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A Little Poisoning Along the Road to ME/CFS
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Article: The Stanford Initiative For Chronic Infectious Diseases (including ME/CFS)

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Dec 22, 2010.

  1. oceanblue

    oceanblue Senior Member

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    Dubbo strikes me as a chest of gold lying at the feet of researchers that they bizarrely ignore while looking into the distance to find CFS treasure....

    Basically the Dubbo studies showed that what predicted whether or not a patient would go on to develop CFS was the severity of their inital acute infection. And the figures are truly extraordinary: patients with an initial acute infection that was severe had an Odds Ratio of over 200 of going on to develop CFS (this figure comes from a later related paper about Hypervigilance).

    To put that into persepctive, a recent paper by psychologist Rona Moss-Morris got very excited about an Odds Ratio of just 1.9 for a link between an All Or Nothing (boom and bust) behaviour by patients and going on to develop CFS after developing Infectious Mononucleosis (one of the same infections studied in the Dubbo trial).

    So, when it comes to predicting the risk of getting CFS after certain infections such as Infection Mononucleosis (usually caused by EBV) the Odds Ratios are:
    Severity of Initial infection = over 200
    All or Nothing/Boom &Bust patient behaviour = 1.9

    You decide who is on to something impportant.

    OK, that's it from me: Happy Christmas one and all
     
  2. richvank

    richvank Senior Member

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    Hi, Cort.

    Thank you for pointing this out, and thank you again for being willing to post my papers on your site.

    Yesterday I received word from Nico Vanden Eynde that he is again going to shut down his site, cfsresearch.org, this time for good, in February 2011. He has decided that he himself has a disorder other than CFS, and he can no longer justify the cost of maintaining his site.

    As a result, your site will again be the only location on the internet on which my papers will be posted in an organized fashion, assuming you are willing to continue with them, which I sincerely hope you will! If you are willing, I will send you a copy of the slides from the talk I gave last July at the Yasko Protocol Conference in Boston, to add to the others on your site. Let me know to what email address I should send it, if you are willing.

    Thanks.

    Best regards,

    Rich
     
  3. richvank

    richvank Senior Member

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    Hi, oceanblue.

    Thanks for posting these perceptive comments. For what it's worth, I suspect that in the cases of severe acute illness from these infections, the glutathione depletion has become more severe. Glutathione is needed by the immune system to fight pathogens. When it becomes depleted, the immune system, especially the cell-mediated immune response, becomes dysfunctional. I think that this is what allows the acute illness to become severe in these cases. And glutathione depletion is what leads into the partial methylation cycle block, which the GD-MCB hypothesis regards as the hallmark of the pathogenesis of CFS.

    Best regards and Merry Christmas!

    Rich
     
  4. Hip

    Hip Senior Member

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    Wow, there is a whole wealth of fascinating info in your Dubbo and Methylation Cycle articles. Thanks Cort.
     
  5. determined

    determined Senior Member

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    I would be pleased to see the methylation cycle papers continue on this site as well, please!
     
  6. eric_s

    eric_s Senior Member

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    I believe that you need XMRV in order to develop ME/CFS. But it might then be another infection like EBV that will be the trigger.

    Would that also more or less add up with the numbers of the Dubbo studies or other similar studies? If i don't make some sort of mistake, then the percentage of people who get EBV or other similar infections and then develop ME/CFS should be somewhere below the prevalence of XMRV in the population (which is probably around 7%), if you assume that people are not much more or less likely to get one of those infections depending on their XMRV status.

    Has this been discussed here before?
     
  7. alex3619

    alex3619 Senior Member

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    Hi eric_s, I have been presuming since last year that the prevalence of XMRV will be a little over 10% in the final analysis. This is because, if I recall correctly (I haven't read them recently) the Dubbo studies were at something like 10% and 12%. We also had the German immune compromised patients at around 10%. Does anyone know the percentage of Lyme patients who never recover? That would be indicative.

    This was discussed on a thread some months back.

    As I pointed out at the time, 5-7% is the prevalence for healthy people. If a range of diseases and disorders goes with XMRV, then you can add several percent more, particularly since tests still have lots of false negatives. So I predict that it will go over 10%, which means something like three quarters of a billion world-wide, 30 million US citizens, and 2 million Australians (rough estimates, no point in doing more since we know so little).

    bye
    Alex
     
  8. eric_s

    eric_s Senior Member

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    Yes, ok, thanks Alex.
     
  9. Timaca

    Timaca Senior Member

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    Cort graciously posted the donation information for Dr. Montoya in his introductory comments. Cort has also worked hard getting this CFS patient forum a great place to share info. Phoenix Rising is now an officially designated 501 3C non-profit which means that donations are tax deductible.

    Show your appreciation to Cort and what he has done by donating to Phoenix Rising: http://forums.aboutmecfs.org/content.php?167 (I just did :D)

    Show your appreciation to Dr. Montoya by dropping him a note of thanks. If you have a $10.00 bill to add to the envelope, all the better.

    Division of Infectious Diseases
    Office of Medical Development
    2700 Sand Hill Road
    Menlo Park, CA 94025 notation on check: Jose Montoya MD, CFS

    or donate online: givingtostanford.stanford.edu (Jose Montoya MD, CFS)

    The work that Cort does and Dr. Montoya does is supported by private donations. Nothing happens without people like you and me giving. So, make their day. Drop them a thank you note and a donation.

    And a Happy and Healthier New Year to all!

    Best, Timaca
     
  10. oceanblue

    oceanblue Senior Member

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    I think this is possibly the best bit of research news we've had all year. With Elizabeth Unger confirmed as the new CDC head there will be no help coming from that direction but here we have one of the top universities in the world establishing a significant biomedical CFS programme. Woo hoo!

    I particularly like the way Montoya is drawing on existing Stanford expertise as well as collaborating with people such as Ian Lipkin at Columbia. I'm always wary of attempts to establish profiles for immune response/immune dysfunction because they are so hard to pin down but if you're drawing on this sort of expertise there's a much better chance of success:
    What got me most excited was their project to quantify the physical and cognitive impairments of CFS with validated tests. In the short term this seems more attainable than identifying biomarkers and could be an essential component of developing a case definition that will be demonstrably better than the ones we currently have:
    Here's to 2011
     
    NK17 likes this.
  11. Timaca

    Timaca Senior Member

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    I've met Dr. Zinn. She is wonderful.
     
  12. Julia Rachel

    Julia Rachel

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    Hi Cort:
    I would like to know how you came about this letter that you published from Stanford on Dr. Montoya's work in progress. Patients were mailed this letter, however it arrived days after your posting of this article on your website. Did you receive this information via a press release from Stanford? Was it listed on a Stanford website? or was the information provided to you by other means? The age of technology is such that information gets published so quickly that those patients receiving this information via letters which are not received yet, are left feeling out in the dark by reading information addressed specifically to them as patients and have to read this information on a website. Imagine learning your son is KIA on TV prior to the two unfrormed men knocking at your door to notiify the family of the death. There is an ethical dilemma that I believe needs to be adhered to in all forms of journalism out of respect for patients and their families. This is not about who gets the story first. This is about patient's rights and their care and moral responsibility of journalism. If this information was presented via a Stanfodr website, I would like to know the name and date that the website released this information to the public, If it was not released publically, I would ask that the patients to whom the letters were addresed are given enough time to read their private mail before stories such as these are published.
     
  13. floydguy

    floydguy Senior Member

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    Perhaps I don't understand this situation but in general I believe that if people sign up to be part of a research project there is a different standard of disclosure than a doctor/patient relationship. If privacy is that important to someone than I would suggest not participating in research initiatives. The information revealed is pretty general and doesn't reflect individual patients. What Dr. Montoya is doing goes well beyond the people participating.
     
  14. Timaca

    Timaca Senior Member

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    Julia~ I am not Cort, but I will put in my 2 cents, as I had a role in both the drafting of the newsletter and it being put up on this website.

    There was a thread here that talked some about Dr. Montoya. At that point in time I had received my newsletter in the mail. I had the idea to post the newsletter here, so others could hear of the good work that Dr. Montoya was doing. I think Cort also had that idea for he had heard of the newsletter from other sources (Cort can give his 2 cents too).

    I contacted June Lang and Dr. Montoya. Both gave their permission for the newsletter to be put up on this patient forum. At this point in time several days had passed since I had gotten my newsletter.

    Cort did an excellent job of presenting the information in the newsletter. Many people have read his posting, which can only help Dr. Montoya's cause....and hopefully also lead to increased donations so he can continue what he is doing.

    Since I do not live in CA, I assumed that since I got my newsletter, that everyone should have received theirs as well. Your point is well taken, in that should another newsletter go out, perhaps a week or 10 days should pass before it gets posted on a patient forum. Thank you for making that point, and my apologies for any hurt feelings you have felt from this incident.

    Best, Timaca
     
  15. CBS

    CBS Senior Member

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    Hi Julia,

    As a patient, I received my copy of the letter and felt that it provided information that could give hope to patients beyond those fortunate enough to be seeing specialists such as Dr. Montoya. I also felt that it was important to get the word out that Stanford's Infectious Disease Department was making progress on their efforts to further understand and treat CFS and that they were seeking financial support. It was in this spirit that I shared a copy of the newsletter with Cort but at the same time, I asked that he not publish information from the letter until we received permission to do so from Dr. Montoya. Cort honored my wishes as Timica's response details.

    I received my copy of the letter roughly 4-5 days prior to it being published on Phoenix Rising. As a former student and staff at Stanford, I can say that at least when I was there, the campus mail system leaves something to be desired. My letter was dated 12/13 and Cort's article was first published on 12/22. I can appreciate that seeing the this information on a public forum prior to getting the letter yourself was not fun.

    I agree with Timica, in the future we need to factor in additional time for the Staford mail system (I'm serious - a minimum of 10 days ought to do it).

    Floydguy, This letter was not simply sent to people that were "research participants." I received my copy of this letter with a cover letter that was address to me as a patient. I can very much appreciate Julia's reaction.
     
    NK17 likes this.
  16. Julia Rachel

    Julia Rachel

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    You are not understanding the situation. This is NOT a trial study. These are long term patients of Dr. Montoya who deserve the respect of receiving this news first hand from their trusted Physician.
     
  17. Julia Rachel

    Julia Rachel

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    Hi Timaca! Great job with checking with June and Montoya's staff. Kudos to you for proper journalism. I am pleased protocol was followed and maybe a 10 day waiting period in the future may be warranted. So many of Montoya's patients admire and look forward to all of his correspondence. Once again...GREAT REPORTING! JUlia......
     
  18. floydguy

    floydguy Senior Member

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    Sorry I disagree with being upset. I am a long time patient of a well known CFS MD/Researcher and have no expectation that he put everything by me first.
     
  19. Hope123

    Hope123 Senior Member

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    I can understand your frustration at seeing this first on the forum but I am a long-term Montoya patient -- practically from when he started doing ME/CFS research -- and I too got the letter several days before Cort posted and Cort and I, similar to CBS and Timaca's reports, e-mailed each other briefly about public disclosure.

    They did mail this out in December when mail volume is at its highest (a relative works in the Post Office) so letters might not have gotten out at the same time to everyone, aside from just where you live. In fact, one of my gift shipments (mailed 10 days prior to X-mas) and supposedly "guaranteed" to be on time (2-3 day service) arrived late -- several days after Christmas. I just chalked it up to volume issues and also bad weather around the time.
     
  20. urbantravels

    urbantravels disjecta membra

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    I'm always happy to get any information as soon as I can, wherever I get it. That's why I'm a junkie for multiple information sources that are on 24/7!

    And Hope123 makes a very salient points about holiday mail delivery - bad weather exacerbated this this year (yes, even in sunny California! We had a stormy December.) (Bulk mail fares even worse, if this happened to be sent at presort rates rather than First Class.) The newsletter in question doesn't sound like privileged information at all, containing no data about individual patients. As a newsletter/fundraising appeal, the senders would naturally want it to get out as quickly and as widely as possible.
     

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