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.
Discuss the article on the Forums.

The role of IP-10 in Chronic Fatigue Syndrome

Discussion in 'Latest ME/CFS Research' started by JaimeS, May 2, 2017.

  1. Snow Leopard

    Snow Leopard Hibernating

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  2. eljefe19

    eljefe19

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    @nandixon Started Sirolimus today actually. That's a really interesting find about Sirolimus downregulating chemokines because it's the third potential significant MOA it has (B cell suppression and Akt activation).
     
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  3. Cinders66

    Cinders66 Senior Member

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    I don't understand much the science of this , which looks possibly interesting on cytokines
    Of the 5 MRC funded projects this was one which looked one of the most interesting, rather than an essentially sjogrens fatigue study and Carmine Parientes interferon one
    I'm staggered that even in this that Oxford criteria and NICE criteria were used and that this was part funded by MEA who are supposed to be against both criteria. Do the charities have no influence on the criteria of studies they fund and who would have chosen this and why, is it the CMRC favoured approach? I'd thought this was the psychological schools criteria of choice and then the biological scientific research in uk like Newton or Bansal used fukuda etc .

    We arent going to see Oxford retired and unhelpful Cochrane reviews promoting exercise based on Oxford criteria challenged like this.
     
    Last edited: May 3, 2017
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  4. JaimeS

    JaimeS Senior Member

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    What a coincidence; there is a paper sitting at my left hand that talks about rapamycin. I think we're thinking along the same lines, @nandixon, just quickly glancing at what's in your signature. We haven't tested rapamycin yet, so far as I'm aware.

    Downregulation of MAPK is a reasonable tack to take on the surface; but it's involved in so many different signalling pathways that I'm tentative.
     
  5. TiredSam

    TiredSam The wise nematode hibernates

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    Me too! Probably a long time before you though.
     
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  6. AdamS

    AdamS Senior Member

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    I started looking into IP-10 inhibitors and found this interesting given the recent findings about the microbiome and subsequent discussion about probiotics:

    L. casei can apparently be found in drinks like Actimel & Yakult. VSL#3 can be bought online. I think E-coli Nissle is also known as Mutaflor and doesn't seem to have the same inhibitory effect on IP-10 as L. casei.

    [​IMG]

    It's a long paper...but may be useful: http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0004365

    Finally on a side note...I see that raised IP-10 is also associated with Hepatitis C and also patients co-infected with HIV. Would the anti-viral Ribavirin be useful for us too in this case?
     
    Last edited: May 4, 2017
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  7. John Mac

    John Mac Senior Member

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    @AdamS Pardon my ignorance but most of this is way over my head, are you saying that taking L. casei will lower IP-10? which I assume would be a good thing if you have raised IP-10?

    From the study:
    I took part in the study and had a muscle sample taken and analysed so hoping they found IP-10 high.
    I have tried probiotics before and they seemed to trigger my ME symptoms the following day but will give it another go based on these (potential) results.
     
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  8. AdamS

    AdamS Senior Member

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    @John Mac

    From what I understand, both L. Casei and VSL#3 have been shown (at certain doses) to inhibit IP-10.

    Whether treatment with these probiotics would help us is something i'm not sure of. I'd proceed with caution at this stage if you've had bad reactions to probiotics in the past.
     
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  9. Hutan

    Hutan Senior Member

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    That's interesting. Three of us in my family got ME in 2103. My daughter was prescribed VSL#3 by a paediatric gastroenterologist. My daughter mostly recovered, probably not completely, but certainly enough to live what looks like a normal life. My son and I remain very much affected.

    I'm not really sure why my son and I didn't try the VSL#3. It wasn't particularly clear-cut, as in - 1. take the VSL#3, then 2. get better. After the first month of illness, my daughter was already not as sick as us and this was well before the VSL#3. Also, that first year in particular was a haze of just getting through each day as I was still trying to work (with my husband working overseas) and work out what was going on and support my children. So, maybe I missed the contribution of VSL#3.

    Still, I expect that there isn't a lot of downside to taking the probiotic. I must get some and try.
     
    Last edited: May 4, 2017
  10. JaimeS

    JaimeS Senior Member

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    Having specifically tried VSL-3 and had a terrible neurological response, I would NOT recommend. Powders appear terrible for me, but I have an enteric-coated capsule from Dr Ohirra's that works wonders. :)
     
  11. eljefe19

    eljefe19

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    Hi Jaime,
    I have a message to pass to Prof Davis. I think Rapamycin needs to be a priority in testing. After reading a few accounts here of Rapamycin producing fast and drastic relief, I acquired some.
    I am now three days into starting 1 mg Rapamycin, so take with a grain of salt, but I feel basically cured. I've tried probably 200 different supplements and medications so I don't think it's placebo effect that my brain fog is gone.
    Thanks Jaime!!
    ___________________________________________________________________________________________


    Dear Prof Davis,

    I know you are hard at work but I think you should hear this.
    I saw an account of a patient that was given the drug Rapamycin and they had very fast and very drastic improvements in their ME/CFS symptoms. From bedbound to active. Even exercising.

    Then I saw a doctor in Dallas was using Rapamycin for ME/CFS and six or so patients had all had drastic improvement.
    So, I acquired 1mg tabs of Sirolimus (Rapamycin). It's been three days since the first dose.

    I have not felt this physically, and mentally well, in months or maybe years.

    For example, my brain fog is greatly improved. I don't think that placebo could produce such an effect.

    What I've learned is that Rapamycin inhibits mTorC1 and in the process this activates Akt. The Akt activation could explain the immediate relief felt from Rapamycin. Interestingly though, Rapamycin also inhibits chemokines that are high in ME/CFS, and also has suppressive effects on B cells and can remove pathogenic antibodies (not sure about autoantibodies). So it has three methods of action that may ultimately unblock the PDH enzyme and abolishes impedance in your experiment. I like those odds.

    Thank you for all you do for our community, I'm truly grateful that you would take the time to read this.
    God speed, signed;
    eljefe19.
     
  12. AdamS

    AdamS Senior Member

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    Well this is exciting! :D

    Can't wait to hear about your experiences longer term! Please do take care though :)
     
  13. aimossy

    aimossy Senior Member

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    Hi Jaime have you got a link to that specific one?
     
  14. JaimeS

    JaimeS Senior Member

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    I might even have a rationale too, even beyond MAPK, based off of that article I was telling you about before. :)

    I just added information about probiotics here: http://forums.phoenixrising.me/inde...-now-how-it-helps-and-general-me-advice.1739/ :D

    For those who prefer to cut to the chase:

    -J
     
  15. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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    Thanks for being n = 1 and for sharing your great response, gives us all hope.

    Are you taking 1mg each day? Do you anticipate taking it every day, or will you stop and see what happens?

    A quick search says I can buy it (in Canada) for $900 US per 1mg pill. Did you find a cheaper source?

    Thanks.
     
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  16. JaimeS

    JaimeS Senior Member

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  17. Tilney

    Tilney

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  18. Jesse2233

    Jesse2233 Senior Member

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    Yes same drug
     
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  19. Aroa

    Aroa

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    Wow @eljefe19 I am glad you are doing so well :)

    Thank you for sharing your experiences and keep us updated please !!!!
     
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  20. eljefe19

    eljefe19

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