Metabolomic Evidence for Peroxisomal Dysfunction in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, 2022, Levine,Hornig,Lipkin et al

Discussion in 'ME/CFS research' started by Sly Saint, Jan 12, 2022.

  1. chillier

    chillier Senior Member (Voting Rights)

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    Another thought about this paper. So far every ME metabolomics paper I've seen doesn't have a disease control. I'm very keen to see that because the metabolome is extremely dynamic and it seems plausible to me that effects like the one seen in this paper could be a knock on effect of something else. Maybe it's something commonly seen as a result on many pathological processes.
     
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  2. chillier

    chillier Senior Member (Voting Rights)

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    I read the first line and was thinking 'how bad could it be?' I wasn't expecting something that sounds so much like an aphrodisiac.
     
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  3. Ash

    Ash Senior Member (Voting Rights)

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    It’s actual shark liver oil no?
    That seems like not something we’d wanna be grabbing on mass, given existing problems with over fishing and shark populations.
     
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  4. Murph

    Murph Senior Member (Voting Rights)

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    My reading is that the oil mostly comes from "dogfish" which is the shark they use for fish and chips. Apparently they're catching these fish anyway, they're pleased to be able to use the livers for something. What's more 25% of the weight of the shark is liver.

    Happily, dogfish is not overfished
    https://www.fisheries.noaa.gov/species/atlantic-spiny-dogfish

    In my view it's not conceptually different from a lot of omega-3 supplements, but as I observed earlier, the name gives people pause.
     
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  5. Ash

    Ash Senior Member (Voting Rights)

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    Ahh I couldn’t work out what you meant. That sounds better.

    Yeah, I heard there were problems with the other omega fish oils too. I guess also there is the problem of pollution in the ocean making these toxic too.

    I don’t know what the answer is because people cannot necessarily manage on the less useful plant oils.

    I definitely have had slight improvements when I did take Krill oils.
     
    Last edited: Mar 5, 2024
  6. Mij

    Mij Senior Member (Voting Rights)

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    I have a 3 page report re RBC fatty acids, my omega 3 levels were at 3%. All the the others were within normal range. Taking plant based oils didn't work for me based on my results.

    I take Webber triple Omega 3 fish oils b/c it's IVO My brain function had noticeably improved after taking omega 3 fish oils for 3 months.
     
  7. Jaybee00

    Jaybee00 Senior Member (Voting Rights)

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    Alkyrol—seems like this a Europe only product.

    Europe…..

    The best cheese, the best shark oil.
     
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  8. Murph

    Murph Senior Member (Voting Rights)

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    Related to peroxisomal function and a key product of the peroxisome, the plasmalogen:

    Having considered this paper on plasmalogen replacement therapy I've bought shark liver oil and started taking a couple of tablets a day. The product I got is this one:

    https://www.beevitamins.com.au/products/costar-shark-liver-oil-1000mg-365-capsules-australian-made

    I don't just take any old supplement. This meets my criteria of being research-backed on both sides: plasmalogens are shown to be deficient in mecfs and this product category is shown to be beneficial in increasing plasmalogens. It's inexpensive and, being an animal fat, likely to be safe in modest doses.

    Took them yesterday and certainly feel no worse today. Will report back on whether I notice anything material over the medium term.

    As for all such endeavours it's most likely I won't be able to tell signal from noise, since the causation in the research is unclear, the product quality is unclear, and my background symptom variation is high enough to obscure all but the most significant changes.
     
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  9. Jaybee00

    Jaybee00 Senior Member (Voting Rights)

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    Brave man . I imagine that if SLO provides any symptom relief you should know in about a month, as the Paul study noted significant increases in plasmalogens by 3 weeks.
     
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  10. Jaybee00

    Jaybee00 Senior Member (Voting Rights)

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  11. Murph

    Murph Senior Member (Voting Rights)

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    two month update: feel quite a bit better. Absolutely unable to confidently tell you if it's the shark liver oil.

    Lag is a real issue with identifying cause and effect because (1) lag makes it hard to avoid confounders creeping in while you wait for the effect to arrive, and (2) makes doing a cross-over trail type design slow too. After I stop taking the tablet I need to wait weeks to see if it does anything. I'm very much for bottom-up community based scientific endeavour but I'm also opposed to using the if-that-worked-we'd-know argument. A product that provided a 20% improvement to 40% of people with a 4 week lag, holding other things constant, would be a) hard to identify from unstructured forum chat but b) valuable.
     
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  12. Mij

    Mij Senior Member (Voting Rights)

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    Good to hear that you're feeling positive effects from the shark oil. Could you elaborate a little? I'm assuming it's not cognitive improvement like my own experience from taking omega 3's which was easier to recognize and more obvious.
     
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  13. Creekside

    Creekside Senior Member (Voting Rights)

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    Now ask the shark how it feels. ;)
     
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  14. Mij

    Mij Senior Member (Voting Rights)

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    I hope they're not 'finning' them :(
     
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  15. Murph

    Murph Senior Member (Voting Rights)

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    I'm feeling positive effects and taking shark oil, not sure about the from. Can't ascribe causation!

    Just generally have a higher pem threshold, can walk the dog a bit again. less ruined after the weekend (i have kids).

    The oil comes from "dogfish" that are caught for meat. The shark liver oil is a byproduct. A few capsules barely even touches the sides of what's available though, a shark's liver is 20 percent of its weight!
     
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