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The spread of EBV to ectopic lymphoid aggregates may be the final common pathway in the pathogenesis

Discussion in 'Latest ME/CFS Research' started by Kati, May 11, 2017.

  1. ash0787

    ash0787 Senior Member

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    I also really doubt this one, EBV link has been suggested many times before but there doesn't seem to be any results which are supporting it as particularly relevant, also notice what he says about PEM being caused by physical disturbance of the nerves, if that were true then it should be able to be provoked by external forces like riding in a vehicle of some type, e.g. I have a mobility scooter which has hard plastic wheels, if you ride it over cobblestones it shakes the entire body vigorously, so I think that sort of scenario would be common enough that someone would have noticed by now if there was a link to PEM.
     
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  2. AdamS

    AdamS Senior Member

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    Yeah I'm pretty sure Alan Light found changes in gene expression following exertion which better explain some of the symptom exacerbations seen in PEM, to me this seems more tangible than the nerves thing:

    RESULTS: In 71% of patients with CFS, moderate exercise increased most sensory and adrenergic receptor's and one cytokine gene's transcription for 48h. These postexercise increases correlated with behavioural measures of fatigue and pain.

    From: https://www.ncbi.nlm.nih.gov/m/pubmed/21615807/
     
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  3. wastwater

    wastwater Senior Member

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    I don't really understand the paper but I'm definitely ebv onset and it mentions a few keywords for me.
     
  4. Old Bones

    Old Bones Senior Member

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    @Murph I also find this hypothesis interesting. Like you, my arms (and upper back) are most affected by muscle weakness/PEM. It can take weeks, or months, for my arms to recover from minimal, but unaccustomed, use.

    I've recently thought that if my legs were weakened by activity like my arms are, I'd be in a wheelchair. It seems I'm one of the fortunate ones in this respect.
     
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  5. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    My cfs started at 31 yo with cmv mono and at the time negative to ebv, several months later it felt like mono again and ebv tested which was igg positive, so within those last months i had picked up ebv.

    Igg suppose to be life long. A couple of years later i tested totally negative and retested again in a couple more years totally negative. Not suppose to happen and currently 46yo and work on the health industry, how could i not have come across ebv????

    The loss of igg antibodies to ebv was a common finding in the lake tahoe cfs outbreak patients.
     
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  6. lansbergen

    lansbergen Senior Member

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    Miracle?
     
  7. Helen

    Helen Senior Member

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    Interesting. FWIW, it has been suggested, or maybe even stated, that a minority of people with an ongoing Lyme infection isn´t able to produce antibodies which contributes to unreliable results from some of the available tests. Could it it be that PWME belong to this minority?
     
  8. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Im sure ebv triggers a few cases of cfsme but like many immune disorders, these virus can reactivate especially if a cfsers has low nk function and for some can worsen symptoms. Treating ebv isnt a cure for cfs but if its an issue for a particular person then treating it can help.

    Im not sure research is that current when its commonly quoted 95% of adults have been exposed to ebv etc, especially when you think of the many children that rarely leave the house and interact with us as much as what use to happen. A lot of interaction is online so less chance of passing on ebv also??
     
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  9. TracyD

    TracyD

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  10. imitate-past-reign

    imitate-past-reign

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    Its effect would be countered by the cortisol administered, and only one in a million B-cells are infected with EBV. Also, Rituximab depletes B-cells when the b-cell response to EBV is already suboptimal, further compounding the problem.

    You could do a lymph biopsy but it is not necessary, since CFS patients have defective T and B cell control against EBV even in plasma, the effect is compounded in lymph.

    If you do not have an IgG response but have EBV, it could be fatal, so this is unlikely.

    He attempted a pilot trial but no one was interested. This was a last resort. He works every day to get that trial. Data shows that CFS patients that are patient with EBV have, homogeneously, defective T and B cell responses to EBV.

    Conservatively, this would effect about 8 million people, or 40% of CFS patients. The subset it could improve would be EBV +, EBNA +, and women that got ill pre-pregnancy.

    95% of CFS patients are positive with EBV, and symptoms worsen with CMV, which both use the same treatment (CMV can be vectored in this treatment). Also, semantically, no one has any idea what causes CFS, so this is irrelevant.

    I suspect this treatment would improve aerobic capacity in healthy EBV-infected patients just like HBOT improves healthy cognitive functioning, at unjustifiable expense.
     
    Last edited: Feb 14, 2018
  11. imitate-past-reign

    imitate-past-reign

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    Is there a single unifying cause of depression? Multiple Sclerosis? These all have subsets but no known etiology. The leading idea, PDH certainly will not explain fast-onset CFS, they have not even attempted to reconcile it.

    I addressed this already, but it is critical to point out that Valcyte / Acyclovir have poor lipophilicity and poor evidence for use, are still being used, and that is the problem. Stanford uses valganciclovir but does not use this more effective (against EBV, not against CFS necessarily), cheaper therapy with less side effects.

    CMV might be an option, but you're right, sorry.

    Patients had to go under surgery twice for the treatment, which is not necessary. Just the sponsor requirement. This is a better treatment for gradual onset, because its a generalized immune shift. No company can profit from this treatment, because it is patented and abandoned. Autologous NK cell treatment is available in Japan, at malls. That is how simple the treatment is to execute.

    Original, Replication. He is attempting to be diplomatic and inclusive with regards to the nervous system.
     
    Last edited: Feb 14, 2018
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  12. Janice Hargreaves

    Janice Hargreaves

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    I know that the herpes viruses have been looked at for many years and the links have never been made.

    I feel there are many reasons for this ranging from the selection criteria of the subjects,the blood collection and storage methods,tissues selected for testing, the testing methods themselves not being sufficiently sensitive and precise, etc., etc..

    However over the last 10 - 15 years there has been an exponential improvement in precision and accuracy with all the -omics methods.
    Many old paradigms are being over-turned. However that in it's self leads to validation problems.

    I found this paper by Loebels v intersting

    "Serological profiling of the EBV immune response in Chronic Fatigue Syndrome using a peptide microarray."

    Loebel M, Eckey M, Sotzny F, Hahn E, Bauer S, Grabowski P, Zerweck J, Holenya P, Hanitsch LG, Wittke K, Borchmann P, Rüffer JU, Hiepe F, Ruprecht K, Behrends U, Meindl C, Volk HD, Reimer U, Scheibenbogen C.

    PLoS One. 2017 Jun 12;12(6):e0179124. doi: 10.1371/journal.pone.0179124. eCollection 2017.

    PMID: 28604802 Free PMC Article
     
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