Important new CFS study reported in LA Times Encouraging

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

  1. onedaymagpie

    onedaymagpie New Member

    Below is a very encouraging study reported by the LA Times today - Cheers to all, Maggy:

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    Chronic fatigue syndrome, often dismissed as the imaginings of depressed and whiny people, is caused by genetic mutations that impair the central nervous system's ability to adapt to stressful situations, according to a major new study by the Centers for Disease Control and Prevention.

    Small changes in many of the genes in the brain prevent the nervous system from rebounding from everyday stress and from less frequent, stronger pressures, eventually triggering a cascade of molecular responses that leave the patient severely debilitated, researchers reported Thursday in 14 separate papers in the journal Pharmacogenomics.

    "This is the first credible evidence for a biological basis" for the syndrome, said CDC Director Dr. Julie L. Gerberding.

    The findings will provide immediate help in diagnosing the disorder, which often puzzles physicians because of the broad spectrum of symptoms and the absence of defining biochemical markers.

    It should also lead to the development of effective treatments for patients, who receive only therapy to mitigate symptoms — or in some cases are scoffed at as slackers.

    "It is very hard to treat an illness until you understand what it is physiologically," said Dr. Lucinda Bateman of the Fatigue Consultation Clinic in Salt Lake City. "This is a very important foundation" for developing new treatments.

    Chronic fatigue syndrome, commonly known as CFS, was first recognized in the 1980s but was long dismissed as the complaint of "a bunch of hysterical, upper-class white women," said Dr. William C. Reeves of the CDC, who led the new study.

    Diagnosis is difficult because many of the psychological symptoms, in mild form, are common traits of a modern stressful life.

    Over the last two decades, most physicians have come to recognize CFS as a valid illness, he added, but there has been virtually no information about its causes. It has even been difficult to provide a precise definition of the disorder.

    Experts agree that it affects as many as 1 million Americans, causing severe exhaustion, widespread musculoskeletal pain, impairments in thinking and sleep disturbances.

    It strikes four times as many women as men but is equally debilitating in both. It occurs most frequently between the ages of 40 to 60.

    Physiological manifestations, which must be present for at least six months for a diagnosis, can include sore throat, tender lymph nodes, headaches of a new or different type from those experienced in the past, and malaise after exertion.

    "They are as impaired as people with multiple sclerosis or AIDS or who are undergoing chemotherapy for cancer," Reeves said. "They don't die, but they are severely debilitated."

    To learn more about the disorder, a CDC team focused on Wichita, Kan., which turns out to be a statistical microcosm of the United States in terms of wealth, urbanization, age, race and other factors.

    Initially, the team surveyed a quarter of the population, or about 56,000 people, looking for symptoms of CFS.

    Reeves said they found that about 16% of people with the disorder had been diagnosed and received some treatment.

    The group then identified 227 CFS volunteers who each checked into a hospital for two days to undergo a complete set of mental, physical, blood, sleep and other tests. Included was an assessment of the activity of 20,000 genes.

    Data in hand, the CDC assembled four independent teams — each containing experts in medicine, mathematics, molecular biology and computer science — and challenged them to interpret the results. Each team produced two or three of the new papers, and their results were surprisingly consistent.

    The teams found that there were at least four distinct forms of the disease, each with its own genetic profile and symptoms but all including disabling fatigue. Some had relatively mild symptoms, whereas others were debilitating.

    But all the forms shared genetic mutations — technically called single nucleotide polymorphisms — related to brain activity that mediated the response to stress.

    In particular, five polymorphisms in three genes were "very important," said Dr. Suzanne Vernon of the CDC, co-leader of the study. Those polymorphisms alone were sufficient to diagnose about 75% of cases.

    The genetic findings are particularly important because they can lead to new drugs, said Dr. K. Kimberly McLeary, president and chief executive of the Chronic Fatigue and Immune Dysfunction Syndrome Assn. of America.

    "Pharmaceutical companies have been sitting on the sidelines because they have not been able to get their hands around CFS," she said. "This gives them something to latch onto" and identifies treatment possibilities that haven't been explored.

    The teams also found a strong correlation between the severity of CFS and what they called allostatic load, the cumulative wear and tear on the body resulting from chronic or inadequate adaptation to stressors — such as changes in everyday routine, disease, and physical and emotional trauma.

    The CDC is gearing up to attempt to replicate the findings in a study of 30,000 people in Georgia, Reeves said.

    The data have been given to 30 other groups of scientists who will meet at Duke University in June to present their own interpretations
  2. Rene

    Rene New Member

    Thanks!!!!!!!!!!! I so agree!!!!!!!!
    Rene
  3. shell

    shell New Member

    They just called to get the participants... then actually took the ones with CFS criteria and tested their genes, etc. They are doing a study now in Georgia to replicate this study with thousands of participants, rather then 100's.
  4. mbofov

    mbofov Active Member

    THanks for posting - I was going to do the same thing, I just read the article in my copy of the paper. It's verrrry interesting. They don't say the main cause is stress per se, but genetic mutations which damage the ability to deal with stress.

    Maybe this darn disease (and us) will finally start getting some respect?

    Mary
  5. TXFMmom

    TXFMmom New Member

    I am certain that there is a defect, genetically, which plays a part in the development of FM, as in CF.

    My mother has it, I have it, and my sister has it.

    My symptoms are much worse than are theirs.

    I, however, was exposed to anesthetics for years, as I was a Certified Registered Nurse Anesthetist, and the chronic exposure, along with the tremendous stressers involved in the profession, then having cancer, then a very severe auto accident, and the real topper, a sexual assault set me into a tailspin of FM symptoms.

    I think many of us are genetically predisposed to this, and when we are subjected to certain stressors, or certain levels, then it triggers the disorder.

    PERHAPS, THEN THE BOZOS WHO HAVE DISCOUNTED ALL THIS WILL FINALLY SHUT UP AND RECOGNIZE IT FOR THE SERIOUS DISORDER IT IS.
  6. jakeg

    jakeg New Member

    THE BOZOS WHO HAVE DISCOUNTED ALL THIS WILL FINALLY SHUT UP AND RECOGNIZE IT FOR THE SERIOUS DISORDER IT IS.

    The bozos will never admit that they were wrong and will discount it even though there is proof. These bozos will always aproach anybody with these DD (CFS,FMS) with the same attitudes that they always have.

    Jake
  7. onedaymagpie

    onedaymagpie New Member

    What I find most encouraging about this is the hope that this new information could lead to new treatments and/or medications that address the physiological causes - wow, this could be great!
  8. meditationlotus

    meditationlotus New Member

    I'm so encouraged. And I would think that this would help with genetic research being done on other diseases. This my lead to a whole new level of healing for everyone.
  9. bunnyfluff

    bunnyfluff Member

    I am printing it out to take with me to every Dr I see. Thanks so much for the article!
  10. springrose22

    springrose22 New Member

    The word stress refers to disease, and physical and emotional trauma, as stated in the article. That covers a lot of things in life. I believe in this theory. For me it was a combination of EBV, huge work stress, and probably some mercury. So stress can occur in many forms. Even too much exercise can be a stressor. Don't be insulted by the word stress. I think that this is a very encouraging study. Marie
  11. Mikie

    Mikie Moderator

    This is very encouraging. It is also interesting to see that there are several forms of this illness which could explain why we are different and react differently to treatments. The most encouraging of all is that someone is taking our illness seriously enough to even look for possible causes.

    Love, Mikie
  12. SusanLeeScott

    SusanLeeScott New Member

    If you look on the CDC website, you can find a transcript of the doctors' press conference, a press release describing the findings, and links to the articles in Pharmacogenomics, a scientific journal, where the 14 studies were published (not all of the articles can be accessed for free). A very encouraging study!
  13. onedaymagpie

    onedaymagpie New Member

    Hi there -
    The date of the article is 4/21/06 and the website is LATimes.com
    Maggy
  14. Sandyz

    Sandyz New Member

    I was happy to see this report coming out. Although I didn`t like the part about not being able to handle stress. The most important part was them saying we are as dibilitated as much as someone with Aids, MS or undergoing Chemo. That is hugh and I hope it makes more people understand us.
  15. Mikie

    Mikie Moderator

    Stress can be viewed in many ways. Medical professionals often refer to stressors on the immune system. This doesn't mean we can't handle the stress of daily living although that also affects us and evidently causes us to be ill. I do not believe that this is meant in any negative way. We already know that stress is the worst thing for us and for anyone who is ill. Defective genes may cause stress to make us ill where it may just cause transient stress for healthy individuals. Even healthy individuals will get ill if enough stress is encountered.

    I think we may be sensitive to anything which smacks of blaming our illnesses on our emotional state. It has been used to marginalize our illnesses and used as an excuse to deny us proper medical care, pain relief, and disability (although that is changing).

    I do see this as good news.

    Love, Mikie
  16. ephemera

    ephemera New Member

    I'm not sure how comfortable I feel with the CDC info & spin. I also feel confused as to what's up with the CDC. The more I sit with the information the less happy I am with it all.

    For instance, i go to their website & look in their index of health topics. I can find fish poisoning & formadelhyde, but not FM.

    In their reports I can read about fatigue, but not much on environmental impacts.

    Given the world we live it, I wonder why more of us are not diagnosed with infectious diseases & so-called syndromes.

    I've read the transcripts of the press interview & what I could find on the CDC site that was availble free. Why is it that our tax money is used to do the studies, then the info is published in journals that the public really has no access to in any free or meaninful way? And I wonder what role the CDC sees itself playing in regard to CFS, especially since I think other existing health organizaitons have CFS/FM standards like Canada & the World Health Organiztion.

    How much does the CDC regard the issue of ME?

    And finally, this one really bothers me from the CDC transcript & brigns out the best of my scepticism.

    "Pharmaceutical companies have been sitting on the sidelines because they have not been able to get their hands around CFS," she said. "This gives them something to latch onto" and identifies treatment possibilities that haven't been explored.

  17. Mikie

    Mikie Moderator

    We all know that the pharmaceutical companies won't lift a finger unless there is the potential of profits--big profits. If this new study info gives them incentive to investigate new drugs to treat our illnesses, I think it's a good thing.

    Despite expensive treatment clinics where CFIDS is aggressively treated, so far, it seems no one is cured or even comes close. The best we can hope for is remission. I agree with aggressive treatment, especially where infections are concerned, but I do not feel we can ever be cured or even hope for permanent remission until more is known. If genetics do play a part in our illnesses, and most everyone now does believe this, our only hope is through research into these defective or mutated genes. From that research may come treatments or even a cure.

    I am lucky in that I am making progress with my CFIDS but it has been agonizingly slow and unless better treatments are found, I may never be able to live fully without carefully watching my energy levels. New treatments could change all that.

    I can understand being skeptical of anything which comes from the CDC or the NIH. They have not been our friends in the past; however, I do think we need to be more optimistic about our future. Maintaining an optimistic attitude, in itself, can make a big difference in how we function. I prefer to see the glass as half full and hope to fill it up in the future. Otherwise, the only other choice is despair and I won't allow myself to live in despair.

    Love, Mikie
  18. onedaymagpie

    onedaymagpie New Member

    I feel very hopeful on this. Of course, it will probably be many years off, but wow - imagine just feeling normal again, it would be great.