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Channel 4 News UK want to know why people have taken 23andme test and what benefits they got.

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by veganmua, Dec 15, 2014.

  1. veganmua

    veganmua Senior Member

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    On the 23andme facebook page, on 3rd December, Amy Gardner wrote
    I want to explain to her my reasons (methylation and detox genes, to know which supplements I should take to improve my CFS). I get kind of bogged down with the science of it, and want to explain it in a concise way without being too in depth or oversimplifying it. Plus I only sort of know things about my own mutations, so I don't want to exclude important info just because it doesn't apply to me. I was thinking of using a blog post I wrote a while ago as a starting post to send to her. What do you think? (Obviously the part about veganism isn't relevant.)

    What are some important things you think I should mention?
     
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  2. Gingergrrl

    Gingergrrl Senior Member

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    @veganmua I am not going to contact her but I am not sure that I personally got any benefits from doing 23andMe. I think it is a great test and really benefits those with a scientific background or those who can take the info to a geneticist or methylation specialist to interpret.

    But in my case, without the science background, I found the info incredibly confusing and was not able to apply it to anything practical. I learned that I am compound heterozygous on the MTHFR mutations but then I was not able to tolerate the methylation supplements and that is as far as I got. I wish I could have done something more with the info but felt like I am not smart enough which was frustrating.

    There was nothing from the info that told me which other supplements to take. I had hoped there would be some kind of print out you would get with your results with recommendations but that did not happen. I still think it is a great test for those with stronger science backgrounds. We used genetic genie and one other site to plug in the info but I still felt in the dark as to what to do next!
     
  3. taniaaust1

    taniaaust1 Senior Member

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    Its a pity gingergrrl you couldnt do anything about your compound heterozygous mutation. I found that treating my MTHFR homo mutation was one of only two things Ive found in over 17 years (the other was undenatured whey but I become intollerant to it within weeks) which seemed to be helping my health in a general way.

    Sooner or later you may find a specialist in who can use your DNA in your case or may want to check something which is there in it. There has been a couple of things since I got mine done in which I went back and looked to see if I had those mutations or not.

    Did genetic genie tell you anything to avoid or anything to watch out which can cause you issues? (I found out throu the detox area of it why I react to so many different supplements. Its a huge drug family Im reacting too! I also found out with one of my other mutations that a supplement which everyone tends to think as good, in my case may cause me issues (fish oil I think it was).

    I also found Valentijns program very helpful (as it can be very hard to work out what is normal and what isnt and with that program, it shows all the rarer mutations you have from the raw DNA data from the 23andME results). Using that, I could see what mutations probably caused issues Ive had in my life or things like my child having jaundice as a baby when I looked up what the mutations I had do.

    I even found I had a double copy of that mutation in which causes children to food binge (my child used to raid the fridge in the middle of the night, I had trouble keeping her out of the fridge even thou she certainly was fed well and was overweight. I didnt allow my kids to have junk food, she just way over ate).

    There is also other sites online in which one can run the raw data from genetic genie throu often for an extremely small fee (one shows if a person has certain immune system mutations. I am going to run mine throu that one day.. I forgot what its called now).
     
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  4. SickOfSickness

    SickOfSickness Senior Member

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    This is a good one that costs $5, probably the site you meant.
    https://promethease.com/ondemand

    I think Interpretome is free.
    http://esquilax.stanford.edu/
     
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  5. taniaaust1

    taniaaust1 Senior Member

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  6. veganmua

    veganmua Senior Member

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    @Gingergrrl I'm sorry you haven't had much luck with methylation. I put my results into nutrahacker - they give you little explanations and suggestions of what supplements to take. I used that and asked questions on here constantly - I know @caledonia and @Freddd were very helpful to me. I know exactly what you mean when you say you felt 'not smart enough', that was how I felt, too. What are your mutations? Maybe we can have a look and work it out together.
    @taniaaust1 what is Valentijns program?

    I feel like this is why I should speak to the Channel 4 lady about it, the more awareness we raise, the more research is likely to be done. Hopefully with more research we will get to a point where you can get genetic testing done through your doctor/specialist and get prescribed the correct supplements that will help you.

    A few months ago a was passed over to a new psychiatrist, and while he asked me many questions about my depression, he seemed much more interested in my chronic fatigue syndrome. He was much more open minded than my old doctor, so I told him everything I knew about methylation, told him all the supplements I was taking. It turns out he is also a CFS researcher, and did a lot of work at Cardiff university and I think King's College London. He knew exactly what I was talking about - I gave him my results from genetic genie and nutrahacker. He is writing a paper on methylation in CFS, and is using me as a case study. This is an NHS doctor! So there is definitely real hope that this will become a standard treatment for CFS.
     
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  7. ukxmrv

    ukxmrv Senior Member

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    Are you sure he doesn't have "unhelpful ideas" about CFS that would create a bad spin instead?

    My alarm bells go off when I see King College (Simon Wessley) and Cardiff Uni (Unum and Aylward)


    http://mikesivier.wordpress.com/201...-for-the-biopsychosocial-saga/mansel_aylward/
     
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  8. veganmua

    veganmua Senior Member

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    No, he believes it is a biological condition and is seeking to prove it. He was involved in creating the first biobank of tissue and blood samples from CFS patients at Cardiff. He believes it is caused by the DNA mutations.
     
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  9. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    Try to find out a bit about any journalist before submitting anything to them. Some have misused info given to them, made fun of things, etc.

    Journalists are notorious for misleading participants/contributors about what they are planning to do.
     
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  10. Gingergrrl

    Gingergrrl Senior Member

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    Thank you to everyone who gave me info about 23andMe and I am going to respond to it in the future when I have a little bit more time. I am still hopeful that I will get info from it that can benefit me in the future.
     
  11. Hip

    Hip Senior Member

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    Is there is actually any good scientific evidence (or even anecdotal evidence) to justify getting tested by 23andme in order to optimize your methylation? I don't doubt that increasing methylation can help some ME/CFS patients (and this PR poll certainly seems to suggest this).

    But let's assume you are trying out Rich Van K's simplified methylation protocol (his last revision of it), which by including methylfolate and folinic acid already accommodates for certain SNP mutations (such as the MTHFR C677T mutation thats hampers conversion of folic acid to methylfolate). Are there actually any benefits to knowing your SNP mutations via 23andme testing that could lead to further improvements over and above the simplified methylation protocol?

    I have not found one person on this forum who failed to get results from the simplified methylation protocol, but with the help of the info from 23andme testing, were then able to get their methylation going, which manifested as improvements in their ME/CFS.



    It certainly is very interesting to see your 23andme results, and I had my genes tested by 23andme; however, I think as a tool to help ME/CFS patients, I have not seen any evidence that these 23andme results are of use for improving methylation (over and above the simplified methylation protocol) and thereby treating ME/CFS.

    So I don't think anyone should write to this journalist and tell them that 23andme results are helpful to ME/CFS patients to optimize methylation, because there appears to be no evidence that this is the case.
     
    Last edited: Dec 16, 2014
  12. Freddd

    Freddd Senior Member

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    Hi Hip,

    I don't think that the proper questions are being asked and they are not ones that are necessarily obvious to anybody. One of my questions is what is the array of SNPs that are present for the various types of paradoxical folate deficiency (partial methylation block). The answers would be able to identify those with folic acid problems, folinic acid problems and veggie folates problems and to what degree? Who are the people that need a specific form of l-carnitine as a vitamin? What is the SNP profile of those who have trouble having enough cobalamin in the cerebral spinal fluid such as in CFS, FMS, MS, Parkinson's, ALS, Alzheimer's, Supra Nuclear Palsy. If these items can be identified early I suspect that these diseases are largely preventable. There are other distinguishing genes or cofactors too but those are not identified.

    So far I have not seen anybody peg their nutritional needs by these tests. I've also seen people scared away from the things that have a chance of working and taking things that may damage them based on various interpretations. Nobody has been able to heal themselves by use of this information of which I am aware. It looks like people chasing phantoms that aren't clear enough really identify them. The answers may be there but it may take a different way of looking at the data.

    I also appear to be the only person that believes that a cure for FMS and CFS (not the underlying genetics changed, but the inability to use certain forms of various nutrients, some of those are 100% so no "abnormal" SNPs) by correcting the nutritional factors. It isn't simple and there is no SIMPLIFIED program that can do it at the present.

    Part of the problem is there things people identify in themselves as CFS/FMS/ME or docs do so. The problem is that too many different causes are clumped together. I've talked to a lot of people. While most of those I run into here has what would be expected. A few people, who are certainly sick and bear a similarity to CFS/FMS/ME but I sure can't recognize what they have. Just in my own diagnosis I have had wrong diagnoses and useless treatments based on those 100%of the time. However, the rest of this should be a different post.
     
    Last edited: Dec 17, 2014
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  13. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    You're not the only one who believes that ME/CFS might be successfully treated nutritionally, @Freddd. I do too, and I think that there are quite a lot of others.

    I'm not certain about it, but as there is nothing else on offer where I am, and I am not willing to risk taking powerful drugs in a clinical trial, it's what I am trying. And also, I don't think that 'cure' may be the right word, as the supplements/special diets may need to be lifelong. The symptoms might be curable.

    I think that there are several kinds of ME/CFS - for example I believe that you had high liver enzymes, whereas I haven't. So we will need different protocols.

    I can't afford all the testing and supplements that you and some others recommend, so am trying to find my own way by putting various bits of info together.

    At one point I had improved dramatically, but as so many others have found, improvement is fragile and things regress again. It's as though the body (not the mind!) doesn't want to be well. But really it is perhaps just being thrown into different imbalances.

    Sorry - going off-topic.

    I did have some free genetic testing on a smaller number of SNPs than 23andME do, as I have discussed in a few gene threads. The recommendations are things that I have actually done before looking at them, and which have improved things.
     
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  14. Freddd

    Freddd Senior Member

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    Hi MeSci,

    I have attempted to get people to discuss what "cured", "healed" and "recovered" mean in terms of FSM/ME/CFS or what other words would be used in their place. Nobody who posted did anything to advance the discussion but instead trashed the idea that such healing, recovery or cure could be done intentionally and knowingly and predictably. So I'm glad to hear that somebody else thinks it is possible.

    I distinguish between the process and the damage. So, I am "cured" of FMS and CFS but SubAcute Combined Degeneration which is the damage done. I have normal exercise response. I can walk 5 miles a day with 2000 feet vertical drop up and down and can doo it every day if I keep it up. With exercise I increase aerobic conditioning. I don't have fibro muscles, fibro muscle pain, 18 sore spots, etc etc etc. I don't have the symptoms of CFS and FMS or congestive heart failure either. I sleep well. I tolerate exercise. I would bet I can out walk anybody with CFS/FMS. I have symptoms left of a fractured back, damaged disks and damaged nerves. Those are no CFS/FMS symptoms. I have a degenerative CNS condition, SACD, the main differences from MS are that I have a history of bodily B12 deficiency and my neurological symptoms are bilateral. Unless you want to define SACD, MS, Supra Nuclear Palsy, Parkinson's and ALS as advanced FMS and CFS then I don't have the symptoms and haven't for 5 years. Glutathione, causes the symptoms to come back. To get all the way back to the condition I was in would probably take 5 years on glutathione (selective partial induced starvation) to get back to a similar condition of complete collapse The symptoms of CFS/FMS/ME are 100% contained within the symptoms of partial methylation block, methyltrap and partial ATP block. If you call the disease FMS/CFS/ME as the symptoms with which it is defined I'm cured. If you call the potential of suffering from MeCbl, AdoCbl, l-methylfolate and carnitine deficiencies from taking folic acid, CyCbl and HyCbl instead of the natural vitamins then everybody has FMS/CFS all the time. Except for the one minor niche of natural veggie folate intolerance that caused the natural incidence of these diseases 60+ years ago the rest are suffering from a man made set of deficiency diseases.

    My doctor of the last 12 years is retiring from private practice. I have seen 2 new docs on the past month. And now we have trouble right here in river city, my friends. I choose my new doctor because she works with people with FMS and CFS. After my exam she is wondering why I ever came to her and is talking about doing a spinal draw. She didn't watch my recovery the whole way as my previous doc did. I also had a visit with an HMO MD who was reviewing my doc (that is familiar, the consultants I was with for decades started that back in he late 70s). She thought I was 10 years younger than I am. And again, the ONLY problems she found was a need to lose another 20 pounds and was astonished to hear of my 85 pound water loss, 40 pound fat loss and 50 pound muscle gain. Both of these docs, one an internist both say "Nope, no CFS, no FMS, some neurological problem. Have your disks deteriorated further?" Somehow I got from a couldn't walk more than 50 feet and everything that goes with CFS/FMS to healthier than usual for my age with some neurological situations in the last 11 years. What is the word that should be used for the clearing out 175 symptoms and returning to healthy normal functioning? A deficiency disease isn't an infective disease. There is no CFS/FMS virus. It can leave damage behind but those are not the disease process either. I have used the words "cured", "healed" and "recovered".

    And also, I don't think that 'cure' may be the right word, as the supplements/special diets may need to be lifelong.

    So how does one CURE a deficiency disease? Being unable to use folic acid well is NORMAL. Our bodies never evolved to use the fake vitamin, folic acid. The cure is to take the natural active in all humans folate form, l-methylfolate. We have to eat adequate nutrition all our lives, of course. Diets are lifelong. Obesity is generally cured by eating a suitable diet. An addiction problem to food is a different problem to deal with. Starving to death is a deficiency of food disease. The cure is to eat enough every day for life. I also had to discover that I can't drink milk or eat cheese. That too is very normal for adults in this world. So I don't understand why getting the needed nutrients for an entire lifetime is an argument against being healed. Unless one becomes a breatharian daily nutrition is the fate of us all.
     
    Last edited: Dec 17, 2014
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  15. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    Why does a deficiency have to be treated lifelong with supplements?

    Can the right nutrition not be obtained through diet, for example once gut problems impairing absorption (e.g. leaky gut/dysbiosis) have been fixed?

    Are all the lifelong supplements actually nutrients which should be obtainable from the diet, or could some be better described as natural medications?
     
  16. Freddd

    Freddd Senior Member

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    Hi MeSci,

    The dietary route would seem like a good path. There are a few problems. There are all those fortified with CyCbl and folic acid cereals, white flour products, beverages etc. It is difficult to avoid everything with these pseudo vitamins. A study of nutrients in beef liver few years ago found that the amount of B12 in liver has decreased by 95% in the past 50 years. I happen to have a problem with veggie folates, the might as well be folic acid as far as my body is concerned. Because of my genes I would have to eat a basically a high meat diet. When I was a pro ski patrolman working outside in -40 degree weather and skiing 40,000 feet of vertical a day. I ate about 5000 calories a day including almost 2 pounds of meat. I healed a lot and got healthier than I had ever been. I eat 1500 calories a day, 4 to 5 ounces of meat and an egg, with veggies and fruits, to maintain weight. I need 15mg a day of Metafolin to not have deficiency symptoms, which I had all my life. I have scars all over the corners of my mouth from lifelong cheilitis. It didn't even go away during that big meat period. I did a desiccated liver trial, 100x350mg tablets. That is equivalent about a pound of wet liver a day with all the fat and connective tissues etc removed. It worked but not fast and not well enough. However, I might have prevented all my problems had I continued it.

    Insufficient mfolate activity means more rapid loss of B12

    Another problem is the l-carnitine. It has been argued back and forth whether it is a vitamin or not. Since some people can synthesize all the required types in their own body they decided against doing so. However, some of us need the actual form used (LCF for about 90% with CFS/FMS and ALCAR for 10%, freebase carnitine 100%) being directly absorbed on an empty stomach to be effective. Getting the amino acids into the body isn't enough for those that need it as a vitamin.

    B12 itself is the most complicated and easily damaged vitamin absorption and utilization pathways. The are 3 trans (transport) cobalamins for each stage of the process as well as THE Intrinsic Factor (started out as "an intrinsic factor). The whole functioning of our body is defined by an equilibrium of b12 in the body with 3-6mcg of input and loss per day. If anything doesn't work properly the equilibrium is lost and a person is SOL.

    There is no evidence that the entero hepatic recirculation of B12 ever works properly again once it is disrupted. People never return to the original state, if they ever had it. I have been deficient since infancy probably because of poor veggie folate utilization. Then I, and all of us with CSF/FMS, have a presumed genetic condition that prevents b12 from getting into the brain and cord adequately.

    Eating a “normal” nutritious diet was NEVER adequate for me in the first place. Why would you expect it to become so after a stint of augmented nutrition? However, the definition of having CFS/FMS isn’t about the genes we have. It is about the results of not nutritionally compensating for our genes.

    The leaky gut is a RESULT of these deficiencies, not the cause. The entire gut, epithelial tissue all, is subject to rapid deterioration and lesions from mouth to anus from lack of folate and b12. So fixing the leaky gut puts a person back to where they were before the deficiency caused damage. It doesn’t change the fundamentals that caused it in the first place.

    which should be obtainable from the diet,

    We don’t have control of what is. We can say all the “should be” situations we want. That doesn’t make it so. Perhaps a more accurate statement of it is “Wouldn’t it be nice if ...”

    or could some be better described as natural medications?

    And turn it over to the FDA as prescription only at 10x the price? That would kill me. I want to be able to give myself the nutrition my body naturally needs At a price I can afford under my control. A nursing home would be a sentence of death as I would no longer be in control. Right now a hospital would kill me if they take away the b12 and folate I require for survival.
     
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  17. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    A question that follows is probably unanswerable, at least at present, but definitely relevant to the thread.

    Do some SNPs mean that deficiency and/or consequent illness are inevitable? Or is it possible that they could ALL be dealt with through an appropriate diet?

    I take your point that illness, especially long-term illness, may cause permanent damage. Maybe that damage means that a complete cure isn't possible.

    Re leaky gut, my own view is that there is an initial predisposition, perhaps due to SNPs, and that the abnormality is triggered by, for example, infection, vaccination, 'wrong' diet, etc.

    But maybe sometimes it can be healed permanently as long as one stays on the right diet, and that then the person can absorb/produce all the necessary nutrients. And maybe sometimes it can't.

    I wasn't suggesting that supplements should fall under the auspices of Big Pharma, just talking about how we should think about them. Maybe one person's nutrient is another person's medication. And maybe there is no clear difference, as in 'Let Food be Thy Medicine...'

    I too dread not having control of what I eat or take. I only have to make a small 'mistake' or deliberate change for my gut to be messed up again, with all the usual consequences. The first that tend to appear are dermatitis and insomnia.
     
  18. brenda

    brenda Senior Member

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    Freddd wrote "Eating a “normal” nutritious diet was NEVER adequate for me in the first place. Why would you expect it to become so after a stint of augmented nutrition? However, the definition of having CFS/FMS isn’t about the genes we have. It is about the results of not nutritionally compensating for our genes.

    The leaky gut is a RESULT of these deficiencies, not the cause. The entire gut, epithelial tissue all, is subject to rapid deterioration and lesions from mouth to anus from lack of folate and b12. So fixing the leaky gut puts a person back to where they were before the deficiency caused damage. It doesn’t change the fundamentals that caused it in the first place.

    which should be obtainable from the diet,
    We don’t have control of what is. We can say all the “should be” situations we want. That doesn’t make it so. Perhaps a more accurate statement of it is “Wouldn’t it be nice if ...”

    or could some be better described as natural medications?
    And turn it over to the FDA as prescription only at 10x the price? That would kill me. I want to be able to give myself the nutrition my body naturally needs At a price I can afford under my control. A nursing home would be a sentence of death as I would no longer be in control. Right now a hospital would kill me if they take away the b12 and folate I require for survival.
    "

    I don't go along with this either/or reasoning: either the typical diet albeit on the healthier side, plus supplements or hospital/severe sickness. There is a third way which I believe is much safer, and that is to add to a pure organic diet, highly nutritious raw vegan foods or superfoods. I am talking about wheatgrass powder, chia seeds, macca powder, camu camu and many more dedydrated at very low temperatures to preserve enzymes, which can be added to freshly squeezed juices or mixed with water, or in the case of things like dehydrated raw sprouted buckwheat which is used as a flour to make raw vegan cakes in a dehydrator for example, and the taste is very good. There are stories of people healing from serious illness with a raw vegan diet but I am eating meat and eggs too as I think that I need them with my snp's and I cannot take too many green veggies at once.

    Supplements are increasingly being contaminated by additives as the pharma companies are buying out small companies making supplements and how long will it be before certain ones cannot be obtained? I am already having problems finding riboflavin without mag. stearate. I am sure that the cost of these supplements cannot be less than eating real foods including these superfoods and it soon becomes easy to organise.

    Using this natural source of nutrition gives the body the greatest chance of healing, and yes I believe that cfs/me can be healed this way. It is all about healing the cell wall so that glucose can enter the cells and take in the nutrients needed, most of which are produced in the gut. It does take time and dedication and I have struggled to get everything in line which has included emotional and spiritual healing.

    Gluten dairy alcohol and sugar are big no no's if we want to heal, for most I would guess. And this is true healing, not bypassing snp's with high dose nutrients which to my mind is not that much better than medications. The dependency is still there. Well I hope that i can do it this time, I am going full throttle though still using small amounts of certain things when needed like Mg. when cramps occur but planning to leave them out as symptoms disappear and my cell walls repair so that things can enter into the cells.
     
  19. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    Just a couple of small points, @brenda -

    Preserving enzymes in food will probably not help as you will just break down the enzymes in the stomach along with other proteins. AFAIK the only way to get enzymes further down in the gut is to take them as enteric-coated supplements.

    Animals don't have cell walls, unlike plants, fungi and bacteria. We have cell membranes.

    Some of the dietary stuff you cite is probably good, but not sure about all of it.
     
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  20. brenda

    brenda Senior Member

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    Well I might have a few details in science wrong, not sure about the enzyme bit though but anyway, raw vegans on you tube are amazing compared with normal vegans who are often very unhealthy.
     

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