Update fr RichVanK re: Methylation Cycle Block Protocol

Discussion in 'Fibromyalgia Main Forum' started by Rrrr, Aug 26, 2008.

  1. Rrrr

    Rrrr Member

    I see my doc next week and asked Rich Van K to give us both (me and my doc) an update on his Methylation Cycle Block protocol from doctors who are using it. Here is what he wrote to my doc (I have Rich's permission to re-post here). -- Rivka

    I polled the doctors prior to giving a talk last February, and this was the response from six of them then:

    David Bell, M.D. (Lyndonvilee, NY): "I have a good treatment response in roughly 50% of my long-term patients who have not responded particularly well to standard symptom-based therapies. I am very encouraged..." [When I re-polled him in May, 2008, he reiterated this.]

    Karen Vrchota, M.D. (Winona, MN): "78 out of 109 patients [72%] have marked improvement." Patients are slowly improving week to week and month to month. Those started in July 2007 have not peaked yet; that is, they are still improving." [When I re-polled Dr. Vrchota in May, 2008, she revised her statement to say that about 70% of her patients were showing improvement when the methylation block treatment was combined with other treatments (I think she meant the other aspects of the Teitelbaum-type protocol)].

    Neil Nathan, M.D. (Springfield, MO): "I've got about 75 patients on the protocol now, and have results from about 60. Roughly 70% report noticeable improvement, and 15 to 20% (of the total) report marked improvement. 30 to 40% report reactions in one form or another. Most of these are very mild. It's clear that it does work. We now have to define how to use it optimally." [Since then, Dr. Nathan has gotten more data from his regular clinical patients, as well as entering upon a research study with 30 other women diagnosed with both CFS and FM who received initial SNP testing, and are receiving periodic repeated testing using the methylation panel, the visual contrast sensitivity test, a thyroid panel, and self-evaluation of symptoms. He is now reporting that 75% of his regular clinical patients showed improvement after treatment for 2 to 3 months. The 30 women in the research study are all now at least three months into the study. We are in the process of analyzing the 3-month data, and I can't give details yet, but I will just say that the results look very good. I expect that when the results of this research study come out, we will be able to interest more doctors (at least complementary and alternative doctors) in this treatment approach. It is not a randomized, blinded, placebo-controlled study, but it has been very well conducted and documented, and there have been no dropouts so far. Some time next month I hope to be able to share the results of this research study. It probably won't be published in a peer-reviewed journal, because there was no intitutional review committee review prior to the study, though there was informed consent. It's really meant as a preliminary study to see what would be important to do for a more controlled study.

    Derek Enlander, M.D. (NYC): Using his own protocol, which includes methylation cycle treatment (but does not include 5-methyl THF), Dr. E. reports that he has 112 patients under treatment, and that 65 to 70% of them show improvement. [Dr. Enlander spoke at a conference in the UK in May, 2008, and reported similar results there.]

    Sarah Myhill, MB BS (Wales): Dr. M. has 10-12 CFS patients on her methylation supplement package, but does not yet have feedback from all of them. However, she reports that "There is no doubt that for some this is a very worthwhile intervention." [Since then, I have been hearing by email from some of Dr. Myhill's patients, and I think quite a few more are on the treatment now.]

    Jacob Teitelbaum, M.D. (Hawaii): Some doctors in the Fibromyalgia and Fatigue Centers of America have started using the protocol. I am excited about its potential and am awaiting feedback." [Since then, I have heard from one patient of the Atlanta FFC who has been started on the protocol. I also have heard from one who sees a doctor in the Holtorf Clinic in southern California, which is loosely affiliated with the FFCs. I don't know to what degree the FFC doctors in general are using this treatment.

    There are a few other doctors who are using the methylation block treatment at least to some degree. One is Michael Powell in Sacramento, CA. I've heard from a doctor in Norway who is using it. Wayne Anderson in Santa Rosa, CA, is running the Vitamin Diagnostics methylation panel on all his patients now.

    Among the patients in the CFS internet groups, I would say that generally the response has been good to this treatment. Some people have dropped it, for various reasons, but those who have been able to stay with it for several months are still reporting continuing improvement, for the most part. A small number are reporting that they have been able to go back to work, or that they would be able to work if they wanted to.

    I hope this is helpful. We should have more to say soon.

    Best regards,


  2. Forebearance

    Forebearance Member

    Thanks for sharing that, Rivka! It's great to hear what the latest is from Rich.

  3. redhummingbird

    redhummingbird New Member

    Thanks for posting this Rivka.

    It's very encouraging to read about all the progress!
  4. Diva55

    Diva55 New Member

    Hi Rivka
    Thanks for sharing that.
    What great news & once again re-inforces what wonderful work Rich is doing for us!

    So pleased it's helping such a lot of people.

    Thank you once again to the wonderful Rich!

    Best wishes
  5. mbofov

    mbofov Active Member

    Rivka, thanks to you for posting, and Rich, thanks so much for everything - this is very encouraging!

  6. richvank

    richvank New Member

    Hi, nofool.

    As usual, you asked some very penetrating questions!

    Yes, this is a quotation from Dr. David Bell.

    His full statement was, "Therefore I am very encouraged and plan to continue exploring your protocol." I chopped it because I was trying to shorten the quotations so as to fit more onto the slides. Also, I prefer not to refer to the simplified treatment approach as "my protocol," because it was extracted from the full Yasko treatment program, and I received help from a woman on that program in extracting it.

    With regard to negative responses, as you can see, the doctors did not report 100% positive results with this approach. It seems to be running between about 65 and 70% in untested patients. So you could consider the rest to be negative if you like, though it's hard to know whether some more would be positive if they had proceeded more slowly or had received testing to see how the lab results were running. These are just raw data from physician reports, not clinical trials. We have a research study in progress now with detailed and repeated testing, and I'm hopeful that it will produce more precise numbers.

    Thanks for your interest and your usual skepticism!

    Best regards,

    [This Message was Edited on 08/27/2008]
  7. Lichu3

    Lichu3 New Member

    I know people involved in the writing and publishing of scientific journals.

    I would encourage Rich and others to try to publish what they can in a peer-reviewed journal.

    If the study is well-put together, it does not need to be a randomized double-blind placebo-controlled study to be published. Observational reports (not formal studies but researchers/ doctors reporting interesting things they see)are published in peer-reviewed journals regularly. There are hundreds of peer-reviewed journals out there.

    A lower level of consent is needed from the subjects....i.e. that the subjects know their data will be included in a published article. But otherwise no institutional review committee is needed.

    An example is the first Montoya article -- no institutional review committee (IRC) was needed as the subjects were not involved in a formal study, just trying out an antiviral that their doctor thought might help them. (This is from the original article's Methods section.)

    If CFS is to be recognized as a legitimate, biologically-based illness by mainstream medicine and get the research funds it deserves, research about it NEEDS to be published in peer-reviewed journals. Yes, you're going to get positive and negative feedback but that is the process all researchers undergo.

    My concern has been that various groups have used the argument that mainstream medicine is against them as an excuse for not publishing in a peer-reviewed source when perhaps they don't have any data to uphold their claims or they're already making enough money (independent of whether something actually works) so they don't feel the need to publish.
    [This Message was Edited on 08/27/2008]
  8. Lichu3

    Lichu3 New Member

    two physicians. This is a peer-reviewed journal. The article is NOT about CFS but some less-recognized side effects of interfereon in the treatment of Hepatitis C.

    Similar reports about individual patients with CFS undergoing various treatments could be written.

  9. tansy

    tansy New Member

    The figures reflect the feedback I've had from others in the UK using supps to support methylation.

    I find it interesting that Dr Bell has found 50% of his long term patients, who do not respond to other symptom based Tx, are experiencing a good response to methylation supps.

    tc, Tansy

    [This Message was Edited on 08/27/2008]
  10. richvank

    richvank New Member

    Hi, lichu3.

    Thank you for your advice and comments. They are well-taken. We will certainly try to get the information out in the best way we can, and I agree that this is important if we are going to move things forward in CFS.

    It's true that medical journals will print interesting individual unplanned observations by physicians, even on only one patient. As a paper begins to look more and more like a report on a planned clinical trial, though, I think the requirements go up. Also, I think the bar is a little higher for CFS than for more recognized conditions. Some of the editors and reviewers don't believe CFS is real, and that comes across in their comments on manuscripts and rejection of them. Perhaps some of them may be afraid of ridicule by their peers if they publish papers on CFS. I have some personal experience with reviewers who are skeptical of CFS, and I know of others who do, too. There are some well-regarded medical journals that never publish anything on CFS. I know of studies by individual physicians in CFS that produced very interesting results but were rejected by editors because there was no prior institutional committee review. In one case, the editor suggested that the author may already have broken the law by doing the study without a prior committee review!

    So this isn't always an easy thing, in my experience, and one can pour a lot of hours into rewriting manuscripts that never see the light of day. But I do agree that it is important to get the results out there, and we are planning to do that as well as we can.

    Thanks for your interest.

  11. tansy

    tansy New Member

    In the UK ME/CFS researchers have difficulty getting their articles and papers accepted for publication in the medical press. Psychiatrists, who specialise in somatatising disorders, have few difficulties even when their figures do not add up.

    It's a shame the psychologising of ME, CFS, and FM has led to so many good articles being turned down.

    tc, Tansy
  12. Lichu3

    Lichu3 New Member

    that is how things are started sometimes.

    One possibility to consider is Public Libary of Science. This is a new on-line set of peer-reviewed journals (including medicine/ biology) with backing by well-known scientists. Sometimes, a newer journal might be willing to take more chances.


    I believe PLoS will become more important as on-line publishing is faster and means greater access. A physicist friend tells me that the many physicists now publish on-line on a specific website (forget the name) before the paper copy comes out.

    Also some journals that have accepted CFS research recently may be more open if the work fits: Journal of Clinical Virology, Journal of Clinical Pathology, Clinical Infectious Disease.
  13. cct

    cct Member


    Thanks for sharing this information with us.

    I am going to print it out and add it to my gigantic RichVanK file!

  14. providerwatcher

    providerwatcher New Member

    Thank you VERY much. This sounds very promising!
  15. findmind

    findmind New Member

    Wouldn't the Journal of Chronic Fatigue Syndrome (published by Haworth Press) be a good place to publish?

    I've seen articles that are not scientifically peer-reviewed in there.

  16. marti_zavala

    marti_zavala Member

    thanks rivka.

    I also appreciate that you or Rich added the locations of these docs.

    thanks rich.

  17. waltz

    waltz New Member

    I like the PLoS Journals too and I think they are gaining clout. It is changing the landscape because it's adding a more open and interactive environment where I think it would be harder to get away with the "disbelief" opinion which I think can survive when it's possible to avoid exchanging information and hearing from others.
  18. Mikie

    Mikie Moderator

    I have only now returned to my cable connection and am back online again. It's good to be here as I've missed y'all. I was working out of the library, using their wi-fi but yesterday, I lost two responses as they were working on their system. That was the straw which broke the camel's back. At least, Comcast is giving me six months of service for only $19.99. But, I digress...

    I've been off the protocol for a bit when I had to take a detour due to food poisoning. It has taken about a month and my stomach isn't the same. The doc thinks it could have been diverticulitis or colitis but I don't think so. It came on right after eating a frozen hamburger patty. I cooked it well but somehow, it must have gotten contaminated from something I used when it was raw. I am still having some pain and bloating in my midriff and may have to return to the doc for further testing. It could be something in my liver or pancrease. If it was e-Coli, it could have damaged my organs. Oy!

    Soooooo, the protocol has gone on the shelf until I get this under control. The protocol causes me a lot of detox and pruging and right now, I don't need that :) I do look forward to returning to it as I believe it may well be the last step in my regimen to regain my health. Despite this latest episode, I am still working part time. I just use my off days to rest up. In the past, something like this would have put me in bed for weeks, if not months.

    Thanks again. Annecdotal response seems to be overall positive for the protocol and I'm glad it appears to be helping others. I believe it is helping me but right now, I'm sidelined for a bit.

    Love, Mikie
  19. aftermath

    aftermath New Member

    <blockquote>Some doctors in the Fibromyalgia and Fatigue Centers of America have started using the protocol. I am excited about its potential and am awaiting feedback." [Since then, I have heard from one patient of the Atlanta FFC who has been started on the protocol. I also have heard from one who sees a doctor in the Holtorf Clinic in southern California, which is loosely affiliated with the FFCs.</blockquote>

    If the long-term results are encouraging, looks like they are going to have to re-brand the supplements and put an 800% markup on them :)
    [This Message was Edited on 09/03/2008]
  20. richvank

    richvank New Member

    Hi, findmind.

    Dr. de Meirleir (one of the editors) says that the Journal of CFS is going out of print.

    It always had a problem in that it was not approved for listing in PubMed. As a result, the papers were not very accessible to researchers doing literature searches. In response, researchers tended to send their better papers to journals that were listed in PubMed, and the JCFS tended to get the ones that other journals would not publish. I've been a subscriber to it for several years, nevertheless. Probably the best thing they published was the Canadian criteria for CFS. That was a very important paper.

    I don't know how it is decided whether a journal will be listed on PubMed, but I think it can be a difficult thing. I think there have to be high quality papers in the journal to get accepted, but authors don't want to sacrifice their good papers to a journal that isn't listed. So it's a problem.

    Best regards,