A question about the latest CDC findings on CFS

Discussion in 'Fibromyalgia Main Forum' started by kholmes, Apr 28, 2006.

  1. kholmes

    kholmes New Member

    In the Los Angeles Times article that many of us have read about the latest CDC findings on the genetic basis for CFS, CDC director, Julie L. Gerberding says, "This is the first credible evidence for a biological basis" for the syndrome.
    After the recent Georgetown study, which revealed specific proteins in the spinal fluid of CFS patients, and among many other studies in the past (there are many abstracts of articles from peer reviewed journals on this website), how can this be true?
    Is this the first study the CDC views as legitimate?
    How can this be the FIRST evidence for a biological basis for the illness?
    Perplexed about this,
    Kholmes
  2. Jen102

    Jen102 New Member

    i would like to know the answer--if someone mispoke and they should have said something self-serving like this is the most important, or most recent, or if they believe this is the first. Afraid we will have to wait and see what the cdc does with all of this. blessings. jen102
  3. UnicornK

    UnicornK New Member

    Sounds like something we should ask Julie Gerberding herself. Anyone know how to get in touch with her? If anyone can get me an addy, I'll try to reach her.

    God Bless.
  4. kholmes

    kholmes New Member

    There must be a way to contact her at the CDC, or at least her secretary.
    Either she must be unaware of the Georgetown study on proteins in the spinal fluid of CFS patients, or she is dismissing a valid study from a major university!
    Either way, it's nice to see that people are FINALLY starting to see that CFS is a physical illness.
    Kholmes
  5. springrose22

    springrose22 New Member

    Good idea, send her an email and/or phone, and will await your report. This is not the first physical evidence, but I think the CDC might be a little slow. Certainly the CDC's information on their website was a bit behind the times. However, the CDC cannot avoid acknowledging studies that have come before this one. I believe both the Georgetown study and this one have value and bring hope to us. Marie
  6. findmind

    findmind New Member

    When I first posted about this, I said it was a "race" going on....the CDC has NEVER found a cure for any disease whatsoever...

    They are in a race with the rest of the country and the world to show they are actually doing something with the money Congress has given them to study CFS. 227 patients in the study??? Ive been told any less than 500, and a study is meaningless.

    Britain, Scotland, Belgium, are all way ahead of the CDC. so this was just a big show for their egos.

    Yes, the study is important....but not if CBT and exercise will be the "treatment", you just wait and see!

    Angrily,
    findmind
  7. ANNXYZ

    ANNXYZ New Member


    to cure CFS . More likely , they are using this TINY study as an image management tool after the debacle a few years ago where the funds were LOST for a previous study . Sorry to sound so negative , but thay do not cure
    many diseases ( if any ) .

    My biggest fear is that research will go to create drugs that will not really help us GET well , but will make lots of money for the pharms on our misery .

    I used to give $$ for MS research . I do not give to their orgs anymore , and neither do my friends with MS ,
    who see no benfit from the years and millions spent .
    For give me for being so cynical, but people make more money on our continued struggles than in CURES .

    Many of the MS drugs have been studied in Europe and found totally useless in patients there . I have literally seen a couple of my friends linger near deaths door on drugs that are promoted as having a big effect
    on the disease .

    I am more hopeful that a cure will come from a doctor
    afflicted with this HELL , or by the FFC observations of
    data with patients .

    Maybe I sound nutty , but I just pray God will open SOMEONE's MIND to be able to connect the dots on this
    disease .
    [This Message was Edited on 04/28/2006]
  8. TXFMmom

    TXFMmom New Member

    The reason they said this is because proteins in the SP fluid can be caused by other conditions.

    However, what excited them about this study is that it was approached in 14 different specialties and with different methodology and THEY ALL FOUND THE SAME THING AT THE SAME PLACE.

    That pretty much seals it for medical people. Few physicians would dare tata something which was arrived at by so many different types of physicians and researchers, especially when they came to the VERY SAME CONCLUSIONS, despite approaching it in many different manners. Remember, the researchers were selected by the CDC, and included many of the pre imminent physicians in their specialties.

    Once they coomplete the larger, follow up, if this is replicated, then it shall become a recognized indicator of the disease and the insurance companies and disability companies can blow it up their nose.

    At least, WITH THIS STUDY, THE DOCTORS SHOULD SHUT UP, AND START SHOWING SOME RESPECT. TO DO OTHERWISE WOULD OPEN THEM UP TO CRITICISM.

    Genetic testing can be expensive, but since this test identified SPECIFIC genes in the DNA structure, it may be that some interprising company shall soon put out a genetic test which just looks at those specific genes, or perhaps, a genetic strand of ten genes around that area.

    Personally, I think that FM and CF are just subtypes of the same disorder.

    What needs to be done now, is to replicate the same study on FM patients and see if the same genes are effected or they should test the genetic area on which they concentrated.

  9. TXFMmom

    TXFMmom New Member

    Personally, I prefer the European studies. Most of them are paid for and supervised by the Universal Health care systems of those countries.

    They are interested in finding what works, and at the least cost, and the pharmaceutical companies don't pay for the studies, SO THEY DON'T HAVE THE ABILITY TO BUY RESEARCHERS.

    Believe me, it HAPPENS IN THE US, ALL THE TIME. I DON'T TRUST ANY RESEARCH UNTIL I KNOW WHO PAID FOR IT.

    They do prefer larger numbers for a study which is indisputable, that it why they have undertaken the 1,000 patient study, which is supposedly, already underway.
  10. patches25

    patches25 New Member

    The latest that has come out of the CDC has made me angry. There are over 2000 researches that show this disease is biomedical.

    This has made so many people angry that leaders of several CFS groups have gotten together and written the Congressional Action letter calling for reform. It is a great letter.

    Before MS (multiple sclerosis) was brought before the congress, the CDC considered MS as "hysterics disease". It took the MS societies and the backing of congress to get the disease recognized as a legitimate disease. We need that kind of help to get this recognized correctly so that we will eventually get better medical care.

    We have waited long enough and suffered terribly. It is time that we get the research monies to be used on organic causes for this disease. And how long will it take for the medical community to stop rolling their eyes and letting us know that this is "all in our heads". If the CDC doesn't recognize it correctly then neither will the doctors we see.
    E.

    PS And some of you have had the experience of a judge telling you there is no such thing as this disease. And you have to fight and fight to get on soc. sec. and medicare which you so desperately need. Please I am begging you to get behind the grass roots initiative and other things that prickles has suggested. We truly have to keep trying to get this changed. The way it is recognized now there is very little hope. Without us contradicting the latest trivializing of this disease by the CDC, then we are letting it stand as stated. Please help.[This Message was Edited on 05/01/2006]
  11. bioman85

    bioman85 New Member

    I'm confused as to what you're reffering to. I thought that the CDC has officially recognized CFS as a real disease for quite some time now - forgive me if I'm wrong.


    chris
  12. woofmom

    woofmom New Member

    I wonder if they asked any of the participants if they used aspartame, msg or were exposed to toxic chemicals on a daily basis. Bet they didn't.
  13. patches25

    patches25 New Member

    Yes the CDC says this is real but they also are very strongly stating that this is genetic and implying strongly that this is stress related. They have downplayed the aspect that this is caused by organic causes such as viruses and bacterias.

    Genetics? Large groups of unrelated people have gotten this disease (such as Incline Village). People have gotten this disease after blood transfusions. People have gotten this disease after outbreaks of various flus. And traumas? Are some of carrying a low grade infection of some kind at really gets going when the body is at a low point. There are a lot of questions that need answered. And the latest CDC papers do suggest stresses. And yes stresses can mean organic causes but most people do not see that when the word stress occurs. E.
  14. bioman85

    bioman85 New Member

    Well stress I think is absolutely involved with these diseases. How many people got this disease during a stressful time in their lives, or a stressful event? A great number, I think. There are other factors involved depending on who is ill - even the studies pointed out there are 5 distinct genetic profiles they found all of which were correlated with chronic fatigue.

    I think any new research is good, and will lead to more knowledge of the disease.
  15. meditationlotus

    meditationlotus New Member

    about this illness starting in June. The CDC is using its own money, not research money, to assist in a huge publicity campaign along with CFIDS of America. The campaign is supposed to continue thru December 2007 and reach newspapers, magazine, news media, medical journals, etc. So hopefully the campaign will show the results of studies that prove that this illness is real. I think I read this in the ProHealth vitamin catalog or the CFIDS of America journal.

    We can never give up hope.
  16. TXFMmom

    TXFMmom New Member

    Genetic damage CAN OCCUR AFTER BIRTH.

    Teh individuals with this genetic defect do not have to be born with it, but most probably are.

    However, genetic damage can and does occur with exposure to things such as radiation, chemicals, infections, disorders.

    This could account for Gulf War Syndrome, which many believe was the result of those individuals being exposed to depleted uranium in the weapons and the areas where they had exploded. Then pile on all the shots the military gave them, and some chemicals and you have genetic damage.
  17. julieisfree05

    julieisfree05 New Member

    ..my right arm that NO ONE from the CDC "mis-spoke"!

    They have been lying about this illness since their first investigation in Incline Village 20 years ago.

    If they admit that there is, and has been, other "credible evidence", they are admitting that they are incompetent, stupid, or they've been lying - and they will NEVER do that!

    Read "Osler's Web" by Hillary Johnson for the entire story. It will infuriate you, but I think everyone with this illness needs to understand what the CDC has done to make our lives so miserable, and make it so hard for us to get help.

    julie (is free!)

    So often times it happens
    that we live our lives in chains
    and we never even know we have the key.. - The Eagles