Good Article on CFS -Sacramento Bee

[arminnie]

The yuppie flu. A hypochondriac's excuse. A drain on the Social
Security disability system.

Chronic fatigue syndrome has been called a lot of things the past 20
years. Mostly, it has been a stepchild of an illness, maligned or
misdiagnosed by doctors, pooh-poohed by employers and neglected by
drug makers.

That is beginning to change. The federal government last month
launched its first awareness campaign about CFS. The cause is
bolstered with new research and millions in additional funds
dedicated toward finding a cause and possible cure.

"This isn't hooey," said Dr. William Reeves, chief of the chronic
viral diseases branch at the federal Centers for Disease Control and
Prevention. "This illness ... was thought to be a bunch of upper-
class, yuppie, white women who were whiners. But there is a
substantial body of solid, scientific literature accumulating."

Although symptoms can vary among CFS sufferers, their illness is
typically marked by aches, fatigue, memory loss and confusion, and
insomnia or unsatisfying sleep.

In the parking lot of a Mercy medical building after the annual CFS
support group holiday potluck, the impact of the illness was
evident. As members prepared to leave, one lay prostrate in her van
sound asleep, trying to muster the energy for the drive home less
than 10 miles away.

Although adrenaline fuels the spirit of the group on this occasion,
members describe an illness that disrupts every aspect of their
lives.

"A few days ago, I felt like I had a 100-pound anvil inside me,"
said Suzy Parker, a former ranch hand and horse trainer from Auburn
now relying on disability benefits. "We miss the mingle of a work
world. This party is the highlight of my social life."
"When I wake up, I feel like I've been running a marathon," added
Jennifer Cox, 29, of West Sacramento. "I feel like Jacob Marley,
like I've been carrying chains all my life."

Although researchers have not pinpointed a single cause for chronic
fatigue syndrome, they know that at least 1 million Americans have
the illness, and that it affects men, women and to some extent
children -- regardless of race, ethnicity or economic status.
"Someone who has CFS is as disabled as someone with muscular
sclerosis, someone with AIDS or end-stage renal disease," said
Reeves, of the CDC. "The others will die from their diseases, but
those with CFS are no less disabled."

No blood test or X-ray can detect chronic fatigue, but documented
changes in the brain structure, immune system, central nervous
system and genetic makeup of CFS patients provide potent clues for
unraveling its mysteries.

Those afflicted with CFS are relieved to see that the medical
establishment is beginning to believe that their suffering -- long
thought to be imagined -- is real.

"We, as people who are at the bottom of the food chain, are at their
mercy," said Roseville resident Mike Riley, who has CFS. "But it's
probably the most seriously the federal government has ever taken
the disease."

Health officials in the United States first took interest in the
condition in 1985, after a cluster of people in Lake Tahoe's Incline
Village came down with a mysterious illness that featured headaches,
sore throats and prolonged fatigue.
Similar outbreaks were reported, including one in Raleigh, N.C.,
about the same time.
"The entire North Carolina symphony came down with a flu-like
illness and several members never recovered from it," said Dr.
Charles Lapp, who runs the Hunter Hopkins Center in Charlotte, a CFS
clinic, and sits on the federal CFS advisory committee.

Although mononucleosis was suspected, research determined that the
virus that causes mononucleosis, Epstein-Barr, was not the sole
cause for the patients' long illnesses.
The CDC officially named the malady "chronic fatigue syndrome" in
1988. But the name would be little help to those affected, who
continue to suffer in the absence of adequate medical care and
lingering skepticism.

Frustrated by the general lack of empathy, people with chronic
fatigue often resort to doing their own research on the Internet,
and those desperate enough seek unproven therapies.
"I've been fired by doctors," said Arlene Rubb, a 58-year-old
Rocklin woman who believes her illness was triggered by an aerobics
class and made worse after a car accident in 1982. "We are too hard
to treat. We don't fit in a box."

A former hiker who ran a group home and worked as a bookkeeper, Rubb
is now disabled. She takes nine medications, including morphine for
pain and a stimulant for energy during the day. She requires oxygen
while she sleeps, which she does in a reclining chair in her living
room.

Rubb has lost a lot of mobility and has limited stores of energy.
She can barely walk the 50 yards between her home and mailbox. She
gets exhausted just talking on the telephone; her neck muscles are
so weak that her head hangs down, her chin resting on her chest.
She said she could not manage without the help of her husband of
nearly 30 years, Rick Rubb, and others who shuttle her to doctor
appointments and pharmacies.

"It's humiliating," she said of the debilitation which, over the
years, dashed her dreams of a college education and weighed on her
relationships with friends and family.
"I was always a very independent person, and I have reached the
height of dependence."
Like most people with CFS, Rubb suffers mentally, too.
"I always had a good memory," she said. "I never had to study in
school. Now, I won't drive at certain times. I get lost sometimes,
right here in Rocklin."

Dr. Frederick Herman is a Granite Bay physician whose practice
welcomed many CFS sufferers before a diving accident forced him to
retire his license in early 2005. He said his own battle with
fibromyalgia, a related illness, helped him understand patients such
as Rubb.
"Physicians are always frustrated by illnesses they can't
immediately cure," he said. "If you have an ear infection, an
ingrown toenail or pneumonia, you can fix that and go on. You are
never trained to just treat symptoms and be a comfort to the
patient."

Part of the CDC's awareness campaign aims to change that, said
Reeves, with the introduction of a CFS diagnostic tool kit and a
push to get medical schools to teach the subject.
The federal government also can point to a growing body of
scientific evidence to help sway physicians who still doubt the
illness is real.

Dr. Anthony Komaroff, a professor of medicine at Harvard Medical
School and longtime CFS researcher, cites, for example, some genetic
abnormalities in people with CFS. He said he believes the illness
requires a genetically vulnerable immune system which is then
triggered by certain injuries or infectious agents.
"The immune system becomes engaged in a constant, months and
yearslong low-grade war against this foreign infection," he said.
Reeves said the central nervous system -- the brain and spinal cord -
- clearly plays a role in chronic fatigue syndrome. He said physical
or emotional stress, commonly cited as a condition preceding CFS
onset, activates a part of the nervous system involved in the immune
system and body's use of energy.

"Do we have a rapidly increasing idea of the pathophysiology of CFS?
Yes," he said. "Do we have something amenable to a curative
treatment? I am hoping, but I don't have anything now."
For Arlene Rubb and others like her, that means the daily struggle
will endure, and the necessary adjustments that make life bearable
will continue.

"It has changed everything," she said, but as time goes by you learn
how to accept it," she said. "It's the way it is."

I had not heard of the federal government doing anything for CFS.

 

[Schmeck]

This part caught my eye:

No blood test or X-ray can detect chronic fatigue, but documented
changes in the brain structure, immune system, central nervous
system and genetic makeup of CFS patients provide potent clues for unraveling its mysteries.


I've never heard of someone's genetic makeup changing and causing a syndrome. Are they saying that the DNA in every cell has changed?

 

[arminnie]

Another good article:

There's More Than Meets the Eye To CDC's April 20th Press Conference
Craig Maupin at http://www.cfidsreport.com

In certain circumstances, silence can be refreshing. In other circumstances, silence can be uncomfortable. At a recent press conference on April 20th, 2006, Centers for Disease Control (CDC) researchers laid out their plans for the future of chronic fatigue syndrome (CFS) research and clinical care. For several days following the press conference, the CFS community was remarkably silent -- uncomfortably silent.

The press conference generated the most publicity CFS has seen in the last 20 years, as major networks and over 400 newspapers carried the rearchers had uncovered "groundbreaking
results" which prove CFS has a "biological basis" as a cumulative,
post-stress disorder. CDC researchers also affirmed that some CFS sufferers are "as impaired as a whole as people with MS, as people with AIDS, as people undergoing chemotherapy for cancer". According to Dr. William Reeves, who directs the CFS program, the CDC will soon fund a provider education program designed so "providers, medical schools, and insurance providers get this more into their mainstream."

CFS advocacy groups have long complained that the federal government has not funded enough research, created enough media attention, or discovered effective treatments. But if the CDC's press conference fulfilled these requests, why weren't CFS sufferers breaking out in a collective celebration? Why weren't most advocates cheering the positive culmination of years of political requests for "more"?

Thursday, April 20th marks an attempt to shift the way chronic fatigue syndrome will be conceptualized - by scientists, physicians, and the public. The Centers for Disease Control is esteemed to be medicine's "Seal of Approval". More importantly, Reeve's cards, which have been painstakingly held close to his chest over the years, are finally on the table. On Thursday, Reeves and his allies appeared to be playing those cards in an attempt to sway public opinion and policy.

Despite the spin about "biology", the three genes which Dr. William Reeves claims will direct future research and clinical care for CFS are primary to the biological footprint of post-traumatic stress disorder and anxiety. Reeves claims a recent study's outcome has alerted the Centers for Disease Control to the importance of stress response in the pathophysiology of CFS. In the study, abnormal expression of genes involving stress were uncovered in a broad array of research samples which included people with fatigue, CFS, and other unexplained conditions. And
now, CDC researchers insist the study will change the way CFS is handled clinically by physicians, scientists, and insurers - very soon.

The CDC is well-positioned to enact this shift. At the moment, they possess a strong facade of flawed, yet "empirical", evidence. Reeves has also worked diligently to build strong financial and philosophical ties to advocacy leaders who are eager to assist his efforts. But more importantly, the CDC team is well-versed in the technical, yet gentle, terminology that can help move their ideas forward politically and socially. Terms like "biologically-based", "genetic predisposition", "homeostatic imbalance", "glucocorticoid receptors", and "allopathic load' assuage many CFS sufferers to a new post-traumatic stress disorder. Reeves made use of that knowledge on Thursday.

What didn't find its way into newsprint about the CDC's announcement was the collective concern of the CFS community. Most CFS sufferers viewed the announcement as a hallmark event in a long list of disappointments. They know they face a complex set of problems. And currently, they realize that there is little or no organized advocacy efforts in the U.S. addressing these issues. What are the problems?

First, the CDC's Wichita CFS research subjects don't appear to be very disabled. At the press conference, Reeves touted the fact that 84 percent of the Wichita samples his staff had evaluated to have CFS didn't even know they had any illness, much less chronic fatigue syndrome. And according to a CDC study published in 2003, the average combined workload (employment and chores) of those diagnosed with CFS by the CDC's research definition was close to 48 hours per week. Apparently, these Wichita CFS sufferers, diagnosed by using the CDC's 1994 research definition, are running circles around many healthy people.

In 1994, the CDC merged fatiguing conditions such as anxiety, sleep disorders, and fibromyalgia into the CFS research rubric, an approach which was favored by those who hastily espoused a psychiatric model for CFS. But questions remain as to whether this "integrative approach" is muddying, rather than clarifying, research results? Many CFS advocates feel the freewheeling approach has simply made their illness vanish. To them, the CDC is now left finding common markers for a wide variety of fatiguing disorders - an understandable outcome for an illness is named after a common human experience of "fatigue". The construct of CFS no longer serves who it was meant to serve.

Secondly, CFS sufferers are deeply concerned about the objectivity of the government agencies charged with researching CFS. As early as 1995, Reeves claimed that the distinguishing feature of CFS was "multiple major lifetime stresses in the year before one becomes ill." Since his 1995 comment, Reeves surrounded himself with researchers who seemed to share his early viewpoint. At the 2004 Oct 8-14 AACFS conference, Dr. James
Jones (widely considered Reeves right-hand man) postulated the idea that the CDC believed CFS may be a severe form of post-traumatic stress and fear/avoidance. Reeves most visible collaborations for years have been with a group of researchers who specialize in post-stress disorders at the Emory University Department of Psychiatry and Behavioral Sciences (Raison, Heim,
Miller). Reeves has since been named an adjunct professor of psychiatry at Emory University, a position for which Reeves has seemingly has few qualifications.

However, the most disheartening aspect of the Reeve's recent announcement was simply his decision to make the announcement at this time. Why declare that stress and post-trauma response will be the primary emphasis of future clinical care and research for CFS? Reeves clearly stated that policy would be based on a recent study designed so ONLY genetic snips pertaining to the HPA axis (which pertains to the biology of emotions and stress response) would receive consideration. Wouldn't it be more responsible, from a scientific and social perspective, to wait until a study was completed which could be designed to test the entire genome? Sadly, this question doesn't have a good answer. Even worse, it isn't being asked by those who should be asking it.

Admittedly, a small group of CFS advocates have hailed the CDC's push to shift CFS research and clinical care in a new -- more narrow -- direction. CFIDS Association of America director Kimberly McCleary said the findings contribute to an evolving, yet complicated, explanation of how genes, stress and other factors work together to cause and perpetuate the illness. Dr. Lucinda Bateman, a CAA board member, added, "This is a very important foundation for developing new treatments".

I would love to share their optimism. Yet, are these comments the voice of the CAA's contracts with the CDC, or are they the voice of those who suffer from CFS? As I perused a recent "Research Edition" from the CFIDS Association of America (CAA) this spring, I couldn't help but be saddened by the beliefs about CFS which were evident therein. If you profess to be a strong and principled CFS advocate, yet you decide to portray CFS as a sleep disorder, "genetic predisposition" to "misperceive" symptoms, or post-stress response, are you an effective advocate? Unfortunately, those who have supported this approach, financially and otherwise, have done more harm to CFS sufferers than good. A strong salary, a regional clinical center, or a deep bank account are not the most valuable assets any advocacy organization possesses. Because CFS is an illness which has been at the center of an ideological and political tug-of-war, it is quality and principles that matter most, not the "more".

I started the CFIDS Report several years ago because I wanted to create a haven from the controversy, anger, and divisiveness that often surrounds CFS. Yet, to place a positive spin on the developments of April 20th, 2006 would be insincere. Research, clinical care, and advocacy efforts for those with CFS will be adversely affected. And when a reliable, professional, and diplomatic voice was needed to articulate why CFS could be conceptualized outside Reeve's paradigm, the CFS community did
not have a leader who could act in that capacity.

I know those who will be negatively affected by recent events. They are my friends. They are my fellow community. Unlike the CFS samples in the CDC's Wichita dataset, they are unable to work 48 hours a week. On Thursday, April 20th, they reacted to the CDC's news about CFS with silence. But perhaps it was this silence, inaction, and a collective inability to address mounting problems that was the most disheartening news of all.

 

[Schmeck]

So, the CDC is stating that CFS could be based on a 'genetic predisposition', which is a lot different from saying that a person's genetic makeup has been altered...

Sounds like no one knows what really causes CFS, and it also sounds like a lot of people writing articles about it don't even know what genes are, how they work, and what happens when there's a problem...

 

[arminnie]

Sounds like no one knows what really causes CFS, and it also sounds like a lot of people writing articles about it don't even know what genes are, how they work, and what happens when there's a problem...

That pretty well sums it up. No treatment either. I'm just surprised the CDC is doing anything.