Meet Ryan Prior

This story has been making the rounds of the ME/CFS forums.  A young would-be filmmaker and PWME, Ryan Prior, is making a film about ME/CFS.  His Opinion piece from USA Today College is worth reading.

Reactions to his effort seem to be mixed--everything from unfettered support to cautious skepticism. Anytime someone tries to capture this complex and poorly understood illness in single work, there's going to be concerns about under-representation of severity levels, origin theories, etiologies, symptoms, and treatments options.  In some sense, under-representation is probably inevitable.  But it seems Prior has been fairly successful at convincing people, so far, that he will present a broad picture of what this illness is all about.

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. 

A must-read blog post: Ampligen Saved My Life

A friend of mine published this moving two-part blog post about her experiences with Ampligen.  It's pretty fascinating for many reasons.  Her pre-Ampligen experiences again highlight how miserable ME/CFS can be for those who become severely affected.  No matter how many stories from severely ill patients I hear, I never get desensitized.  It's just astounding when you compare the realities against the public perception of "that little fatigue thing."

I also hadn't fully realized what a sea change it would be to get Ampligen approved for ME/CFS.  I mean, I knew, but I didn't really know.  I understood the significance of it possibly becoming the first FDA drug approved for ME/CFS. (*sigh*)  But, I didn't know, for instance, that people can retain the benefits for years afterwards.  I didn't know it could make that much of a difference for people.

Amino acid test results

As some of you know, I'm in the process of implementing a nutrigenomics plan based on the work of Dr. Amy Yasko.  Basically, under Dr. Yasko's plan, genetic testing (which I did earlier this year) is just the first step in a long process.  You create your initial diet and supplementation plan based on your genetic profile.  Then, after implementing that plan for a couple of months, you (and your doctor) order various tests to determine how to tweak your treatment plan.  You tweak the plan, then test again later, and further tweak it.  And so on until the test results all come up optimized, which can take years.  At that point, you should be feeling significantly better, in theory.  Probably not cured, but functioning at a much higher level.

I'm at the point now where I've implemented the so-called Step 1 (basic support) supplements and am looking for more information about whether and how to move on to the next step.  So I ordered a urine amino acids test (UAA), which is one of the common "next steps."  The test kit is ordered over the internet and the sample is then mailed back to the lab on ice.  I received my results this week.

First, the results are encouraging because many of the findings that my genetic profile would have predicted were confirmed by the UAA test.  This gives me a little more confirmation that there is, in fact, a verifiable process to this program.  The other nice surprise is that, even though the lab samples are tested at a lab in Illinos, they are then sent to Dr. Yasko in Maine, and she personally writes handwritten suggestions based on the results.  I didn't know that this was part of what I was paying for, so it was a nice added value.

The results themselves come in the form of a 6 page report, with the first 3 pages being the raw lab values, and the next three pages being a computer generated discussion of any significant findings. So while 76 different markers were tested, I'm only going to discuss the ones that were flagged for me.

Before I discuss the different supplements that I will be taking, let me talk about my concern about taking too many supplements.  Like a lot of PWME's, I sometimes wonder, when is enough enough?  But my answer for now is that (1) I'm going to give this program the time it deserves and reevaluate.  If I haven't significantly improved, then I will stop all the supplement madness.  But I need to discover the answer for myself or else I'll always be left wondering.  How long it will take, exactly, I don't know, but it could take up to a couple of years.  I'm OK with that.

(2) Also, keep in mind that when I add new supplements, I'm often discarding old supplements that either had no noticeable benefit, or very minor benefit.  I try to ensure that all of the supplements that I take at any give time fit into my supplement case.

How My Results Tell Me I Should Tweak My Plan

General impressions:  There is a contingent of ME/CFS patients and doctors who believe that the key to ME/CFS is gut dysfunction.  Probably the most famous proponent of this theory is Belgian doctor Kenny DeMeirleir.  This theory isn't too difficult to believe when you read the mountain of evidence stating that immune function begins and ends in the gut.  

I have always disregarded the importance of gut function with respect to my own ME/CFS because I don't experience strong gut symptoms like other patients.  But these UAA results change that.  Out of 11 "presumptive needs / implied conditions" listed on my UAA report, the most significant is "Abnormal intestinal microflora."  The textual descriptions of my various deficiencies all seem to point back to malabsorption of nutrients through the gut.  I was blown away by the number of times the term "protein malnutrition" was used, especially considering that my diet is certainly not lacking on protein.  The implication is that I have absorption problems.

As a remedy for general "abnormal intestinal microflora" I'm supposed to take a supplement called Vitaorgan (which is currently out of stock).  Among other things like amino acids, it actually contains "Immunoglobulin concentrate from bovine serum."  

Essential Amino Acids

High Taurine:  The first essential amino acid that is problematic for me is taurine (950 out of 170-1200).  This is a big one, and Dr. Yasko focuses a lot on getting taurine "under 50%" as an important milestone for those with the CBS mutation (like me).  In addition to the CBS protocol that I'm already doing (Yucca, charcoal, and reduced sulfates in diet), I'm going to add CBS+ RNA drops.  

Low Threonine - Next, I have very low threonine (60 out of a range of 60-230), which is an essential amino acid, critical to immune function.

"Threonine is an immunostimulant which promotes the growth of the thymus gland. It also can probably promote cell immune defense function. This amino acid has been useful in the treatment of .....multiple sclerosis [another neuro-immune disease] at a dose of 1 gram daily."  (DCNutrition.com)

The recommended treatment for low threonine, according to Yasko's plan, it a supplement called NaturoMycin.   NaturoMycin is indicated for "aiding the body's natural microbial balance."  I'm not yet sure how microbial balance helps with threonine levels.  I will research that further when I get a chance.  I'm also supposed to consider getting a CSA/GIF (stool sample) test to further narrow the reason for my dysfunctional gut.

Low Valine:  Another essential amino acid called Valine is also slightly low.  The indicated treatment here is to supplement with biotin (vitamin B7) and 1 drop of Adenosyl- vitamin B12.  Adenosyl- B12 is an indicated treatment for "bacterial support for aluminum and lead excretion" - again pointing to the gut. (APTR p.173)

Non Essential Amino Acids

Low Glycine:  My low glycine level of 590 out of a range of 400-1800 apparently means that I need to implement SHMT support.  SHMT is one of my genetic mutations (+/-), and support for it comes in a from of folate called "5 formyl THF" and lactoferrin (for regulating iron levels).  (APTR p.128)  I'm holding off on ordering these supports until I can research them further.  

Glutamate:  My glutamate levels look normal when I look at the range (15 out of 5-45), but the indication is for me to supplement with a spray that balances glutamate/GABA.  Glutamate is an excitotoxin that, in high levels, destroys nerves in the brain.  Since my glutamate level is in the lower half of the reference interval, I'm not sure why this is indicated for me.  Need to research.

Gastrointestinal markers

Ammonia:  I had already had my blood ammonia levels tested, which were very high.  This urine test confirmed that they are high, once again indicating that the CBS mutation is working to ensure that nutrients are being converted into ammonia and sulfates instead of much needed glutathione.  This is yet another indicator that I need to work on CBS supports.  

I also had high urea: 410 (150-48).  The combination of high ammonia and high urea apparently indicates I should be taking special capsules that HoliticHeal developed specifically for people with MTHFR A1298C mutation (for which I'm heterozygous), called MTHFR A1298C capsules.  One thing I don't like about this supplement is it contains Green Tea Extract, which induces Th2 immune response, but I may try it anyway.  But this supplement is a "long route" support and won't be added until later anyway, so I have some time.

Interestingly, my homocysteine levels are also very low:  0.22 out of a normal range of <5.  This is another indicator that the CBS mutation is affecting me.  Previous blood tests actually showed that it was a little on the high side of optimal, so I'm not sure how to reconcile these conflicting results.  For low homocysteine, I'm supposed to use an oral spray called resveratrol. (That's not a typo, it's really spelled that way.)  Resveratrol is an antioxidant that's found in various foods.  It's not clear why this is supposed to help low homocysteine levels.  Need to research.

Magnesium Dependent Markers

Low Phosphoetheanolamine, Phosphoserine, and Serine:  The low levels of these three amino acids apparently mean that I need more magnesium.  I'm already taking a magnesium supplement, but taking less than the bottle suggests.  Maybe I just need to increase my dose to the amount recommended on the bottle.  In addition, the official recommendation is to supplement with something called PS Complex (or PS/pe/pc) - an amino acid complex.  This supplement is part of a trio of three supplements that the Yasko plan calls "shortcut supports" (along with DHA and Methylation RNA) because they support a shortcut around one of the common methylation cycle defects.  

B6, B12, Folate Dependent Markers

Finally, there is a section of the report that lists B6, B12, and folate dependent markers. Three of these are extremely high for me, all way out of normal range.  Cystathionine is 65 (range: 7-40), 1-Methylhistidine is 330 (range: 75-240), and 3 Methylhistidine is 1100 (range: 50-900).  So here we've gotten to the meat of what I need to supplement the most -- the centerpiece of all methylation protocols -- Vitamin B12.  But it's frustrating because I'm not supposed to start with these supports until I address the CBS mutation. 

The first one, Cystathionine, actually indicates a deficiency in a form of B6 called P-5-P.  However, people with CBS up-regulation should to avoid P-5-P.  So I need to resolve, through further research, whether or not I'm supposed to take P-5-P.   

I'm also told that I'm supposed to ensure that lithium is balanced (through a hair metals test, or HMT) before working on B12.  This is a relatively inexpensive test and I have already ordered it.

For those also doing Yasko's protocol, I learned that Dr. Yasko will not be commenting on any test results during the month of July so that she can work on a revised version of her book.  This is good news, as I've noticed lately that some of the information in her current version of the book seems to have been superseded or revised by newer information on her website.  It will be much easier to have all this information in one place.   

Conclusion

With every new test, there are more questions than answers.  But, there are only a few ME/CFS patients that I am aware of who have truly stuck through this process and had the patience, functionality, and financial ability to do it fully.  Those few people report they are doing significantly better.  So it's my hope that, despite a steep learning curve, this will all eventually begin to come together and lead to improvements that can be verified by tests and confirmed in how I feel.