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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Very interesting lecture by Dr Montoya (20-Feb-2018)

Discussion in 'Latest ME/CFS Research' started by Wonkmonk, Mar 4, 2018.

  1. Wonkmonk

    Wonkmonk Senior Member

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    Very interesting recent lecture on CFS etiology (cytokines etc.) and treatment options (antivirals and antiinflammatory drugs) by Dr Montoya.

    He also gives an explanation why Rituximab seems to only work in few patients (if any): It targets a too narrow part of the immune system whereas immune system abnormalities are very broad and wideranging in CFS. (see after 39:00)

     
  2. starlily88

    starlily88 Senior Member

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    To Monk - thank you so much for this excellent lecture!! I live in the states east coast. I am pretty tired so I skipped bits - but he ran this double blind study for five years - so I have all the markers he wants - or that he uses in his study. I did take Acyclovir for awhile - in the beginning.
    So if I took Acyclovir for 5 years - I would get better?
    I don't understand why his double blind study at Stanford - isn't the most popular thing on here------ I sort of gave up any way that I would get better in my life
    Tell me what you think of what seems very exciting to me - I just don't know what dose he gave patients every day.
    Thanks starlily
     
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  3. Wonkmonk

    Wonkmonk Senior Member

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    Acyclovir is probably the wrong drug, because its bioavailability is way too low, so it is not surprising you didn't get better.

    Depending on the virus you have, the drug recommended by Dr Lerner (who pioneered the treatment) and Dr Montoya would be either Valacyclovir or Valgancyclovir.


    Did you see Hip's roadmap?

    forums.phoenixrising.me/index.php?threads/beginners-guide-a-roadmap-for-me-cfs-testing-and-treatment.31641/

    It's the most comprehensive compendium of treatment options I know.

    Dr Lerner's guide is also very good and it's focused on herpesvirus.

    http://www.treatmentcenterforcfs.com/documents/mecfstreatmentresourceguideforpractitioners.pdf
     
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  4. JES

    JES Senior Member

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    You don't need to be on it for five years to get better, for some reason everyone here seems to misinterpret what he said. The five years mark was for NK cells to fully normalize. In the presentation at 47 minutes, you can see in the charts a significant improvement between the drug and placebo group already after around three months. This was for valganciclovir, which is a different drug from valacyclovir/acyclovir.

    Acyclovir is approximately 3-5 times less bioavailable than valacyclovir, so you would need 3-5X the dosage of valacyclovir. Considering that these antivirals are typically administered at high dosage in CFS/ME protcol (Lerner et al. used 3-4 grams of valacyclovir), it would be unpractical to use acyclovir as it would need a dosage of 10-20 grams and I doubt anyone can even manage to get prescribed that much.
     
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  5. starlily88

    starlily88 Senior Member

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  6. starlily88

    starlily88 Senior Member

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    Monk thanks so much for your reply. Is it possible for you to put Hip's Roadmap in a URL?
    If not, I will copy it on piece of paper, then key it in -= I don't exactly know how to get to it otherwise.

    So did you try taking Valtrex? Did anything work for you at all?
    I guess having CFS/ME for over 20 years - and it just getting worse.
    I enjoyed the lecture you posted - he is so very enthusiastic - back in the day - no one was very enthusiastic except perhaps Dr. Goldstein in San Francisco - he tried so hard to get everyone better.
    Diane
     
  7. wigglethemouse

    wigglethemouse Senior Member

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  8. Wonkmonk

    Wonkmonk Senior Member

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    I had some benefit from Valtrex and recently from antibiotics and now possibly from high-dose Vitamin C, but nothing really helped so far. Just little improvements.
     
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  9. knackers323

    knackers323 Senior Member

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    @Wonkmonk
    Depending on the virus you have, the drug recommended by Dr Lerner (who pioneered the treatment) and Dr Montoya would be either Valacyclovir or Valgancyclovir.

    What is recommended for enterovirus?
     
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  10. Wonkmonk

    Wonkmonk Senior Member

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    Sadly, as far as I know there is no proven effective drug for enterovirus so far, but I think @Hip's roadmap mentions some experimental therapies.
     
  11. Hip

    Hip Senior Member

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    The immunomodulator oxymatrine is used to treat enterovirus (coxsackievirus B and echovirus), with Dr Chia reporting major improvements in 30% of enterovirus ME/CFS patients using this treatment.
     
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  12. Wonkmonk

    Wonkmonk Senior Member

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    Isn't Ribavirin also an option (at least temporarily)?
     
  13. Hip

    Hip Senior Member

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    Dr John Chia experimentally treated ME/CFS patients with active CVB3 or CVB5 infection using ribavirin 400 mg twice daily for 4 months, and improvements in ME/CFS were observed within 2 to 3 weeks of starting ribavirin, but at the end of the 4 month treatment, most patients relapsed with 1 or 2 weeks of discontinuation. Ref: 1

    Long term use of ribavirin may lead to serious adverse effects, and this I believe is why this drug does not seem to be used as a long term ME/CFS treatment.


    However, Dr Chia finds Epivir make modest improvements in 1 out of 3 enterovirus ME/CFS patients.
     
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  14. knackers323

    knackers323 Senior Member

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    Thanks. I mean what does dr Montoya recommend for patients with EV rather than herpes virus?
     
  15. Wonkmonk

    Wonkmonk Senior Member

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    He doesn't make any recommendation as far as I know.
     
  16. serg1942

    serg1942 Senior Member

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    I just took some notes from the talk for my own collection of info and also to have it translated into Spanish (if I have energy enough)... Just in case for some of you it is easier to just read a short text than to listen to more than an hour video, here it is (these are just some personal notes, not a whole summary or similar):

    *****

    Talk:”Chronic Fatigue Syndrome: Scientific Discoveries and Future Targeted Treatments” Dr. Montoya Stanford January 17 2018



    Main points (which called my attention):

    - 10% of people who have acute EBV, Q fever, Zoster virus, Ross River virus, west Nile virus, end up with ME/CFS.

    - The analysis review from 2015 published by the IOM is a breakthrough: definite proof that ME/CFS is real and severe.

    -Possible brain image biomarker:

    Increased thickness of certain parts of the brain of patients with ME/CFS was found, and it was correlated with the severity of the disease. Within 1.5 years this study could be replicated and this could be a plausible image biomarker unique in ME/CFS:

    (Anisotropy is the property of being directionally dependent, which implies different properties in different directions. Fractional anisotropy (FA) is a scalar value between zero and one that describes the degree of anisotropy of a diffusion process.(…)FA is a measure often used in diffusion imaging where it is thought to reflect fiber density, axonal diameter, and myelination in white matter)

    http://pubs.rsna.org/doi/abs/10.1148/radiol.14141079

    (…)In the CFS population, FA was increased in the right arcuate fasciculus (P = .0015), and in right-handers, FA was also increased in the right inferior longitudinal fasciculus (ILF) (P = .0008). In patients with CFS, right anterior arcuate FA increased with disease severity (r = 0.649, P = .026). Bilateral white matter volumes were reduced in CFS (mean ± standard deviation, 467 581 mm3 ± 47 610 for patients vs 504 864 mm3 ± 68 126 for control subjects, P = .0026), and cortical thickness increased in both right arcuate end points, the middle temporal (T = 4.25) and precentral (T = 6.47) gyri, and one right ILF end point, the occipital lobe (T = 5.36). ASL showed no significant differences.(…) Bilateral white matter atrophy is present in CFS. No differences in perfusion were noted. Right hemispheric increased FA may reflect degeneration of crossing fibers or strengthening of short-range fibers. Right anterior arcuate FA may serve as a biomarker for CFS.(…)



    - Also found less white matter volume.

    -cytokineTGF-Beta was found very high in ME/CFS: It is an anti-inflamatory cytokine in low doses, but it is pro-inflammatory in high doses: it could be the link of ME/CFS and lymphomas. This particular cytokine could be targeted for future treatments.

    - 17 cytokines were found high in ME/CFS; 13 were found to be pro-inflammatory. The higher the cytokines the more severe the patients. The pattern showed both inflammation of the acquired and innate immune system, therefore therapies must address most parts of the immunity; this is the reason why Rituximab didn’t work (because it only affects the CD20 cells which are just a part of the acquired immunity); the same applies to IL-1 inhibitors not working. In addition: the main functions of these cytokines include eosinophils growth, differentiation and trafficking; they were also involved in the IgE response and related to the Th2 brand: this would explain the hypersensitivity of the immune system and that any stressor causes crashes:

    (Cytokine signature associated with disease severity in chronic fatigue syndrome patients (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5576836/))


    - A good candidate Anti-inflammatory drug to test because of the above would be TOFACITINIB (an inhibitor of the enzyme janus kinase 1 (JAK1) and janus kinase 3 (JAK 3), which means that it interferes with the JAK-STAT signaling pathway.


    - Large study proved that HLA variants predispose to develop ME/CFS and also predicts the severity.

    - ANTIVIRALS:In his previous study they found that Valganciclovir improved the ME/CFS subtype with high herpes virus titers (HHV-6 and EBV), regardless of how long had they been sick. The improvement is very slow. The improvement could be due to the property of this drug to decrease microglia inflammation. It was shown to also increase Th1 (IL-2,12, IFN-g). The duration of the treatment must be at least of 5 years:

    Response to valganciclovir in chronic fatigue syndrome patients with human herpesvirus 6 and Epstein-Barr virus IgG antibody titers.

    Side effects of antivirals are scary mainly because they have been studied under the context of transplant rejection, where patients are taking many other drugs…they should not be that scary.

    - There are some cases of patients with cerebrospinal fluid leak who get cured after having patched the leak: do check for this condition (especially if headaches, POTS…).







     
  17. msf

    msf Senior Member

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    Hmm, if Montoya is right, the question is, can an disease with an innate immune system component be fully autoimmune? I mean, I'm pretty sure the main antigen is good old LPS, but just trying to follow the logic through.
     
  18. Wonkmonk

    Wonkmonk Senior Member

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    As far as I understand, he doesn't think it is autoimmune. He thinks it is caused by a virus and that messes up the immune system.

    As I see it, that would be good news, because a viral infection would probably easier to treat. Just find the virus in question and then work on antivirals against it. With the right amount of funding, a working treatment or even a cure could be found pretty quickly (see HIV/AIDS).
     
  19. Hip

    Hip Senior Member

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    He is not saying ME/CFS is triggered or perpetuated by a single virus, but that several different pathogens can lead to ME/CFS. So you are not likely going to find a single antiviral that will deal with all of them.
     
    Last edited: Mar 16, 2018
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  20. Murph

    Murph :)

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