ME/CFS Genes Study- Institute for Neuro Immune Medicine

Mentioned on another thread.

ME/CFS Genes Study
"
We are currently recruiting ME/CFS patients AND Healthy Controls for this completely web based study to create a one of a kind genetic database for individuals 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.

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

https://www.nova.edu/nim/research/mecfs-genes.html?mc_cid=019c99b48c&mc_eid=c1fdea04b1

 

They only accept data from 23andme.com and dna.ancestry.com.

 

Been going for a year or two I think?

Should hopefully have a few by now

 

Cort did a typically enthusiastic blog about this project recently, mainly about a small followup study coming out of it (MTHFR defect – folate metabolism) currently being recruited for:

https://www.healthrising.org/blog/2...ue-syndrome-community-gene-breaks-new-ground/

Cort states that about 450 people have provided dna data so far.

I'm of those 450 and a couple of weeks or so ago received an email asking if I'd like to participate in the followup study because I have the MTHFR defect. Which I would have agreed to do but can't because only US residents are eligible.

Not that I hold a great deal of hope for any major findings from the MTHFR-folate study. Given how many of us have tried all sorts of supplements, all the different types of folate included, somebody would have hit on this by now if had a major effect. And anecdotally I've used the same type of folate supplement they propose testing myself to exactly zero effect. But it's an easy enough intervention to test so why not.

To be clear, everyone anywhere can contribute their dna data to the main project, the US resident restriction applies only to the smaller followup study.

 

Is there anything published or due to be published on the MTHFR finding so far? I read the blog yesterday but it doesn’t give any link that I could see. Would be interesting to get more details. (eg level of stat significance)

Anyhow, I didn’t realise they accepted Ancestry as well as 23andMe - I got an Ancestry kit done a couple of months back as it was on offer, 50 quid at Amazon, so will see how to go about uploading.

 

The email I received gave no indication of how many of the 450 had the MTHFR mutation and didn't mention any publications.
They have only started recruiting for the MTHFR study. The intervention itself was for 3 months if I recall correctly. I don't think there was any indication in the email of for how long after patients would be followed, or when results could be expected.

ETA: @ukxmrv, this is the mutation they're looking for (from the email):

 

Thanks for letting us know. I do have MTHFR mutations but when Rich VKB was alive I worked with him and feel I did as much as possible to address this with no obvious good effect. Not been approached for the new study so maybe mine was different to the one they are focusing on?

As an aside, I have tested for low blood folate before and received supplementation on the NHS. I didn't notice any different in my core ME symptoms before or after this though.

 

Out of interest @ukxmrv can you say which SNP (s)on MTHFR you have?
Both my aunt and daughter have MTHFR mutations ( and MTR, MTRR) .
If you would feel better with PM rather than open post , feel free.

If you would prefer for this to remain private i fully understand.