1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Leptin
Andrew Gladman reflects upon the recent IACFS/ME conference and the buzz surrounding a small molecule, leptin.
Discuss the article on the Forums.

The 'Optimize Dr. Bateman's Research' Fundraiser

Discussion in 'Action Alerts and Advocacy' started by Cort, Apr 21, 2010.

  1. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    428
    Raleigh, NC
    FFCLogo..jpg 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 on other studies. - 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

    Lucinda-BatemanFF&#6.jpg 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 FFC Fundraiser for CFSpatients 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 today’s demands (using the day before yesterday’s technology - more accurately, 1990’s 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 FCC_Data_Screensh&#11.jpg 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 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 FFC Fundraiser for CFSone 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 FFC s - one of the T410..gif 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 A63-1L..gif FCC's data structure is struggling. Luckily 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.

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

    * All donations are fully tax deductible. Donations are processed through OFFER. Please note that this remarkable 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/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.



    • Check out OFFER - one of the best little ME/CFS websites with an extensive collection of conference video’s.


    By CBS and Cort
  2. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    428
    Raleigh, NC
    I just got this from Pat Mayer on Facebook:
    and she's right - it seems like everyone is asking for money right now and they're all good causes. I think the money we contribute to Dr. Bateman will go far, though, because it fills a big hole in her practice.... When CBS did this with a department in Stanford their productivity zoomed up. They were astonished at how much more money they brought in because they were able to keep track better. Of course, on our end, Dr. Bateman will be able to figure out better what kinds of patients do better on what kinds of treatments; that is she should be able to better discern what different types of CFS patients there are. She's already very good at doing but its impossible for the human mind to keep all this data together and figure it out - that's why we need good databases.;)
  3. dancer

    dancer Senior Member

    Messages:
    156
    Likes:
    16
    Midwest, USA
    Great article, Cort. I sent in my donation. I appreciate hearing about a specific tangible need where all our "little bits" put together can really make a difference.
  4. gracenote

    gracenote All shall be well . . .

    Messages:
    1,508
    Likes:
    42
    Santa Rosa, CA
    It would be great to see a running tally from OFFER as to what is being raised.
  5. CBS

    CBS Senior Member

    Messages:
    1,356
    Likes:
    216
    Western US
    Hi Gracenote,

    I agree. One of the issues that Cort and I wanted to work out was ensuring that all of the donations to the FCC Research Fundraiser were tax deductible (they are!). This meant going through a 501(c)3. OFFER was the perfect candidate as they are registered charity and they will be donating the receipts to the FCC Research Department (they are two separate entities). The down side to this arrangement is neither Cort nor I have direct access to a running tally of contributions. We will be receiving updates from the OFFER volunteers (or their web-master) twice a day. I'm anxiously awaiting the first total myself.
  6. CJB

    CJB Senior Member

    Messages:
    743
    Likes:
    387
    Oregon
    :Sign Good Job: Cort and Shane and everyone else involved. Very exciting.
  7. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    428
    Raleigh, NC
    Thanks CJB - I hope we can get it done - love to be contributing this way. She's done such darn good job over there. Who would have thought Nevada and Utah would have so much activity going on? She's involved in both the Light/Singh XMRV and the CFIDS Glaxo-Smith Kline studies....as well being a longtime Ampligen hub... (Wouldn't it be great if Singh turned out to be a CFS researcher? She's in tight with Dr. Bateman and she's got a great reputation. She could be mining Dr. Bateman's patient base for years..)

    Anyway. Dr. Bateman's got a lot of good data floating around in and out of her stodgy old computers....Time to put that data to work. :)
  8. CBS

    CBS Senior Member

    Messages:
    1,356
    Likes:
    216
    Western US
    Another great connection here is Ila Singh and Columbia (Stephen Goff). Goff is a retrovirologist at Columbia and he;s been playing with XMRV for decades. Dr. Singh used to be at Columbia and is still an adjust prof at Columbia as well as the Associate Medical Director, Hepatitis/Retrovirus Laboratory at ARUP labs (http://www.aruplab.com/AboutARUP/MedicalDirectorsConsultants/index.php?id=55).
  9. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    428
    Raleigh, NC
    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!
  10. Stuart

    Stuart Senior Member

    Messages:
    136
    Likes:
    6
    Did anyone do a trade study or statement of work for the system requirements?

    I don't see software or any DB work involved, just two pieces of barebones hardware?

    Do they have an Electronic Health Record system?

    Software is often much more expensive than the hardware.

    If they are DIY types with dedicated IT staff, they might go opensource, here is a quick example http://en.wikipedia.org/wiki/List_of_open_source_healthcare_software

    The screen shot looks a bit Microsoft Access like :eek:

    Is the hardware just to speed up the OS/DB software they are currently using?
  11. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    428
    Raleigh, NC
    Spot on Stuart! That is Microsoft Access and and a software upgrade is coming with one of the computers I believe. I'm sure CBS can update us on the technical aspects.

    To my knowledge they don't really have an IT staff member; they do have one member of the staff who's at least knowledgeable in that area (and has been yearning for a change) - that's the person CBS is working with I believe.
  12. Kati

    Kati Patient in training

    Messages:
    1,812
    Likes:
    855
    It is wonderful that the community is getting together for a project like this, it feels a little bit like WE are part of the research. Thank you Cort and Shane.
  13. CBS

    CBS Senior Member

    Messages:
    1,356
    Likes:
    216
    Western US
    Hi Stuart,

    Thanks for your questions and interest. I can see that you've also done this before. The short answer to your question is yes. We've looked at their electronic Health Record System and will be using some of the software that system is using. The EHRS is separate from the Research Dept. but there is some overlap. The subject tracking system could integrate with the EHRS but for security/privacy reasons, as well as ease of programming, we would probably do an occasional data dump triggered by some action such as a query.

    Some of the software costs were built into the prices you see. They aren't listed in any detail here.
    Yes but as noted above, that's essentially separate from the Research Dept side a this time. It will probably stay that way for the time being.
    They have software that is used for the EHRS. We'll be using that to the extent that is practical.
    Thanks for the resource list. Dedicated IT staff? They have IT support for their network and the EHRS. Other than that, they don't have three fully functional chairs when for their research coordinators and myself when I stop by (they usually insist that one of them uses the stool while I get a real chair when I visit). These databases aren't that complicated. The idea is to develop something that there research coordinator might be able to make minor changes to while I'm available for guidance and review. I'm not in good enough shape or have the energy to do anything too much more than focus on the functionality of the software/database.
    Not to worry, that's just the front end and even that may be temporary depending upon issues as we work through them. We need to keep this as user modifiable as possible (also trying to get something up and running ASAP and we'll make it pretty down the road). Their research coordinators are very interested in learning to make minor mods as needed. I'd like them to have a solid understanding of what the database is doing and some capability to make those mods. I'll be there to hold their hands. We'll see how things go before making things too complicated.
    The hardware is to have reliable hardware with more than just one USB 1.0 port and a screen that you can bump and not have it go blank. This particular hardware will allow us to use some software that otherwise would be out of the question. It's also important that they have a secure/robust machine to take on the road (with Powerpoint) as well as a set up that they can use comfortably for long periods in the office. The estimate also includes a service contract for the hardware so that they don't have to worry about a hardware failure (that they couldn't afford to fix) bringing this whole thing to a screeching halt. Once we have the funds in place, I anticipate doing some wheeling and dealing on things like the service contract and peripherals. If we can bring those costs down I suspect we'll buy a third chair or a keyboard tray so that in five years they won;t have developed carpel tunnel. :Retro redface: Seriously, right now things are pretty bare bones.

    Lastly, a comment on Cort's post and who I'm working with. Most of my time is spent with the two research coordinators. One does more of the patient screening and phone work. The other does more of the back end data management. These distinctions aren't rigid, more a description of emphasis. Dr. Bateman is involved as we make decisions about specific database content (medical Hx, symptom data) and end user functionality such as search capacity and reports.
  14. CBS

    CBS Senior Member

    Messages:
    1,356
    Likes:
    216
    Western US
    I just wanted to thank everyone - 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)!:hug::hug:
  15. SeaShel

    SeaShel Senior Member

    Messages:
    111
    Likes:
    0
    AZ
    Here's hoping that enough comes in to do all of the ergonomic things Shane mentioned and then some. We all know how important comfort and taking care of our bodies is and I wish those things for the great folks at Dr. Bateman's office.

    Think I'll go see if I can't find something to sell on eBay to send more money ..... I think I have an old ergo keyboard around here somewhere, that would be apropos!

    Shelley
  16. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    428
    Raleigh, NC
    Thanks Shelley, its a bare bones operation over there on the Research end. CBS told me if you bump one of the computers the screen goes blank! The furniture is from Thrift Store Central - and it doesn't sound like there's much of it :) (And here she is doing this potentially game-breaking research with Dr. Singh and Dr. Light - welcome to the world of CFS!). Its not just us who has it bad....the researchers do too!

    We're all in the game together :)
  17. oerganix

    oerganix Senior Member

    Messages:
    611
    Likes:
    4
    Thanks Shane and Cort. It feels good to donate to someone you know will put the money to good use right now.

    The OFFER site also has a link to Dr Bateman's webinar from earlier in the year, for those who missed it.

    Looking forward to updates on the total donated...
  18. SeaShel

    SeaShel Senior Member

    Messages:
    111
    Likes:
    0
    AZ
    I just remembered that I have a check coming from my last blood draw for the Tufts genetic study, and I had told frenchtulip months ago that I would look in to sending it to OFFER. I'm glad my brain kicks in once in awhile! So, I sent that $$ on it's way. Stretching those research dollars!

    Then I called my former husband and told him of the importance of this, and he's making a donation also. Yay for him!

    I posted this fundraiser on my FB yesterday and told people that even $5 would make a difference. Hopefully some of them stepped up.

    I hope that at the second update today we're at the goal plus a few benjamins more for some good chairs.

    (Can you tell I'm all excited about this? It's giving me something else to think about other than my son that left for Army Basic Training last week. My Mom heart is hurting and missing my (21 year old) "baby".)

    A standing O and whoot whoots to Shane and Cort!

    Shelley
  19. CBS

    CBS Senior Member

    Messages:
    1,356
    Likes:
    216
    Western US
  20. CBS

    CBS Senior Member

    Messages:
    1,356
    Likes:
    216
    Western US
    Shelly,

    Thank you so much. It feels wonderful to be part of such a wonderful comunity! We just got a new update on the total so far:

    $2,240.00

    (which included one very generous donation of $500 from someone in the UK!)

    Now I'm dancing in my PJ's:victory::victory::victory::victory:!

See more popular forum discussions.

Share This Page