SF area: Can you help? Stanford is looking for healthy controls

[JaimeS]

Hey everyone -- if you live in the San Francisco Bay Area, or know any who do, please consider asking them to donate blood as a healthy control. The blood will be used for multiple purposes, not just to compare to ME/CFS patients', but you would be helping us out a lot.

Please don't ask blood relatives to donate; we're looking for truly healthy controls between the ages of 18 and 75 -- that is, no one who knows they have a relative with FM or ME/CFS.

Eventbrite allows you to 'purchase' a ticket, but in order to schedule a blood draw, please contact me. There is a link on the page that allows you to email me, or you can contact me by sending me a PM here on Phoenix Rising. We are collecting Monday and Wednesday mornings from 10am to 1pm.

One of the often-overlooked aspects of research is the gathering of data from healthy controls. Without healthy controls to compare to, there is no research! Please help us out by passing this along to friends and acquaintances. They will receive a small gift card for their time.

https://www.eventbrite.com/e/stanford-is-looking-for-healthy-blood-donors-tickets-32490347504

The link on the page says 'Contact' (all the way at the bottom of the screen); then select 'contact the organizer'.... again, or just PM me here! I will be keeping a spreadsheet and scheduling the appointments. When you do contact me, please let me know your age. We are trying to schedule draws with similarly-aged healthy controls, in blocks.

 

[JaimeS]

Thanks for all the interest and ideas in the PMs so far, guys -- keep 'em coming!

 

[Gingergrrl]

Thanks Jaime for confirming in the other thread that the healthy donors have to be in the SF area.

 

[Denise]

@JaimeS - do you know if there are plans to test other illness groups? (I am thinking that testing only healthy controls wouldn't indicate if an anomaly is specific to an illness or rather indicative of illness in general.)

 

[Gingergrrl]

@JaimeS - do you know if there are plans to test other illness groups? (I am thinking that testing only healthy controls wouldn't indicate if an anomaly is specific to an illness or rather indicative of illness in general.)

ITA and maybe comparing to patients with other illnesses (autoimmune, dysautonomia, etc) who are still very sick but not ME/CFS per se, could be helpful, too.

 

[me/cfs 27931]

These time slots are not convenient for the healthy people I know, as they are (fortunate enough to be) working.

If there were a weekend collection, I'm sure I could convince a healthy control or two. Just a suggestion for future collections.

 

[JaimeS]

@JaimeS - do you know if there are plans to test other illness groups? (I am thinking that testing only healthy controls wouldn't indicate if an anomaly is specific to an illness or rather indicative of illness in general.)

We are not the only group who will be using the healthy control data. It would certainly be interesting to compare our data with that of others who are examining different patient populations! Whether we get access to that data would depend on a number of different factors.

Thanks Jaime for confirming in the other thread that the healthy donors have to be in the SF area.

Or be able to get there! Unfortunately some of the testing we do must be done immediately after the draw.

These time slots are not convenient for the healthy people I know, as they are (fortunate enough to be) working.

For one donor that might be a single visit on a Saturday afternoon.

For the techs and scientists involved, it's working all day Saturday and all day Sunday, as well their normal hours during the rest of the week -- and it's doing so for two months to get all the samples you need. Samples for certain tests need to be processed straightaway, so it's not a matter of coming in a few extra hours once in awhile, but adding two full, extra workdays to an already-full schedule. For the same reason, you can't just do it in the evening, or you'll be there all night processing the samples.

We have to look after these scientists' best interests, do everything we can to support their work and ensure they don't burn out. Morning, non-weekend times were chosen for reasons of necessity / sanity!

 

[hmnr asg]

Is Ron Davis doing research in CFS? That would be amazing! the guy is a rockstar in genomic research.
I do live in the bay area, I will ask friends to see if anyone is willing to volunteer. Thanks for the great work!

 

[JaimeS]

Is Ron Davis doing research in CFS? That would be amazing! the guy is a rockstar in genomic research.
I do live in the bay area, I will ask friends to see if anyone is willing to volunteer. Thanks for the great work!

Yes, we are talking about the same Ron Davis! We are very lucky to have his expertise.

Thanks so much for helping us look for healthy volunteers, @hmnr asg !

 

[TrixieStix]

@JaimeS I just emailed this to my SF friends!

 

[JaimeS]

Thank you so, so much
@TrixieStix

 

[JaimeS]

We've gotten a few takers, so we now have the following schedule for next week and the week after: your 'asks' can now be even more specific:

1) 18 - 25 year olds (Monday, March 13)

2) 26 - 35 year olds (next Wednesday, March 8)

3) 46 - 55 year olds (Wednesday, March 15)
​

Sorry, 36-45 year olds... haven't had our first 'bite' yet for that age group. The moment we do, we'll start scheduling those.

Jaime

 

[monobear]

Living in nor-cal has its perks- I've been able to get my whole extended nor-cal family and friends on the hunt. Between friends and friends-of-friends, we're sure to turn up some volunteers. For such a worthy cause I'll message every fb friend in the bay!

 

[JaimeS]

Living in nor-cal has its perks- I've been able to get my whole extended nor-cal family and friends on the hunt. Between friends and friends-of-friends, we're sure to turn up some volunteers. For such a worthy cause I'll message every fb friend in the bay!

Thank you so much, @monobear ! We have had some success recruiting individuals, but we need a lot more for this coming Wednesday, 3/8.

If you know anyone 26 - 35 years old, please poke them especially. We have slots open at 15-min intervals after 10:30am (the first few slots are taken).

Thanks for all your efforts, everybody!

Jaime

 

[JaimeS]

Shockingly, we continue to get a good influx of people -- and on Wednesday, 3/8, we had a full house!

We are looking to schedule folks for this coming Monday next, on 3/13. Keep sending 'em our way, folks!

You guys are the best!

Jaime

 

[CFS_for_19_years]

Posted Eventbrite page to nephew's Facebook page (he lives in San Francisco). Hope he leaves it up. I also let him know he doesn't qualify to donate.

 

[JaimeS]

Thank you so, so much @CFS_for_19_years !

 

[JaimeS]

Some more easy advocacy:

If you are a citizen of the UK, and haven't yet signed the #stopGET petition, today is the very last day. Please sign, post to Facebook and other social media sites and re-tweet with the hashtag #stopGET.

The site is down -- total coincidence, I'm sure(!) -- so it's even more important that we campaign personally.

Here is the link: https://petition.parliament.uk/petitions/166601

We just need 2,500 more. We got that in the first few days. We can do it again!

Jaime