Is Chronic Fatigue Syndrome Real?

(WebMD)  Chronic fatigue syndrome — long doubted as a legitimate illness by many and largely ignored by the drug industry — got a boost from the federal government today.

Buoyed by a spate of recent scientific findings tying the disorder to possible genetic and physiological causes, Center for Disease Control officials said they want chronic fatigue syndrome to join the ranks of "real" diseases.

"The science has progressed," says Julie Gerberding, M.D., director of the CDC, which today began a campaign to raise awareness of the disease among the general public and doctors.

"We are committed to improving awareness that this is a real disease," Gerberding says.

In this effort, the CDC also released brief guidelines pushing physicians to consider chronic fatigue syndrome in symptomatic patients when no other physical or psychiatric explanations can be found.

The guidelines urge the use of moderate exercise, diet modification, and medical treatment for relief of individual symptoms like headache, sore throat, and sleep problems.

Common Problem

Studies estimate as many as 1 million Americans suffer from the disease. Fewer than 20 percent of those with the disease have been diagnosed, according to the CDC.

Chronic fatigue syndrome is defined as severe fatigue — not relieved with rest — that lasts six months or longer, and reduces the patient's ability to do usual daily activities.

Other symptoms include pain in the muscles and joints, problems with memory and concentration, headaches, unrefreshing sleep, sore throat, and tender lymph nodes.

The disorder has been cited as a major cause of absenteeism and lost work productivity, with the cost running in the billions of dollars.

Hard To Pin Down

Still, there is still no lab test, scan, or examination that can reveal chronic fatigue syndrome. It is diagnosed by a patient's history of illness, and after eliminating other conditions.

Also, there is no drug to cure it. Treatment focuses on bringing some relief from symptoms and the return of normal function.

"There's no diagnostic test, no blood test," says Nancy Klimas, M.D., a chronic fatigue researcher at the University of Miami, in explaining the medical community's long frustration with the disease. "These are hard patients, and medical management these days has to be done in six minutes, nine minutes — and that's not going to happen with these patients. These patients slow your day down."

"Historically it's been the lack of credibility of this illness that's been the major stumbling block," she adds.

Fight for Legitimacy

American medical history is rife with examples of diseases not deemed "real" until their physical cause was found.

Depression, long ignored and stigmatized, quickly found legitimacy when researchers realized imbalanced neurotransmitters were more to blame than bad parenting or a lack of personal fortitude.

Now, it appears chronic fatigue syndrome is poised for such a graduation.

Recent scientific findings have linked the problem to abnormalities in the body's autonomic nervous system, which controls blood pressure, heart rate, and other functions.

Meanwhile, genomic studies are beginning to suggest that sufferers carry genes leading their bodies to overreact to stress. In such people, significant stressors like trauma or a major infection could trigger an overresponse that takes the form of chronic fatigue.

"I'm not talking about minor events like public speaking," says William Reeves, M.D., director of the CDC's chronic viral diseases branch.

A study published in the BMJ in September found 12 percent of patients who had serious infections wound up with chronic fatigue symptoms six months later.

Other studies have suggested the illness stems from some kind of hyper-reactive immune system — easily switched into action but hard to turn off.

While the evidence is not definitive, it gos against long-held notions that chronic fatigue syndrome is a figment of patients' imaginations, says Anthony Komaroff, M.D., a professor of medicine at Harvard Medical School.

"In my view, that debate should be over," he says.

Mysteries Remain

Still, theories about a cause remain theories.

Reeves acknowledges that chronic fatigue syndrome is highly variable and unlikely to come with a simple explanation. "There may be more than one."

The CDC wants physicians to understand how to diagnose chronic fatigue syndrome, Gerberding says, "but more importantly be able to validate and understand the incredible suffering."

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SOURCES: Julie Gerberding, M.D., director, CDC. Nancy Klimas, M.D., University of Miami, Miami VA Medical Center. William Reeves, M.D., director, chronic viral diseases branch, CDC. Hickie, I. BMJ, Sept.16, 2006; 333:575. Anthony Komaroff, M.D., professor of medicine, Harvard Medical School.

By Todd Zwillich
Reviewed by Louise Chang, M.D

[kellyknows]

Ah - the anonymous "we" and "us". No Flames - just facts. You must not be one of the 500 biomedical researchers, clinicians, and educators that make up the IACFS/ME only professional association that actually studies the neuroimmune disease known as Chronic Fatigue Syndrome (also known as post viral fatigue syndrome and myalgic encephalomyelitis - biomedical studies date back to the 1930s and all three of the above names are listed by the World Health Organization in the ICD-10 under G93.3 both in the main listing and in the index since 1991. Fibromyalgia has been is listed under M72)

Perhaps you are one of the psychiatrists or an insurer who has a financial stake in expanding the psychosomatic section in both the DSM-V and the ICD-11? I'm afraid you are mistaken about the depression. You do not state whether the depression was pre-morbid or not nor do you mention that depression is found in patients with other chronic biomedical diseases - its presence doesn't make the disease any less a organic disease. You also don't mention that very few patients ascribe to either guilt or worthlessness which are required as part of the DSM-IVR diagnosis for depression in addition to physical symptoms. For example post-exertional exhaustion that remains for longer than 24-hours and is not alleviated by rest is pathological not psychological. Disagreeing with the medical evidence for symptoms is not the same thing as being medically unexplained.

Your epidemiology is also off ? viruses and toxins don't discriminate - ME/CFS strikes down women, men and children. If you are "tired" when you get home from work, and who isn't, but don't have post-exertional malaise (exhaustion), don't have an NK cell count lower than patient with AIDS, don't have neuropathic pain, have a working memory that doesn?t work, adult onset acalculia, neurological signs of neurological deficits, don't have gray matter shrinkage, inflammation in your brain, proinflammatory cytokines severely impacting your ability to sleep, viral titers showing repeated re-infection as well as orthostatic intolerance all of which were not present previously the good news is you probably don't have ME/CFS.

As for SSDI, they have very stringent requirements regarding proof of disability and no one has ever gotten wealthy from receiving money from a non-entitlement program that they paid into all their working lives. Medicaid is not based on what disease you have - it is income-based.

Please acquaint yourself with PubMed. There are over 2,000 published medical studies proving that there is an organic basis for this brain disease. Please don't be offended if I take the word of a Nobel Prize winner over yours.

The 2008 winner of the Nobel Prize in Medicine, Professor Luc Montagnier of France, says, "Scientists have already uncovered a lot about ME, but this information does not reach professional healthcare personnel, and the disease is still not taken seriously. It is about time this changes."

[kellyknows]

Ah - the anonymous "we" and "us". No Flames - just facts. You must not be one of the 500 biomedical researchers, clinicians, and educators that make up the only professional association that actually studies the neuroimmune disease known as Chronic Fatigue Syndrome (also known as post viral fatigue syndrome and myalgic encephalomyelities - biomedical studies date back to the 1930s and all three of the above names are listed by the World Health Organization in the ICD-10 under G93.3 both in the main listing and in the index since 1991. Fibromyalgia has been is listed under M72)

Perhaps you are one of the psychiatrists who has a financial stake in expanding the psychosomatic section in both the DSM-V or the ICD-11? I'm afraid you are mistaken about the depression. You do not not state whether the depression was pre-morbid (depression is found in patients with other chronic biomedical diseases - but it's presence doesn't make it any less a organic disease). You also don't mention that very few patients ascribe to either guilt or worthlessness which are required as part of the DSM-IVR in addition to physical symptoms. For example post-exertional exhaustion that remains for longer than 24-hours and is not alleviated by rest is pathological not psychological. Disagreeing with the medical evidence for symptoms is not the same thing as being medically unexplained. According to psychologists who are not Neo-Freudians, most patients have many positive plans should they ever go into remission - there currently is no cure although anti-virals and immodulatorers are two treatments with a proven track record in post infectious ME/CFS. You also don't mention that your epidemiology is off - viruses don't discriminate - ME/CFS strikes down women, men and children. If you are "tired" when you get home from work and who isn't, but don't have post-exertional malaise (exhaustion), don't have an NK cell count lower than patient with AIDS, don't have neuropathic pain, have a working memory that is intact, don't have gray matter shrinkage, inflammation in your brain, proinflammatory cytokines severely impacting your ability to sleep, viral titers showing repeated reinfection as well as orthostatic intolerance all of which were not present previously the good news is you probably don't have ME/CFS.

As for SSDI, they have very stringent requirements regarding proof of disability which you would know if you were actually someone in the medical field and no one has ever gotten wealthy from receiving money from a non-entitlement program that they paid into all their working lives. Medicaid is not based on whether "medicalknowhow" or anyone else believes they have a disease - it is income-based - once again you would know this if you were actually in the medical field.

Facts are not flames. You really need to acquaint yourself with PubMed. There are over 2,000 published medical studies proving that there is an organic basis for this brain disease. Please don't be offended if I take the word of a Nobel Prize winner over yours.

The 2008 winner of the Nobel Prize in Medicine, Professor Luc Montagnier of France, says, "Scientists have already uncovered a lot about ME, but this information does not reach professional healthcare personnel, and the disease is still not taken seriously. It is about time this changes."

[Medicalknowhow]

Sorry, there's a reason we all think the disease is fake. It is commonly found in young to middle aged women, most with depression, most with "chronic pain syndromes" and most with Fibromyalgia (another disease not really accepted by any of us). The treatments don't work because the vast majority of patients have psychiatric illness, not physiologic. Could some be hormonal problems? yes, but these are the first things we check with these complaints. Could some be "heavy metal poisonings?" perhaps, but definitely not the majority. This leaves the rest in the category of the psychiatric realm. There's a reason we treat fibromyalgia with Amytriptiline. hmm. Go figure. And by the way? I myself am too tired to do things I like after work. It's not a disease, and I don't deserve someone else's HARD EARNED money in the form of social security or medicaid to allow me to stay at home and sleep. Please people. go get jobs. let the flame war begin.
P.S. a recent study showed that antidepressants were no more effective than placebo, meaning everyone getting relief from amytriptiline, probably would have gotten the same relief from pizza. and it would have been cheaper! but not paid by my tax dollars... oops

[xpipimanx]

im a 17 yr old boy in a 90 year old mans body or atleast thats what its felt like for 3 years, i have cfs. ive gone to tons of doctors, i got depressed and suicidal BECAUSE of the pain, yah theres other patients out there that get what seems like cfs but its actualy pyschiatric but hey what about the people that actualy do have it its difficult for some people to get out of bed to be able to even exercise and once they do get to exercising its to painful the next day to keep it going making it impossible to rehabilitate. its understandable that people dont believe in the disease if they dont have it couse well they dont know what it feels like. dont criticize somthing if you dont know what its REALY like.

There is a cure. It's caused by high phosphate levels not in the blood but in the cells because of a kidney **********. Read "What Your Doctor May Not Tell You About Fibromyalgia": The Revolutionary Treatment That Can Reverse The Disease

[craftedntx]

In regards to the post by BIOLYNX49, I have actually had my throid tested numerous times, but still suffer from the majority of the constellation of symptoms described. I am a mother of two small children as well as a graduate student, at this point the mind is willing, but the flesh is weak. It is additionally distressing because my husband after over a decade in the military is beginning to experience the same symptoms. I was actually denied insurance because of the anxiety attacks that accompanied my CFS.

[june349]

I thought this argument had been decided years ago. I have a very good friend, and former co-worker, who fought a hard fight and was finally "diagnosed" in 1995 -- after years of "treatments" by dozens (hundreds?) of physicians the State of California sent her to -- this was initially thought to be work related as we were Psychiatric Technicians and worked with the dangerously mentally ill. Now I see where the same unenlightened arguments have been flying around again...I hope for everyone's sake the medical community doesn't dismiss this condition as "all in your mind" like they have so many others! When a very hard-working and productive person develops this condition it is devastating to them, their families and their friends ... nothing seems to alleviate the suffering and they don't enjoy much!

[zinger102]

Chronic Fatigue Immune Defficiency Syndrome may be caused by chemical injury. This is similar to Gulf War Syndrome, Agent Orange Vietnam Vets, and 9/11 first responders. The legal liability is horrid. So why acknowledge that it exists? After the immune system is damaged, nasty microorganisms can move in.

Let us take pesticide poisoning. Dursban, an organophosphate pesticide, was partially banned by the EPA in 1997. The lead researcher was Blondell, PhD.

Chronic Pesticide poisoning does not show any chemical markers in the blood. The acetylcholinesterase is normal.

However, pesticide poisoning is characterized by a sympathetic response (flight or fight) or parasympathetic response (tired vegetative) or both alternating. So for a couple of weeks you may feel very tired, thick mucous, fatigued and can't get out of bed. Then the next couple of weeks, you can't sleep, the mind is racing, and are very active, but feel exhausted.

One primary place that pesticide poisoned people are produced consistantly is Phoenix, AZ near the cotton fields. Cotton is sprayed with dangerous pesticides since you don't eat it.

Chronic Fatigue Syndrome may also be linked to Chemical Sensitivity and Multiple Chemical Sensitivity and severe allergies.

Low level fear/stress/anxiety, jumping through hoops to perform, perfectionism, fighting with parents, and psychologically traumatic experiences (for example, rape) can also lead to impaired excretion of all chemicals.

[biolynx49]

I had "Chronic Fatigue" for years until I finally had complete blood work done and found out that my Thyroid was in the dumpster. Also, my temperature has run between 96 and 97, all of my life, another indication of Hypothyroidism. Many other symptoms as well as Chronic Fatigue are caused by a malfunctioning Thyroid; they are: Fibromyalgia, Headaches & Migraines, Depression, PMS, Easy Weight Gain, Irritability, Hair Loss, Fluid Retention, Anxiety & Panic Attacks, Poor Memory, Poor Concentration, Low *** Drive, Unhealthy Nails, Dry Skin & Hair, Insomnia,Cold Intolerance/Heat Intolerance, Low Ambition, Low Motivation, Allergies, Acne, Asthma, Hives,Carpal Tunnel Syndrome, etc.

I suggest anyone to get blood work done especially testing for all horomones levels produced by the adrenals, pituitary, thyroid as well as the *** glands. You just might find the root to most of your problems and not keep putting bandaids on dozens of them, like I did for over 30 years. What a difference it has made in my life, as in "New Lease on Life." If you know what I mean. Try it you'll like it
Sincerely, Catryna White

[jann1033]

I have had CFS for over 18 yrs, have not been able to work since 1988 yet SSI still claims I am not seriously impared and could work...if i could find a job i could do in my pjs and maybe for 1/2 an hr on a good day only ( maybe once every few months) that would be great but so far i haven't found such a job. now that the CDC finally admits we aren't a bunch a fakers, SSI needs to follow suit and actually get some help to us. I got just Medicaid due to another chronic disabling problem so i can finally go to the DR...one reason I was denied SSI was due to lack of records but since i can't work and couldn't get Medicaid, how was i supposed to pay for the DR visits? that of course is IF i could find a Dr who actually believed my illness existed...the treatment given most CFS is similar to mine and imo is a crime given we live in one of the richest and most advanced countries in the world.

my daughter is only 25 and suffers from cronic fatigue syndrome i thought it was also (in her head) now i find myself with the same symptoms as her. The medical community needs further research into this dabilitating disease. As a grandmother and my daughter having a son a person cannot possibly give a child the love and attention the child needs and deserves,so i my oppinion something needs to be done asap!!