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. 

Need some optimism for a change?

The linked video offers a nice bit of hope for our chances of solving ME/CFS and other related neuro-immune diseases.  It basically says that medical treatment based on one's genetic profile is the future and has a good chance of leading to breakthrough developments.  While the video appears to be an advertisement of sorts for Dr. Kogelnik's Open Medicine Institute, it brings together some big names in the ME/CFS research world to comment on their hopes and goals for the future.

http://www.youtube.com/watch?v=bIX0kl2MRcY

My one year blog-iversary

It was one year ago today that I launched this little blog.  A year and 147 posts later (and a few unfinished drafts) and I'm lucky to be still at it.  Of course, at the time I started, I was hoping that I would never make it this far because I'd be cured and move on with my life.  But barring that, I'm very fortunate and happy that I've had a chance to connect with so many other great people through this blog and other ME/CFS websites.

Looking back at my first post, I wrote about all the reasons I chose to start this blog.  Most of them were personal--everything from keeping my immediate family informed to making a record of my research.  Have you ever been researching an ME/CFS issue and suddenly gotten a feeling of deja vu?  Then you read a little further and you realize, "yes, yes I've definitely been to this webpage before.  I'm going in circles; I'm relearning things I've already learned"?  Well, that was another reason I started this blog; to keep track of what I'd already learned.  It was sort of my ME/CFS "Pinterest" account, before I had ever heard of Pinterest.

My point is, all my reasons were, at first, personal.

A year later and there's this whole new dimension to blogging that I didn't expect: connecting with great people.  There are so many smart, interesting, capable people with ME/CFS, and I'm always amazed at how willing they are, generally, to take the time to express concern and compassion and to share ideas with someone they've never met in real life.  So I want to thank all of you who I've met, not just through my blog, but throughout the ME/CFS internet.  It's been real.

Pride in Small Accomplishments (The Black Ink on My Balance Sheet)

The other day, my wife came down with a moderate cold or flu.  Because it wasn't a severe illness, she went to work anyway.  Midway through the day, I received a text from her that said, "I have a new found respect for what you do.  Even simple tasks are tough when you're sick."

My wife's text validated a vague attitude I'd fostered since getting sick last year:  a sense of satisfaction in accomplishing tasks that I previously took for granted -- tasks like washing the dishes, making the bed, pulling a few weeds, going to work, or changing a diaper.  Fifteen months ago, these things were just mundane chores.  They barely registered on the satisfaction scale.  But somehow the addition of a little adversity in the form of ME/CFS rendered them 10 times more satisfactory.

I'm not sure exactly why these simple tasks bring more satisfaction, but I have a couple theories.  The simple explanation is that the amount of satisfaction in completing a task is proportional to its difficulty.  Since ME/CFS makes nearly any task more difficult, it also makes nearly every task more gratifying.  But I think there's more to it than that.  Perhaps it has something to do with the pleasure of defiance.  ME/CFS comes into your life and tries to dictate every aspect of it: what you can do, when you can do it, and for how long.  To the extent one can do so safely, it just feels good to fight back and regain some measure of control.

As someone who's often trying to find a the positives among ME/CFS' many negatives, I count this new sense of satisfaction as a significant offset.  Like most of the positives I find, it won't fully offset the negative, but it brings me partway back to whole.  If I were to assign a score to to it, I might say that the increased difficulty carries a score of -10 points, but the increased satisfaction gives +6 points back.  In the same way, I try to think of the other effects of ME/CFS on my life in terms of their net effect.  There's a tendency sometimes to only focus on the negative side of the balance sheet because it's often the most obvious.  I'm finding that with more time to reflect, the positives gradually materialize.  And when the positives and negatives are balanced out, the net effect of ME/CFS isn't as bad as I'd feared, say, 7 or 8 months ago.

A key caveat here is that, in trying to accomplish whatever I can with ME/CFS, I have to make sure I'm not hindering recovery.  There's no satisfaction in damaging my health, and admittedly, I'm still struggling to pinpoint where my crash threshhold is -- something I don't think I'll ever nail down perfectly.

 

Methylation cycle testing, and some "bright-side" musings

Pretty soon, I'll be off to Hoag Hospital to get blood drawn to send to Health Diagnostics laboratory in New Jersey.  They'll run a methylation panel, which essentially tells you how well your body is eliminating waste from the blood stream, among other things.  It is thought that defects in the methylation cycle are a key part of the problem for people with ME/CFS. Apparently Health Diagnostics is the only lab in the country that runs this particular panel.  It will be an interesting experience: This is the first time I'll have ever shipped my blood across the country.  I never thought I'd be doing that.

But in the mean time, I was thinking of two more things that I can look to as the "bright side" of my illness.  Granted, they don't compare to having my health, but I try to focus on the positive.

1.  My electric bill has been about half of what it was in previous summers.  That's because, with my lower body temperature, we don't need to run the air conditioning.  We simply keep the windows open.  My wife was never as sensitive to the heat as me, so she doesn't mind keeping the A/C off.

While I originally got sick in the middle of last summer, I was still in the acute stage of the illness, so my body temperature hadn't dropped yet.  This summer we're starting to see the savings, which has already been in the hundreds of dollars, and could be in the thousands by year's end.


2.  I have a lot of favorite items of clothing lying around and in storage which, over the last five years, I've outgrown -- especially as I packed on weight around my torso.  But I held onto these clothes anyway, perhaps because of their sentimental value or because they "just don't make 'em like that any more."  


Now that I've lost 30 pounds because of the CFS, I'm suddenly able to fit in all these clothes again.  I love it.  


I actually think my ideal weight is somewhere between my current weight and what I weighed just before I got sick.  I wouldn't mind gaining about 15 pounds back.  But for now, I'm just happy to give these old comfortable clothes a second go-around.  

Ridiculously optimistic, bright-side post # 4

I'm introducing a new theme to the blog today.  For better or worse, I tend to be a relentlessly optimistic person; the type who seeks to find the "bright side" of even the most frustrating situations.  I occasionally have these positive thoughts with respect to ME/CFS.  (Yes, there is a bright side there sometimes.  You have to look very hard, but it's there.)  So, I decided to start blogging these points periodically, under the tag "Ridiculously optimistic, bright-side post #__", or ROBP for short.

I figure, there are already plenty of blogs that seek better awareness of ME/CFS by highlighting the seriousness of our illness.  Those bloggers fight an important fight, for which I respect them immensely.  But I feel that, in staying true to myself, and true to the very title of my blog "Quixotic," I need to focus on the bright side of things.  As the negatives aspects pile up, I think it's important to remember that there are some positives to help balance things out slightly.  In that spirit, I am retroactively designating three old posts as ROBP numbers 1, 2, and 3.

And here, my friends, is number 4:

I'm not sure how to put this... Um... Hopefully we can all be adults about this so I'll just come right out and say it.  I'm 1000% less flatulent than I used to be.  Undoubtedly, this is due to my change to a low carb diet.  But, I mean, wow!  I hardly ever have the urge to pass gas any longer.  I didn't even know that was possible!  My wife thanks you for that, ME/CFS.  I thank you for that.  That's got to be a sign of better GI health, doesn't it?

How ME/CFS puts things into perspective

Ridiculously optimistic, bright-side post # 3

I woke up yesterday morning feeling surprisingly well.  If you don't count the raging sore throat, I'd rate my energy level at about 75%--which, coming in the middle of my latest crash, felt more like 175%.  It was early, about 7AM, which is my favorite time to go at the beach.  The light is at a low angle and the ocean surface is calm and glassy.  In a rare moment (these days) of spontaneity, I proposed that we (my wife, baby, and I) go to the beach.

Up until a certain point, the morning unfolded perfectly.  We had the beach to ourselves and I felt the best I'd felt in weeks.  We filmed my daughter as she crawled across the beach and, for the first time in her life, examined, with great wonder, handfuls of this strange pale powder called sand.

After about an hour of this, I decided that we'd better head for home.  I didn't want to push it.

Back in the car, I put the engine in reverse, looked over my shoulder and began backing the car just like I've done probably 10,000 times in my life.  We suddenly heard the sickening screech of metal on concrete.  I knew instantly what had happened.  I said to myself: "Remember that concrete post you saw near the driver's side fender when you pulled in? The one you told yourself to be careful of?....you just hit it."

Let me be clear that I was backing up very slowly at the time, so there was no issue of injuries to my family--thank God.  I don't think we even felt the contact so much as heard it.

My wife and I sprung from the car and inspected the damage.  It was as bad as I'd feared: the front left fender and bumper now have 2 foot long gouges; the type of damage that tends to draw people's eyes when they walk or drive past your car.

For the first ten minutes of the aftermath, I acted pretty much as I always would have in this scenario: angry and a little depressed.  In my mind, I broodingly reviewed the sequence of events that led up to the moment of the incident, wondering which details, if changed, would have avoided this outcome.

Before ME/CFS, I'm certain this period of anger would have lasted several days before gradually fading into a sort of resigned acceptance.  But I have a different perspective now.  By the time we reached home 5 minutes later, I'd already made my peace with the incident.  Unconsciously, I'd acknowledged that there are so many things that are so vastly more important that the aesthetics of my silly car.  I simply didn't allow the incident to ruin an otherwise perfect morning.

I doubt I would have been capable of this kind of self-control prior to ME.  It has truly changed my values and changed the way I react to certain situations. In a sense, I think it has matured me by about 30 years in the span of 9 months.

At least I don't eat like THIS anymore...

Ridiculously Optimistic, Bright-Side Post #2

I've been keeping a health log since September, before ME/CFS was even a faint suggestion in my head.  At the time I started it, I was simply trying to find something, anything, in my daily routine that I could connect with my ups and downs.  It would still be a couple more months before my doctors and I suspected ME, and another month or two before I changed my diet.

A few days ago, Mrs. Calvin and I were winding down for the evening, each propped up against our sides of the headboard.  She was finishing reading The Help and I was clicking away at the laptop, updating my health log.

As I finished updating my log, I glanced back at those early months.  Looking at the "Food" column, my eyes bulged.  I began to laugh.  This caught Mrs. Calvin's attention so I read some of the entries aloud to her, and she laughed to.

How is that in the span of 5 months, I'd changed my habits so drastically that the mere mention of my old habits induced laughter?  While I doubt it will be as funny to you, readers of this blog - all three of you - I invite you to judge me anyway.  These entries are cut and pasted without edit.  (Semicolons separate breakfast; lunch; and dinner):

9/7:  Bagel; Taco Bell chalupas; orange chicken from Panda Express 

9/11:  Oatmeal, frozen breakfast burrito; peach, 2 ice cream sandwiches; steak & enchilada for dinner with Horchata.

9/12:  Breakfast burrito, Motrin; (skipped lunch); meatball sandwich and french fries.

9/13: Cottage Cheese; breakfast burrito w/ bacon; Rubio's Big Burrito Especial w/ chips for lunch; pizza with pineapple.

9/15: Breakfast sandwich w/ ham and cheese; apple, peach, nachos, peanuts; hamburger casserole & sourdough toast, apple cobbler

The list goes on and on like this.  My biggest downfall, like many Southern Californians, was Mexican food - or rather, Americanized Mexican food, where each burrito is a rice and bean filled carbohydrate bomb.  No wonder my candida antibodies were off the charts.  


(Normally, Mrs. Calvin would have stepped in to ensure that I ate healthy for at least one meal a day when we were home together, but she happened to be recovering form a C-section at this time.)  


Even now, only 5 months later, that list seems revolting to me.  So, at least I'm not slowly killing myself with that junk any longer!

10 ways ME actually **saves** me money

Ridiculously Optimistic Bright-Side Post #1

Every once is a while, I begin to worry about the cost of all my dietary supplements.  On top of that, I remember all the doctor's office co-pays and prescription co-pays and it starts to stress me a little.

At times like that, I have to remember that life before ME was undoubtedly more expensive.  I challenge other PWME's to think about how expensive their lives were before ME.  Here are just a few of the costs of my former lifestyle that have been reduced or eliminated -- which more than make up for the additional expenses.  (I do understand that many PWME's are unable to work, and that certainly complicates finances, to put it mildly.  But for now, I want to look at the expense side of the equation only.)

1.  Liquor   Order a bottle of wine at a restaurant and sometimes it's half your bill.  Even a glass of house wine is sometimes $10 or more.  A 12 pack of any decent beer runs $20.  Not a problem for me anymore.

2.  Fancy coffee drinks.  My days of ordering $5 venti cappuccinos or $4 chai lattes are over.  My doctor said, "nix the caffeine."  And you know what?  I don't really miss it.

3.  Other beverages.  They say that restaurants make their profits from beverage sales: sodas, lemonades, teas, sparking water.  Well, not from me anymore.  I'm not supposed to have any drink that's sweetened with anything other than stevia.  So now I drink only water at restaurants.

4.  Travel costs.  I don't drive as much because fewer activities are "on the table."  My wife and I have also gotten better about asking friends to come to us.  With gas prices averaging about $4/gal in California, this saves a ton.  It also puts less wear and tear on my car.

5.  Recreational costs.  Personally, I had a bad habit of spending (some would say, frivolously) on upgrading my sports equipment.  I always seemed to be shopping for a newer and better surfboard or snowboard.  At $500 to $800 apiece, this wasn't a cheap hobby.  Not to mention the cost of ski lift tickets (around $80/day).  Don't get me wrong, I'd return to my former lifestyle in a heartbeat if I could, but at least I'm spending less money.

6.  Gym membership.  There's $40 per month ($480/yr) more in my bank account.

7.  Desserts.  Whether it's ice cream sandwiches from the freezer at home, or $12 creme brulee at restaurants, I don't eat them anymore.

8.  Entertainment.  I'm certainly not cutting entertainment out of my life, but I probably won't be going to as many public concerts or movies, especially if I'm in the middle of a crash.

9.  Other healthcare costs.  The changes I've made to my diet will most likely avoid other health complications as I grow older.  My diet before ME was truly atrocious, but I hadn't yet realized it.  I believe it would have eventually led to other health problems.

10.  Impulse purchases.  In general, I'm much less likely to be "out shopping," and so less likely to make one of those foolish impulse purchases that I'd regret later: like a rice cooker or a ridiculous looking track jacket.

I'm sure there are more, but these 10 alone are more than enough to offset the cost of supplements and co-pays.  So I'm not going to worry about it any more.  Besides, what could be a more worthy expense than something to benefit one's health?  Now I understand why my grandparents always said, "...the important thing is you have your health."