Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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Guys Let's Focus on the latest science here

Discussion in 'General ME/CFS Discussion' started by eljefe19, Feb 9, 2017.

  1. eljefe19

    eljefe19

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    Both users @nandixon and @Bdeep86 have been working on theories relating to causal factors of ME/CFS, plus we are working on a treatment protocol and I myself will be trialing for the first time in CFS a new experimental drug, Obeticholic Acid.

    This is all based on the latest Fluge and Mella research aka the closest look at the fundamental dysfunctional mechanism of CFS. We'd like to call on the scientists of PR to come to this thread to collaborate, especially the B cell experts.

    Bdeep86 will be releasing his full protocol at a later date. I see a lot of seemingly irrelevant posts here to real progress. For example, if my personal experiment with Obeticholic Acid goes well, then that is valuable anecdotal data, which will spur further trial.

    Human scientific progress has been a series of trial and error.

    Relevant thread here
     
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  2. Jesse2233

    Jesse2233 Senior Member

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    @Jonathan Edwards I know you see no convincing evidence for an ongoing viral infection, but given your knowledge of RTX, would combining it with anti-virals and T2 immune shifters have any negative interactions?

    Edit: adding @nandixon and @Bdeep86
     
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  3. Jon_Tradicionali

    Jon_Tradicionali Alone & Wandering

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    Zogor-Ndreaj, Shkodër, Albania
    The illest 4 letter word in the world

    How does Obeticholic acid fit in with FlugeMella theory?
     
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  4. eljefe19

    eljefe19

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    The illest for letter word observe how I serve!!!

    That would be a great question for @nandixon but F&M found dysfunction in PDH, namely that it was downregulated and PDK1 and 4 were upregulated. Well the farthest the upstream goes is the FXR receptor. So it's like an attempt to treat the causal factor.

    Obeticholic Acid is a much stronger semisynthetic bile salt capable of strong FXR agonism.
     
  5. Jonathan Edwards

    Jonathan Edwards Senior Member

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    I have no idea what a T2 immune shifter would be. You may be referring to TH2 cells but the idea that there was some sort of 'balance' between Th1 and Th2 cells that one might 'shift' I think belongs to the 1990s. It is now as dead as a dodo as far as I am concerned. People moved on to Th17 and then realised there is nothing much wrong with the T cells in autoimmune disease. I am afraid this sounds like immunobabble to me.
     
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  6. eljefe19

    eljefe19

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    Oxymatrine is has shown success as an ME/CFS treatment which theoretically balances th1 and th2. Other immunomodulators interferon were shown successful by Dr Chia. I think jesses question is valid here.
     
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  7. Jesse2233

    Jesse2233 Senior Member

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    Thanks for clarifying. In your view is there any merit to the concept of using treatments like oxymartine, interferon, or Nexavir to modulate the immune system into a more balanced state?

    I'm new to all of this, but am interested in learning
     
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  8. eljefe19

    eljefe19

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    There is some evidence for these meds in ME/CFS and so I think Prof Edwards is speaking to the th2>1 theory in general and not addressing the fact that these treatments seem to help for SOME reason.
     
  9. dannybex

    dannybex Senior Member

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  10. Snow Leopard

    Snow Leopard Hibernating

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    Anecdotally, oxymatrine did nothing at all for me... :confused:

    I happen to agree with JE on the "Th2 vs Th1" thing, it is an oversimplification. There is no such terminal differentiation. Studies have shown "Th2" T cells can be stimulated by and secrete "Th1" cytokines and vice versa.

    The historical Th2/Th1 observations are simply transient cellular adaptations to the microenvironment.

    Note that as such, those derived from blood don't necessarily represent what might be going on where there is specific peripheral inflammation.

    I realise some might not find this answer satisfactory, so here is a longer answer I've just found, including some history and why the concept is outmoded:

    https://www.quora.com/Whats-the-difference-between-Th1-and-Th2-helper-T-cell-subsets
     
  11. dannybex

    dannybex Senior Member

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    Good points @Snow Leopard, but how would you explain the absence of a 'normal' immune response, i.e., a lack of real, prolonged fevers that help fight off infections, as compared to the tepid (and often short-lived or intermitten) 'fever-like' response in the ME/CFS patient population? Doesn't that suggest an overall immune shift?
     
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  12. Snow Leopard

    Snow Leopard Hibernating

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    All I'm saying is that such things cannot be due to T-Cells differentiating across a "Th2/Th1" path as there is no evidence that such differentiation is terminal.
     
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  13. eljefe19

    eljefe19

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    @Snow Leopard I'd really like to know why Oxymatrine is helpful in ME/CFS then so we could design a drug after it!!! I will say, since starting oxymatrine and other Th1 shifters, my bacterial titters skyrocketed after never having been highly positive before. Dr. Chia sometimes gives Rifampin along with Oxymatrine for the exact theory that bad bacteria will thrive when the body shifts to th1. Oxymatrine and Rifampin are synergistic according to Dr Chia. So unless all that is coincidence, or it's explained by a different mechanism, it would seem the th2/1 theory holds some weight in vivo.
     
  14. Snow Leopard

    Snow Leopard Hibernating

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    Is it effective? I wasn't aware of any double blinded trials.
     
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  15. eljefe19

    eljefe19

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    Fortunately Dr Chia has been having Alwangs in relevrucatate including the very low of realapsec to relapse. Being interested to try! Probably further tested for Seritenitri nerd oefg buff
    lol sure be teachnical....plenty mesmergtltrsmsdor
    st used.
     
  16. eljefe19

    eljefe19

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    Cr Chia and oth
     
  17. DeceptivelySlow

    DeceptivelySlow

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    The information below is from an older paper circa 2000 dealing with sympathetic nervous system noradrenergic modulation of the immune system for what it is worth:

    “By inhibiting type 1 and potentiating type 2 cytokine production and by acting directly on effector cells, CAs suppress cellular and boost humoral immunity. The Th2-driving effects of CAs may have, however, under certain conditions, both beneficial and detrimental consequences.”

    The same paper goes on to cite the following (the citation is even older; 1995):

    “The autonomic nervous system has not been as extensively studied in CFS, although these patients have been found to experience a high prevalence of neurally mediated hypotension on tilt table testing, which is related to autonomic dysfunction.”

    The above came specifically from:

    The Sympathetic Nerve—An Integrative Interface between Two Supersystems: The Brain and the Immune System

    Ilia J. Elenkov, Ronald L. Wilder, George P. Chrousos and E. Sylvester Vizi

    Pharmacological Reviews December 2000, 52 (4) 595-638;
     
  18. lnester7

    lnester7 Seven

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    In my case, because my immune system was dysragulated I think you need TNF1 or II I forgot by now so don't quote me on the exact cytokines, but mine basically non existing, why I never develop fevers.
    The TH2 theory has been around for ages and is basically how they treat my immune system, mine is just unbalance some from the th1 some from the th2 so it is not a th2 shift per say. So I am given inmune modulators. It is not a cure I assure you since tones of doctors have been doing this for 20+ years. But it does help a lot. I don't get 60+ symptoms like I used to.
     
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  19. eljefe19

    eljefe19

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    It's not about the exact mechanisms here, at the moment, the case is there is plenty of in vivo evidence of Oxymatrine improving patients symptoms at around 50% I believe total. So, this question is if th2/th1 are not involved, how could starting and maintaining Th1 support (gearing the immune system for viral infections) have allowed my bacterial titters to have skyrocketed? The theory is if tH1 is elevated, th2 suffers and opportunitistic bacterium move in. I know how high titters to mycoplasm and chlymidia pneumonia for the first time, as I'm now 4-5 months into th1 shifters like Oxymatrine and 5-AT. Makes sense to me. Hopefully antibiotics will lead to some improvements while I consider ivig and RTX.
     
  20. bertiedog

    bertiedog Senior Member

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    Is there a consensus that this definitely happens with all ME/CFS patients? It is definitely true for me and causes me endless problems with my NHS surgery who won't give me antibiotics when I know I need them. They just tell me its a virus but it's not, usually a throat infection that simmers on and on below the surface making me extremely unwell and unable to do anything butI won't recover until I get an effective antibiotic (often I have had to get these over the Internet because of the attitude of the doctors at my surgery.).

    Pam
     
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