Translating the CDC Kansas Study to Real English

Discussion in 'Fibromyalgia Main Forum' started by colinjn, May 4, 2006.

  1. colinjn

    colinjn New Member

    I've been going over the news releases on the CDC CFS Kansas Study and have been trying to decode the medicaleze. Here is part of what I have come up with ( please add your comments but let's leave out political commentary....there seems to be plenty of posts for that sort of venting):

    1."Our working hypothesis is that the HPA axis and the brain is (sic) a plastic organ which changes its actual physical architecture, depending on how stress is accumulated over a lifetime,” Dr. Reeves explained."

    I take this to mean that the brain and body is constantly changing. One look in the mirror makes me a believer!

    2.“To some extent, genetics determine how you react to these stressors, and, more important, they actually determine your subsequent reaction to stress later during the life span.”

    So, my genes are like a recipe book. Nothing gets cooked until the page is opened and the selected ingredients are combined. In their model of CFS, that would be certain "stressors" which can include physical trauma ( me falling off a roof); emotional trauma ( look at any teenager); disease ( flu, etc.); Stress ( meeting deadlines).

    All these things pile up on the counter until the ingredients are complete for the CFS recipe to be complete. Or perhaps a better analogy would be like tumblers in a safe's lock falling into place.

    3.“We targeted about 50 genes and about 500 polymorphisms in genes that are active in the HPA axis,” said Dr. Vernon.

    HPA Axis disorders are serious, and this statement should be setting off more warning bells than I am hearing. Adrenoleukodystrophy is one such disorder. Which makes me wonder to what chromosomes these genes were attached!

    Where does heredity fit in, as is in the case of X-Chromosome related disorders?

    Can the mutation occur from outside sources, and when in life might this occur? I know that these will be questions for further studies. We cannot criticize the researchers for being too narrow. The best studies are the ones which are the most focused. And which conjure up the most specific follow up questions.

    4.“Of those 500 polymorphisms, five on three genes were very important, not by themselves, but together: the glucocorticode receptor, the serotonin, and tryptophan hydroxylase. The three genes distinguished the three fatigued groups from those that were not fatigued, and two of those genes distinguished between the fatigued groups.”

    So a certain cluster of mutated genes exhibit certain subgroups of CFS expression? I gather that this means there are more combinations to discover. More fun for molecular researchers and perhaps genetic therapists in the future.

    We have inherited a genetic mutation which is a time bomb, waiting for the accumulation of a certain combination of envronmental stressors. Once the combination is achieved, our genes send out commands which modify our brains and bodies, specificaly those parts of our brain and body which are closely related to the function of our Hypothalamus, Pituitary, and Adrenal glands. These master glands then begin operating according to the new commands instead of their traditional feedback mechanisms and influence the rest of our body; and the result is the experience we call CFS.

    Have I got this straight?

  2. SeaShel

    SeaShel New Member

    Colin - I don't know if you have it straight or not, but I certainly appreciate your efforts and am impressed with your translation!

    My parents were asking me more about this just the other day, and I told them I was waiting for someone to "translate" it so I could understand more clearly what was being said or implied. There is always so much more to the big picture than what I can glean from the medical terminology.

    Hope someone else with more cognitive function than I will chime in.

    Best, Shelley
  3. colinjn

    colinjn New Member

    Thanks for your comment Seachell.
    I also meant to include info on the HPA Axis. I will try to include a link to Wikipedia:

    It looks like they might be doing something to the definition. Wiki is an organic site. Great to wander around.

  4. Strawberry94

    Strawberry94 New Member

    I think you did a great job of describing it, but the question remanins, Why the clusters?
  5. Mikie

    Mikie Moderator

    As the letters drift around in the bowl, they spell out different words as they combine with other letters. Seems out genetic makeup is a bit like alphabet soup. Stressors seem to be the spoon which stirs the soup, causing new combinations.

    As elusive as all this is, I believe it is probably the most inportant advance to date. Much more research needs to be done but eventually, cures, or better treatments, will likely be produced.

    In the meantime, if we can reduce the stressors, both emotional and physical, it should help the situation. Also, I believe we need to address the damage already done and try to rebuild our health as best we can.

    Thanks for posting your take on this. There are a lot of really good minds here and these kinds of discussion are very important and interesting for us.

    Love, Mikie
  6. colinjn

    colinjn New Member

    Thanks for your replies and thoughts. The cluster question has me thinking in a couple different directions. The soup theory started a craving!

    The clusters could just be a response to an infectious agent ( the infamous hit and run virus) which sets off groups who are predisposed, or ready for that last tumbler to fall into place.

    As to how a wide variety of people could share a genetic mutation; we might look at environmental factors. I seem to recall a baboon study in an endocrinology journal which showed how an increase in certain chemical stressors produced a genetic mutation in the HPA axis.....I'm pulling this from the back of my brain.

    Wow, that hurt!

    PS Found it, I think, I got my baboons and sheep mixed up and the conclusion of the editorial just furthers the mystery:
    The time and duration at which the activity of the HPA axis is triggered by stressful stimuli are therefore likely to be the critical factors determining the good or bad roles of GCs in brain development, plasticity, and homeostasis.
    [This Message was Edited on 05/05/2006]
  7. Mikie

    Mikie Moderator

    Are often caused by environment. In some cases, it is through mutation that life adapts in order to ensure survival. Unfortunately, mutation can go awry, causing illness.

    One famous cluster outbreak of CFIDS followed government testing in the air over Punta Gorda, FL in the 50's. Yes, this is the same Punta Gorda which was wiped out by Hurrincane Charley 1 1/2 years ago. It's just about 30 miles up the coast from where I live. Of course, no one, except those involved in the testing, knows what was released. The cover story involved spraying for mosquitos but was discredited.

    There is no doubt in my mind that different types of CFIDS can occur, depending on the triggering stressor in people with defective genes. I come from the Denver area originally and there is a high incidence of all kinds of these illnesses there, including MS and Lupus.

    Knowing what I know now, I can look back in retrospect and see evidence of things to come. It may be that we can recover from a few stressors, or certain types of stressors, but some stressors, or accumulated stressors, may finally push us over the edge.

    Love, Mikie
  8. yellowbird

    yellowbird New Member

    I thought your genotype, your genetic makeup, is with you from birth and is present in every cell, mikie... i don't think an adult can have their DNA "scrambled"... a mutation would happen in the process of reproduction, I think...
  9. SeaShel

    SeaShel New Member

    I may have (probably) said this at some other time on this board, so please bear with me if so....

    Way back when I was first sick and trying to find answers (early 90's), I read somewhere on the net that there was anecdotal "evidence" (can't think of a better word right now) of 2nd generation offspring of women that had scarlett fever having autoimmune disorders. That could certainly explain a wide variety of folks having this mutation in my mind.

    My paternal granma had scarlett fever at age 15. Of 7 of us grandkids, FOUR of us have issues, and a fifth just has a rotten doctor that tells her she has chronic epstein barr! Lupus, cfids, possible MS, and the other one has something I can't ever remember the name of. He gives himself mild chemo shots for it. It's an arthritis/psoriasis nasty painful thing. Our granma also had very bad psoriasis.

    Something else to add to the soup!


  10. ulala

    ulala New Member

    camping ground. While we were eating we, and our food was sprayed for mosquitos. There was literally a light mist on our food. Because it was the only food we had we ate it anyway. I know my mother feels very guilty about that and it's in the back of her mind if that's why I'm sick.

    Anyone know if there's a test to test for pesticides in the body?
    [This Message was Edited on 05/05/2006]
  11. Tantallon

    Tantallon New Member

    my mother had that as a child, and she now suffers with psorisis ad well, and I've got this DD, hmm I wonder.


    A question - the Reverse Therapy that some find helpful do you think that this retrains the HPA into a different standpoint in order to correct the damage done by this illness. I don't really know that much about it I'll be honest, and people that have undergone this treatment tend not to divulge too much about it, other than it worked or didn't.

  12. Mikie

    Mikie Moderator

    The exact moment when gene mutation takes place. I wasn't very clear in my post. I am at least the 3rd generation in my family with these illnesses. Our family could have had genetic defects going back for centuries. I do know I've been sick all my life but until there were enough stressors/triggers to make me really sick, I always thought I was a normal, healthy person and I was very active. Now, I look back and see I had light symptoms clear into early childhood. It is often easy to see exactly when people "get sick" with CFIDS because it is often an infection which triggers it. It was Christmas Eve, 1990 when a mycoplasma infection triggered my illnesses to the point that I was never the same again. That was the trigger which set off my illnesses but the defective genes go back long before I was ever born.

    I am not well read on genetics and it's only what I pick up here and there that I base my opinions on. There are others here with much more knowledge than I. The latest studies are confirming my long-held belief that our illnesses are gentic at the root.

    I think looking at viruses and bacteria provide an excellent look at mutations. Bacteria are so good at mutating that every time an antibiotic is discovered, others must be produced fairly soon afterward because the bacteria can simply mutate into a resistant form. This is why it has been so dangerous for docs to prescribe them willy-nilly for everything under the sun. It is also why docs should use old tried and true ABX and not be prescribing the latest and greatest expensive ABX. Another problem is the patients who don't finish their course of ABX but stop as soon as they feel better. There are still bacteria alive in their bodies but now, the bacteria can mutate into a strain not sensitive to the original ABX and the doc now has to prescribe another ABX. It's a vicious cycle and the germs are winning.

    Same with viruses, which may be the smartest of all the pathogens. The reason people have to get flu shots every year is because either there is a new viral threat or the virus from last year has mutated into a new form. That is why there is so much fear about the Avian flu. Researchers believe that it will take five mutations for it to become transferable human to human. This is good in that it buys some time but even with time, no one can develop a really good vaccination or antiviral against some future strain, as yet not developed.

    What causes genetic defects, or mutations, in humans? Is it simply that there can be mistakes when copies of our DNA are made or do they also occur from exposure to environmental elements, like bacteria which mutate when exposed to ABX? Is the incidence of certain illnesses growing in response to the toxins in our environment? Autism has increased dramatically in children to the point that researchers are finally taking a look to see whether a cause can be found.

    There is a man with HIV who has never developed AIDS. Researchers found a defective gene which they believe protects him from developing AIDS. A group of researchers traced his ancestors through DNA and found that some of them survived the Plague in Europe. Those who survived have descendents with the same genetic defect. So here is an incident where a genetic mutation actually kept people well in the face of fatal disease. Interesting.

    Love, Mikie
  13. colinjn

    colinjn New Member

    Thanks again everyone for your thoughts. I have been going through the Study abstracts on the Co-Cure site.....a bit frustrating, but the only lead to solid data. Too bad some of the journalists in the press teleconference didn't nail the scientists down a bit more.

    Milkie, your bio is a bit spooky. I too was a regular long distance runner and became sick after a business trip to Florida in Feb of '91. Years later a rheumatologist uncovered an untreated mycoplasma and I whacked in the Cipro for a while. Is Florida another hotbed of infection?

    Also in my searches I have found that gene therapy is a fast growing field. Money is pouring in for the founding and building of facilities. So this will help us in a few ways. Both in motivating scientists to get a clear pic of the mutations involved in CFS and also for possible therapies to be developed in the future.

    Of course, in the Drug world, time is measured in decades.

  14. TXFMmom

    TXFMmom New Member

    I just saw my FM doc this week, and she treats CFS, FM, etc.


    I have to agree. She feels that the genetic differences spelled out in this study, will hold through, in a very similar way for FM.

    As for the clusters, THINK GENETICS. Groups of individuals where their ancestors settled in given areas. It would make sense, that some disease process hits them very hard, and all their systems could be overwhelmed, based upon their history, at similar times.


  15. victoria

    victoria New Member

    after experiencing my own symptoms and then seeing my son get them and worse & then be dx'd with chronic lyme, I have no doubt there has to be genetic and environmental stressors... I just think they really need to also be looking for the stealth pathogens.

    all the best,

    PS - BTW, we had some questions for you on the Holosync thread
  16. colinjn

    colinjn New Member

    Hi Again,
    If we interpret pathogens as just one form of stressor, then the model holds.

    A naturopath friend maintains that a normal body should be able to handle all these assaults and more ( of course he is a big mercury conspiracy guy).

  17. colinjn

    colinjn New Member

    I thought I would bump this after listening to the audio webcast of the teleconference. It was good to hear it.
  18. ANNXYZ

    ANNXYZ New Member

    my gut still tells me that the underlying reason for this illness is more than simply lyme . I suspect that I do not have a normal immune system , and that something external triggered this , along with a genetic tendency for the immune system to become scrambled .

    My hope and prayer is that God will open a window or turn on a light in some researcher's head and figure out
    how to UNSCRAMBLE our immune systems .
  19. findmind

    findmind New Member

    A very good and interesting interpretation. I can't disagree with a thing, lol.

    however, the myalgic encephalopathy of america org has a different take on the CDC findings, and I'm too ignorant to understand exactly what they are saying.

    Isn't the CDC study a replication of the one a Dr. Kerr and London medical society did, with even more genes?

    Replicated studies are the gold standard of research; maybe these two will inspire others to find more answers?

    There's always hope!
  20. colinjn

    colinjn New Member

    Hi Findmind,
    Would you have a link for the ME of A analysis?

    Also The difference betwen the CDC & Scottish study seems to be how they began their focus. I believe Kerr started out with a culprit in mind and went on the see how the gene expressed itself. The CDC hunted for patients with problems that fit the CFS definition and then compared their genes with "healthy" controls. The result was that the CFS types all shared a cluster of gene mutations which were not evident in the controls.

    But in saying this, it seems that the CDC's various groups of investigators did limit their focus on the genes involved in the HPA Axis. So they started their search by doing a clinical refinement.

    Anyone else good at digging and translating this stuff? Feel free to jump in.


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