1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
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Lessons from ME/CFS: Finding Meaning in the Suffering
If you're aware of my previous articles here at Phoenix Rising then it's pretty clear that I don't generally spend my time musing upon the philosophy of the disease. I find it better to spend my time reading research and trying my best to break it down to its core elements and write...
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Structuring Genetic and Treatment Response Data

Discussion in 'Advocacy Projects' started by Skyline, Dec 5, 2012.

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Are you interested in participating in this project?

  1. Yes

    66.7%
  2. I don't know

    33.3%
  3. No

    0 vote(s)
    0.0%
  1. Skyline

    Skyline Senior Member

    Messages:
    125
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    Bangkok, Thailand
    Hi all,

    I am a recent user of these forums and have found them priceless to kickstart my journey back to optimum health - there are some amazing successes here and I am fortunate to have come down with CFS/ ME this year rather than earlier - as you have done so much work towards the answers we need.

    It is clear reading through the forums that we are linked by a common condition, but treatment response is very variable. This must be very frustrating for most people especially those who are sicker with less energy - and who may give up on experimenting before they find the keys to themselves.
    My own belief is that we cannot compare treatments without understanding the different genetic backgrounds of each of us (as a minimum). We can make much faster progress if we find these keys to why treatment response varies so much between us.

    So I am advocating that we pool our genetic data and a structured comparison of our treatment and response data together to benefit us all. With the number of people that have already done their 23andme or yasko nutrigenomic tests we should have a good pool to start from.

    Love to hear your thoughts on this and who would be willing to participate.

    In practical terms I have found a new tool that could help us with this: Genomera.com. It is a free project management tool that is designed for structuring of a study, uploading and comparison of genetic data and treatment/ response data.

    The steps in this project would be:
    1. Setting up the study with a good design that covers the various treatments so that it can lead to answers
    2. Getting people from pheonixrising with existing 23andme genetic data to upload it and fill in their treatment + responses
    3. Reaching out to other forums and using genomera to get more people involved (i.e. more data)
    4. Helping others to get genetic tests done (this would involve providing information to make it straightforward and potentially funding for those in need)
    5. Running experiments on 'the latest treatments' as a group to get data comparing genetic responses.

    The vision behind this is to create a resource that will enable us to move forward a lot quicker by being able to see genetic patterns for treatments a lot quicker and have better data to back up recommendations to each other.

    I myself will be getting both Yasko's and 23andme tests done this month and will contribute the data as soon as I have it.

    P.s. I'm happy to do the 'dogwork' required as I am more functional and have greater capacity than most (have been declining over last 8 months, but still have energy/ work ability and seem to have managed to stabilize myself with what I have learned so far). I am financially stable also so I can dedicate myself virtually full time to working on this. I'd also love to work on this as a team with others that are interested.
    Little Bluestem likes this.

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