Discussion in 'Fibromyalgia Main Forum' started by Dolphin_lover, Apr 21, 2006.

  1. Dolphin_lover

    Dolphin_lover New Member

    I am so excited I just can't stand it!! Todays L.A. Times Newspaper (front page!) and the Washington Post both have great articles on CFS, how debilitating it is and the results of 14 separate papers, published in the journal Pharmacogenomics that our disease is caused by genetic mutations. It also goes on to say that we are "just as impaired as people with multiple sclerosis or AIDS or others who are undergoing chemotherapy for cancer". Dr. William Reeves also went on to say " They don't die, but they are severely debililtated."

    You can get both articles on line, but don't wait, sometimes they are only available for a limited time.

    Hope this helps sufferers, families and friends to understand this awful disease a little better and to be more compasionate and understanding.

    Maybe now, we can get on with some really great treatments, a cure (gene therapy?).

    Spread the word, send the articles to your friends, families, employers, etc.

    [This Message was Edited on 04/21/2006]
  2. phoenixrising2

    phoenixrising2 New Member

    Thanks for the info. It's wonderful news, isn't it?

    I would love to have an online copy of the articles. Where do I go to get them? I went to one of them and it said I had to be registered to get in.


    LISALOO New Member

    Here's what I got from Washington Post:

    Genetics May Play Role in Chronic Fatigue

    The Associated Press
    Thursday, April 20, 2006; 9:05 PM

    ATLANTA -- Chronic fatigue syndrome appears to result from something in people's genetic makeup that reduces their ability to deal with physical and psychological stress, researchers reported Thursday.

    The research is being called some of the first credible scientific evidence that genetics, when combined with stress, can bring on chronic fatigue syndrome _ a condition so hard to diagnose and so poorly understood that some question whether it is even a real ailment.

    Researchers said the findings could help lead to betters means of diagnosing and treating chronic fatigue syndrome and predicting those who are likely to develop the disorder, which is characterized by extreme, persistent exhaustion.

    "The results are ground-breaking," said Dr. William Reeves of the Centers for Disease Control and Prevention.

    Reeves said the study demonstrates that people with chronic fatigue syndrome are unable to deal with everyday challenges and adversity. That could include injuries, illnesses, divorce, even stressful jobs, the researchers said.

    The CDC estimates more than 1 million Americans have the condition, with women suffering at four times the rate among men.

    The research is contained in a collection of 14 articles published in this month's issue of Pharmacogenomics, a scientific journal.

    The centerpiece is a study of 227 people with chronic fatigue syndrome in Wichita, Kan. Over two days, doctors performed psychiatric evaluations, assessed their physical limitations, looked at their medications, and tested their blood and urine for chemical and biological abnormalities.

    The data included 500 clinical measures and 20,000 measures of gene expression, which is the process by which genes regulate cell activity.

    The information was then given to four teams of investigators, including medical experts, molecular biologists, mathematicians and engineers.

    Among their findings: Chronic fatigue patients tested with high levels of allostatic load, which is a stress measure of hormone secretions, blood pressure and other signs of wear and tear on the body. The patients were about twice as likely to have a high allostatic load index as people who did not have chornic fatigue syndrome.

    The researchers also found that certain genetic sequence variations in five stress-moderating genes showed up consistently in chronic fatigue patients. And they identified at least five subtypes of chronic fatigue syndrome, classified according to criteria that include their genetics and the way their symptoms unfold.

    "Because we have this information, we're going to be able to predict who is more susceptible to certain types of stressful events," said Suzanne Vernon, molecular biology team leader for the CDC's CFS Research Laboratory in Atlanta.

    Chronic fatigue syndrome is a complex illness characterized by at least six months of severe fatigue that is not helped by bed rest. Patients also report such symptoms as muscle pain and impaired memory.

    The cause has never been identified, and there are no specific tests for it. It was first identified in the 1980s, but many people _ including some health professionals _ have greeted CFS patients with skepticism, regarding it as the complaint of "a bunch of hysterical upper-class white women," said Reeves, who heads the CDC's CFS research program.

    The CDC research joins a cluster of studies published in the past eight months that implicate certain genes and gene expressions as a contributing factor to the condition, said Kim McCleary, president of the Charlotte, N.C.-based Chronic Fatigue and Immune Dysfunction Syndrome Association of America.

    The findings contribute to an evolving, complicated explanation of how genes, stress and other factors work together to cause and perpetuate the illness, she said.

  4. UnicornK

    UnicornK New Member

    Where in the Post is the article. Brain fart...uh, fog...has got me and I can't find it.

    LISALOO New Member

    Here's a second Washington Post article from today:

    Chronic Fatigue's Genetic Component
    Study Clarifies Predisposition to Syndrome

    By Rick Weiss
    Washington Post Staff Writer
    Friday, April 21, 2006; Page A08

    An intense battery of medical and psychological tests of people with chronic fatigue syndrome has strengthened the idea that the mysterious ailment is actually a collection of five or more conditions with varying genetic and environmental causes, scientists reported yesterday.

    But though the syndrome comes in many flavors, these experts said, the new work also points to an important common feature: The brains and immune systems of affected people do not respond normally to physical and psychological stresses.

    The researchers predicted that continued clarification of the precise genes and hormones involved will lead to better diagnostic tests and therapies for the ailment, which may affect close to 1 million Americans.

    "This is a very important step forward in the field of chronic fatigue syndrome research," said Julie L. Gerberding, director of the federal Centers for Disease Control and Prevention in Atlanta, which sponsored the project.

    The new findings come from the largest clinical trial ever to focus on people with the syndrome, a debilitating condition accompanied by unexplained extreme fatigue, memory and concentration problems, sleep disorders and chronic pain.

    Taking a multidisciplinary approach that agency officials said represents the future of public health, the CDC recruited 20 physicians, molecular biologists, epidemiologists, computational biologists -- even physicists and mathematicians -- to collaborate in an effort to tease apart the syndrome.

    The results, published in more than a dozen reports and commentaries in the April issue of the journal Pharmacogenomics, released yesterday, suggest that many cases of chronic fatigue have links to a handful of brain- and immune system-related genes that either harbor small mutations or are working abnormally for other reasons.

    That finding strengthens the case that some people are born with a predisposition to the condition. But those genetic links remain weak and incomplete, researchers conceded, leaving most of the syndrome's roots hidden in a fog of poorly understood physiological, neurological, psychological and behavioral factors.

    "Chronic fatigue syndrome is very heterogeneous. It's not just one thing," said William C. Reeves, who oversaw the project with CDC co-worker Suzanne D. Vernon. It will take time to identify all the biological pathways involved, Reeves said, but the growing evidence of genetic links should put to rest the idea that the syndrome is a made-up diagnosis for "a bunch of hysterical, upper-class white women."

    The new study involved 227 residents of Wichita, Kan., who spent two full days in a hospital undergoing a series of blood tests, hormone studies, psychological exams and sleep studies.

    About one-quarter of them met the formal definition of chronic fatigue syndrome. A similar number proportion had chronic fatigue but did not rank as having the full-blown syndrome -- in many cases because their fatigue was not severe enough. A third group met all of the requirements of the syndrome but also had melancholic depression, which does not fit the current diagnostic guidelines for chronic fatigue syndrome. And a fourth group, for comparison purposes, was healthy.

    The CDC, which invested about $2 million in the testing, then made blood-test results and other data available to researchers, who performed a wide variety of analyses.

    In one set of studies, scientists looked at the activity levels of 20,000 genes known to be involved in the body's response to such stresses as infections, injuries or emotional trauma. Several hundred were found to be over- or under-active in various subgroups of fatigued patients.

    Most of those correlations were weak -- that is, the gene expression patterns alone could not accurately distinguish those whose symptoms had been diagnosed as the syndrome from those whose symptoms had not. But in one analysis, the activity of just 26 genes did accurately predict which of six categories of chronic fatigue a patient had on the basis of symptoms and other clinical tests. That is a powerful hint that those genes -- many of them involved in immune system regulation, the adrenal gland and the brain's hypothalamus and pituitary gland, which are involved in the body's response to stress -- may hold clues to the disease variants.

    In other analyses, involving 50 genes that some people inherit with seemingly minor "misspellings," five of the 500 genetic glitches that were tracked repeatedly correlated with an apparent susceptibility to chronic fatigue. Those five include genes that affect levels of serotonin -- the neurotransmitter whose levels are tweaked by many antidepressant drugs -- and glutamate, a chemical that excites certain brain pathways in response to stress.

    The specific implications remain uncertain for now, said Vernon, a CDC molecular biologist. "But everybody's finding the same five genes to be involved, which is pretty cool."

    Several other studies on the Wichita samples found abnormal levels of various hormones relating to stress and mood -- additional evidence that chronic fatigue syndrome patients are genetically and neurologically "wired" to respond to stress abnormally.

    It is already known, Vernon said, that the brain can literally rewire itself -- breaking old connections between neurons while building new ones -- in response to various physical or emotional events. Chronic fatigue syndrome may be the result of a bad rewiring job, she said, in people genetically predisposed to handle stress poorly.

  6. Dolphin_lover

    Dolphin_lover New Member

    the Los Angeles Times article is on the front page (4/2106. I'm not savvy enough to copy and put on this site like some of you are. Maybe someone could do this for us?

    The L.A. Times article is the one that states how debiltated we are, among other things. I liked that one the best.....for giving to others to help their understanding of it.


  7. marilynb

    marilynb New Member

    Go to google & type in npr news. When that comes up, you will see it on the front page. Just clik on it & listen.

  8. Dolphin_lover

    Dolphin_lover New Member

    for putting the articles in their entirety for all to read.

    You are wonderful! Great work!!

  9. ilovecats94

    ilovecats94 New Member

    This is great news for those who suffer from CFIDS. Finally! I suspect researchers will find the same for FMS suffers, that it is genetic.

    Thanks bunches!

  10. starmom

    starmom New Member

    I knew that there had to be a genetic and a brain component. I know I have several traits that are Y chromosome traits. I am female totally XX, LOL.

    As a teen I had some genetic work done, looking for a specific trait. They found a mutation where one part of leg of the chromosome crossed over with another part of a Y chrom. NOT making me have a Y chrom, but have a small part elading to color-blindness (not totally, just a little bit) and some other supposedly male characteristics.

    This "exchange" is what the doc at the time thought contributed to a misdiagnosis, but does explain many things.

    I had the testing repeated in college with the same results. A bio prof was doing a genetic study. I missed so much class from migrianes and FM that he asked me to participate. He said the changes were far from unique, but not common. It is not the same doc as the study, but makes the study very interesting.

  11. kholmes

    kholmes New Member

    These articles, from the Washington Post and LA Times, are good for sending to family members or friends that have a hard time believing that CFS is a real, physical, biological illness, not depression or some other psychological problem!
  12. sues1

    sues1 New Member

    I want to laugh and cry.....I can say now that I am "certifitable" (legit recognizable illness).

    EVERYONE that posted wwith this news from the sources.....I am sending hugs.....many hugs.......Bless you.........Susan
  13. sues1

    sues1 New Member

    Bump......want everyone to read this..........Susan
  14. hopeful4

    hopeful4 New Member

    Thank you for posting these articles and wesbsites! We're validated!
  15. sues1

    sues1 New Member

  16. findmind

    findmind New Member

    Thank you for sharing the front page articles with us!!!

    I just listened to the CDC Webcast:

    Its 45 min. long, and mostly news reporters were asking the hard Q.s!

    One, from Wash. Post sounded like He had CFS, lol....he called twice!

    Good stuff for the general public to FINALLy hear, right?

    Let's hope the "dr. training" is more than cognitive behavorial therapy LOL!

    Thanks again, all of you who contributed to this thread....

  17. jimbbb

    jimbbb New Member

    Dolphin, et al..

    Yes CFS (and many other chronic diseases like it) have a genetic 'defect' component. But your own genes are not to blame for this (and neither were your parent's genes!) It has been know for quite some time that mycoplasmas (hardly more than tiny rings of genetic material) enter macrophages and will co-opt genetic code within the host's nucleus to produce proteins of their own design (causing inflammation, dysregulated hormones and other things that help them and confound the host's immune system). These are the genetic defects/mutations that the studies have found. We've known that this happens for quite some time. And we know that the only way to end those defects is to gradually kill off the bacteria that are the source of these mycoplasmas.

    Here is one such article describing this altered gene expression idea:

    "Using a cDNA microarray to study cellular gene expression altered by Mycobacterium tuberculosis"
    http://tinyurl.com/zrf42 (you only have to read the very short and clear abstract to get the complete jist of what they had uncovered).

    For those who agree that CFS is caused by forms of bacteria this is a simple confirmation specifically in CFS victims. For those who don't think that bacteria are the cause of CFS, they will have to keep hoping for a 'gene fixing drug' -- which will never happen.

    But it is a 'good thing' that the CDC study was done is getting wide publicity and that they have cataloged the many changes that take place -- that can only help in helping battle ignorance about these diseases.

    Hope this helps put things in some perspective ...

    [This Message was Edited on 04/21/2006]
  18. Adl123

    Adl123 New Member

    I'm so happy about this research. I heard about it on PBS radio. I feel like sending copies of the report to all those doctors who told me that CFS didn't exist.

    You know, I always knew it was real, but hearing this, and having hope of a more general acceptance, makes me feel really really good!

  19. LittleBluestem

    LittleBluestem New Member

    Thanks, Dolphin, for posting these. I appreciate being able to read them. I do have some reservations, though.

    I don’t like the “reduces their ability to deal with physical and psychological stress” bit in the Washington Post article. It makes us sound like we are genetically weak. Oh yes, and “people genetically predisposed to handle stress poorly“. I didn't have difficultly dealing with physical and psychological stress until AFTER I developed CFS.

    It is nice to see that they are looking at brain, immune system and endocrine system dysfunction, but what about the mitochondria?

    I’m not sure that it is a good thing that this gives pharmaceutical companies something to latch onto. We don’t need a bunch of drugs to mask our symptoms, we need something(s) to ‘undo’ the problems.
  20. elastigirl

    elastigirl New Member

    Wow! What great info! Thank you for taking the time to post the complete articles.

    Now may be the time to cut-out & mail these articles anonymously to some of the doctors who doubted us :)!

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