Klimas’s 23andME Research Tribe - for PWME to share 23andME results with Dr Nancy Klimas

[Sasha]

Someone posted a comment on Cort's blog about this (closed) FB group, currently 211 members, which you have to join to see posts and comments:

But according to 'Freda':

Klimas’s 23andME Research Tribe- is the name of a Facebook group of members with ME/CFS (SEID) who are committed to paying for the 23andME test to be done and sharing the results with Klimas and her researchers. Join the group today for more details. Nancy Klimas will do her magic with the data.

Edit: But please read Valentijn's warning below.

 

[Valentijn]

It looks like that is being run by the Klimas patient who also runs a pro-safe-exercise ME/CFS group. I would not get involved with them, at all, and I doubt that Klimas has any direct involvement with the group. And if she does, I seriously doubt she fully understands the personalities involved.

The level of control freakiness in the exercise group was quite extreme, and unpleasant. She insists on being friends with everyone in the private group so that she has access to their friend-only information. And there were bizarre procedures to be followed before newer members could ask questions.

There was also a distinct hostility toward anyone external who was not appropriately supportive of the group, getting pretty close to stalker-territory.

 

[Sasha]

Yikes - I've edited my post to make sure that people read yours, @Valentijn.

Four members of the FB group are listed as admins and Nancy Klimas is one of them. So she must be aware of the group and involved in it but...

 

[Valentijn]

At the very least, I would strongly urge anyone wanting to share their information for research purposes to send it directly to the researcher. There's never any need to send it via a 3rd party.

Similarly, there shouldn't be any requirement to join a Facebook group to participate. And if someone does want to get involved to help with the fundraising efforts or whatever, I hope they feel free to leave that group as soon as inappropriate requests are made of them, or if they feel uncomfortable with the admin policies.

 

[Sea]

At the very least, I would strongly urge anyone wanting to share their information for research purposes to send it directly to the researcher. There's never any need to send it via a 3rd party.

There won't be sharing of results in the group. The group's only purpose is to find people who are interested in participating and passing their email address on to Nancy Klimas. I would guess you could do that directly to Klimas' office.

I believe the group's admin suffers from cognitive difficulties, I do think it would be better if someone else did it. The organisation is not great and communication is not easy, but I don't think there is any malice intended or anything untoward.

 

[ahmo]

I've tried to find an email address for Klimas, no luck. Anyone else?

 

[maryb]

post deleted

 

[lartista]

GOAL: 10,000 genetic international profiles submitted from ME/CFS and Gulf War Syndrome patients. I believe many people with POTS, LYME, FIBRO would all be included as she needs a HUGE genetic base to sort the details from.

Klimas' video:
https://drive.google.com/file/d/0B9vYfJXRH3i4MmhxWXY2V2stbW8/view?pli=1

NOVA's page explaining the study:
http://www.nova.edu/nim/research/mecfs-genes.html

Klimas' bio:
http://www.nova.edu/nim/clinic/dr.-nancy-klimas-bio-page.html

INSTRUCTIONS: Dr. Nancy Klimas' ME/CFS GENES STUDY

1) MECFSGenes@Nova.edu

2) Watch & RE-WATCH Dr. Nancy Klimas video to understand the INIM ME/CFS Genes Study.

3) Read and RE-READ the instructions at this link:
http://www.nova.edu/nim/research/mecfs-genes.html

4) Those individuals interested in participating must email
" MECFSGenes@Nova.edu " so that they can email directly a personalized link to a secure website which will be how the study is conducted. If you are having trouble understanding what to do, contact them directly at that email above and they will help you.

5) INIM under Dr. Rey & Dr Nancy Klimas' direction are accepting ANY & ALL GENETIC DATA you have on yourself or your sick family member with ME/CFS or ME/CFS like sick illnesses... ie Gulf war Syndrome, Lyme, Fibro.

6) If you have NOT completed any genetic tests, you can do so by ordering one from "www.23andme.com"for your country. Take the test and when your results are ready, proceed with the above instructions.

7) Dr. Klimas and INIM are asking for your help. PLEASE HELP OTHERS WHO ARE HAVING TROUBLE to get through these instructions. Take this list from above, cut and paste were you wish.

GOOD LUCK and you are all making a global difference to help our cause!

 

[Bob]

New thread: http://forums.phoenixrising.me/inde...nts-needed-for-dr-klimas-me-gene-study.41379/

 

[IntelligentImpulse]

Interesting, if only they covered the expense of the genetic tests I would gladly participate. They cost $199 at present and I have no interest in my Austrian genealogy.