cfs: mayoclinic has changed its stance slightly re: ebv

Discussion in 'Fibromyalgia Main Forum' started by bakeman, Mar 1, 2009.

  1. bakeman

    bakeman New Member

    months ago the website said ebv was once thought but disproven to be a cause of cfs. i also don't recall the mention of hhv-6 either.

    now it reads:

    Of all chronic illnesses, chronic fatigue syndrome is one of the most mysterious. Unlike definite infections, it has no clear cause. Several possible causes have been proposed, including:

    * Depression
    * Iron deficiency anemia
    * Low blood sugar (hypoglycemia)
    * History of allergies
    * Virus infection, such as Epstein-Barr virus or human herpesvirus 6
  2. emmally

    emmally New Member

    I was looking at there website last week because a friend of mine was going there for something unrelated to cfs and I wanted to see what is said about their treatment of CFS. I don't recall seeing hhv6 listed in the causes when I looked. As I have it and you would think I would remember seeing that . All I remember reading is the part about how they used to think cfs was caused by ebv but not anymore. Now I went back to the site and it does not say that anymore....hmmmm
    [This Message was Edited on 03/01/2009]
    [This Message was Edited on 03/01/2009]
  3. Forebearance

    Forebearance Member

    I'm glad they are updating their website, but I am still shocked at how woefully behind the times they are. They appear to still be confusing chronic fatigue with ME/CFS. Ack.

  4. AuntTammie

    AuntTammie New Member

    They don't start off too bad when defining it, etc (but not great either), but when you get to treatments, they are still way into graded exercise and CBT (& the way that they explain it is ridiculous and not exactly accurate), and they contradict themselves when it comes to EBV (in the causes they say that it could be one, but in the treatments (under anti virals) they say that they have proven that no relationship exists with EBV and CFS).

    then they include ritalin and concerta as possible treatments, even though these have been shown to not be helpful for most and to perpetuate the push crash cycle for many.

    and they go on to say that many people find it more bothersome (lovely word - like it's just a minor annoyance!) when they FIRST get CfS and then they improve, and many even recover completely (yes some do, but they make it sound like that is the likely progression).

    They barely touch on the mitochondrial involvement, but w/o ever actually using the word mitochondria....I forgot how they worded it exactly, but if you didn't already know that they were talking about the mitochondria, you would never know it from what they wrote....and they downplay that part so much, it doesn't even begin to give anyone an idea of how key it is.

    the overall tone is still one that seems to imply that it's more psychological than physical and that it's really not that bad
  5. TeaBisqit

    TeaBisqit Member

    They need to remove the word Depression. None of us were depressed before we got sick. But it is natural to be depressed AFTER getting sick because you no longer have a life.

    How about Microwave Radiation Sickness as a cause? Or Chronic Aluminum, Mercury, Flouride.......keep going.......Poisoning?

    There are a million legitimate causes for making us sick. Chronic Lyme, the list goes on.
  6. SpecialK82

    SpecialK82 New Member

    bakeman -thanks for posting. I'm encouraged that they are changing their views, albeit at a snail's pace. Any move in this direction is a positive for us - but I do hate the continued focus on depression :(

  7. bigmama2

    bigmama2 New Member

    thankyou for this info. you are wise. like some sort of a cybersherlock holmes, uncovering the mysteries of cfs in cyberspace. those mayo clinic &^%^*^$%@ folks had better be a changin their tunes. you know what i mean, bakeman??????

    ps- amber alert
  8. munch1958

    munch1958 Member

    They have not helped a single person that I know of over the past 19 years. Our best man from our wedding had kidney, liver and heart failure but they could not figure out why. They did a heart and liver biopsy which provided no answers. He passed away at the age of 58.

    During my years as president of the Chicago Chapter of the Endo Association, many women with endo went there and came away disappointed.
  9. waltz

    waltz New Member

    I remember seeing the old version too. I wonder if someone wrote to them to change it. Good job whoever did.

    P.S. whoops, guess what it still says on the Treatment page

    "Antiviral drugs, such as acyclovir. The possible connection between chronic fatigue syndrome and Epstein-Barr virus led researchers to test whether powerful antiviral medications could improve the symptoms of chronic fatigue syndrome. This approach has not been found effective, and the connection between Epstein-Barr virus and chronic fatigue syndrome has since been disproved."[This Message was Edited on 03/05/2009]