- Messages
- 26
Hi all,
It’s been some time since I’ve posted on the forum, but not to say I haven’t been here at PR – in fact I have been checking in on what has been going on, and I was particularly sad to hear about Richvank (my condolences to his family and friends).
I’ve been doing a lot of reading, thinking and starting to do a bit of writing, and when reading many of the posts and comments here at PR, I’ve been struck by the hard work many of you put into making sense of your genetic information and methylation issues – given your struggles in the first place with ME/CFS.
The way you work with the genetic information, with the scientific literature and available tools and programs (not least Mindy’s Google spreadsheet and kday’s Genetic Genie), and also the way you support each other, I find quite extraordinary and I am amazed by your commitment and not least, your patience – an essential quality to have, it seems, when it comes to coping with ME/CFS. These processes of coping and processes of caring, I see as essential to the PR community.
To remind you who I am (and to newcomers), I am a PhD student at Lancaster University in the UK doing research into how people make sense of their genetic data. Mark has given me permission to observe the forum, but as I mention in this post:
http://forums.phoenixrising.me/inde...ter-university-at-phoenix-rising-forum.18946/
- if any of you feel uncomfortable about my presence and do not want me to include your comments in my field data, please contact me.
I have a lot of questions, and I am hoping you can help me answer some of them.
I have a question about the way you keep track of your data, treatment and effect of treatment. It seems to be quite a big job taking on the task of figuring out a treatment protocol based on one’s 23andMe data. I was wondering whether any of you have come up with a system of keeping track of your data, both in terms of which SNPs are relevant for you and the suggested supplements to take and in terms of the effects of the treatment. I understand that Amy Yasko’s service will provide a treatment protocol, but what if you are doing the 23andMe test? There is mentioning of the heartfixer website, but do you have a specific way of going about using the site in relation to treatment protocols and also keeping track of the effect of the treatment?
I was also hoping you would share your thoughts on some of my observations. A lot of the rhetoric on 23andMe’s website is about prevention and the future. Although the future is also important, it seems that parts of the PR community work with another kind of temporality – and here I am thinking of the past (and the present). It seems you are involved in some form of “repair” and want to restore what used to be. When talking about how you are doing, some are referring to a percentage of your former self, e.g. 80% of my former self. I think it’s important to point out this concern for the past in an age where discourses of the future, prevention and prediction take central stage. I very much welcome your thoughts on this.
All the best,
Mette
It’s been some time since I’ve posted on the forum, but not to say I haven’t been here at PR – in fact I have been checking in on what has been going on, and I was particularly sad to hear about Richvank (my condolences to his family and friends).
I’ve been doing a lot of reading, thinking and starting to do a bit of writing, and when reading many of the posts and comments here at PR, I’ve been struck by the hard work many of you put into making sense of your genetic information and methylation issues – given your struggles in the first place with ME/CFS.
The way you work with the genetic information, with the scientific literature and available tools and programs (not least Mindy’s Google spreadsheet and kday’s Genetic Genie), and also the way you support each other, I find quite extraordinary and I am amazed by your commitment and not least, your patience – an essential quality to have, it seems, when it comes to coping with ME/CFS. These processes of coping and processes of caring, I see as essential to the PR community.
To remind you who I am (and to newcomers), I am a PhD student at Lancaster University in the UK doing research into how people make sense of their genetic data. Mark has given me permission to observe the forum, but as I mention in this post:
http://forums.phoenixrising.me/inde...ter-university-at-phoenix-rising-forum.18946/
- if any of you feel uncomfortable about my presence and do not want me to include your comments in my field data, please contact me.
I have a lot of questions, and I am hoping you can help me answer some of them.
I have a question about the way you keep track of your data, treatment and effect of treatment. It seems to be quite a big job taking on the task of figuring out a treatment protocol based on one’s 23andMe data. I was wondering whether any of you have come up with a system of keeping track of your data, both in terms of which SNPs are relevant for you and the suggested supplements to take and in terms of the effects of the treatment. I understand that Amy Yasko’s service will provide a treatment protocol, but what if you are doing the 23andMe test? There is mentioning of the heartfixer website, but do you have a specific way of going about using the site in relation to treatment protocols and also keeping track of the effect of the treatment?
I was also hoping you would share your thoughts on some of my observations. A lot of the rhetoric on 23andMe’s website is about prevention and the future. Although the future is also important, it seems that parts of the PR community work with another kind of temporality – and here I am thinking of the past (and the present). It seems you are involved in some form of “repair” and want to restore what used to be. When talking about how you are doing, some are referring to a percentage of your former self, e.g. 80% of my former self. I think it’s important to point out this concern for the past in an age where discourses of the future, prevention and prediction take central stage. I very much welcome your thoughts on this.
All the best,
Mette