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Learning CFS: the Lerner Antiviral Treatment Trial Succeeds

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, May 24, 2010.

  1. jackie

    jackie Senior Member

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    so if one has Varicella Zoster Virus with fluid-filled blisters/vesicles) and the fluid is tested (and found to be positive for vzv...and by clinical exam)...is THAT considered to be an "active" virus? (I'm assuming that this would be called active?...regardless of any other viruses that person might also have)...does this mean that the person does NOT (or can NOT) have me/cfs? (i dont think i worded my previous question correctly - as it seems to have disappeared.:eek: or maybe i'm looking in the wrong place?)

    btw shebacat...thanks for the very accurate picture you painted! (sort of mirrors my own except that my cd4 recently spiked high) I sympathise with you and how "the fight" makes you feel! (do you also have vzv? or hsv1 etc. just curious)

    Congratulations on your husbands healthy Immune System! What a relief that must be. (I'm hoping that my husband can keep his so-far adequate I.S. intact until he retires next year! He is now showing some "signs" of becoming ill like me (after 37 yrs.)...and we are counting on his being able to last until then, when his retirement nest-egg can help with the cost of caregiving for both of us - as he is the "bread-winner" for now.)

    Its pretty brutal when I crash badly at the same time HE has his version of a crash...and we're scrambling to try and take care of each other! That's when a good sense of humor comes in handy. (what a way to "retire"!)

    jackie (and thanks Lisa, for your explanation of the "placebo response".)
     
  2. slayadragon

    slayadragon Senior Member

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    Dr. Lerner Study

    I skimmed through this thread and then through the entire paper. Some of this is a repetition of Gerwyn's points, but I'll state them anyway.

    Dr. Lerner is by his own definition measuring "chronic fatigue." He's using his own "Energy Index" as the criteria of whether patients improved.

    Although fatigue is one part of Chronic Fatigue Syndrome, it's not the only part. Issues such as cognitive functioning are just as integral or even more integral to the disease.

    Part of this problem is the usual disagreement about the definition of CFS (e.g. Canadian Criteria vs. Fukuda). This confuses the issue in all studies related to CFS, unless it's stated clearly upfront how the patients are categorized.

    This particular study doesn't state whether these patients fulfill either of the definitional criteria. They're just categorized by presence or lack of energy, which isn't even enough to tell if they meet Fukuda.

    It's thus hard to know whether the results might apply to other people with CFS (according to what might be more stringent criteria).

    If I still were severely ill with CFS (Canadian Criteria), I would not know from reading this study whether it would be appropriate for me to try a trial of these antivirals. Maybe the people in the study had something milder than I did, or some other disease altogether.

    A primary point of publishing medical research is to give doctors an idea of whether treatments are appropriate for particular patients. Thus, the patient population being treated should be defined.

    If Dr. Lerner were giving an informal report on his progress in an interview with Cort, perhaps we might decide to give him the tentative benefit of the doubt that he knows a CFS patient when he sees one. But a published paper should not rely on the credibility of its authors for such distinctions. It should have objective criteria stated.

    In addition, this study looks at energy improvements only, which is fine. That's one part of CFS, and we all would like to see improvements in anything.

    But then Dr. Lerner states, "The Group A herpesvirus CFS patients (no coinfections) returned to a near-normal to normal life (P = 0.0001). Group B CFS patients (herpesvirus plus coinfections) continued to have CFS."

    This suggests that the patients in Group A did not have CFS. This is inaccurate on two counts. They did not go back to normal (increasing to only an average of 6) even on the energy index, and no other components of their illness were measured at all.

    Perhaps the most problematic part of the paper is the first sentence of the abstract: "We hypothesized that chronic fatigue syndrome may be caused by single or multiple Epstein-Barr virus (EBV), cytomegalovirus (CMV), or human herpesvirus 6 (HHV6)."

    This implies that a positive finding to the research will demonstrate that those viruses indeed are a/the cause of the disease. Just because symptoms improve as a result of treating these viruses doesn't mean that they're causal factors though. They may just be opportunistic, as is seen with infections like toxoplasmosis in AIDS.

    Both methodologically and in terms of its claims, this study is problematic.

    Unfortunately, it's hard to do good CFS research, and some clinicians who want to help their patients can go overboard in their insistence that they've found a "cause" or a "cure."

    Despite its flaws, it is still interesting and promising work. I'm glad to see it.

    Best, Lisa
     
  3. Seeker

    Seeker

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    "An even vaguely healthy immune system should be able to keep babesia under control, for instance."

    That's a confusing issue, to me; if a person has multiple (5) tick infections that have gone undx'd and untreated, then I can almost understand how EMV & CMV might reactivate - almost. But once they're detected & treated, you'd think the immune system would be considered at least somewhat healthy at that point...

    Could (one of?) the especially confouding issue here be the presence of HLA DR1? (This can prevent a person's body from mounting a sufficient immune response against borrelia, even if that's the *only* infection.)

    http://www.ncbi.nlm.nih.gov/pubmed/11532615

    It's not likely the issue for a significant # of people, tho, since I think HLA DR1 occurrence rate is fairly low.

    Also interesting that after treating everything for ~4 yrs & achieving a 4-yr remission, after relapsing I decided to try low dose naltrexone. While I was on it (16 mos), it definitely felt like the babesiosis was under control (just not the Lyme or bart).

    Presence of XMRV kind of makes the most sense to me to explain most, if not all, of the above...
     
  4. cfs since 1998

    cfs since 1998 *****

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    Again:

    I agree with you on this part:

     
  5. dean

    dean

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    I have had a vested interest in finding a treatment for this disease for over 20 years. However I am skeptical anyone's validity claims. I am pleased to see that on this site there is no one doubting the validity claims regarding the physiological basis for this disease. There is no doubt that we need much more research for ME/CFS but we must demand rigor and transparency from everyone doing this research. In my experience over these many years, there are too many "experts" touting their own results. And for discussion only, I want to point out what old professor told me years ago. "Sadly, whenever there are a hundred cures for a disease, you can be sure that none of them work very well." Not a maxim, just food for thought on the way.
     
  6. slayadragon

    slayadragon Senior Member

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    Oh, whoops. Sorry!

    Thanks, Lisa
     
  7. jeffrez

    jeffrez Senior Member

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    How does it suggest that? They met the strictest criteria in existence for CFS.

    Technically that might be true, but in practice it appears mostly to be a moot point. If the patients resumed a normal life after treatment, then the treatment addressed enough of the cause of the symptoms to be essentially a functional cure. I doubt many people who had such a benefit were upset because the "real cause" of the disease wasn't fixed. And for all anyone really knows, it was. At least in those patients who responded.
     
  8. slayadragon

    slayadragon Senior Member

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    Functional Cure vs. Actual Wellness

    They met the Fukuda criteria (which is not as strict as the Canadian Criteria). But only improvements in fatigue (rather than in the other symptoms) as a result of the drugs were measured in the study.


    Improvements in level of energy are not the same as getting back to a normal life.

    I personally got to a "10" on Dr. Lerner's Energy Index quite a long time ago. But I wouldn't have suggested to anyone that I was really well until I got the cognitive component back too.

    Dr. Lerner may consider improvements on the Energy Index to be a "normal life" even if patients still have other symptoms and if they still have substantial energy limitations.

    I think improvements are great, but they aren't the same thing as the resolution of the illness.

    Maybe I'm being too demanding, but I think the whole concept of a "functional cure" is setting our sights too low.

    If people can drag themselves to some job that's a lot less challenging in every respect than the one that they could have done before they got sick, and then spend the rest of their time recovering from working, I don't think that's any sort of "cure." That's an improvement.

    I bring this up because consistently, doctors/researchers use the concept of sometimes being able to effect a "functional cure" as a way to avoid looking at any factors other than the ones that they themselves already have deemed to be worthwhile.

    It's not just Dr. Lerner who does this. It's the other CFS doctors too.

    I'm truly happy that these doctors are finding ways to give people improvements. But until they can get people not just "Functionally Cured" but actually "Truly Well," they should keep looking for additional ways in which patients can be helped further.

    It's selling us short to do otherwise.

    Best, Lisa
     
  9. julius

    julius Watchoo lookin' at?

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    I understand what your saying to mean that we should only be doing research on the 'whole enchilada'. Given that the research dollars are extremely limited, this idea has some merit. But you do run the risk of putting your eggs all in one basket.

    It's such a complex disease, maybe it's just a bit beyond out reach at the moment to figure the whole thing out. With an all or nothing approach you could well end up with nothing.

    By having at least some research being done on the smaller questions, providing incremental relief while we wait for the big picture to unfold, we are at least getting something.
     
  10. slayadragon

    slayadragon Senior Member

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    Okay, I hate to sound like a broken record, but I'm going to say it anyway.

    I think that CFS doctors should be looking at the role of toxic mold in this illness, in addition to everything else that they're already looking at.

    It's my belief that if they focused on helping people to reduce their toxic mold exposures, the other things that they're doing would work better.

    Then maybe they'd get a higher percentage of CFSers closer to real recoveries, rather than just a few of them barely to the level of being able to stumble "back to work."

    They don't need to put all their eggs in the toxic mold basket.

    I would settle for ONE egg, from ONE researcher (other than Dr. Shoemaker), as a start.

    Best, Lisa
     
  11. julius

    julius Watchoo lookin' at?

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    That all makes sense to me.

    I was only responding to your last post that sounded like you were calling for an all-in-one-basket thing.

    Hell, let's get rid of mold altogether. I live in wet Vancouver, I can't keep a loaf of bread for more than a day.

    cheers
     
  12. jeffrez

    jeffrez Senior Member

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    So now you admit they had CFS. Okay great, as long as you see that you were in error in claiming that the participants didn't have CFS.

    As far as saying that only improvements in fatigue were measured, and not other symptoms, that simply isn't true. Did you even read the study? Lerner measured many different parameters of what many consider to be biomarkers of CFS, including cardiac structure and function, as well as other symptoms that are often a hallmark of CFS, like orthostatic hypotension and fainting, all of which markedly improved or were eliminated/normalized with the antivirals.

    I think I'll take whatever I can get and be glad for it.

    Who says they aren't?

    Regarding your subsequent post, do you honestly believe no doctors have ever looked at the possible role of mold in this disease? :lol:
     
  13. slayadragon

    slayadragon Senior Member

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    Yes, I am absolutely sure that none of the "name" CFS doctors have put any substantive effort into considering the role of toxic mold in this illness.

    The only exceptions are Judy Mikovits (as a result of discussions with Erik Johnson), Rich van Konynenberg (as a result of discussions with me), and Ritchie Shoemaker.

    I welcome evidence to the contrary.

    Best, Lisa
     
  14. jeffrez

    jeffrez Senior Member

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    I believe Nancy Klimas has also studied it, undoubtedly along with dozens of "unnamed" doctors who treat CFS patients. Mold is probably one of the first things ever considered as a cause of CFS, and generally I think it has been rejected as a primary cause.

    But now that we have established that some doctors have in fact looked or are looking at mold exposure in CFS, don't you think it's a little silly to criticize this study on the basis of the fact that it looks at viruses instead of mold? I'm sure there are hundreds of other possible factors that could contribute to or even cause CFS that this study didn't consider. Should we fault it for not including all of those, too?
     
  15. slayadragon

    slayadragon Senior Member

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    Dr. Klimas

    Thanks for bringing up Nancy Klimas. That's a very good catch.

    Here's a quote from her (January 11, 2008, ProHealth Q&A):

    Q: Any thoughts as to the role of environmental toxins like mold?

    Dr. Klimas: Anything that over-stimulates the immune system is suspect, and some molds also give off immunosuppressant factors. Another potential subgroup of CFS... I have seen sick building syndrome cases that are almost certainly working through this mechanism.


    In bringing up the "immunosuppressant factors," Dr. Klimas is actually coming closer to implicating mold as an underlying cause than I was.

    I never said the word "cause" (much less "primary cause") in this thread. I just said that researchers would do well to consider the idea that heavy mold exposures might be undoing the beneficial effects that their treatments otherwise could be having, if they want their studies to have positive outcomes.

    Since Dr. Klimas believes that one subgroup of CFS patients has symptoms that are "working through the mechanism" of Sick Building Syndrome, it makes sense that she would ask all patients to actively look into whether they have hidden toxic mold problems in their homes, and to address those problems (through remediation or moving) if they find them.

    Does anyone know if she does that?

    Thanks, Lisa
     
  16. jeffrez

    jeffrez Senior Member

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    Look - in general I don't disagree with you, and I also agree with that Klimas quote. But first, we're talking about a sub-group here, second mold doesn't appear to be causative, and third, Sick Building Syndrome is not the same thing as Chronic Fatigue Syndrome. There might be some symptom overlap, but afaik they are distinct entities.

    I don't mean this in a "thread police" way, but this is a thread on the Lerner study and the results he found with antivirals. So I don't think diverting it to a discussion of mold is really appropriate. I'm sure we all wish there were researchers looking at every possible aspect of CFS under the sun, but unfortunately that isn't happening, and that is also not the focus of this study.

    This study is also not so much a research study as it is a clinical study. That's how I view it, at least. Yes, there are some flaws in it. But I think in some respect we have to take it on its face - by which I don't mean not to criticize the methodology, etc. - but not fault it for what it's not and what it's not trying to be. I think his results are interesting, they might not represent a "cure," but only a functional improvement, or however you want to categorize it, but it's one more part of the picture that at least someone is reporting on. If XMRV pans out, who knows how something like this might dovetail with XMRV to actually provide the "cure" we all want. don't throw out the baby with the bathwater, especially just because it's not the gender baby you wanted. :p
     
  17. slayadragon

    slayadragon Senior Member

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    I'm in agreement with everything you just wrote. :)

    Best, Lisa
     
  18. anncavan

    anncavan

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    Hi @jackie,
    In my experience he treats EBV with Valtrex (4 x 1gm per day) and HHV6 and/or HCMV with Valcyte (2 x 450mg per day, and if you handle that he'll even push up to 3 x 450mg per day). 3 Valcyte per day elevated my liver enzymes so I dropped back down to 2 per day. I have EBV and HHV6 so take both Valtrex and Valcyte.

    From what I understand you stay on these doses until you reach at least an EIPS of 7, and then it's up to you and Dr. Lerner to determine if you'd like to ease off them. But NEVER go off either cold turkey. It throws your immune system into panic causing anything from sinusitis, bronchitis, swollen glands, thyroiditis...
     
  19. anncavan

    anncavan

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    Hi @oipemowell,
    I'm a patient of Dr. Lerner's. Standard protocol is Valtrex to treat EBV and Valcyte to treat HHV6 and/or HCMV.
     
  20. anncavan

    anncavan

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    Hi @SarahLaBelle,
    Just wanted to pipe in here as a patient of Dr. Lerner's... I'm not sure where the $1,000 came from. A visit to see him is a standard physician cost. With my insurance I pay $30 copay, and then the small % I pay for blood work, but that's it. His office is UNBELIEVALBE at providing all the backup and paperwork necessary to "fight" insurance and disability insurance. I've been able to have all my meds covered so I'm only paying co-pays ranging $5-$50 per month depending on the drug.
     

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