The 'Optimize Dr. Bateman's Research' Fundraiser

View attachment 2196 View attachment 899

The first 'Official' Phoenix Fundraiser will provide essential information infrastructure elements to Dr. Bateman that will assist her in her studies on XMRV with Dr. Light/Singh, on XMRV with Glaxo-Smith Kline, on muscle and other receptors with Dr. Light, on Ampligen with Hemispherx and other studies. etc. - from CBS, Cort

Why Should We Help?

Reason # 1 - Dr. Batemans Fatigue Consultation Clinic is Right in the Middle of Some Really Critical Research

View attachment 2194 A former member of the IACFS/ME Board and CFSAC panel, and a physician, researcher and advocate, she is a vital cog in our search for answers. Dr. Bateman and the research branch of the Fatigue Consultation Clinic (FCC) are currently providing View attachment 896 patients for several important studies including Dr. Lights exciting muscle receptor study (see Surprise of the Conference) and Dr. Singhs XMRV studies at the University. The FCC was one of three clinics to participate in Ampligen trials and continues to participate in several trials of drugs for Fibromyalgia and associated conditions. Dr. Bateman is also a member of the steering committee guiding the recently announced open-ended grant from Hemispherx to Assist in the Development of Chronic Fatigue Syndrome (CFS) Clinical Guidelines.

Last month, Dr. Bateman provided 100 CFS patients for a significant expansion of an XMRV study with Dr. Light, Dr. Singh and the ARUP lab. (See - A Light in the Darkness: Good News Ahead for XMRV?).

Antiquated Computer System - The research branch of the FCC, however, needs our help. It is running on a crumbling, cobbled together computer system that is straining under the load of todays demands (using the day before yesterdays technology - more accurately, 1990s technology). It's not uncommon for small organizations to be stymied by database needs; they simply don't have the technical resources, funding and know-how to maximize their productivity in this increasingly important area. In the FCC's case, not only are they not maximizing their resources, their ancient system is simply wearing out. For all it's good works the research program at the FCC may be at tipping point as the infrastructure as they take on important new studies while their old system wears out.

The situation at the FCC came to our attention when, CBS, one of our regular Phoenix Rising Forum particpants (with a background in research and database design as well as an appreciation for the long overdue need in CFS research for well characterized cohorts), inquired about participating in an upcoming study and while on the phone, asked innocently how is your database system?

While the dedicated staff is working hard to stay on top of the growing demands created by the recent interest in XMRV and the work of Drs. Light, Light and Singh, the truth is, they (and their research) would benefit immeasurably from a new Contact Tracking system.

Reason # 2 - A small amount of help from us (money) could make a real difference

By helping the FCC with their infrastructure needs well help them help themselves (and us!). The FCC, for instance, generates a significant portion of its revenue from upon tracking study participant contacts. The FCC Research Department should be generating View attachment 2195 revenue each time View attachment 895 one of those patients steps into the office, but it's not. Simply providing them the means to do that could repay this investment many times over. At a time when interest is exploding due to XMRV the FCC is approaching a time where more studies (studies we vitally need) could easily become an unmanageable burden leading to lost opportunities for everyone with CFS.

More importantly, getting the FCC an up to date computer system will help Dr. Bateman characterize her patients better, giving her the opportunity to tease out subsets and integrate new data with the years of data she's already collected on long-time patients. Using this kind of data she can begin to answer questions such as why one patient is responding to a drug while others are not. These are things every ME/CFS researcher needs to be able to do in our information age.

Reason # 3 - Dr. Bateman Deserves It

One last reason to support Dr. Bateman is that she deserves it. She got into the field after watching her sister struggle with illness. For almost 10 years she's been operating View attachment 897 one of the few clinics in the US devoted to ME/CFS. She charges such absurdly low fees and View attachment 2197 spends so much time with her patients that she doesn't make a dime off her practice. In fact her commitment to keep prices as affordable as possible is partly what has caused this situation to come about. Fees derived from drug trials on FM at the FCC are all that is keeping her afloat. She and her staff could have easily taken their talents in another direction and led far easier lives. She has been there for us, fighting our battles on every front imaginable. She is committed to making a difference in this field.

Dr. Bateman isnt the type of person who spends time or energy promoting herself. She didnt ask for help but it is clear that she deserves it and that she could use it.

Help us Help the FCC (Help Us)

This is our chance to make a real difference. At a time when far greater demands are in sight, the FCC's data structure is struggling. View attachment 2198 Luckily their monetary needs are quite View attachment 898 modest. The FCC can get it's database on very sound footing with two computers and some software. If we can do that the forum member that brought this situation to light has volunteered to contribute his time (and limited energy) to create a new contact tracking and data management system and train FCC's employees on how to maximize the software. His experience doing this with other groups has shown it can have a dramatic effect on efficiency and productivity.

The GOODIES

  • Lenovo T410 Laptop w/docking station,
    monitor, keyboard and Mouse, warranty,
    port replicator and Database software ($1954)
  • Lenovo ThinkCentre A63 Tower desktop
    with monitor ($988)
  • Grand Total - $2942

We will be updating you regularly about the totals raised

Update! Update! The Fundraiser is over! In less that two days we raised over $3000 In Donations! THANKS EVERYBODY!!

* All donations are fully tax deductible. All donations are processed through OFFER. Please note that this (remarkably inept) PayPal form requires you to input the amount you want to donate and THEN requires you to click on 'Update Total' in order for your money to be entered.)
_________________________________________________


The OFFER Connection


OFFER, the non-profit organization Dr. Bateman created in Salt Lake City, which is housed within the FFC demonstrates Dr. Bateman's commitment to advancing patient and physician education about ME/CFS. Since 2002 OFFER has quietly become one of the most dynamic CFS organizations in the US.

In 2007 Linda Milne spoke about OFFER at a CFSAC meeting. Since 2002 OFFER has


  • Attracted a high quality board of directors including Dr. Bateman, a clinical psychologist, a FM physician, school district executives, a bank executive, a disability attorney and others.
  • Produced and recorded 60 monthly meetings with experts focusing on coping and therapy
  • Produced an on-line newsletter sent to several thousand people
  • Presented four annual provider/patient conferences on CFS research and treatment
  • Had the distinguished Senator from Utah, Orrin Hatch, close the provider conference and open the patient conference.

Dr. Klimas referred to FFC/OFFERs network of research, treatment and education as our first real Center of Excellence and reported her surprise at the intense interest shed saw from the medical providers at their conference. She felt that their agenda, absolutely has to be done across the country. Dr. Jason said 20 OFFERS spread across the country could make a huge difference.



  • Check out OFFER - one of the best little ME/CFS websites with an extensive collection of conference videos.
By CBS and Cort

Comments

Thanks Bob. Really thanks to CBS for walking in there and checking out their system and saying "Man, you could be doing ALOT better". He produced a system like this before for a department in a major University and it made them vastly more productive and paid for itself many times over. If they didn't know what was possible it's no wonder that Dr. Batemen doesn't know. This is an area of expertise that most ME/CFS physicians/researchers simply don't have. We're lucky CBS is willing to contribute his limited time and energy to get this going.
 
Cort, I will make a personal donation too and will post on my personal page as well on FB and will spread the word through PANDORA too.
Marly Silverman
 
Marly and PANDORA are in the act (and so quickly!) - how can we not succeed? Thanks Marly.
 
Thanks so much for being willing to expend your energy Shane - we all know what a gift that is. I think the work happening in Utah is incredibly important and am very happy to have the opportunity to help Dr. Bateman in a small way. Thanks for doing it in a big way! They don't even know yet how much their administrative life is going to change.

Cort, as always, kudos and bravo dude!

Shelley
 
Hey Cort donation was made. I posted this great project on my personal FB acount. Cort can you share a bit more about CBS? Also the links to attachment 2194 and 2195 are not working....I hope this will go viral.
Marly
 
Yes, CBS is an active member of the Phoenix Rising Forums who has a very active interest in research. He's been a patient of Dr. Montoya's for many years and is participating in Dr. Montoya's studies as well as the Bateman/Light/SIngh XMRV study in Utah.

He has a very interesting case of CFS. As I remember he was up and down for quite a while - at one point appeared to regain much of his health - but when he tried to work he had such severe relapse that he almost died. He's disabled now and is able to 'work' in very small chunks. Dr. Montoya was able to isolate a interesting and unusual pathogen in him - I'm sure he'll be in here to provide it - that is causing all sorts of havoc.

(I have not been able to get right of those attachment tags - I'm not sure why they're there.)

With yours and others assistance it very well go 'viral' - a strange kind of thing to wish for from an ME/CFS patient -. but that's what we want - a 'high infection rate' - :) :)
 
Hi Everyone (and Hi Marly),

Thank you for such a great start, all the support and so many warm feelings for everyone. I know that Dr. Bateman is very appreciative of this effort (which would have never gotten off of the ground without Cort - just like so many other things he's made possible). I want to give a special thanks to those who are spreading the word beyond the Phoenix Rising community. I just received and e-mail from the OFFER accountant saying that donations are coming in (and I suspect they are dancing in the halls - for them this is much more than the money, its recognition of and appreciation for the years of work they've been doing with little fanfare).
 
Great! Thanks camas. OFFER, Dr. Batemans nonprofit patient support organization and the FFC are really kind of under the radar. They've put on great conferences, they're hooked in with the University there - hard to get universities interested in us - they have excellent meetings.... although, like everybody else, they're running on fumes - they've managed to get quite a bit done. They also really have a great video library if you want to check it out - they're a great group and it is a great cause. :)
 
Scott from the Fatigue Consultation Clinic reported that, as of 30 minutes ago (6pm), in just 9 hours the FFC had collected

$1020

in amounts ranging from $2 to $100 from the US and the UK. We're a third of the way there!

Everyone pat themselves on the back! I'm sure they're feeling the love over there in Salt Lake.

We've got 2/3rd's more to raise. Let's keep spreading the news and keep this baby moving and pull it over the finish line. Thanks everyone!
 
I've repeated this on the forum threads but it bears repeating here.

Thank you bel canto and thanks to everyone else - What a great first day. I can guarantee you that there is some dancing in the halls at the FCC (there's no room to dance in the lunch room). One of the concerns they shared was a fear of getting their hopes up as support for CFS research has been so hard to come by in the past.

I know they're really feeling the love right now (and they really do deserve it)!
 
My internet was out yesterday, so I missed the great send off, but have donated today. Thanks a whole bunch, Shane and Cort!

I look forward to the 9/11/10 Educational Conference for Providers and Patients. Anybody up to doing a webinar of that?
 
Thanks Organix, I hope they can do a video or webinar. THey have done video's of some events in the past.

I'll be on the conference - celebrating my birthday :)))
 
9/11??? I guess nobody in your life can have the excuse they can't remember the date, eh?

Hope there will some video or something for the rest of us.

Waiting to see what the total donation is up to....
 
Oerganix,

They have made video's of previous conferences available: http://www.offerutah.org/conferences.htm

I have suggested to the Chairman of OFFER's board that if it is feasible, a live webinar would be wonderful. I don't know about the finances and all of the technical obstacles but I do know that in the past 24 hours he's been quite impressed with this group of patients! And can you think of a better way to spend 9/11 than celebrating Cort's B-day by watching a the OFFER webinar and posting about it here on PR?
 
As of 10 am PST approximately 24 hours after we started this astonishing drive we're, (with a big $500 kick from the UK!) and everyone's generous responses, at

$2240

We're bringing it home!
 
ALERT!

We are either over the top or almost there. We have about

$2600


in donations in about a day and a half - an amazing total!

We also have a commitment from a donor to give us $650 in software. If that comes through -as we firmly believe it will - that will put us well over the top.

However -since we don't have it in hand - we are going to keep the drive open for a few hours more for people who would like to continue to donate. The worst thing that could happen is that we either return some of the donations or the FFC or OFFER finds another way to use them. (Not a problem! They do have the patient provider conference coming up and we've discussed doing a live web presentation or webinar. There are many options.)

Never having done this before, CBS, I and the FFC really had no idea how this was going to turn out. We know the financial costs CFS imposes and the rather technical nature of the project - building an information infrastructure for the research end of the FFC - could have been a hitch as well. We really had no idea how this was going to turn out.

Obviously everyone is ecstatic at how this turned out. It exceeded our most optimistic hopes

Thank You EVERYBODY .

If you want to give the FFC some breathing room, in case the software doesn't come through, or simply continue to support them, the Fundraiser will be open until 12am PST

We'll provide complete totals tomorrow. Pat yourselves on the back everybody!
 
Thank you!

The FCC research staff are feeling a bit stunned right now. They expressed concerns about getting their hopes up and the way that everyone came through was simply amazing.

I don't know how else to say 'thank you' except that I can promise you that every dime will be very much appreciated and we won't waste a penny. I know this was a real sacrifice for many of you (Kati, If you'd like, I can send you my recently read issues of "The Sun." It's a fantastic periodical filled with short essays, easier to read for folks with CFS!).

:hug::hug:Big warm hugs to everyone!:hug::hug:
 
CBS not to worry I don't read that much other than PR and papers related to ME/CFS. And keeping a close eye on the psych lobby to make sure they play in their sandbox not on ours.

The paper subscription came handy during the olympics but I can't keep up on a daily basis. (However it is great to have paper for the bottom of the bird cages)
So no worries there, I am not depriving myself of something essential.

Thanks for your work with Offer, Shane and send out salutations to the team out there.
 
"Excito!" (The Spanish word for "success", but it has excitement built in, no?)

An exciting success!
 

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