SolveCFS Biobank, Who is supporting this on this forum?

[*GG*]

I sent in my paperwork yesterday, anyone know how long it takes to get the paperwork etc?

I have 2 Dr appt early next week!

 

[jspotila]

I sent in my paperwork yesterday, anyone know how long it takes to get the paperwork etc?

I have 2 Dr appt early next week!

Once the office receives your consent form, they'll send you the clinical questionnaire. We have two staffers working on the BioBank now, so hopefully it will be a quick turnaround for you.

 

[Cort]

Is this the place people should go to fill out the questionnaire and start the process of getting enrolled in the BioBank?

http://solvecfs.org/SOLVECFSBIOBANK/ELIGIBILITYQUESTIONNAIRE/tabid/113/Default.aspx

I've had the same problem with the polls, by the way, if you don't click a box the participants names show up.....

 

[jspotila]

Is this the place people should go to fill out the questionnaire and start the process of getting enrolled in the BioBank?

http://solvecfs.org/SOLVECFSBIOBANK/ELIGIBILITYQUESTIONNAIRE/tabid/113/Default.aspx

I've had the same problem with the polls, by the way, if you don't click a box the participants names show up.....

The questionnaire is designed to help people assess whether or not they have CFS. If a person has already been diagnosed, then just email the BioBank to get started!

biobank AT solvecfs DOT org

 

[CateK]

I would like to, but I just don't have the energy to wade through the web pages and decipher the exclusion conditions and how they apply to me. I do wish the web pages were set up for brain-fogged folks

 

[jspotila]

I would like to, but I just don't have the energy to wade through the web pages and decipher the exclusion conditions and how they apply to me. I do wish the web pages were set up for brain-fogged folks

CateK, I am sorry that you are having trouble with the web pages. Rather than struggle with the brain fog, you might want to consider emailing the BioBank at biobank@cfids.org. They can answer any questions that you have.

 

[CateK]

Thanks for responding! I'll do that.

 

[*GG*]

I think you may have to restart it. But I'm not an expert. That's what you have to do on yahoogroups.

If you restart it, you might want to be more specific in the wording or start a new thread.
The thread title is:
but the vote asks:

They are not necessarily the same question.



Personally, I think the CAA should be congratulated for doing this. Also, one could like them doing this but still disagree with them on other issues. One could even not like them about virtually everything and still participate!

Many people in the US may not know but many, if not most, national ME/CFS groups around the world aren't financially supporting biomedical research. Some have quite big budgets e.g. AfME is in and around 1m (in the region of US$1.5m) (ok, it's giving a tiny bit from a fundraiser a supporter organised in 2006 but generally hasn't been financially supporting research over the last 10 years). Many/most regional and smaller groups in the US and elsewhere don't raise money for research - either for themselves or for other funds. Personally, I'm pleased that the CAA is really getting behind financially supporting research. We need more groups around the world to do likewise, IMO.

Now I see your point, my bad. If someone else wants to do this they can, I don't think I will. FYI

 

[jimbob]

I'm in the biobank, but they're not using me!

 

[jspotila]

I'm in the biobank, but they're not using me!

Are you referring to the BioBank collecting your clinical information but not blood samples? If so, I can explain a little bit. Processing and storing one person's blood samples costs $400 or more, depending on what kind of processing is being done. The Association wants to expand the BioBank as quickly as possible, but paying the $400 tab per person would significantly limit the expansion. Instead, the BioBank is collecting the clinical information for inclusion in the database. When a researcher needs a cohort, the database can be searched (for example, women over 40 with illness for more than 10 years - purely hypothetical) and the precise cohort assembled. At that point, blood samples (or cheek swabs) would be collected for that study.