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Major ME/CFS Genetic Study Launched: Participants Needed

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Click here for a video message from Dr. Nancy Klimas, Director of the INIM!*

Thank you for your interest in the ME/CFS Genes Study!

Are you currently diagnosed with ME/CFS (SEID)?

Are you interested in your genetic makeup?

If so, help the INIM create a one of a kind genetic database for patients with ME/CFS. Participation for this study requires you to have a computer with internet access, an email account and your agreement to map your genes through the use of a publicly available genetic testing websites. If you agree to participate, you will provide us with your raw genetic data for us to compile in a one of a kind, ME/CFS Genetic Database.

Besides providing us with your genetic data, participants will be completing online surveys at your own pace. As all communication is done via secure email server, NO travel is necessary and participation can be done in the comfort of your home!

Below, please find all the information you will need to better understand the purpose of this completely web-based study including how to participate, and how you will be receiving information regarding this study.

*Please note the above video was created prior to 23andme increasing their price for testing services.


1. How does this study work?

Those individuals interested in participating must email MECFSGenes@Nova.edu so that we may send you directly a personalized link to a secure website which will be how the study is conducted. The email you receive WILL be encrypted and you WILL have to follow the instructions found here in order to proceed.
Once you complete the instructions, you will click on the link and complete a Pre-Screening Questionnaire consisting of 11 questions. If you qualify for the study, you will be directed to continue with the additional surveys and uploading your genetic data. Please allow 24 hours for a response.

2. Is there an Informed Consent and where can I find it? Will I have to physically sign it and send it in?

If you qualify for the study, you will see 2 surveys in your Survey Queue. The first survey is the ME/CFS Genes Survey. You will find the informed consent on this survey. YOU MUST REVIEW THE INFORMED CONSENT PRIOR TO COMPLETING SURVEYS AND UPLOADING GENETIC DATA. If you do not agree to any part of the informed consent, you cannot continue with the study. Informed consents are signed electronically by simply agreeing to participate in the study. Please find an example of the informed consent here.

3. I completed the Pre-Screening Questionnaire and do not see any options to continue with the surveys. What does that mean?

If you've completed the Pre-Screening Questionnaire and do not see any options to select in your survey queue, that means you did not meet the criteria to participate in the study.

4. I completed the Pre-Screening Questionnaire and see 2 surveys in my queue: ME/CFS Genes Survey and Upload Genetic Data. Must I complete the survey before uploading my genetic data?

You do not need to complete the survey prior to uploading your genetic data. In fact, you can complete the survey at your leisure in multiple sittings. The program will give you a code you will need to enter to re-enter your survey, but do not feel pressured to complete the survey in 1 sitting. You can upload your genetic data at any time.

5. I am currently not diagnosed with ME/CFS but have another disorder, can I participate?

This study is intended to collect genetic data for patients with ME/CFS. However, you are more than welcome to complete the Pre-Screening Questionnaire and see if you qualify for this study.

6. Will I have to come to your clinic or see your provider?

No. Participating in this study is purely web based, meaning communication will be completed via email. Completing the surveys and uploading your genetic data will also be completed at your leisure using RedCap, a secure web-based platform.

7. I completed my genetic testing from a website. Which companies do you accept?

We are interested in collecting your genetic data from any publicly available genetic testing site. Examples include 23andme.com, Ancestry.com, Family Tree DNA, Gene by Gene, Pathway Genomics, and GeneSight.

8. When I upload my genetic data into my survey queue, is there a specific file format I must use?

YES! We need your data in a .csv, .txt., xlsx file format. Please ensure with whichever company you choose your results can be saved in any of these formats.

9. Is there a cost for participating in this study?

The only cost to you is your payment to the publicly available genetic testing site of your choice. There is no cost to the INIM.

Click HERE for more information.

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2 thoughts on “Major ME/CFS Genetic Study Launched: Participants Needed”

  1. Tazgal1426 says:

    Is there anyway to get assistance in DNA testing cost? I am on Social Security Disability of $838/month. $100 is the impossible dream for myself and many other CFS PWC’s. I am 64 and have had CFS since childhood and would love to participate. My belief is that my mother and grandmother also had it.

    Jane Mostowitz
    Houston CFIDS Association
    Houston, TX

  2. wick66 says:

    I did genetic testing thru 23andme 2yrs ago: saved my life. Work with Diana Galloway,RN re supplements from Dr. Amy Yasko, PhD, ND. Many bad genes, methylation issues. I’m glad this area is FIANLLY being considered. Supplements are expensive tho.

    Judy Wickert ME/CFS

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