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23andme comparison for people with ME?

Discussion in 'Genetic Testing and SNPs' started by snowathlete, Nov 1, 2012.

  1. kday

    kday Senior Member

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    The first step is to ask for a ME/CFS group in 23andMe that would be accessible here: https://www.23andme.com/you/community/

    Enough inquiries, and I'm sure they'll add a group. If they see enough interest, they may do research.

    Their biggest group is Parkinson's disease right now, and they only have 293 members. If they were to set up a group, I would bet we could easily get more members than that.
     
    Gamboa, Anteah, Sea and 2 others like this.
  2. roxie60

    roxie60 Senior Member

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    Central Illinois, USA
    Sounds like a good idea to me but mayb seem too political for them. Parkinson's is an 'accepted' disease, ours woulless so, not sure they be willing to enter the CFS/ME/MCS maze.....I hope they do
     
  3. Anteah

    Anteah Senior Member

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    Las Vegas, Nevada
    Martiz, thank you so much for your offer to help. I've had an unexpected relapse of some of my symptoms and have been away from the forum lately. Have been trying to recover, but it's a slow go. I am still very much interested in pursuing the project, but it may be some time before I am able to regain my previous function. Time will tell though. If I am ever able to get it off the ground I will make sure to keep you in mind and contact you promptly.

    SickofSickness, I agree with you. The 23andme sure does have the means. Perhaps petition is in order. Seeing that I may not be able to get to it in appropriate amount of time, trying to at least create the petition and start collecting signatures may be a more realistic goal for now. Thank you for a wonderful idea and I also hope you would be able to help with this. I've spent last month and a half recovering from a bout of bipolar depression and it will take me few more months to get to where I feel semi-normal. It always does. When It happens I will make sure to create a petition. I will, however, be looking for someone to help with proofreading as English is my second language. Hope you can help.

    Besides methylation and detoxification pathways I also wanted to zero in on the genes responsible for RNase and other enzymes responsible for viral and candida control (there are many), as high viral load and abnormal immune response as well as chronic candidiasis and susceptibility to fungal infections is something that we all seem to share to some degree. I figured its worth looking at. Hopefully we can suggest that area of research to 23andme in the petition. If you know of any others that would be of interest to you that would be great too. The more the merrier really, as it is clearly a multifaceted issue, as we all seem to be located on different points of the multidimensional spectrum in terms of the severity of our (similar) symptoms. I am sure the symptomology is representive of our genetic picture.

    Again, thank you guys for wonderful ideas and being interested in the subject. Hopefully with joint effort we will get some answers one way of the other.

    Kday, yes, totally! What a great suggestion! I am not sure how I just missed your post. We should definitely start a group. I can hardly believe that it has not been already started!
     
  4. searcher

    searcher

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    For now, I think the easiest way for us to share our SNPs is to upload your 23andme export to opensnp.org. You can create an alias to make sure that your data can't be associated with you (and you can be creative answering phenotype questions that are irrelevant to research, like your nose size.)
    If you decide to upload your data, then please make sure to answer the question "Have you been diagnosed with Chronic Fatigue Syndrome?" at https://opensnp.org/phenotypes/178#description I created the question with an alias unlinked to my actual profile to ensure some privacy.
    Then any of us (or a researcher) can download all the SNPs for people who have answered the question with "yes."
    Please let me know if you have any questions about these steps. It won't lead to publishable research since there is no way to confirm users have really gotten the diagnosis, but if enough of us upload the data I think we could test a lot of hypotheses. You can answer a lot of other phenotype questions, so you could even answer random questions like "are people who upload their data to opensnp.org and think cilantro tastes like soap more likely to have CFS than the average person who uploaded their data?" But just being able to look at SNPs is the key thing.

    I also second kday 's suggestion that we ask 23andme to create a CFS community.
     
    RosieBee and Anteah like this.
  5. kday

    kday Senior Member

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    RosieBee and Anteah like this.
  6. Anteah

    Anteah Senior Member

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    Las Vegas, Nevada
    Ditto, just did it too. Thanks for providing a link, makes it much easier in my state. I think all of us who is interested in it should contact them and request it though. The more requests the faster they should respond. At least hoping that's the case.
     
  7. Gamboa

    Gamboa Senior Member

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    I just sent a request to them. I just got my results back on Sunday and am just starting to figure the methylation stuff out.
     
  8. RosieBee

    RosieBee

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    Just sent a request too. I think it is a great initiative now that a significant number of people are getting information about their genome.
     
  9. Waverunner

    Waverunner Senior Member

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    I love the idea of sharing genetic information among PWCs and I'm sure, that as soon as we have full genome sequencing, we will get a whole load of new viable information. I'm not sure however, if SNPs are enough. I don't know if it was George Church or another scientist but he said that only looking at SNPs is like buying a book and only reading a word per page and then trying to draw a conclusion.

    Right now, the first companies are about to offer full genome sequencing for 1000 dollars. Nanopores hopefully will further erode the price. 23andme offered full exome sequencing in 2011 but removed the service from their page. There are rumors, that they try to implement full genome sequencing in the next one or two years. This could mark a breakthrough point for CFS.
     
    Sea and leela like this.
  10. RosieBee

    RosieBee

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    I heard back from my request for a ME/CFS group on the communities pages of 23andMe. If 23andMe see a lot of ME/CFS interest on their posts pages, then they would consider creating a group. So the answer is for us to pass the word around and get lots of people posting:-
    Thank you for your email. I have checked with our customer service team, and unfortunately they are not creating new groups at this time. I would suggest creating a post under the general Health group. If we can see that there are a lot of people also interested in a separate group for CFS, we may be able to create a new group. I do think that this would be a great group to have on 23andMe as many people suffer from CFS or CFS-like symptoms, and the fact that this condition is not very well understood certainly lends itself to being a great discussion group. However, as one of my colleagues explained, our groups are currently based off of health and ancestry reports, and because we do not have a health report for CFS, we do not have a corresponding group.
    Best regards,
    Samara M.
    23andMe Research Team
    ---------
     
    ktred likes this.
  11. ktred

    ktred

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    This is such a great idea. I'm going to send a request as well to 23andme regarding adding a CFS community. As someone else notated, I was really surprised that they didn't flag my homozygous MTHFR C699 as a potential health problem since it's probably the most well studed snp in the meythlation cycle.
     
    SickOfSickness likes this.

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