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. Bateman’s Fatigue Consultation Clinic is Right in the Middle of Some Really Critical Research
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 patients for several important studies including Dr. Light’s exciting muscle receptor study (see Surprise of the Conference) and Dr. Singh’s 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 t 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 today’s demands (using the day before yesterday’s technology – more accurately, 1990’s technology). It’s noFCC’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), 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 we’ll 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 Attachment 2195revenue each time 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 one of the few clinics in the US devoted to ME/CFS. She charges such absurdly low fees and Attachment 2197spends 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 isn’t the type of person who spends time or energy promoting herself. She didn’t 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. Attachment 2198Luckily their monetary needs are quite 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.
- 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)
- 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.
- On September 11, 2010, OFFER is conducting a unique educational Conference for Providers and Patients. Click here to check it out.
- Check out OFFER – one of the best little ME/CFS websites with an extensive collection of conference video’s
Grand Total – $2942
We will be updating you regularly about the totals raised. For more discussion on this project click here.
* 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
Dr. Klimas referred to FFC/OFFER’s network of research, treatment and education as our first real Center of Excellence and reported her surprise at the ‘intense interest’ she’d 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.
By CBS and Cort