in 1995 gave advocates a place on a U.S.

advisory committee on chronic fatigue syndrome. It was a turning

point, because the 5-year-old panel previously was populated only by

scientists and government officials.

It was at one of the panel's meetings in 1998 that CDC's misuse of

chronic fatigue funding was exposed.

McCleary pressed a CDC official on how the chronic fatigue money

was being spent, and Reeves emerged as a whistleblower who refused to

back up his boss, Dr. Mahy. Mahy contended $6 million had been

spent on the disease in the prior year as Congress requested.

But Reeves had complained to Mahy that chronic fatigue efforts were

not getting the money Congress intended.

" It was basically, 'Go out there and lie for me,' " Reeves said in a

recent interview. " I just basically said 'No.' "

Mahy, who still works at CDC, declined to comment for this article.

An investigation found that nearly $13 million of $22.7 million

meant for chronic fatigue work was spent on other programs. Lawmakers

grilled the CDC director at the time, Dr. Koplan.

Porter, the Illinois congressman, was upset but there wasn't much

he could do, since Congress usually doesn't mandate how the CDC should

divvy its money among programs. Congress puts spending recommendations

in appropriations reports, but they're not binding, said Porter, who

now works for a Washington law firm.

That's an important point: There are authorization bills that often

get a lot of press, such as the recent autism bill, but they don't

come with actual money. Advocates say it's a bit like parents giving

their teen permission to go to the movies, but not the allowance money

to buy the ticket.

" Almost never do we substitute political judgment for scientific

judgment in the actual appropriations " for the CDC, Porter said.

Some current and former CDC officials said that shifting funds to

other disease-fighting efforts was not a crime. " This wasn't a case of

someone taking money for a holiday on the French Riviera, " Koplan

said, in a recent interview.

But the agency clearly bungled how it communicated with Congress,

said Koplan, now an administrator at Emory University. " We had not

done procedurally what the CDC should do, which is inform Congress and

ask their permission when funds for one health problem are used for

another health problem, " he said.

In the 2006 budget year, the CDC spent about $6 million on chronic

fatigue research. That doesn't include the $4.5 million for the slick

new ad campaign unveiled in Washington last fall; and the NIH spent

another $5.5 million on the disorder.

CDC funding for the condition has been steady in recent years, and

chronic fatigue syndrome is only a minor budget line at the agency.

Dental health programs get twice as much, and birth defects and

disabilities efforts get more than seven times as much, according to

agency budget figures. Domestic HIV/AIDS research and programs

typically get more than 130 times the chronic fatigue allocation.

The public awareness campaign money is considered reparations for

the diversion of funds in the mid-1990s, said McCleary, who was master

of ceremonies at the CDC press conference on the new ad campaign.

" It's sort of considered their good faith for any of that ever

happening, " she said.

CDC officials say science is driving the public awareness campaign,

not guilt. Scientists at the press conference noted the CDC's chronic

fatigue research group generated about 80 peer-reviewed papers since

2000 that provided new information about the cost and genetics of the

condition.

" The science is there and we need to respect and make that science

more visible, " CDC chief Gerberding said at the event.

At the same time, officials recognized that they still don't know

for certain what causes the illness. There still is no medical test

for it, nor a cure. It may be a collection of illnesses, with

different mechanisms.

Reeves co-authored a 2004 article that found a decline in chronic

fatigue in the first few months after the Sept. 11, 2001, terrorist

attacks. A study published last year found that childhood abuse and

neglect increased the likelihood of chronic fatigue in some patients.

Such findings may suggest a complex interaction between stress,

genetics and other factors in why some people develop chronic fatigue.

Or, according to Manu, it may suggest something else entirely an

absence of real physical illness.

" I don't think there is much to it, " said Manu, a professor at

Yeshiva University's Albert Einstein College of Medicine. He believes

many of the skeptical researchers have moved on to other topics and

have stopped talking about chronic fatigue.

Manu is one of only a few scientists still making such arguments.

Others say scientific consensus has shifted away from Manu, and most

doctors no longer doubt chronic fatigue is a real medical condition.

The new ad campaign is playing a pivotal role in finally moving

American society past skepticism, CFIDS Association officials said. As

of the end of January, the spot has aired 4,425 times in 122 markets

on 180 TV stations, McCleary said.

Advocates are also working with Hillenbrand, who is considered the

highest-profile celebrity to speak often and openly about the

condition. Celebrities make a big impression on many members of

Congress, McCleary noted.

She recalled watching a hearing several years ago when the actor

appeared before Congress to talk about autism. At the

time, he was starring in the television hit " ER " as Dr. Mark Greene.

" They treated him like he was a doctor, " she said.

Hillenbrand said it's gratifying that most doctors and government

officials are finally taking the condition seriously, and she

appreciates how warmly she's been treated by leaders such as President

Bush.

" The first thing the president said to me when I first met him was,

'Don't get up!' " said Hillenbrand, who has been to the White House

four times, including for a screening of the " Seabiscuit " movie.

" It's nice to know that there is understanding and compassion in

high places.

"

On the Net:

CDC: http://www.cdc.org

CFIDS Association: http://www.cfids.org

LOAD-DATE: February 18, 2007

end of article.

From Mickie: Y'all keep in mind that most newspapers, magazines,

journals, and internet news providers subscribe to AP, so this article

or parts of it will appear hundreds of times in the following months.

Don't get upset about it; it's not good for your health.

Also, please remember that these are US taxpayer dollars being

discussed NOT donations to CFIDS Assn. The CDC spends only federal

funds. Let's be thankful for people at CDC like Dr Reeves, without

whom we would not have the Pharmacogenomics articles, nor the GA CFS

study (in progress), and be thankful for people like McCleary at CFIDS

Assn, who spoke up to get the US Congress to allocate the dollars in

the first place, and to get the proper allocation at CDC in the second

place!

>

> From: Doe Serena Cochran

> Sent: Monday, February 19, 2007 9:36 AM

> To: 'letters@...'; 'dabernathy@...'; 'cfids@...

> '

> Subject: To: The Editor of The Richmond Times Dispatch, The Editor of

> the Associated Press, Kim McCleary, and Nova Bouknight

> Importance: High

> Sensitivity: Confidential

>

> [also I got a read receipt from this addy: think its the

> same:Abernathy, Dorothy [DAbernathy@...]

>

> Medical Skeptics continue to question its merits as a focus for

> public health?!?!?

>

> Some researchers feel the CDC has leaned too far, at times, putting

> lesser

>

> Ailments ahead of the public good??!??

>

> Some current and former CDC officials said that shifting funds to

> other disease-

>

> Fighting efforts was not a crime.?!?!?!?

>

>

>

> Hi, my name is Doe Serena Cochran, and this article came out in

> our paper Sunday, February 18th, 2007. Let me just address the 1st

> statement that offends me personally. I have had CFS/ME (Chronic

> Fatigue Syndrome Disease) since 1998. I was very sick that first

> year with headaches of a different nature from the fall of 1997 until

> the fall of 1998 when the Dr. I had at the time refused to diagnose

> me with CFS/ME because " I didn't have Epstein-Barr. " Yes I do. It

> lies dormant or it did, in my body for the rest of my life because I

> had mono in highschool. So it can reawaken at anytime as Mono or

> Epstein-Barr or CFS. I was tested, MRI-d and tested again. Finally

> I was put on anti-seizure medication and anti-Parkinson's disease

> medication for the extreme pain I was having being told that I had

> Fibromyalgia and I knew darn well I didn't have it. I stabled but

> not fully from that point on and then in the fall of 2005 I was

> finally diagnosed by the wonderful Dr. I go to now with CFS and

> narcolepsy (mild). I could not stay awake at home and could not stay

> awake behind the wheel of my car. Then slowly my mind switched off I

> could not longer do the chores around the home and started to depend

> on my husband for everything. In Sept. 06 I developed a oral ulcer

> virus that is inside my mouth, in my nose and out side my mouth on my

> face. It is not 2007 and we still haven't gotten rid of it thinking

> it could be some interaction between the drugs not meant to treat

> CFS/ME but it is the only thing we have. So yes, it merits a good

> big focus for public health especially women. I have one friend in a

> wheelchair because of CFS or ME as they call it in Canada. I have

> another who has had it for 26 years. And I have another friend who

> has had 15 years went into remission during her pregnancy in 1998 and

> has come out of it this past Christmas 2006. There is no treatment

> for our disease and we are a few out of millions. There is also no

> cure, and you've got the nerve to say to me that it doesn't merit

> focus for public health? And that it is a " lesser ailment " . You

> insult me and the many people who are very incapacitated from this

> disease and the things that trigger the worsening of symptoms. You

> insult me by insulting CFIDS Association of America because when NO

> ONE was there, they were.

>

> Also, I know about the shifting of funds from CFIDS to another Drs.

> agenda at the CDC and I do not give a freakin rip, it was wrong, and

> unethical. That was money that he took away from finding all of us a

> cure or at lease a decent CFS treatment. You know what this is in my

> mind and those of others, this is the Democrats starting their

> healthcare removal system. God forbid!!! I would email the CDC

> myself but as usual they are one of those sites that do not have an

> email so that you can't " fuss " at them. Oh and by the way, have you

> stepped into private CFS/ME clinics to speak with the Drs. The

> clinics that that is their only specialty? Interesting, first death

> was about two weeks ago. She died from an overlapping illness that

> is one of the many things that happens with CFS because of our immune

> systems. Oh and I didn't mention this, I've been homebound since

> September of 06 and it is now Feb. 07. You betcha we are worth the

> public health's notice and we are not " lesser " and it rips me a new

> one to think that you would even believe such whoever the chicken at

> AP News was that wrote this I hope you see this, you offend me once

> again, I can't say this enough, if you don't have it, you have no

> idea what you are saying. May God forgive you. ~~Mrs. Doe Serena

> Cochran

>

> PS If this is sent to the wrong department of the RTD and the AP

> please do not send it back to me, send it to the right people. I am

> too sick to expend the extra energy to do that for you.

>

> God bless all of you at CFIDS. It's all about politics too isn't it

> guys?

>