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):
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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…).
