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Very promising research from Dr. Kogelnik's Open Medicine Institute

My local CFS/Fibro support group hosted a fascinating lecture this Saturday from the director of the Open Medicine Institute (OMI), Linda Tannenbaum.  OMI is a San Francisco Bay Area-based research institute that was co-founded by Dr. Andy Kogelnik.  Many patients know OMI as the institute conducting the U.S. Rituximab trial.  They also work with ME/CFS researchers from around the world on an impressive array of research projects.

OMI Director, Linda Tannenbaum

Tannenbaum was an impressive speaker.  She is as "plugged in" to the state of ME/CFS research worldwide as anyone.  Her passion about ME/CFS is evident, and her bio from the OMI website gives a clue as to why:

As a health care professional and a parent of a patient, Ms. Tannenbaum joined OMI as Executive Director in order to focus her full-time attention on promoting and raising funds for collaborative medical research as well as setting up programs to help those suffering with chronic illness. With years of executive management experience as a Clinical Laboratory Scientist, Ms. Tannenbaum set up and ran a successful independent clinical laboratory for over 21 years. Ms. Tannenbaum left the clinical world to set up the Open Medicine Foundation because she has a passion to find answers via research. [emphasis added]

As a promise to their daughter, who has ME/CFS, Ms. Tannenbaum and her husband started their own non-profit, Neuro-Immune Disease Alliance (NIDA), as well as joined the board of Simmaron Research for the purpose of seeking out and helping to fund research for diagnoses and treatments for neuro-immune diseases. Ms. Tannenbaum is also a board member of the Los Angeles Breast Cancer Alliance (LABCA).

Part of Tannenbaum's job for OMI is to travel the world soliciting research funding from various deep pockets.  Judging by OMI's success in funding research projects, she is very good at it. Not because she has an overly sales-y demeanor, but because she knows her facts, cold. 

Summary of Hot Research Projects

The lecture consisted of an overview of promising ME/CFS research projects from around the world.  The basic theme was that this is an exciting time in ME/CFS research.  Never before has ME/CFS research had so many irons in the fire, or so many promising leads.  "Things are happening now," as Tannenbaum put it.  There's more worldwide collaboration among ME/CFS researchers than ever before--they're sharing data and ideas more than ever before.  

While the lecture wasn't limited to OMI's research, OMI's website has a good summary of the 10 projects that they are involved in, although not all are funded yet.  (I dare you to read that list and not feel a little hopeful.) 

I suspect that part of the reason Tannenbaum was willing to speak to us (none of us are wealthy donors, to my knowledge) was to drum up interest in participating in OMI's data gathering project.  Separate and apart form OMI's bio-bank, they are establishing a data platform called Open Med Net, which will collect vast amounts of patient-supplied data (medical records, survey answers, etc.) from volunteer patients.  

Tannenbaum described Open Med Net as a website portal through which ME/CFS patients can create an account, upload their medical records, and answer a series of surveys & forms.  Patients can use this portal to store all of their medical records online in an easy-to-access-&-organize format.  Essentially, OMI has an incentive to make the portal a  useful tool for patients in order to encourage high participation and, thus, more research data.  If, and only if, the patients checks a certain box, the records will also be available to ME/CFS researchers worldwide.  Otherwise, it's simply a free service for patients.

In the future, OMI plans to add further data-gathering options, like using a new wristband that automatically monitors and uploads the wearer's bio-medical statistics to "the cloud" several times a day for detailed longitudinal studies.  By gathering this unprecedented level of detailed information on a large cross-section of patients, OMI believes they will be able to draw conclusions that have never before been possible.  One of their goals, among many, is to finally define subsets of ME/CFS.  They truly believe that if enough data is gathered, "the answers are in the data."

Open Med Net will launch later this summer, and Tannenbaum encouraged the audience to spread the word to "every patient you know," because, the higher the participation, the better the research results.  

My Impressions

I wish I could summarize every topic that Tannenbaum discussed, but that would take too much time and space.  (See bullet points in next section for a few examples.)  But, I hope this anecdote will summarize the theme:  

I'm always interested in any information that helps me understand exactly how quickly science is progressing on neuroimmune diseases.  I have no doubt that science will eventually solve ME/CFS, but exactly how soon?  If it takes 50 years or more, I'm screwed!  If it takes 20 years or less, I may have some healthy years on the back end of my life.  The timing is critical.

This lecture left me with the impression that "20 years or less" is very realistic, if not likely.  (To be clear, Tannenbaum did not say this.  I'm reading between the lines). Things are happening much faster now than they ever have, not only because of research into ME/CFS but because of a growing wave of research into neuroimmune conditions in general, which will likely benefit ME/CFS.  Discoveries are being made at a faster rate, and each discovery leads to more discoveries.  The nexus of neurology and immunology is one of the few remaining frontiers of human bio-chemistry, and it remains poorly understood.  So it's becoming a focus of more and more researchers, and as their findings accumulate, the momentum builds.  The hope is that the momentum will continue to build on itself until progress becomes unstoppable.   

Bullet Points

Not to leave this post devoid of details, here are some bullet points about ongoing research, as related by Tannenbaum:

• The Stanford scientist who was responsible for mapping the human genome is now studying HLA genes (or working closely with people who are doing this work - not clear) to determine if ME/CFS has a genetic basis. In 8-9 months, he and his team should know whether genetics has anything to do with ME/CFS. And if it does, are there subsets?  Until then, we can be satisfied knowing that one of the top names in the field of genetics is working on ME/CFS.
• The follow-up Rituxan study in Norway is now fully funded, thanks in part to a crowd-funding effort (that I participated in!).  One of their goals is to discover why killing B-cells seems to help ME/CFS patients.
• In June or July, 2013, Dr. Ian Lipkin, through Columbia University, will publish new findings concerning evidence of unique pathogens found in the spinal fluid of PWMEs.   
• Since the 1980s, Dr. Dan Peterson has maintained a bio-bank consisting of over a hundred thousand samples of spinal fluid from PWMEs.  Based on OMI's initial success in a pilot study, a team of Australian researchers has received funding to look for a signature cytokine profile in the spinal fluids of PWME's.  This could be a big step toward identifying a biomarker. 
• NIDA is conducting a pilot study on moringa oleifera, a supplement that has recently shown some surprising benefits for ME/CFS patients.
• OMI has a new project in "proteomics," the study of the body's proteins. One biotech company has offered to study over 300,000 different proteins in 65 different PWMEs to look for abnormalities. (Biotech companies often approach OMI seeking to use OMI's patient pool to test new technologies). 
• Tannenbaum mentioned that when she was dealing with her daughter's medical bills, she hired some sort of insurance advocate that was able to recover over $40,000 from her insurers based on claims that were previously denied.  The advocate's fee was a small fraction of the recovered amount. While I didn't get the contact information of this person (Tannenbaum was giving it out), it's good to know that such people exist. 

Crowdfunding a Rituxan Trial in Norway

There's a crowdfunding effort spreading around the ME/CFS internet to fund a Rituxan trial in Norway.  Rather than try to explain the importance of this trial, I'll simply link to a Phoenix Rising article that does a much better job than I could have.

I donated a small amount today.  It's not much, but I think it's important that everyone pitch in whatever they can, even if it's a small amount.

IACFS/ME releases an excellent primer for doctors

The International Association for CFS/ME recently released "A Primer for Clinical Practitioners," intended to educate doctors on ME/CFS.   The main body of the document is about 25 pages in PDF format.  Within those 25 pages, the IACFS/ME summarizes most key topics, from terminology, to etiology (causes); from diagnosis, and treatment, to related conditions.

Based on its title, the primer is meant to be used by doctors only.  But I don't see why it shouldn't be given to anyone who needs to know more about ME/CFS.  The information is presented in a plain, straightforward manner.  Honestly, a fourth grader could understand this material.  Why not send a copy to your family, your employer, or anyone who you'd like to "get it"?

The IACFS/ME requests a $15 donation, but you don't have to donate to gain access to the document.  I did, but only after reading it and satisfying myself that it is a quality product.

If I had a criticism of the primer, it would be the omission of certain testing recommendations.  While Seciton 3:1 gives a good summary of immune system abnormalities, Tables 1 and 2 (laboratory testing)  don't mention tests of Natural Killer Cell activity, CD4/CD8 counts, or even antibody tests for related infections like EBV, CMV, HHV-6 etc.  But, overall, it's an excellent resource and something worth sharing with others.

I Donated $ Today

I donated a small sum to help keep the Phoenix Rising websites and forums going.  It wasn't much, but it's more important that every person with ME/CFS try to contribute something.

As far as donating to research (which is far more important, since ME/CFS research gets virtually nothing from the government or from drug companies), I haven't received a response to my inquiries to CFI.   I'm looking into a Plan B, and will probably either choose Mt. Sinai in New York (because it is a start-up and needs support), or Dr. Garth Nicolson's Institute for Molecular Medicine in Laguna Beach (because it is local and does important work.)

Donating To ME Research

On the heels of my last post, discussing why ME/CFS research is behind the times, I decided to donate funds to an ME/CFS research laboratory.   (Unfortunately, the best time to do this would have been last week, which would have allowed me to deduct the donation from my 2011 taxes. But the important thing is to support the cause.)

The question is, who to donate to?  What institutes are doing the best research?  I had only a vague sense, so I decided to post the question to the community at Phoenix Rising.  The responses were very interesting.  One poster noted that there are five research institutes, all of which are relatively new, and all of which are doing promising work.  There is also some collaboration between the five, which is often they key to progress.

In no particular order, the institutes are:

-Dr. Nancy Klimas' institute at Nova South University
-Dr. Enlander's Mt. Sinai ME/CFS Center in New York
-Dr. Peterson's Simmaron Research Center at Bond University, Australia
-Chronic Fatigue Initiative (CFI), which funds other researchers
-Dr. Bateman's OFFER institute at the University of Utah.

After researching these five institutes, I've decided to donate to CFI, although I may revisit the decision next year when it comes time to donate again.

My decision was based on CFI's broad range of initiatives.  They fund CFI research on a number or fronts, including a project called Cohort Recruitment which seeks to address the problem of the tainted research pool that I discussed in my last post.  This project involves collecting a core group of 200 research subjects who are confirmed to have true ME/CFS, to provide researchers with a pure sample group.  They are also creating a CFS "bio bank" of blood and tissue samples from the Cohort participants.

The only problem is, while the CFI websites states that they are funded by private donations, it does not specify how one can donate.  I've written and email to CFI and will update this information later.

1/24/12 Update:  I never received a response from CFI, so I'm moving on to Plan B.