STUDY: Using your raw genetic data to compile in a one of a kind, ME/CFS Genetic Database

[Neunistiva]

I will copy-paste here from another thread my and my family's experience and guide with uploading data and answering the questionnaires.

The whole study is done online and it’s possible to do every step without getting out of bed.

You can start answering surveys before you even have your genetic data, and many patients already got tested for other reasons, but I waited to get everything I needed because I can’t keep several things in my head at once. I will write bullet points in the order I finished them.

• Go to 23andme.com or dna.ancestry.com to order your kit and follow their instructions (we ordered our kits on 2nd of November, we mailed them together at the same time, and received our raw genetic data on different dates between 30th of November and 10th of December. Obviously all of this will vary depending on the time of the year, country you live in, type of shipping you choose etc.)
  
  
• E-mail MECFSGenes@Nova.edu and state whether you have ME/CFS or you are a Healthy Control
  
  
• They will send you a secure link in your e-mail inbox. You have several days to click it before it expires. Once you click it, you will be taken into an online NOVA mailbox. You will have one more e-mail there will clear instructions.
  
  
• If you follow the instructions and click the next link you will be taken to a web form where you will fill out your real name, last name, choose a password and security question. (Write these down as you will probably not be able to fill out all the surveys all at once and have to come back at a later time.)
  
  
• Fill out a Pre-Screening Questionnaire consisting of 11 questions to see if you are eligible for the study (you may want to do this before ordering genetic test if this study is the only reason you want it)
  
  
• Finally, fill out surveys and upload your raw genetic data. (You can take as much time as you need and even stop and come back whenever you want.)

A few notes:

I know this sounds like a lot to do and seems overwhelming, it did for me too, but I am severely ill and managed to do everything on my own, except read Informed Consent pdf file because that was several pages long. My mother read it for me and we were both satisfied that this was a professional and reliable research that will handle our genetic data carefully.

Everything was pretty self-explanatory, but if you get confused there are simple instructions for everything with images for those who struggle reading text.

I stretched out filling surveys over 3 days at a comfortable relaxed pace. Shortest survey had 1 question and longest one 162 (but that one didn’t take long to fill out either because it was actually 3 times less, 54 questions with additional symptom severity options). On the other hand, my parents who are healthy did it in about half an hour all in one day.

I still had my mother monitor my answers because my brain does stupid mistakes all the time and I didn’t want to answer something wrong and influence the study.

Those two private genetic companies, 23andMe and Ancestry offer several options when ordering your kit, but I e-mailed the researchers and they confirmed they only need raw genetic data so it doesn’t matter what you choose as long as you get raw genetic data.



Relevant links:

1. NOVA SOUTHEASTERN UNIVERSITY Institute for Neuro Immune Medicine ME/CFS Genes Study
2. 23andMe
3. Ancestry

What precautions are they taking to protect patient genetic information being sent over the internet?

Before you upload your genetic data you get several pages long Informed Consent pdf that explains all of this and other consents you need to give and you can't proceed without agreeing to it.

 

[Seven7]

I figured out why it didn't take mine, I was slow onset, this is only for viral onset, I think they should have taken everything then subtype. but Oh well.

 

[Neunistiva]

I figured out why it didn't take mine, I was slow onset, this is only for viral onset, I think they should have taken everything then subtype. but Oh well.

Did they tell you that? I have no idea if I had viral onset or not and they accepted mine.

 

[Seven7]

Did they tell you that? I have no idea if I had viral onset or not and they accepted mine.

There is a survey first, then there are question. At the end it told me sorry you do not qualify I am pretty sure it told me was because of my onset. I don't remember he exact words.

 

[Neunistiva]

There is a survey first, then there are question. At the end it told me sorry you do not qualify I am pretty sure it told me was because of my onset. I don't remember he exact words.

Yeah, I know, I mentioned it in my previous post, it's called Pre-Screening Questionnaire, but I don't remember anything about viral onset.