"Science News" Features CFS Story and Latest CFS Research

Discussion in 'Fibromyalgia Main Forum' started by JLH, Aug 7, 2006.

  1. JLH

    JLH New Member

    "Science News" Cover Story Features Chronic Fatigue Syndrome & Latest CFS Research

    "Science News" is not a personality-focused publication, but the cover of its July 1, 2006 issue features the face of a Chronic Fatigue Syndrome patient emerging from shadows.

    The cover story – “A Vexing Enigma: New Insights Confront Chronic Fatigue Syndrome,” by Ben Harder – does much to explain and validate CFS scientifically among this magazine’s 140,000-plus readers.

    It begins with the story of 12-year CFS patient Laurel Wright, followed by a discussion of suspected triggers, how CFS is diagnosed, frequently associated symptoms, and “supportive treatment options” for dealing with them.

    Importantly, the article also summarizes recent research findings which “do provide evidence that Chronic Fatigue Syndrome is a biologically distinct disease,” including the recent work to identify genetic mutations unique to CFS patients, published as a suite of articles in the April 2006 issue of the journal Pharmacogenetics. (See “New Evidence That Genetics Are Responsible for Chronic Fatigue Syndrome” in the ImmuneSupport.com Library).

    The article also highlights a new trial funded by the maker of the immune-modulating drug Ampligen, “which has been under investigation for two decades.” The “as yet unpublished” results of this latest trial reportedly allowed CFS patients who received Ampligen for 40 weeks to increase their exercise tolerance by an average of 15 percent compared with another group of CFS patients who received “a fake version” of the drug (placebo).

    If the Food and Drug Administration’s follow-up research supports its approval of Ampligen for marketing as a CFS therapy, the article adds, its maker projects the cost of the drug at $15,000 to $20,000 per patient/per year, not counting fees for its administration.

    by Editor

    ****** WHAT ABOUT THAT COST!?!?!?!?!?!?!?!?!?!?!?! ******
  2. victoria

    victoria New Member

    that sure IS a lot of $$ for a 15% increase in exercise intolerance...

    and perhaps I'm misunderstanding what 'immune modulating' means, but --

    -- if it is modulating the immune system, does this mean is it stopping the immune system from being triggered by something causing inflammation, like a stealth pathogen?


    [This Message was Edited on 08/07/2006]
  3. mrdad

    mrdad New Member

    Thanks for the info.!! Ya know, 15 to 20 grand doesn't
    seem like much $$ for a whole 15% improvement!! Wonder if
    the folks with the Placebo got the other 85% that's still
    missing in the improvement of the medicated group? Let's
    see how much they want to charge us for the Placebo then.

    P.S. But thanks JlH, we aren't blaming the messenger!!
  4. victoria

    victoria New Member

    I got the following research abstract from a lyme list I'm on - talks about an otherwise 'silent' (no symptoms) variety of borrelia that seems to take up residence in the brain, waits for immunosuppression to reactivate!

    I don't know if this particular variant of the lyme spirochete (lyme) is present in N. America, but I wouldn't doubt that other varieties could be capable of this...

    and whether it is lyme or another stealth pathogen, thiswould certainly explain a lot for many people with 'autoimmune diseases' and relapsing symptoms of CF/FM, MS etc....

    (PS: words in all caps are mine, for emphasis)

    Christer Larssona, Marie Anderssona, Jenni Pelkonenb, Betty P. Guoa, Annika Nordstranda and Sven Bergströma, aDepartment of Molecular Biology, Umeå University, SE-901 87 Umeå, Sweden bDepartment of Medical Microbiology, Turku University, Turku, Finland; Received 19 January 2006; accepted 20 April 2006. Available online 30 May 2006.


    Relapsing fever, an infection caused by Borrelia spirochetes, is generally considered a transient, self-limiting disease in humans.

    The present study reveals that murine infection by Borrelia duttonii can be reactivated after an extended time as a SILENT infection in the brain, with NO BACTERIA APPEARING IN THE BLOOD and spirochete load comparable to the numbers in an infected tick.

    The host cerebral gene expression pattern is INDISTINGUISHABLE FROM THAT OF UNINFECTED ANIMALS, indicating that persistent bacteria are NOT recognized by the immune system nor cause noticeable tissue damage. SILENT INFECTION CAN BE REACTIVATED BY IMMUNOSUPPRESSION, inducing spirochetemia comparable to that of initial densities.

    B. duttonii has never been found in any host except man and the tick vector. We therefore propose the brain to be a possible natural reservoir of the spirochete. The view of relapsing fever as an acute disease should be extended to include in some cases prolonged persistence, a feature characteristic of the related spirochetal infections Lyme disease and syphilis.


    if this was a murder mystery...
    I'd say "The plot thickens..."

  5. TeaBisqit

    TeaBisqit Member

    I've always wanted to try Ampligen, but I would like to know the side effects first. I no longer trust alot of these drugs that are coming out. My mother took a few of the new arthritis drugs like Humera and got MS from them. So I'm much more cautious about drugs now.

    Fifteen percent does not really sound like alot. Would that only mean the difference of me being able to take out the garbage and maybe cook more or something? I don't know. And the question is, at what cost? Not just monetarily, but physically. There's always a trade off with drugs. They help in one way and hurt you in another. That's why I'd have to know what those side effects were before I'd dare try it.

    I am glad we're getting a bit more validation, though.
  6. Mikie

    Mikie Moderator

    Dr. Cheney has written an excellent article about the two halves of our immune systems and how they work, or in our case, don't work. PWC usually have immune systems which underreact to some threats and overreact to others. Immune modulators try to restore balance. I'll go see if I can find the article.

    Love, Mikie

    OK, here it is:

    Paul Cheney, M.D., on Balancing the Immune System in Chronic Fatigue Syndrome (and Fibromyalgia Syndrome)
    by Carol Sieverling


    By Carol Sieverling
    This article is based on CFIDS patient Carol Sieverling’s October 2000 visit with Paul Cheney, M.D. Dr. Cheney gave her permission to share this information, but has not reviewed or edited it. This article applies also to fibromyalgia patients who experience cognitive difficulties in addition to pain and fatigue, since Dr. Cheney believes they may also have CFIDS.

    Author’s Note: CFIDS patients are Th2 activated. This means they over-respond to toxins, allergens, normal bacteria and parasites, and under-respond to viruses, yeast, cancer and intracellular bacteria. Dr. Cheney suggests six products that can help rebalance the immune system.

    Dr. Cheney explained that the immune system has two different modes of attack, based on the type of invader. One is Th1 (T Helper 1). It goes after organisms that get inside our cells‚ [which are] intracellular pathogens. It is also known as cell-mediated immunity. The other is Th2 (T Helper 2). It attacks extracellular pathogens‚ organisms that are found outside the cells in blood and other body fluids. Some call this humoral or antibody-mediated immunity. A healthy immune system is dynamic, able to switch back and forth as needed, quickly eradicating one threat and then resting before responding to the next. (Dr. Cheney began this conversation by drawing a large inverted "V". At the top point he wrote "Th0", which he called "Th naught".

    The left arrow pointed down to "Th1" and the right arrow to "Th2". The arrow on the right was much darker and thicker, indicating that CFIDS patients are Th2 activated.)

    Th0 are the naive, or unformed, cells of the immune system. They are resting, just waiting for an invader. When infection occurs, they convert to either Th1 or Th2, depending on the type of threat. When the resting cell is exposed to a virus, cancer, yeast, or intracellular bacteria (like mycoplasma or chlamydia pneumonia), the Th1 response is initiated. (Dr. Cheney wrote these organisms beside the left arrow.) The weapons of the Th1 system include cytotoxic T cells and Natural Killer (NK) cells. (Cheney drew these below "Th1".)

    On the other side are normal bacteria, parasites, toxins, and allergens. (Likewise written beside the right arrow.) These trigger a predominately Th2 response. Its weapons include eosinophiles (Eos), polymononuclear cells (PMN), and antibody secreting cells (Ab). (Likewise written below "Th2".)

    How does the naive cell know which pathway to take? It depends on the cytokine information received. The presence of any organism from the left side triggers production of a cytokine called Interleukin 12 (IL-12). IL-12 causes the Th0 cell to move down the Th1 path. On the other hand, organisms on the right side trigger the production of Interleukin 10 (IL-10), which causes the Th0 cell to move down the Th2 path. (Cheney added small vertical dotted lines on each side, pointing upward to "IL-12" on the left and "IL-10" on the right. He then drew horizontal dotted arrows from "IL-12" and "IL-10", each pointing inward toward the "Th0", indicating that these cytokines determine whether it will become Th1 or Th2.)

    Cheney said this is the point where it gets very interesting. Viruses, especially herpes viruses like EBV, CMV and HHV6, make proteins that mimic IL-10. The virus deceives the immune system into thinking that the threat is coming from the opposite side! So the immune system shifts from the Th1 mode that attacks viruses to the Th2 mode that does not. The virus increases its chances of survival by diverting the immune system. It is now thought that many, if not most, pathogens have this ability. (To represent this effect, Cheney drew a horizontal arrow about half way down the inverted "V", originating from the left side and pointing toward, but not quite touching, the right side. The line was labeled "IL-10 like peptides". Below it he drew a similar arrow from the right side that almost reached the left side. It was labeled "IL-12 like peptides".)

    Researchers have demonstrated that most CFIDS patients end up stuck in Th2 mode. This has several consequences. When the Th2 system activates, it blocks the Th1 system. This suppresses the Th1 weapons, particularly NK function. Accordingly, there is also an increase in the Th2 weapons - the white cells and antibodies. Most notable is increased antibody production. Dr. Cheney said that if you measure antibodies to anything a CFIDS patient has ever been exposed to, they will very likely be elevated. (At this point he drew small arrows beside the "weapons": They pointed down on the left side to indicate suppression / lower levels; and they pointed up on the right side to indicate activation / higher levels.)

    Cheney notes that other problems ensue. Patients get into trouble on both sides: they overreact to things on the right side and under-react to those on the left. When they are Th2 activated, they no longer have the defense mechanisms to keep dormant all the things they caught in the past. They cannot suppress or control them anymore, and the EBV, Chlamydia pneumonia, CMV, etc., reactivate. Yeast also begins to appear.

    The only defense against being “eaten alive” at this point is RNase L. (For more information about RNase L, see The Three Phases of CFIDS and other articles in the Cheney section of our website http://virtualhometown.com/dfwcfids/menu.html.) RNase L cannot kill any of these things. It only stops them from reproducing. According to Cheney, "It's a line in the sand saying 'no more replication,' and it waits for Th1 to come and kill them. But Th1 never comes. RNase L sits there and grinds away, possibly going up and down as the pathogens activate and reactivate. But they never get wiped out. RNase L holds the line, waiting for the cavalry that never arrives."

    While it is valiantly trying to hold the line, it is also chewing up human messenger RNA, inhibiting all the enzymes in the body, disrupting protein synthesis, and generally making patients miserable. As RNase L grinds away, it eventually shifts into "after-burner" desperation mode - the more powerful and deadly low molecular weight form discovered in CFIDS patients by Suhadolnik.

    Cheney commented "RNase L is a very good anti-cancer defense. So as long as you're involved in this scenario, you don't get cancer. But a lack of growth hormone will wipe out RNase L, and we now know there is profound loss of growth hormone in CFIDS. Growth hormone is responsible for protein synthesis, and RNase L is a protein. So if you lose growth hormone, you lose protein synthesis, including RNase L. That may explain why, as the disease wears on and you acquire more injury, you stop seeing high levels of RNase L. You can't make it anymore."

    He believes this is a very scary situation. Patients are Th2 activated and Th1 suppressed. The things on the left come out and there is nothing to stop them. There is no Th1, and eventually no RNase L. He also believes patients need to balance the immune system - to push it a little more towards Th1. That way they will lose some of the overreaction on the right and gain some control on the left.

    Dr. Cheney recommends the following treatments* to help shift the immune system from one mode to another. They are called "right-to-left shifters." 1) Kutapressin (prescription): Kutapressin is an immune modulator and a broad spectrum antiviral. Dr. Cheney has found that it is most effective when the dose is varied or "pulsed." The dose should vary from 1 to 4 cc daily; see the section on Isoprinosine for this theory. Dr. Cheney strongly suspects Ampligen is a right-to-left shifter also. He has said in the past that Kutapressin is rather like a weak form of Ampligen.

    2) Isoprinosine: (prescription): For use in CFIDS, this antiviral enhances NK function. Dr. Cheney believes it would also be good against intracellular bacteria since it is a Th2 - Th1 shifter. It appears to raise IL-12 and lower IL-10, which turns off Th2 and turns on Th1. It is also called Imunovir. It has been approved in Europe and Canada for just about any viral infection for 18 years. It is not approved in the US [as of 2000].

    Week one, take 6 tablets a day, Monday through Friday, and none on the weekend. Week two, take 2 tablets a day, Monday through Friday, and none on the weekend. Repeat this cycle - but do not treat every month. Do two months on and then one month off of this "pulsing" dose. This medicine works best when you do not treat regularly. If you treat continuously at the same dose, it stops working. It is an immune modulator, and Dr. Cheney suspects all immuno-modulators are like this. If taken continuously they stop working. The dose must vary so the immune system never knows what to expect.

    3) Pine Cone Extract: Cheney said, "They make a tea from this in Southern Japan and they have significantly reduced cancer rates. It's thought to work at the gene level in lymphocytes, where it turns on IL-12. It also shuts down IL-10 at the gene level, and that causes a shift towards Th1. Pine Cone extract is expensive, but at just 10 drops a day (in the morning), of all the possibilities, it's probably the cheapest per day.

    4) Earth Dragon Peptides: Earth Dragon (ED) is round worm peptides. It causes a shift to the left, and is believed to be very similar to IL-12. There has been a huge surge in the use of ED peptides to treat Inflammatory Bowel Disease, and specifically Crohn's Disease. One professor at UNC treats all of his Crohn's Disease patients with Earth Dragon. It is [considered to be] non-toxic and safe. This is a good choice for those who want to balance their immune system and also have bowel problems. Earth Dragon is about $36 for 150 caps. The dose is two a day.

    5) Heparin (prescription): Heparin is a Th2 - Th1 shifter. One advantage for many patients is that it is also an anticoagulant. Dr. Cheney only recommends this if a patient has a coagulopathy. About half of his patients do, according to the ISAC test. (See http://www.hemex.com or "Blood Related Disorders in CFS/FM" in our October 2000 newsletter on the website.) 6) Transfer Factor [Formula 560 – identical to Transfer Factor System 100™]: Transfer Factor Formula 560 is an immune modulator. Dr. Cheney likes this product. It reportedly works against HHV6 and Lyme Disease, as well as other problems.

    *Note: This is not medical advice. See your healthcare provider for medical advice.

    Source: Chronic Fatigue Syndrome and Fibromyalgia Support Group of DFW: http://virtualhometown.com/dfwcfids/menu.html. (c) Carol Sieverling 2000-2003.

    [This Message was Edited on 08/08/2006]
  7. JLH

    JLH New Member

    Thanks for the interesting article!

  8. Prunella

    Prunella New Member

    We get this mag and I was thrilled to see that it was the cover story!!! Seems like CFS is getting more attention finally and a little more respect!

    BTW, I have found lots of great health related articles in Science News that have been very helpful for me. My husband subscribed to it because he likes science,but I think I enjoy it more than he does!
  9. ephemera

    ephemera New Member

    Thanks for the Cheney article.

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