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Invest in ME Biomedical Research Colloquium 2017 #BRMEC7

Jo Best

Senior Member
Messages
1,032
PR thread: http://forums.phoenixrising.me/inde...timistic-at-2017-iime-conference-video.52339/

Dr. Ron Davis, Director of the OMF Scienific Advisory Board and Director of the Stanford Genome Technology Center, conveys his excitement about the latest progress being made in ME/CFS research, especially towards discovering treatments. Speaking from the recent Invest in ME (IiME) conference in London, UK, Dr. Davis discusses how ME/CFS research is growing, enthusiastic, and most importantly, focused on how we can make an impact on patients.

 

FMMM1

Senior Member
Messages
513
Dr. Nahle with Dr. Ron Davis of Stanford University and Open Medicine Foundation

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Dr. Nahle with ME/CFS leading expert Dr. Nancy Klimas of Nova Southeastern University

Nancy's team are looking for genetic data

what is the cost of whole genome testing?

anyone got a contact (email) for Dr. Nancy Klimas/the team running the genetic study?
 

Jo Best

Senior Member
Messages
1,032
what is the cost of whole genome testing?

anyone got a contact (email) for Dr. Nancy Klimas/the team running the genetic study?

The contact email is: MECFSGenes@nova.edu

From the webpage: http://www.nova.edu/nim/research/mecfs-genes.html
  1. How does this study work?Interested individuals must email MECFSGenes@Nova.edu. Please state whether you have ME/CFS or are a Healthy Control. You will receive a personalized link, within 2-3 business days, to a secure web based platform, RedCap, which is how the study is conducted. 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 a survey queue with an additional survey and an area to upload your raw genetic data.
    PLEASE NOTE: The email you receive WILL be encrypted and you WILL have to follow the instructions found here in order to proceed.

    7. I completed my genetic testing from a website. Which companies do you accept?At this time, we are only accepting raw genetic data from 23andme.com and dna.ancestry.com
A quick look at the websites today shows these prices:

$99 r(educed to $69 til August 15th) on https://www.ancestry.com/dna/

and two options on https://www.23andme.com/ of $99 for 'Ancestry Service' or $199 for 'Health + Ancestry Service' (USA) but the prices may depend on what you're country in.
 

Binkie4

Senior Member
Messages
644
I have a vague memory from possibly a year ago ( very helpful!) that the OMF would be introducing a genome testing facility in the near future.

Anyone remember anything about this?

@Ben Howell @JaimeS
 

Snowdrop

Rebel without a biscuit
Messages
2,933
If I'm thinking of the same thing there was someone named Laura? who @Ben Howell mentioned was working on a blood test that was due around end of July (now past).
The issues for delay were one of transporting the samples I think.
 

slysaint

Senior Member
Messages
2,125
If I'm thinking of the same thing there was someone named Laura? who @Ben Howell mentioned was working on a blood test that was due around end of July (now past).
The issues for delay were one of transporting the samples I think.
One of the metabolomic tests that Laurel Crosby is working on at Stanford is able to be used by anyone worldwide, providing you can get a blood draw and centrifuged. This is still being tested before being made available.
posted here
http://forums.phoenixrising.me/inde...-17-research-update.49749/page-11#post-821701