CFIDS

[Guest guest]

Chronic fatigue immune deficiency syndrome. It's another name for chronic

fatigue syndrome, cfs.

There are a variety of infections that could be the culprit, if it's even

infectious. I think the cause of this condition is different for each person.

I would personally want to try antibiotics for this condition even if it doesn't

match lyme exactly or any other known infection. But, that's just me. Another

mimic is mycoplasma fermentens, or any of the other " associated conditions "

discussed in Lyme.

Lyme disease patients, or others with other chronic illnesses not primarily

cfids, are often referred to as having secondary cfs....diagnosis that fits the

cfs criteria except for the no other recognized cause aspect. FMS=fibromyalgia.

Some would argue that they are the same, some say they are different but a high

percentage of patients with one have the other.

I guess this is more than you wanted to know. LOL

See:

http://www.jersey.net/~joebur/nocfslux.htm

http://www.sky.net/~dporter/MSCFSABX.htm

http://www.geocities.com/HotSprings/Spa/6772/lyme-misdiagnosed-as.html

)

Cheryl

http://www.aero-vision.com/~cheryl/lymes.html

>

>what is cfids?

>

>kay

[Guest guest]

Thanks Cheryl, darned if I could remember what the ID stood for, I will try

to remember Immune deficiency.....and you are so right, that many of us with

Lyme do get the secondary dx's, I had both fibromyalgia and CFS as secondary

on my SSDI award letter. What's the saying, " A rose, by any other name

would smell as sweet " how about a disease by any other name is still

Lyme.....LOL!

Hugs,

Marta

-

>From: cheryl@...

>

>Chronic fatigue immune deficiency syndrome. It's another name for chronic

fatigue syndrome, cfs.

>

>There are a variety of infections that could be the culprit, if it's even

infectious. I think the cause of this condition is different for each

person. I would personally want to try antibiotics for this condition even

if it doesn't match lyme exactly or any other known infection. But, that's

just me. Another mimic is mycoplasma fermentens, or any of the other

" associated conditions " discussed in Lyme.

>

>Lyme disease patients, or others with other chronic illnesses not primarily

cfids, are often referred to as having secondary cfs....diagnosis that fits

the cfs criteria except for the no other recognized cause aspect.

FMS=fibromyalgia. Some would argue that they are the same, some say they

are different but a high percentage of patients with one have the other.

>

>I guess this is more than you wanted to know. LOL

>

>See:

>http://www.jersey.net/~joebur/nocfslux.htm

>http://www.sky.net/~dporter/MSCFSABX.htm

>http://www.geocities.com/HotSprings/Spa/6772/lyme-misdiagnosed-as.html

>

>)

>Cheryl

>http://www.aero-vision.com/~cheryl/lymes.html

>

[Guest guest]

Hi All,

I think it is Chronic fatigue immune deficiency symdrome.

Connie, MI

[Guest guest]

In a message dated 6/16/99 3:52:35 PM Central Daylight Time,

conniek@... writes:

<< think it stands for Chronic Fatigue Immune Deficiency Syndrome.......I

was Dx with

Depression, CFS, and Fibromyalgia before the correct dx of Lyme

Disease.......Connie >>

Actually, it is " dysfunctional " rather than " deficiency " , as parts of the

immune system are deficient and other parts may be over-active.

[Guest guest]

I think it stands for Chronic Fatigue Immune Deficiency Syndrome.......I

was Dx with

Depression, CFS, and Fibromyalgia before the correct dx of Lyme

Disease.......Connie

[Guest guest]

July 17, 2007

Chronic Fatigue No Longer Seen as 'Yuppie Flu'

By DAVID TULLER

http://www.nytimes.com/2007/07/17/science/17fatigue.html

<http://www.nytimes.com/2007/07/17/science/17fatigue.html>

For decades, people suffering from chronic fatigue syndrome have struggled

to convince doctors, employers, friends and even family members that they

were not imagining their debilitating symptoms. Skeptics called the

illness " yuppie flu " and " shirker syndrome. "

But the syndrome is now finally gaining some official respect. The Centers

for Disease Control and Prevention, which in 1999 acknowledged that it had

diverted millions of dollars allocated by Congress for chronic fatigue

syndrome research to other programs, has released studies that linked the

condition to genetic mutations and abnormalities in gene expression

involved in key physiological processes. The centers have also sponsored a

$6 million public awareness campaign about the illness. And last month,

the C.D.C. released survey data suggesting that the prevalence of the

syndrome is far higher than previously thought, although these findings

have stirred controversy among patients and scientists. Some scientists

and many patients remain highly critical of the C.D.C.'s record on chronic

fatigue syndrome, or C.F.S. But nearly everyone now agrees that the

syndrome is real.

" People with C.F.S. are as sick and as functionally impaired as someone

with AIDS, with breast cancer, with chronic obstructive pulmonary

disease, " said Dr. Reeves, the lead expert on the illness at the

C.D.C., who helped expose the centers' misuse of chronic fatigue

financing.

Chronic fatigue syndrome was first identified as a distinct entity in the

1980s. (A virtually identical illness had been identified in Britain three

decades earlier and called myalgic encephalomyelitis.

) The illness causes

overwhelming fatigue, sleep disorders and other severe symptoms and

afflicts more women than men. No consistent biomarkers have been

identified and no treatments have been approved for addressing the

underlying causes, although some medications provide symptomatic relief.

Patients say the word " fatigue " does not begin to describe their

condition. Donna Flowers of Los Gatos, Calif., a physical therapist and

former professional figure skater, said the profound exhaustion was unlike

anything she had ever experienced.

" I slept for 12 to 14 hours a day but still felt sleep-deprived, " said Ms.

Flowers, 51, who fell ill several years ago after a bout of mononucleosis.

" I had what we call 'brain fog.' I couldn't think straight, and I could

barely read. I couldn't get the energy to go out of the door. I thought I

was doomed. I wanted to die. "

Studies have shown that people with the syndrome experience abnormalities

in the central and autonomic nervous systems, the immune system, cognitive

functions, the stress response pathways and other major biological

functions. Researchers believe the illness will ultimately prove to have

multiple causes, including genetic predisposition and exposure to

microbial agents, toxins and other physical and emotional traumas. Studies

have linked the onset of chronic fatigue syndrome with an acute bout of

Lyme disease, Q fever, Ross River virus, parvovirus, mononucleosis and

other infectious diseases.

" It's unlikely that this big cluster of people who fit the symptoms all

have the same triggers, " said McCleary, president of the Chronic

Fatigue and Immune Dysfunction Syndrome Association of America, the

advocacy group in charge of the C.D.C.-sponsored awareness campaign.

" You're looking not just at apples and oranges but pineapples, hot dogs

and skateboards, too. "

Under the most widely used case definition, a diagnosis of chronic fatigue

syndrome requires six months of unexplained fatigue as well as four of

eight other persistent symptoms: impaired memory and concentration, sore

throat, tender lymph nodes, muscle pain, joint pain, headaches, disturbed

sleeping patterns and post-exercise malaise.

The broadness of the definition has led to varying estimates of the

syndrome's prevalence. Based on previous surveys, the C.D.C. has estimated

that more than a million Americans have the illness.

Last month, however, the disease control centers reported that a

randomized telephone survey in Georgia, using a less restrictive

methodology to identify cases, found that about 1 in 40 adults ages 18 to

59 met the diagnostic criteria -- an estimate 6 to 10 times higher than

previously reported rates.

However, many patients and researchers fear that the expanded prevalence

rate could complicate the search for consistent findings across patient

cohorts. These critics say the new figures are greatly inflated and

include many people who are likely to be suffering not from chronic

fatigue syndrome but from psychiatric illnesses.

" There are many, many conditions that are psychological in nature that

share symptoms with this illness but do not share much of the underlying

biology, " said Herd, 55, a former medical illustrator and a C.F.S.

patient for two decades.

Researchers and patient advocates have faulted other aspects of the

C.D.C.'s research. Dr. Kerr, a microbiologist and chronic fatigue

expert at St. 's University of London, said the C.D.C.'s gene

expression findings last year were " rather meaningless " because they were

not confirmed through more advanced laboratory techniques. Loomis,

executive director of the HHV-6 Foundation, a research advocacy group for

a form of herpes virus that has been linked to C.F.S., said studying

subsets of patients with similar profiles was more likely to generate

useful findings than Dr. Reeves's population-based approach.

Dr. Reeves responded that understanding of the disease and of some newer

research technologies is still in its infancy, so methodological

disagreements were to be expected. He defended the population-based

approach as necessary for obtaining a broad picture and replicable

results. " To me, this is the usual scientific dialogue, " he said.

Dr. ph Montoya, a Stanford infectious disease specialist pursuing the

kind of research favored by Ms. Loomis, caused a buzz last December when

he reported remarkable improvement in 9 out of 12 patients given a

powerful antiviral medication, valganciclovir. Dr. Montoya has just begun

a randomized controlled trial of the drug, which is approved for other

uses.

Dr. Montoya said some cases of the syndrome were caused when an acute

infection set off a recurrence of latent infections of Epstein Barr virus

and HHV-6, two pathogens that most people are exposed to in childhood. Ms.

Flowers, the former figure skater, had high levels of antibodies to both

viruses and was one of Dr. Montoya's initial C.F.S. patients.

Six months after starting treatment, Ms. Flowers said, she was able to go

snowboarding and take yoga and ballet classes. " Now I pace myself, but I'm

probably 75 percent of normal, " she said.

Many patients point to another problem with chronic fatigue syndrome: the

name itself, which they say trivializes their condition and has

discouraged researchers, drug companies and government agencies from

taking it seriously. Many patients prefer the older British term, myalgic

encephalomyelitis, which means " muscle pain with inflammation of the brain

and spinal chord, " or a more generic term, myalgic encephalopathy.

" You can change people's attributions of the seriousness of the illness if

you have a more medical-sounding name, " said Dr. Leonard , a

professor of community psychology at De University in Chicago.