FM research

Discussion in 'Fibromyalgia Main Forum' started by JJMMRJ, Jun 29, 2008.


    JJMMRJ New Member

    Hi everyone,

    If you have read some of my posts b4, then u may remember that I am a cell & molecular bio major and chem minor currently, but have struggled w/ FM and lots of fatigue for th past 10 years (since I was 11). Recently I have been so fed up w/ all of the hardships I've had to deal w/ since having FM. Long periods to diagnose, a majority of drs not believing/understanding etc.. (I/m sure all of you could greatly extend this list, hahah).

    While at a personalized medicine conference, I saw this amazing presentation by the founder/pres of 23andMe, and i felt like their company could really help the fibro community. At the reception, I got the nerves to speak with her (I wasn't sure if she'd be interested in an idea from an undergrad student) and we had a great convo. She wanted me to contact her, which I did, and she put me in contact w/ their bus dev manager. This woman was so welcoming and truly seemed interested in learning about my FM experience, asked what I thought they could do to help the FM community, and what I feel are the common problems that FM patients have to deal w/. We had a great 90 min convo over coffee and I loved how her and the company were all about helping ppl.

    I'm very interested in helping them out start up a fibro community, but I didn't want to put in all the effort to set it up if not to many of us were interested in getting involved in furthering FM research. The jist of it (and if ppl are interested I'll go more into the biology aspect of it) is that you set up an account, spit in a cup, and they genotype all 23 of your chromosomes (this is diff than a full on sequencing, but it is still very extensive). The only prob is that it is a lil expensive $999, but I feel like the medical community is not doing enough to help us. This way we could be proactive in helping research that could help us. I told them some ideas I had that extended off of what their company already does, which would allow the genotypes of all FM members that registered to be compared. My idea is, is that if we get enough comparisons, then maybe a region on the chromosome could be narrowed down that causes FM (I feel that there is a genetic predisposition). My head is swirling with ideas for other research to help out. It's cool, cuz I feel like I'm in a position to make a diff in this and step in to get ppl to do research since I do research myself and know the techniques and how to design experiments.

    It's hard b/c I get so motivated sometimes to get involved in stuff like this, but then the next day I'm so exhausted/in pain that all I want to do is lay in bed. I feel like it is too much of a dream to do research for a career since my health can be unstable, but I've made it this far, and I'm used to feeling like crap all the time, even while on meds.

    Let me know what you guys think. I'll keep you posted on what I hear from 23andMe (you can check out info about them at or just google them).

    Thanks for the comments everyone have been posting, b/c they have given me the strength/motivation to keep doing what I do.


    P.s. sorry for the essay, lol
  2. sleepyinlalaland

    sleepyinlalaland New Member

    I think it's extremely interesting.

    Unfortunaty I and probably most here are also in the income bracket least able to afford it.

    But some CAN and I'm glad you posted, I hope some will elect to do this...surely if enough people do, it could rovide some interesting results. I know I would, if it were affordable for me. I hope a discovery is in the pretty-near future that will help you and all the others like you to get better and realize their potential.

    Thanks for posting and for doing what you can.

    [This Message was Edited on 06/29/2008]

    JJMMRJ New Member

    Yea, unfortunately it's so expensive, but when you look at the technology they use, it's realistic. They use top of the line tools and chemicals, and they genotype more than 1/2 million of your SNPs (single nucleotide polymorphisms). That's a lot of work!!!

    I'm actually, possibly thinking of doing my own research based on intense surveys to find correlations between FM patients. I know there are a lot out there already, but they seem to be generic, like this many have hip pain. Since I know how it is to have FM, I could create a more thorough survey.

    I dunno.... Maybe it wouldn't be helpful. I just want to do something to help w/ FM research!!!
  4. sweetbeatlvr

    sweetbeatlvr New Member

    what wonderful ideas.

    i don't think they sound too far fetched at all.

    as great as that test sounds, it is a bit more than i think most of us could afford.

    you sound like a very smart girl, and sound like you could really help people.

    i can totally understand how this DD could halt our dreams though, when all we want to do is lie down.

    our minds are extremely powerful though, and i believe when we want to do something, we can find a way.

    i say, never give up on something you believe in.

    thankyou so much for mustering up the courage to speak to that woman. because of you, we may be one step closer to finding out what causes this horrible illness.