The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
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Drs. Shoemaker and Nathan to speak on biotoxin illnesses--Santa Rosa, CA, Oct. 22-23

Discussion in 'General ME/CFS News' started by richvank, Sep 1, 2011.

  1. richvank

    richvank Senior Member

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  2. eric_s

    eric_s Senior Member

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    Thanks, Rich. I just wonder what percentage of ME/CFS cases he can actually treat successfully with his protocol. And is ME/CFS really a biotoxin illness? I don't mean to be negative, but i really wish we would finally get some real understanding what ME/CFS is and solid data, not just stories of improved patients. If we don't know how many have improved and to what degree how should we know what to make of it?
     
  3. richvank

    richvank Senior Member

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    Hi, Eric.

    My own view is that biotoxin illnesses are an important factor in some ME/CFS cases, but not all, and this view is based on lab testing. Because Dr. Shoemaker is recognized as a specialist in biotoxin illnesses, I think that patients who have these disorders self-select in choosing to see him, and the result is that most of the ME/CFS cases he sees do involve biotoxin illnesses, including mold illness. I think this has shaped his view of the prevalence of biotoxin illnesses in ME/CFS. But he does have a series of lab tests, and I think they can distinguish those who have biotoxin illnesses from those who don't.

    I think there is a somewhat similar situation with Lyme disease. It seems to be present in some but not all cases of ME/CFS. Unfortunately the testing for it is more difficult and not as reliable.

    As far as methylation treatment is concerned, we do have some numbers from a small clinical study, but we really need larger studies to get better data. Our clinical study is described here:

    http://www.mecfs-vic.org.au/sites/w...Article-2009VanKonynenburg-TrtMethylStudy.pdf

    Best regards,

    Rich
     
  4. eric_s

    eric_s Senior Member

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    Hi Rich

    Thanks, i've never seen this study before. I hope you will be able to perform a larger study, as you wrote in the paper.
     
  5. floydguy

    floydguy Senior Member

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    Rich - Have you seen data that shows people can have ME without testing positive for Shoemaker's labs, ie TGFBeta1, C4a, VIP, MSH, etc.? I've generally been under the impression that many people in the lyme, biotoxin, ME world all test positive for these labs.
     
  6. richvank

    richvank Senior Member

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    Hi, Floydguy.

    Here is a quotation from the results section of the poster paper I cited, describing the clinical study that Dr. Nathan and I ran. As you can see, most did test positive on Dr. Shoemaker's tests, but there were some who did not. Of course, this was a pretty small group of patients, due to funding limitations.
    This was a group of women who came to Dr. Nathan's practice, which was in Springfield, MO, at that time. He has since moved his practice to California. It's not possible to say whether this particular group would be representative of the ME/CFS population as a whole.

    In the diagnostic criteria Dr. Shoemaker has proposed, he generally requires that a certain number of the tests he runs be positive in a given patient. I don't have the data in front of me right now to say how many had all three of the Shoemaker tests positive. We didn't measure the other parameters he uses, again because of funding limitations.

    "The results of the Functional Acuity Contrast Testing (FACT) of 21 patients were as follows: clearly negative on all three tests (performed at 0, 3 and 6 months)3; clearly positive on all three tests8; positive or borderline on one or more of the three tests10.

    "The results of the C4a measurements were that 15 of 21 patients had values in excess of the laboratory reference range. The mean and standard deviation of the laboratory reference values were 1120 (381). The mean and standard deviation of the distribution of C4a values of the 21 patients were 6086 (7767). The patient values were significantly higher than the reference values, with p < 0.005.

    "The results of the TGF beta-1 measurements were that 20 of 21 patients had values above the laboratory reference range. The mean and standard deviation of the laboratory reference range values were 1,363 (510). The mean and standard deviation of the distribution of TGF beta-1 values of the 21 patients was 6,935 (4,274). The patient values were significantly higher than the reference values, with p < 0.0005."

    Best regards,

    Rich
     
  7. eric_s

    eric_s Senior Member

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    Hi Rich

    For curiosity, what were the costs for the study you posted and what would the costs be for a randomized, double-blind, placebo controlled study of an appropriate size (roughly)?

    I don't have the money, but i'm interested in these things. Feel free to reply by pm, if you prefer.

    Thanks
     
  8. slayadragon

    slayadragon Senior Member

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    Hi Rich,

    Much of my experience is looking at people who know they are mold responders, but who (through avoidance) reduce their symptoms substantially.

    Unfortunately, as you know, this does not make their CFS go away entirely.

    Most of these manage to be able to get a normal VCS test. Many of them get a normal C4a, at least some of the time. TGF-beta usually remains a problem, as do things such as low NKC activity.

    This would be consistent with what you're describing. Perhaps some of the people in your study were biotoxin responders, and were made sick by biotoxins, but have managed (even by chance) to get to a good location.

    Based on my visit there, Springfield, MO, is not a place with terrible outdoor air for ME/CFS patients, so that would not keep them sick enough to be highly positive on those tests all by itself. I do not doubt that some people there might have, by chance, moved from a really bad building to a pretty good one. If that's the case, those folks eventually will have their contaminated belongings die down and start to make improvements.

    This does not mean that they are well. Insofar as they have a hard time detoxing biotoxins, the ones they stored up from before will continue to have an effect on them. In addition, it could be that the inflamed toxic "terrain" of their bodies caused XMRV or some other pathogen to go active, and that this pathogen is very hard to get under control once it goes wild.

    If that's the case, the previous mold exposure would still be a cause of the illness, by creating the circumstances that allowed the pathogen to get a foothold, even if the toxin was no longer an issue.

    I don't know if everybody with CFS is a biotoxin responder, has a history of particular biotoxin exposure, or is unable to effectively detox biotoxins. But I don't think that from the results you cite, we can say that they are not.

    Did you happen to do HLA DR tests for the people in your study?

    Thanks much for your help.

    Best, Lisa
     
  9. richvank

    richvank Senior Member

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    Hi, eric.

    The lab testing cost was $40,000, which we received from a donor who wishes to remain anonymous. The patients were sold their supplements at cost. The patients or their insurance paid for their office visits. Administration was taken care of by Dr. Nathan's office staff. I analyzed the data and did the statistics, and I donated my time.

    I can't give you a good estimate for the scale and quality of the study you asked about. They are usually done in a university or medical school, so there is a significant overhead charge by the institution. There is a cost for an institutional review group study of the proposal. Everyone involved has to be paid, including the medical doctor, medical staff, data analyst, statistician, and administrator. The lab testing cost scales with the number of patients, the parameters measured, and the number of times they are measured. The placebo group doubles the number of patients. The treatments must be funded. There may be a cost for graphics and report preparation. The costs add up. I haven't done this kind of study, so don't have experience with it. When I was doing funded research, it was in engineering and the physical sciences, and I think the costs are higher there, because of the expensive facilities we used (accelerators, reactors, large computers, etc.).

    Best regards,

    Rich
     
  10. slayadragon

    slayadragon Senior Member

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    I've yet to hear of anyone with moderate to severe ME who has benefited much from Shoemaker's protocol. That doesn't mean that mold is not a factor for folks though -- just that his protocol isn't very effective for them. None of the other doctors trying to treat CFS help patients much either. We're a tough crowd.

    It still would be interesting for people to see Shoemaker speak anyway. He's one of the few honest-to-goodness geniuses I've interacted with personally, I believe.

    Best, Lisa
     

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