A Blood Test in 2009?

Discussion in 'Fibromyalgia Main Forum' started by petemora, Dec 28, 2008.

  1. petemora

    petemora Member

    Found this article today - good information - they're working on a blood test!

    ?HealthNews - Carslbad,CA,USA

    Family Health
    Chronic Fatigue Syndrome: The Basics
    By: Lara Endreszl
    Published: Sunday, 28 December 2008

    There is a debilitating illness that preys on multiple systems in the body that had doctors
    scratching their heads and patients hoping for a miracle: Chronic fatigue and immune
    dysfunction syndrome (CFIDS), also known as chronic fatigue syndrome (CFS) and
    myalgic encephalomyelitis (ME). Having many names just adds to the complexity of a
    chronic illness that cannot yet be explained but is being widely researched and deeply

    First known in the United Kingdom as ME, the disorder is more commonly known in the
    United States under the name CFS. As of September of 2008, the University of Nevada
    was teaming up with researchers all over the world from London to Belgium, and from
    professional agencies including the National Institute of Health, the National Cancer
    Institute, and the National Institute of Aging to study many samples of the disease in
    order to find a cause for CFS.

    Judy Mikovits, director of research at the University of Nevada says that her team is
    close to developing a blood test for diagnosing chronic fatigue syndrome and that they
    should have it within a year. By sharing their samples with the world, Mikovits says they
    are able to narrow down their results, ““We send the exact same sample around the
    world so everybody's looking at the same thing at the same time with the same snapshot
    and that's what's so important because everybody gets the same answer.””

    Statistics of CFS show that it occurs in about 4 of every 1,000 people in the United
    States, often diagnosed in women more than men and in adults in their 40s and 50s.
    Many CFS occurrences start with an illness resembling the flu and often in winter, which
    add to the confusion that most people think they have seasonal affective disorder (SAD)
    or a cold brought on by crummy weather. With the majority of CFS cases occurring
    suddenly and the rest occurring after several months of stress, the illness is hard to
    diagnose because of its varied symptoms and inconclusive test results because many of
    the symptoms are diverse and can occur with many other conditions.

    Varied symptoms include a lot of muscle and joint pain, chronic exhaustion (both mental
    and physical), hypersensitivity, depression often due to months of unresolved stress,
    poor immunity, and possible cardiac and respiratory problems. The most important
    symptom seems to be unexplainable fatigue lasting at least six months without being
    caused by exertion. Along with the major factor of fatigue, a lot more symptoms are
    needed for a diagnosis. Professionals usually can determine CFS with four or more of
    these symptoms: sleep that doesn’’t refresh you, muscle pain, memory or concentration
    impairment, multiple joint pain, general physical and mental sickness all day everyday,
    many headaches or severe headaches, tender lymph nodes, and a persistent sore

    Many people who end up with CFS/ME are also afflicted by fibromyalgia, a similar
    disorder but less severe because it is not associated with any other fatal diseases.
    People living with CFS/ME have also been known to get cardiomyopathy which affects
    the blood vessels, shingles, and/or cancer.

    With over one million Americans living with CFS and thousands more undiagnosed,
    chronic fatigue syndrome has been linked with a controversy that claims because the
    name isn’’t as serious as the condition behind it, many people tend to write it off as a
    specifically mental illness. In fact, a woman who has been suffering from ME/CFS for
    over 25 years told HealthNews of a study in which between 80 and 90 percent of
    undiagnosed CFS/ME patients are dismissed as neurotics or hypochondriacs and not
    taken seriously in the medical world. ?

    [my emphasis] ? If it is true that chronic fatigue syndrome strikes more people in the United States than lupus, multiple sclerosis, or lung and ovarian cancers, we shouldn’’t be asking what it is but why we don’’t know more about it.
  2. karynwolfe

    karynwolfe New Member

    Thank you for the article, petemora! It's very informative and the closest thing to accurate I've seen in a while. I still disagree with the grouping of everyone with ME and CFS into one category, however. THAT is why we do not know more about it. Concerning ME (also known as CFIDS, because of the immune dysfunction that is a serious part of ME), we know a LOT about it. That is why we are on the verge of a blood test. But what about those who didn't get sick because of a virus, but who still have CFS?

    I really wish they would make the diagnostic criteria more specific, because this disease can be very serious. One wrong medical opinion followed (just get more exercise!?!?) and a person can remain bedbound for the rest of their life because of CFIDS/ME. Doctors need to be careful with what they're diagnosing, because it's to the point where if someone has a condition that resembles the symptoms and their doctor doesn't think they have anything else (aka, doesn't do the proper testing), they can get diagosed with CFS (even if they actually have CFIDS/ME)... Then if they do get more exercise or more of a certain nutrient or fix an underlying hormonal imbalance (things that will NOT cure CFIDS/ME) and then everything goes away, suddenly "CFS is curable!" because the diagnostic criteria were not specific enough to differentiate that hormonal imbalance or nutritional deficiency or chemical exposure from the viral-induced CFIDS/ME. And for people who do not have CFIDS/ME, but who -still- show symptoms of Chronic Fatigue Syndrome because there isn't any other known cause, seriously need their own catered research group, because SOMETHING is making tons of people sick and it cannot all be a mental condition!

    [This Message was Edited on 12/28/2008]
  3. stschn

    stschn New Member

    Thank you for posting this. I'm still scratching my head over the statement that this illness is "widely researched and deeply investigated". I had it for 21 years and I have yet to feel that it is widely researched and deeply investigated. I'm believe it's been widely blown off and deeply resented by those of us with this illness that we were blown off. Joyce
  4. petemora

    petemora Member

    At least someone feels the illness is "widely researched and deeply investigated". Perhaps because the newspaper was printed in California, they are more aware of what's going on at Stanford (I think) and Nevada.

    Gotta agree with ya - what does bother me most about the dreaded disease is the attitude of other people toward us, whether they be friends, family, doctors, Social Security ALJ's, "hired guns" hired by my disability insurance company, etc.

    A few things I do know: I really don't care what they call it or what causes it, I just want a definitive test that will prove I have it! Hopefully, that would give us some weight with doubters. Then again, I am ready to retire the name CFS and get with the ME program....

    Janice P.
  5. stschn

    stschn New Member

    I could not agree with you more. The CFS name makes it so easy to make fun of us. I have heard "I must have a little of that" or "He's so lazy he must have CFS". Both said with a smile. People don't joke about other illness but the name alone makes it fair game. And in regard to the article I have copied it and am sending it to my local paper. The only thing I've seen on this illness in our paper was some 20 years ago with the Yuppie flu title and thankfully an article on Dr. Montoya's work with the Valcyte trial in January of 2007. Joyce
  6. AuntTammie

    AuntTammie New Member

    I want to know what exactly the blood test is looking at, bc if it's a virus and not everyone with CFS has that virus, they might wind up falsely dismissing a lot of cases of CFS. Then there will be more people who have it who are being told there is nothing wrong with them. While I like the idea of being able to definitively DX it, there are so many differences between people with the illnesses, it makes me concerned about the validity of the blood test.

    Also, I found the statement about CFS being worse than FM bc of the other illnesses associated with it a bit strange. I have never read anything saying that there is a correlation, let alone a cause/effect relationship between CFS and cancer.

    LISALOO New Member

    I'm worried about that too. I wonder what their diagnostic criteria could be. If it limits it to a small amt of people, it would be harder to keep SSD or get it.

    Though I would like a test.
  8. petemora

    petemora Member

    I HAVE heard that people with CFS have a higher rate of cancer. That makes sense to me because our immune systems are so out of whack!

    Janice P.
  9. petemora

    petemora Member

    My feeling is that ANY blood test will help those who test positive for it. I am curious as to what their criteria will be, too.

    I believe that the blanket names of ME/CFS/FM etc. probably include more than a few different illnesses. If they can narrow down just one of the illnesses, then they can work on a cure for it. For those people who test negative for the new blood test, then researchers can perhaps look at different criteria and eventually narrow down another illness.

    One step at a time....

    Janice P.
  10. karynwolfe

    karynwolfe New Member

    AuntTammie: That is a real concern of mine, as well. That's exactly why they need to make things more specific. There are a ton of people who get CFS who did not get it because of a virus. Or maybe they did get it because of a virus, but it's a widely known fact that CFIDS/M.E. has several initiating viruses that all do the same thing to the brain; which are they testing for? If they -are- testing for a virus, for the people who have CFS but not viral-induced CFIDS/M.E., one of two things seems likely to happen (one of which petemora also mentioned). (1) Those people are going to go through a round two of "it's all in your head" because of the government and doctors, which will be devastating, and all I see is a rise in suicide rates. (2) Or perhaps, somehow, the government will further their research and learn to make better diagnostic criteria while understanding that people are still really sick with -something-, and move forward... But I doubt I'm just being cynical when I say "I don't trust them." With how long it's taken to even get to this point, that thought is scary.

    Unfortunately, there actually is a correlation between M.E. and CFS with cancer. There is a high risk of thyroid cancer, for example. Studies also show a shriveling of the thyroid gland that is actually due to the disease itself. Many deaths, if not due from suicide, are due to cardiac or pancreatic failure which would not have happened had the person not had M.E. Fibromyalgia, while accompanied by other illnesses (it is often triggered by these other illnesses), does not decrease one's life expectancy (that I'm aware), nor is it degenerative. CFIDS/M.E. (and possibly some subsets of CFS) is progressive, and one study found their life expectancies to be shortened by 25 years. I think that's what they meant by "more serious."

    (I read too much, don't I? *lol* )

  11. stschn

    stschn New Member

    and I believe would help an awful lot of people. I think the trial being done at Stanford will show that like most other illness recovery is better if the cause is found early.

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