WPI adds "XMRV Research" Tab/ Research Form

[zero]

Having read this survey, it seems to me that they are looking for a few red flags to pop up in someone's answers. Looking for a small group I guess, perhaps only those who have certain cancers in the family, or have had certain cancers themselves?
I am only guessing, but any "general" survey on CFS that does not include insomnia as a symptom is pretty strange.

I have that feeling too. I am disappointed with the survey however - it asks if you have any neuro immune disease (they mentioned prostate cancer as well) in your immediate family. That means father, mother, or siblings. Well, I'm none of my immediate family has anything (I'm only 21) but my grandfather and 2 of his brothers had/have prostate cancer. Coincidence? Possibly; probably... but still, I think they might have wanted to know that.

 

[Martlet]

but my grandfather and 2 of his brothers had/have prostate cancer. Coincidence? Possibly; probably... but still, I think they might have wanted to know that.

And although not related to me by blood, my brother-in-law has a particularly aggressive form of prostate cancer at a much younger age than normal. He has just had surgery to remove a metastatic tumor from his spine.

I am speculating here since he has not been tested for XMRV, but it is possible, I think, that it might be in my in-law's blood-line where there are a lot of cancers, and my husband could be a healthy carrier.

 

[Cort]

WPI Response to form

Mike Hillerby's response to the email I sent him with concerns about the form. Nice of him to send it given how much work they're all doing.

Thanks for your email. You raise some good points, and we always look for ways to improve our work. The current form reflects the direction from our MD and PhD researchers, and is one step in the process. We would solicit more detailed information from any volunteers selected for potential trials.

I believe the researchers anticipated doing some work on the back end of the data collection process. There was no way to include every possible symptom, but as I said, you and your members have made some good suggestions.

The XMRV work is very exciting, but the workload is phenomenal right now! I hope you are well.

 

[Martlet]

Making changes to data

Okay, I filled out the form on the WPI site, as mentioned in another thread, but I realize that I forgot two important issues. I omitted that I have IBS AND that one of my daughters has it. Duh!

Anyone know if there is a way to amend our forms?