Despite Our Losses, People with ME/CFS Want More
We've been cheated by ME/CFS and we all know it. That's a no-brainer, if you'll pardon the cognitive pun. And loss didn't just result from the bad things that befell us. It also encompasses the good things that just ... never came. The absence of bounty. Of wholeness. Of peace.
Discuss the article on the Forums.

ME/CFS patient makes major improvement and goes back to work from C60 supplement

Discussion in 'General Treatment' started by Hip, Dec 28, 2018.

  1. Hip

    Hip Senior Member

    Messages:
    11,342
    Likes:
    19,353
    I just want to document a major improvement reported by a ME/CFS patient after taking the supplement C60, otherwise known as "buckyballs" or buckminsterfullerene.

    Prior to taking C60, this patient probably had moderate level ME/CFS, but C60 allowed him to return to work as a teacher (which I guess means he is now somewhere between mild and remission).

    The patient does not want to be named, but reported his success with C60 to a PR forum member, who then communicated it to me. Here is a summary of what he reported:

    This ME/CFS patient said that after taking C60, his state of awareness became very acute so that he felt like he was 'living in the now". He said that everything became crisp and clear, and that he started feeling alive and alert in a way he could not remember being before.

    He mentioned that as a result of C60 he started getting beautifully profound sleeps, with vivid and pleasant dreams, and started waking up refreshed. He found his decades-old need for an afternoon nap completely disappeared. He said he looks and feels fresher brighter and younger. He says that an aliveness and zest for life has been unleashed by C60, and that he has not felt as well, energetic, focused and attuned since his 20s.

    This was all reported early in 2018, and apparently the benefits are still holding up 10 months later.

    In terms of dosage, he started with 1 ml per day (contains 0.8 mg of C60). The benefits appeared within days and weeks.

    I am just paraphrasing from what this ME/CFS patient wrote (I don't want to quote him directly, because he wanted to remain anonymous).



    C60 is a molecule consisting of 60 carbon atoms that are arranged into a sphere shape. This article says that C60 locates itself in the mitochondria, where it acts as a reusable antioxidant. Though this paper says it is actually the malonic acid derivative of C60 (rather than C60 itself) that locates to mitochondria, where it likely acts as a MnSOD superoxide mimetic, providing antioxidant protection for mitochondria.

    C60 is usually sold and is taken in olive oil, and this mixture is sometimes referred to as C60-OO.

    C60a.png
    The C60 molecule, made from 60 carbon
    atoms arranged as a sphere

    Many people on the Longecity.org forum have been trying C60 over the last 6 years: they have a sub-forum dedicated to C60. There is a poll on Longecity.org that attempts to quantify the effects of C60.

    Facebook groups here, here and here.

    Here is a SelfHacked summary of C60.

    On the PR forum, this ME/CFS patient reported improvements on C60. But here an ME/CFS patient reported long-term adverse effects that appeared after taking C60.



    CAUTION: C60 in olive oil is a fairly experimental substance, and sold on the assumption that it is not for human use (that gets the suppliers off the hook if you experience adverse effects). I have read accounts of people getting adverse effects from just one dose. I experienced some very mild adverse effects myself when taking C60 (detailed below), although nothing of major concern.

    When buying C60 in olive oil, you want to find a high quality supplier. There are reports of fake C60 being sold. Also if C60-OO is exposed to light, it can create toxins and likely carcinogens, so it is important that manufacturers and users protect their product from light.

    From my research, high quality sources include:

    USA:
    https://carbon60oliveoil.com$16 for 30 ml at 0.8 mg/ml. Free US shipping.
    https://www.goodandcheapc60oo.com$19 for 100 ml at 0.9 mg/ml. Free US shipping. Intl. shipping $10.

    UK:
    https://www.carbon60oliveoiluk.com£50 for 100 ml at 0.8 mg/ml. Free UK shipping

    The UK company is a distributor of the US carbon60oliveoil.com product. These products were the ones used by the above ME/CFS patient.



    MY OWN BRIEF EXPERIENCE WITH C60: I took a single 1 ml dose of C60 in olive oil, and found that the immediate effects were good (although mild): some increased conscious awareness, especially for the visual environment, and some mildly increased energy. And I felt calmer.

    Then the next day I was hit with a mild mental health crisis, with some depression, more fatigue, and some very mild psychosis (but these are mental symptoms that I find drugs and supplement sometimes trigger in me anyway, and I find these symptoms often appear without any specific trigger).

    I also felt like the C60 had triggered some PEM (even though I did not do much physical or mental exertion), and it took around 2 days for this PEM to clear.

    After this mild adverse affect I did not try another dose. However, I want to experiment with C60 some more at some point, but will need to buy some fresh supplies, as the shelf life of an opened bottle of C60 is around 30 to 60 days (though an unopened bottle has a 2 year shelf life, according to a manufacturer). Ref: 1
     
    Last edited: Jan 2, 2019
  2. knackers323

    knackers323 Senior Member

    Messages:
    1,469
    Likes:
    468
    @Hip did you happen to come accross a good Australian or NZ source of this?
     
  3. Shoshana

    Shoshana Northern USA

    Messages:
    4,151
    Likes:
    12,098
    Northern USA
    No one has done an independent, double blind, control-group study or anything similar, or you likely would have mentioned it?

    I am Not trying at all, to be critical , of anyone, or negative in any way, I am just wondering. I understand reasons why none may have been done, and something could still have value.

    I myself, prefer to have some reliable research of some kind, especially if something can have adverse effects.
    And drain financial resources that are needed.

    In any case, thanks for sharing the info, @Hip
    I do not use facebook, so I do like to be informed.
    So I appreciate the effforts and the sharing and disseminating of info.
     
    Murph and jesse's mom like this.
  4. Wayne

    Wayne Senior Member

    Messages:
    3,235
    Likes:
    3,935
    Ashland, Oregon
    A friend of ours stopped by a few months ago and was "raving" about C60. I can't really remember what she felt it did for her, but I seem to recall her saying how "great" she felt when she took it. What I remembered more clearly was how somebody she knew who had Alzheimer's, and improved significantly from the C60.

    My understanding is that its main modus of action is that it's a super anti-oxidant, and from my understanding, somewhat similar in that regard to sodium thiosulfate (which is very cheap, and which I intend to try shortly). Sodium sulfate can be very protective of the ears, which I regard as sort of an extension of the brain. So in my mind, what's good for the ears, is good for the brain. And what's good for the brain, is good for ME/CFS.

    @Hip, thanks for posting all this great information. I assume I'll be following up on this this coming year. Perhaps a new year's resolution of sorts. :whistle:
    ................................................

    Here's a testimonial on C60 improving tinnitus--from THIS SITE (LongeCity). -- @Cort

    I am not a professional nor affiliated with the medical field, but I just wanted to offer a few of my own anecdotes after taking c60 for 6 months...I have had tinnitus in my left ear for over 25 years as a result of playing guitar in a very, very loud band without hearing protection - a non-stop roaring and ringing sound - I really messed my health up from years of living the lifestyle that usually goes along with playing that sort of music.

    I started taking one dropper of C60 every other day and soon noticed I had more energy and a feeling of well being. 3 months ago I began mega dosing with 60 ml once a week. That's when I noticed my tinnitus seemed to be diminishing. Now it is only noticeable when I hear loud sounds,. I am amazed.
     
    Last edited: Dec 28, 2018
    jesse's mom, Asklipia, Hip and 5 others like this.
  5. Hip

    Hip Senior Member

    Messages:
    11,342
    Likes:
    19,353
    For Australia, these guys should be high quality sources:
    https://carbon60oliveoil.com.au
    https://c60olive.com.au

    For Australia and NZ:
    http://www.c60australia.com

    For Canada:
    http://www.c60health.ca
    https://www.westernnaturopathic.com

    For the UK:
    https://www.carbon60oliveoiluk.com
    https://www.thec60store.com

    Netherlands:
    https://www.nextgene.nl

    The above are all listed on the distributors page of the US company carbon60oliveoil.com, a supplier which is generally well-regarded on longecity.org, so I presume the above sell the C60-OO made by that US company.

    Through lab testing funded by members of www.longecity.org, the carbon60oliveoil.com product was the only one out of 3 tested which contained the amount of C60 stated on the label.

    Though the Good and Cheap brand of C60-OO got good review on www.longecity.org.
     
    Last edited: Dec 30, 2018
  6. Hip

    Hip Senior Member

    Messages:
    11,342
    Likes:
    19,353
    You're right to draw attention to the lack of research.

    The benefits of C60 were discovered during the initial toxicology studies, in which C60 was fed to rodents to observe any adverse effects. Rather than experiencing adverse health effects, it was discovered that the rodents lived twice as long while they were fed C60. That discovery started all the excitement about C60.

    However, C60 does not have a proven safety record, so there could well be adverse effects.

    Indeed, one study discussed on this thread and this thread at longecity.org found that a commercially-available C60 product caused increased tumor growth in a rat study. However, it appears this may not be due to the C60, but may be due to the formation of C60 epoxides that occurs when C60 in olive oil is exposed to light during manufacturing or storage. C60-OO is light sensitive and can form these toxic epoxides as a result of light exposure.

    This underlines the importance of using a high qualify supplier if one is going to experiment with C60. And keeping the bottles away from light. I wrapped my bottle with aluminum foil to keep out the light.

    One C60 supplier says this:
    Although light-activated C60 has also been used experimentally to treat cancer, it says on the same page.


    Quite a few people on longecity.org are buying C60 powder and mixing this with olive oil to make their own C60-OO at home, rather than buying commercial C60-OO which potentially might have been exposed to light during manufacture, storage or transport.
     
    Last edited: Dec 30, 2018
  7. nsdn

    nsdn Senior Member

    Messages:
    100
    Likes:
    48
    Hi guys.

    What do you think the daily dose for M.E could be?

    Best regards.
     
  8. Hip

    Hip Senior Member

    Messages:
    11,342
    Likes:
    19,353
    The ME/CFS patient from the above account said he started at 1 ml per day, which he found quite potent. 1 ml from carbon60oliveoil.com will contain 0.8 mg of C60.

    But he said you could equally start with 0.1 ml per day, and that there are no hard and fast rules to dosing.

    Apparently some people respond rapidly to C60 within hours or days; whereas with others the benefits appear more gradually.


    Don't forget to protect your bottle from light (eg, store in a dark draw).
     
    Last edited: Dec 29, 2018
    jesse's mom, Wayne and nsdn like this.
  9. nsdn

    nsdn Senior Member

    Messages:
    100
    Likes:
    48
  10. Hip

    Hip Senior Member

    Messages:
    11,342
    Likes:
    19,353
    That human dose calculator provides a figure of 5 ml of C60 in olive oil, for a 75 kg human (with the olive oil containing 0.8 mg/ml of C60). But I think that 5 ml is given once every two weeks, because the original Baati longevity study on rats (the study which started all the excitement about C60) in the final phase gave this C60 dose once every two weeks:
    5 ml once every two weeks works out as around 0.4 ml every day. Thus 0.4 ml every day is the equivalent human dose, based on the dosing used in the final phase of the Baati rat study (in which it was found that the rat lifespan was doubled as a result of the C60).

    I verified that the website got their figures correct:
    In the final phase of the Baati study the rats weighting around 465 grams were given 1 ml of olive oil (containing 0.8 mg/ml of C60) every two weeks. So that's a dose of 0.465 ml per kg of rat body weight every two weeks.

    Using the standard rat-to-human conversion figure of 6.2, that equates to a human dose of 0.465 / 6.2 = 0.075 ml per kg body weight. So for an 75 kg human that is an oral dose of 5.6 ml every two weeks, which works out to 0.4 ml every day.
     
    Last edited: Dec 30, 2018
    sb4 and IThinkImTurningJapanese like this.
  11. prioris

    prioris Senior Member

    Messages:
    436
    Likes:
    286
    one website says all C60 is is just a form of activated charcoal ... after looking at amazon, i am suspicious of it ... reviews may be fake
     
  12. Hip

    Hip Senior Member

    Messages:
    11,342
    Likes:
    19,353
    Whoever wrote that does not know what they are talking about. The chemical formula for charcoal is C. The chemical formula for C60 is, well, C60.

    But there are websites selling fake C60: they sell olive oil with some dye in it to make it look like it is C60-OO.
     
    jesse's mom likes this.
  13. prioris

    prioris Senior Member

    Messages:
    436
    Likes:
    286
    i know but even what little research there is doesn't appear to be much bang for the buck
    the benefits seem minuscule even if you were a mice
    the product reviews i looked at came from SES product which was used in research
    it costs $70 a bottle ... even though reviews generally positive rating, i wasn't getting a warm and comfy feeling except vagueness
    if other people want to fork out the money and try it then go for it ... maybe they have money back guarantee
     
  14. Hip

    Hip Senior Member

    Messages:
    11,342
    Likes:
    19,353
    In the Baati study, rats fed C60 lived twice their normal lifespan. That's not what I would call a minuscule effect. Although it has to be said that the Baati study has not yet been replicated.



    The C60-OO product from https://carbon60oliveoil.com linked to above costs $16 a bottle.

    The SES C60-OO product was the one that led to rats getting an increased growth rate of cancer, in Kmoody's unpublished study that I mentioned above. See this post from the LongeCity forum.

    This may be because SES exposed their C60-OO to light during manufacture or storage, which can cause photo-oxidation in the C60-OO. Kmoody concludes this. It's possible SES may have now changed their manufacturing and storage process to protect the product from light.

    LongeCity forum member AgeVivo also performed his own small study at home, feeding 3 mice with C60-OO, and they all died of cancer.


    So on the one hand you have the Baati study which found C60 doubled the rat's lifespan. And on the other you have concerns that when exposed to light, or possibly just when the C60-OO product is long past its sell-by date, this may generate carcinogens in the product.

    Kmoody's (Kelsey Moody) research is focusing on turning C60 into a useful pharmaceutical drug, possibly for longevity and anti-aging purposes. Moody is the CEO of Ichor Therapeutics. But clearly this issue of possible carcinogens or tumor growth promotors appearing on light exposure has to be sorted out.



    To minimize risks, you would want to find a seller who manufactures their C60-OO completely in the dark, and whose batches are freshly made. I like the fact that on the Good and Cheap website they say:
    And:
     
    Last edited: Jan 2, 2019
    jesse's mom, Abha and sb4 like this.
  15. prioris

    prioris Senior Member

    Messages:
    436
    Likes:
    286
    thanks. good info.

    as an aside, i think top immune supplement in world bar none is 1,3d beta glucan. e.g. wellmune 70%, glucan elite 85%
     
  16. keenly

    keenly Senior Member

    Messages:
    714
    Likes:
    756
    UK
  17. Kenny Banya

    Kenny Banya Senior Member

    Messages:
    345
    Likes:
    565
    Australia
    I am going to try this - so I will give my feedback
     
    Hip and Wayne like this.
  18. Research 1st

    Research 1st Severe ME, POTS & MCAS.

    Messages:
    758
    Likes:
    2,486
    So to recap. An anonymous source tells someone they recovered from a disease with a compound called C60 without any evidence they exist, they were ever ill, and pertaining to an illness that lacks a diagnostic test to confirm it exists in the patient to begin with.

    This is rather like me claiming on a technology forum my anonymous source is an astronomer, they've seen planetary anomalies at a resolution rarely experience by those outside of NASA and telling others if they buy my friends C60 telescope (which isn't confirmed to visualise anything at high resolution) they might see it too.
     
    Last edited by a moderator: Jan 4, 2019
    Snow Leopard likes this.
  19. Hip

    Hip Senior Member

    Messages:
    11,342
    Likes:
    19,353
    No he is not an anonymous source; the ME/CFS patient who did well on C60 is a friend of a PR forum member, and provided a long and detailed account of his experience to this member, which I read. No different to any other accounts of improvements via a drug or supplement that you see posted on this forum.
     
    Last edited: Jan 2, 2019
    Mary, raghav, sb4 and 2 others like this.
  20. raghav

    raghav Senior Member

    Messages:
    385
    Likes:
    378
    India
    @Hip Did that person say how long it took for him to see improvements and at what dosage ?
     

See more popular forum discussions.

Share This Page