• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

ME/CFS Genes Study- PHASE 2 NOW OPEN

SB_1108

SB_1108

Senior Member
Messages
315
The link didn't work in my email.

Don't know anything about this second phase.
 
JaimeS

JaimeS

Senior Member
Messages
3,408
Location
Silicon Valley, CA
SB_1108 said:
The link didn't work in my email.

Don't know anything about this second phase.
Click to expand...

You have to download the attached document instead. Didn't work for me either, but that did the trick.

If you filled out the survey the first time around (i.e. met their criteria) you don't have to do anything new at this time.

-J
 
JaimeS

JaimeS

Senior Member
Messages
3,408
Location
Silicon Valley, CA
Ugh, I don't even remember how the survey went the first time I took it, and I'm not sure how to find out! They're basically telling you only to do more if you didn't qualify last time, and I have no idea.

They really need a great deal of data. If anyone has 23andme done, or anything like that, and you have a diagnosis of ME/CFS, Klimas et al. could really use your data to help discover more about the illness.

-J
 
JaimeS

JaimeS

Senior Member
Messages
3,408
Location
Silicon Valley, CA
bertiedog said:
I couldn't get the link to the survey to work it was all greyed out so sent them an email.

Are you saying I should open it from downloads?
Click to expand...

Yes, you should have received an email with an attachment. The attachment should get you there.

Jaime

[Edit:

1) Click on the attachment, not the link.

2) It should give you a button that says 'Click to Read Message'. Click. :)

3) You are submitting external info. Are you sure? (Ok.)

4) It should prompt you to create a username and password, with your email as the username. The password creation is screwy and does not follow its own rules. Just go with it until you find something it accepts. Obviously this is glitchy and assembled in haste, unfortunately.

5) The following should pop up:

Good afternoon!



You are receiving this email because the ME/CFS Genes Study has moved into phase 2 of our study! Part of this phase consists of broader inclusionary criteria. Therefore, if you completed the pre-screening questionnaire and were NOT accepted into the study, we invite you at this time to follow the link below and complete the survey again.



IF YOU WERE ACCEPTED INTO THIS STUDY PREVIOUSLY, YOU DO NOT HAVE TO DO ANYTHING AT THIS TIME…except spread the word!
Click to expand...

Then, you should see a link below, that is your personal link to the survey.

My question / worry is:

  • It states that you should not do anything if you were taken to a certain spot on the survey last time. I don't remember -- and I assume lots of us with brain fog issues don't remember -- where we left off in the survey last time off the top of our heads.
  • If we complete the survey again, this might double-up on data and give more weight to certain genetic data.
Being given the same code for the survey both times might fix that issue, but I have no idea if that is the case.

Moreover, I have no idea how to communicate my concerns to Klimas et al., because there is not contact information offered up anywhere. The provided FAQ page is not helpful here.

If anyone knows contact information for Klimas, that'd be great. I also tried to find info for Ana Del Alamo, the research assistant who sent the email (?) but again, no direct contact information is provided.

-J
 
Last edited:
You must log in or register to reply here.