Discussion in 'Other Health News and Research' started by frenchtulip, Nov 21, 2015.
I've already given our 23andme data to Dr Rey independent of this study, but did sign releases for any of our anonymized data to be used in research studies. Do you know if we need to sign up specifically for this study to have our genetic data used?
In the video Dr. Klimas says she is asking for donations of genetic data of PWME, rather than a financial contribution, and asking people to help take this crowd sourcing of genetic data viral.
They mention Ancestry.com as one of the tests they will accept. I thought genealogical testing only tested certain genes to find a family connection.
Has anyone on PR had this test done by them?
And if so what genes were tested?
I think they're taking any genetic data they can get.
I did the 23andMe test a few years ago, but never did anything with the data, so if Dr Klimas can get some value out of it, I'm all for that.
Thanks for posting this.
Apparently you have to have a ME or CFS diagnosis to continue. I registered, but was not linked (accepted) to the following surveys. I had the requisite symptoms, but could not answer affirmatively to diagnosis.
I am Klimas' lead patient advocate for this study. That image posted above is mine as I created it, but placed her by another as I asked for it to be shared. Personally I emailed them a few days a go and the link arrived where you respond. As Klimas is my expert, I was able to get past the first screening questionnaire. If you get past that point, then you go on to 2 very long surveys. Then the chance to upload you genetic data which can be from any genetic site.
Klimas is also wanting Gulf War Syndrome patients too. I did hear that Dr. Rey was in fact collecting data directly but to the person above who asked, I would probably email them and for those forms they have their though i do not know if it is needed. My guess is these forms may be more complete.
I've been wondering about genetic testing for a while but didn't want to do it if there was no use for it. This seems like a good opportunity. There is some mention of 23andme price increase (haven't googled again yet). Is there anything else giving similar info? I'm guessing the ancestry reference is only if that's what you already have? Doesn't seem to make sense to pay for that specifically for this unless I'm missing something.
It would seem to make sense to do the screening questions before paying for tests though.
Does anyone know if we'll get any personal feedback?
Also I have some anxiety about getting too much information with 23andme. Parkinsons is in my family. I don't want to know if I'm likely to get that. Are there options where you don't test for certain things (or agree in advance that 23andme won't tell you)?
This site compares different testing and seems to sometimes offer discounts
Still a bit confusing so think I'll contact INIM.
I don't think they give much health data anymore, especially if you're in the US. But even when they did give a lot of info, you'd have to "unlock" the reports regarding specific SNPs which directly cause nasty diseases.
I'm in the UK.
If they're not giving much health data now does that limit the usefulness for Klimas' project?
There are numerous options for which genetic test you can take. the majority of the patients in Klimas' study are doing the 23andme. Yes there was in fact a price increase do to a new FDA ruling giving them permission again to offer more but not all medical correlations. The FDA has now expanded their ability to give you a bit more again and therefore the price went up.
The test which I have completed when finished can be downloaded into numerous medical sites for interpretation. they do not come out and state any illness you might have. Dr. rey In Klimas office prefers this site her: LIVEWELLO. You pay $20.00 to upload your data and they can tell you a bit more about which drugs work best for you or function worse for you. For example, I learned I have a vitamin B, D and A absorption problem. I knew about the first two but I did not know about the Vitamin A and I will be working on fixing that soon. I also learned I am not a good responder to Coumadin, which we learned back in 2006 after stroking 3 times. For me, the raw data is difficult to understand but these educational sites where they let you upload your data for free to $5.00 to $50.00 depending on which you choose was well with it. Also, I learned I was a carry of a thyroid gene issue. Oddly enough, my oldest had to start thyroid medicine a few years ago... so it was clear that I passed it to her. At a minimum you will find out if you have this vitamin B issues and then learn which type of Vitamin B you must take as there are 4 types and not all types are good for each genetic issue.
Klimas group at NOVA will be sorting through out genetic data. Then we will be grouped into like kind patterns. They will then decide which groups pose of interest to them to follow thereafter and they will re-contact those people to be in a bigger clinical trial study. It means you may get to learn about your specific traits of this illness. Klimas is my expert and on our last visit 8 months ago, she PERSONALLY ASKED ME to run the patient side of the campaign pushing out awareness. We built a closed community of 200 volunteers that got the tests done early to learn who to do the process and then just as of this week, the campaign was publicly launched. I have included one of their emails to me to verify the accuracy of my position with Klimas' staff. There are trouble makers online who do nothing but to tear down the good deeds of others and say things are not true, when they know NOTHING about what they are saying...
I apologize for the delay in responding. Been swamped. Please note that we are awaiting 1 final thing to launch (I’m hoping to get it resolved on Friday for a weekend launch).
With that said, I was wondering if it would be ok for me to post on the page with updates, answering some of your questions from below and just prepping the group for the next step as we launch.
I am working with Dr. Klimas on a press release to submit to other sites so thank you for your offer of getting the word out to others and I will provide to you once it is finalized. THANK YOU THANK YOU THANK YOU for your patience, support and peace keeping on the facebook site. Let me know if it’s ok to post something and I can draft something up and send to you first if you prefer.
The Livewello interpretations would not be useful for processing/comparing the genetic data of many patients. The project should purely be interested in the raw data, especially since things like Livewello are focused on playing around with trendy topics like methylation.
I would consider Livewello to be a complete waste of money in the context of a genetic study, and it does not make sense to see it recommended here.
This is also extremely unlikely.
Hopefully the people planning to conduct the analysis can disseminate some better information soon.
When I did the 23andMe test I just downloaded the raw data and opted out of all the other stuff. My impression, which may not be correct, is that most of the interpretation stuff only shows who may be susceptible to certain illness. This is great for insurance companies that want to exclude "undesirable" clients.
Personally, I am much more concerned about the illness that is slowly killing me today, than I am about something that might possibly happen at an unpredictable time in the future, assuming I have one beyond today.
Klimas's project is to compare the raw data of as huge a number of patients and controls as possible.
In answer to people's questions of how they could learn something from their raw data since she would not be providing any interpretation, she listed a few options - Genetic Genie, Livewello, Sterling etc. Out of these options she said Livewello was her preferred one.
@Valentijn Did you submit the results you've gathered from this forum already? (Otherwise, I'll submit mine separately - don't want my results submitted twice...)
No, I wouldn't share that data without permission, nor could I fill out the questionnaires for people.
Results must be submitted separately by each individual. Each participant will receive a coded email with a link to a survey they must complete. That survey link will also provide a way to upload your genetic results.
You can also try a Google Site Search
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