The Open Medicine Institute is fostering a new health care model by integrating direct patient involvement with a multi-disciplinary, big data technology approach to advance the understanding of complex diseases and directly improve outcomes. Linda Tannenbaum, Executive Director of the Open Medicine Institute
The Open Medicine Institute announced today they’ve received over $1,000,000 to investigate the genetic underpinnings of chronic fatigue syndrome (ME/CFS) and explore new treatments. One grant from the Edward P. Evans Foundation will fund most intensive exploration of genes and gene expression yet in this disease. Another from the Neuro-Immune -Disease- Alliance ( NIDA) will explore a promising herbal treatment using molecular profiling.
Gene Study
The OMI gene study will take a deep look at previously unexplored portions of the genome that impact the immune system
The gene study is particularly gratifying given the mounting evidence that, even with all its presumed subsets, chronic fatigue syndrome has a very strong genetic component.
Using newly developed techniques never applied to ME/CFS and featuring one of the top investigators in the field, the Evans Foundation grant will fund intensive investigations into the HLA regions of the genome, methylation and other aspects as well as whole genome sequencing.
Bedrock of the Immune System- The HLA Genes
When invaders enter the body they’re met by antigen presenting cells (dendritic cells, macrophages, some B-cells, etc.) that promptly gobble them up and then like warriors displaying trophies put a bit of them on the outside of their cells. They then swim to the lymph nodes so that T-cells can have a looksie. If the T-cells decide the APC’s have found a pathogen they mount an immune response that usually wipes it out.
HLA’s control which parts of pathogens are presented to the immune system.
That part of the cell that recognizes and then mounts the viral proteins on its surface is the HLA antigen. If the HLA displays the wrong part of the pathogen or doesn’t display any part of it, the pathogen goes on its merry way unimpeded by a major branch of the immune system. Without those little HLA messengers we’d be at the mercy of the pathogens in our midst.
HLA’s also encode portions of the complement system (one part of which is activated in ME/CFS), protect against cancers and may be involved in autoimmune disorders.
Several studies have suggest HLA problems may be present in ME/CFS. A 2011 study suggested HLA deficiencies were responsible for the low natural killer cell cytotoxicity in this disorder and a 2005 study suggested ME/CFS was associated with a specific HLA genotype.
The HLA genes, with their huge impact on immune functioning, are of major interest but the malleability that allows them to recognize virtually any pathogen, has made this portion of the genome particularly hard to characterize.
Enter Ron Davis – Uber Genome ‘Techonologist’
Enter Ron Davis of Stanford, Director of the Genome Technology Center at Center, of the pre-eminent geneticists of our times. More than just a geneticist, Davis is an inventor who holds over 40 biotechnological patents and has authored over 400 papers. The winner of the $500,000 2011 Gruber Genetics prize for his breakthroughs in the ‘development and application of recombinant-DNA techniques, if Davis can’t find a tool to do what he wants, his team simply develops one.
If Ron Davis and his lab don’t have a tool to explore the genome….they create one
Upon winning the Dickson Prize, Davis was cited for his “great positive impact on a broad swath of biomedical research”. The Dickson Foundation noted that he and his “students, postdoctoral fellows, and technicians in his laboratory have developed many of the techniques currently used in academic and industrial biotechnology laboratories”. Davis is clearly a new and very important asset to the ME/CFS research community.
THe HLA technology being used is newly developed and highly touted and particularly applicable since HLA codes for the highly variable, immune-related region of DNA. Both of these characteristics make them more likely than routine sequencing to show something of value in ME/CFS. Dr. Kogelnik
Now Kogelnik and Davis will be using their newly minted technology to explore a heretofore obscured part of our genome. Both Kogelnik and Davis believe this area is ripe for exploration in ME/CFS and if their hunch is correct, this study could open an entirely new window on this disease.
Methylation
Given the critical role of DNA methylation in gene expression and cell differentiation, it seems obvious that errors in methylation could give rise to a number of devastating consequences, including various diseases. The Role of Methylation in Gene Expression.
Methylation simply adds a ‘methyl group’ to strands of DNA but that little addition can change everything because that methyl group can determine whether an gene will express itself or not. The finding that highly methylated regions in the genome are mostly silent gave way to the realization that methylation played a key role in gene expression.
Through its ability to turn off gene expression methylation can effect many areas of the body
Epigenetics looks at whether something (aka methylation) came along to change the expression of the genes we are borne with. On May 16th, the CFIDS Association of America’s webinar on epigenetics will explore whether methylation or other processes have turned on or off key genes that exist at stress -immune response interface. McGowan, the CAA’s researcher, believes epigenetic mechanisms are disrupting immune responses in ME/CFS.
Methylation has also started off on a preliminary but promising foot with a 2011 CDC study suggesting that methylation and other processes may impair serotonergic neurotransmission, an interesting finding given the CFIDS Associations Biovista project finding that two serotonin effecting drugs (not yet named) may be useful in this disorder.
The OMI study is going to blast the field of methylation in ME/CFS wide open. With their focus on HLA and methylation genes the OMI will be taking a deep dive into two virtually untouched and very promising areas in ME/CFS genetics.
Others
Beside the HLA and methylation projects, whole genome sequencing will be applied to some individuals and many others will be the recipients of a focus on parts of the genome (inflammatory, immune, signaling. etc.) Kogelnik believes are in play in ME/CFS.
One part of the project will feature one of Kogelnik’s favorite techniques; contrasting the results of responders to Rituximab and valganciclovir and non-responders in an attempt to understand why these drugs area working in some individuals and not others. Finding genetic differences potentially gives Kogelnik a straight line to a biomarker.
By the time the study is done approximately 1,000 ME/CFS patients will have taken part. This kind of data gathering on such a grand scale is rare in ME/CFS.
Moringa oleifera Trial
The OMI will also conduct the first of what will hopefully be a series of studies examining untested but promising natural therapies. Called the ‘miracle tree’ Moringa oleifera has been proposed to having antibiotic, antitrypanosomal, hypotensive, antispasmodic, antiulcer, anti-inflammatory, hypocholesterolemic, and hypoglycemic activities but few studies have been done.
Medical researchers are very interested in Moringa olivera but few human trials have been done..
This is what Dr. Kogelnik had to say about the Moringa trial.
We had heard a number of promising but VERY anecdotal stories of recovery with this substance. Like many natural (unregulated) substances it was completely untested scientifically in ME/CFS. That combined with the claimed boosting of NK cell function (and the relatively low cost of doing a pilot with this substance) made it a great first target to illustrate how low-budget science can also be beneficial in this field and needs to be done. We hope to apply this method to other potential candidate substances as we move forward with MERIT.
Conclusions
The Open Medicine Institutes ambitious OMI-MERIT program for ME/CFS is off to a good start with this major grant. They aim to speed up the pace of ME/CFS research and treatment findings by applying a ‘big data’ approach. Expect more from the OMI soon.
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Thanks, Cort, for the further explanation of OMI. ‘Pathogens in our midst’ is something I have concentrated on for too long, yet understood this disease within that model. Yet, I always wanted to see the vulnerability some of us obviously have, and why some get M.E. ‘Light’ and others die. Genetics fascinate me, and hope to remember to tune into CAA’s lecture. This issue of genetics has everything to do with this disease and I find it a not too easy approach to understanding the whole model of an illness like M.E. I understand the emphasis on methylation, yet feel there is unbelievable, undiscovered information waiting to be brought up to surface, for our minds. I don’t remember much college studies on genetics, so I am taking a course to review. High school genetics was fruit flies out of control, and very easy to understand, yet that is so far back, all I can remember are the XandY formations. I truly am encouraged by this news, and feel that the OMI is definitely worth following, the best that I can! Thank God.
Thanks Mary,
Yes, things have changed alot since high school days and fruit flies! I think both methylation and epigenetics are pretty new topics.
That study didn’t just show high rates of heritability of chronic fatigue syndrome – it suggested that relative to other disorders the heritability was really high – higher than autoimmune disorders and perhaps similar to fibromyalgia.
This study should be interesting!
Lots of us with POTS and OI have been exploring the methylation pathways and mutations with our genes. We’ve had 23&me genetic testing and have some of our mutations figured out. Dr. Amy Yasko and Dr. Nancy Mullan are pioneers in the field of trying to address these mutations and getting the methylation pathways corrected. Dr. Nancy Mullan is doing a webinar on Tuesday nights to help us to sort out how this works and what to do when there are genetic mutations. I think that there is still a lot to be discovered about this and some more tweaking will occur before the formula is perfect. But, many of us are finding that addressing these issues are a big help in how we feel. Interesting that this is being looked into in regards to CFS. The original concept was to help autistic children and now – it is being found to help in many other areas.
Issie
Wouldn’t it be great if the study highlighted and documented those methylation problems? Thanks for the tip on the webinars.
Cort, this is all fascinating and exciting information. From a science and medical point of view as well as that of a ME/CFS patient I find this so interesting and promising. I can’t wait to see how this all unfolds (hopefully sooner rather than later). In the meantime, keep up the good work. I look forward to every word that you write. The amount of research that is now going on is so encouraging.
By the way, how can one get involved in any of these research projects? I have done the 23andme analysis and found that I have a number of methylation defects. I would love to explore this further.
Claire
Hi Claire,
I asked Dr. Kogelnik about this and he said, which really surprised me is that many of the patients for the gene study have already been chosen from their Biobank. The reason that surprised me is that I didn’t know they already had so many patients in their biobank! One nice thing about the gene study is that its going to be a quick one; the press release said it will take a year instead of three or four years it usually takes to spend that kind of money. They seem to feel some urgency which is always a good thing.
Thanks for your nice words. Hope you’re doing well in Canada 🙂
Thank you Cort for another timely and very interesting article. I emailed Linda Tannenbaum, Exec Director of the Open Medicine Foundation, and she said YES, please do send a card of thanks. Here is a group e-card that only takes a minute to sign…
1 MINUTE TO SIGN THANK-YOU CARD FOR FOUNDATION THAT GENEROUSLY FUNDED OPEN MEDICINE FOUNDATION’S GENETICS STUDY
Have you heard the great news? The Open Medicine Foundation just received a massive grant from the Edward P. Evans Foundation to study genetics in ME and CFS. This is a fully-funded, fast-tracked project that is scheduled to be completed in 9-12 months.
You can sign the card by clicking on the link here: http://groupcard.com/c/8W9nORILuaR/ol
THIS IS A STRATEGICALLY IMPORTANT FUNDING EVENT FOR 3 REASONS:
1) NEW FUNDERS: Each NEW philanthropy foundation that steps into the ME and CFS arena brings the possibility that they will tell their friends, and their friends will tell their friends. We desperately need more, bigger, and NEW funders for our diseases, so that we can get answers ASAP!
2) CONNECTIONS: With the involvement of the enormously well-connected Dr Ron Davis, a founder of the Human Genome Project, we have the potential to link with other big-time Silicon Valley philanthropists.
3) DESERVING, CREDIBLE RECIPIENTS: By funding an OMI-Merit initiative, we are seeing money channeled to some of the finest minds in ME research; and people who can cross-pollinate this research.
PLEASE SIGN THIS THANK-YOU CARD!
Please join us in showing our appreciation, to the Edward P. Evans Foundation, so they really feel that their philanthropy makes a difference, and so that our cause remains uppermost in their minds. (we have cleared this with Linda Tannenbaum, Executive Director of the Open Medicine Foundation ). You can sign the card by clicking on the link here: http://groupcard.com/c/8W9nORILuaR/ol . If you want to include your country, just add a comma after your name, and then your country.
You have until NEXT Friday, May 17 @ 11am before the card gets sent.
Thank you!
Great idea, Parvo!
That is so cool 🙂
I didn’t know Davis was a founder of the Human Genome Project – the guy really gets around…
Thanks…
Thanks Cort, and you’re right about Dr Davis; if anyone had connections, Dr Davis would. Plus, it’s one thing to have connections, but another to have Silicon Valley connections. I would not be surprised if Dr Davis was the catalyst for the Edward P. Evans Foundation funding the Open Medicine Foundation’s ME & CFS research. That’s why I believe it’s so important for our patient population around the world to SHOUT out our thanks, so they realize what a huge positive impact they have with this grant. Who knows, if their experience is positive enough, and they realize how urgent the need is (check out the heartfelt notes in the card), maybe they’ll do it again, or tell their philanthropist friends 🙂
The online Thank You card to the Edward P. Evans Foundation for their sponsorship of groundbreaking genetic research on ~1000 patients with ME and CFS now has 91 signatures from all over the world, including: Australia,Canada, England, France, Germany, Ireland, New Zealand, Scotland, The Netherlands… and of course from all over the USA.
In one minute, folks can sign the card here: http://www.groupcard.com/c/8W9nORILuaR/ol
If anyone would like to email or re-post the invitation to sign (my post above, or even this post), please feel free to do so. We’d especially like to get more countries represented, so when you sign your name, please add your country, so the Edward P. Evans Foundation knows how international their impact on ME and CFS research is.
You have until Friday May 17th to sign.
Thank you!!
P.S. Both the Open Medicine Foundation and Dr Kogelnik are really excited about this initiative.
Hi. I am having trouble getting the link to work. I have not been able to sign this card. Anyone else having trouble?
PS Claire, I am from Canada as well. Would you like to connect?
Cort,
This is fascinating—and probably even more fascinating to those of you with some knowledge of physiology and epigenetics! Thank you so much for your accessible translations of these efforts! I have to admit that I was pretty much lost in last week’s CFIDS webinar about the gut, in spite of my passionate curiosity on the subject. I hope to access the online video and listen again with the hope of assimilating it all. With that in mind, I am not planning to sign up for next week’s CFIDS webinar on methylation, but I do hope to access it online later. Do you know if that will be possible? Will you be providing a lay-friendly summary of the webinars?
Thanks for all you do!
Nancy
That last webinar was tough! (Particularly since I could barely hear it – I was in a coffee shop at the time). Actually the date on the webinar page http://www.research1st.com/2013/03/18/spring-series/#comment-44226 says its on the 9th but the date on the registration page says its the 16th…I hope to watch and report on it if I can…
Thanks Cort for your continuing information. Love the work on genetics, and the HLA genes, but, I am a little concerned about the money going to the OMI study on an Herb “Moringa Oleifera”. Why that herb? I am sure many of us have tried many herbs possible, I have. I do believe all the answers are out there, but I feel a herb or vitamin at this point is not the best use of much coveted grant money, but they did say because its a herb, they can do it cheaply. I am always a little suspicious, and the fact the pulled this herb out of their hats? I don’t know? I don’t care what I have to take, I just want to live again. I take 2100 mg of BHT daily, its the only thing that keeps me out of bed all day, in fact when I first started taking it at that high dose I had a Lazarus effect, I was 100% BACK after ten years. FOR AN INCREDIBLE 8 weeks I was back, so I believe with the right medication reguardless of how long we have been sick, we can have a 100% recovery. Even though I crashed after the eight weeks, I still am better than before.
Amazing story walking Dead – do you feel more preserved :)? How did you gloom onto BHT? I’ve never heard of using that before. That’s amazing..
Hey, for what I can tell the sponsoring group – NIDA – has experience with several people who have done very well on Moringa so they’re giving it a shot; a kind of short-term help, hopefully while they find out more about this disorder.
Thanks again Cort for keeping us informed. Just wanted to also say how thankful I am for all the hard work you do. I’m not feeling good at all today so what I write might be jumbled.
I have a feeling with OMI getting involved with our disease, something big is going to happen. Kogelnik and Davis seem like men who once they start digging into our illness will not give up because it will test their abilities.
Our disease has baffled the best CFS/ME doctors and scientists around the world. Some have come close to figuring it out than bang….nothing.
This disease needs a new health care model. Something different than before. Not sure if Kogelnik and Davis have been working with cfs/me for awhile??? I’ve never heard of them before. But what I’m hearing now i’m LIKING!!
Readyforlife
Hey Cort, I came across BHT in a bottle of a antiviral blend from The Fibromyalgia and Chronic Fatigue Center in Dallas. I went down the list off of the bottle, then researched each ingredient, and BHT was one of those ingredients. What I found was that BHT was created for aids, they like, many RX companies were fast tracking drugs. AZT was created, and left BHT with no purpose. The company had done trials with mice, and BHT killed or supressed the Herpes virus, and its a antioxident. It is a antiviral, and I have not had ONE COLD OR FLU since I started taking it,( I used to get sick all the time). My recovery time is quicker, and much less down time, I still am sleeping 12hr/day, but when I up I am up. Not laying on the couch all day, setting up. most of the day. Not well, but 25% better taking BHT.
The gene study sounds like it was made for my extended family. In our parents generation of nine children, all are like the energizer bunny. In their children’s and grandchildren’s generations of 40+ cousins, 5 of us have ME/CFS diagnosed and I believe a few more undiagnosed. What the heck happened between the generations to cause it? I hope this study finds some answers.
I wish you were in this study Nita 🙂
Cort, I have wondered if in my dad’s generation a gene is switched to “super on”, since that generation is very high energy compared to “normal”. Then for some in my generation the same gene is switched to “super off” since we are very low energy compared to “normal”. Those in my generation who do not have ME/CFS are still high energy like our parents. I wish someone would study our family and do it very quickly because my dad’s generation are now all in their 70s and 80s with two siblings deceased of the nine. …… Nita
Interesting idea Nita….for me, I wonder if there is default in detoxification that allows the modern world to wallop us a bit more.
In Marco’s upcoming blogs he’s going to propose that some genes in ME/CFS are turned and off in different people. I think its a fascinating idea.