Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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The End ME/CFS Project: History Taking Root

Discussion in 'Phoenix Rising Articles' started by ClarkEllis, May 6, 2015.

  1. ClarkEllis

    ClarkEllis

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    ClarkEllis submitted a new blog post:

    The End ME/CFS Project: History Taking Root

    Clark Ellis spoke with Dr. Ronald W. Davis and Linda Tannenbaum about the End ME/CFS Project ...



    History


    [​IMG]
    The history books record that in the nineteenth century Louis Pasteur formulated a “germ theory” of microbes as the causative agents of disease, and thus revolutionized medicine. His findings, along with his contemporary, John Snow (who linked cholera to infected water supply), changed the way we thought about disease causation, putting the previously popular miasma theory to bed.

    In 1983 Robert Gallo and Luc Montagnier independently discovered the causative agent of AIDS, the retrovirus later named HIV (human immunodeficiency virus) and created another paradigm shift which legitimized the illness.

    The person who cracks myalgic encephalomyelitis/ chronic fatigue syndrome (ME/CFS) is going to go down in history, and history will view the disease armed with the knowledge of what this disease truly is. The broken ideas that it displaces will go right onto the historical scrap heap, along with their associates.

    History Taking Root


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    A few of the Great Minds involved

    A new research consortium was recently launched by the Open Medicine Foundation (OMF) supported by several of the world’s top scientific minds. Under the guidance of world-renowned geneticist Ronald W. Davis, PhD, the End ME/CFS Project is a movement aimed at blasting ME/CFS research into the mainstream. Its stated goal is to “understand the disease at a molecular level, finding diagnostic markers, effective treatments, cure and prevention.”

    An impressive scientific advisory board has been formed, which in addition to Dr. Davis, includes three Nobel Prize Laureates — James D. Watson, famous as one of the co-discoverers of the structure of DNA; Mario Capecchi, famous as one of the co-creators of the method to create knockout mice; and Paul Berg, famous for his pioneering development of recombinant DNA techniques.

    As if that weren't enough, there are several other distinguished scientists on board from a variety of backgrounds, including immunology, neurobiology, physiology, inflammation and the brain. Andreas M. Kogelnik, MD, PhD, is a well-known ME/CFS medical expert and founder of the Open Medicine Institute.

    The makeup of the board clearly demonstrates that this project is different from the others. Attracting the participation and expertise of these figures is in itself an impressive feat, but there are plans afoot for a $5 million a year biological research programme.

    The scientific revolution that we so desperately need in ME/CFS research may already be taking root, and Dr. Davis and his team are in with a very good shot of making history in this disease.

    Dr. Davis is Professor of Biochemistry and Genetics at Stanford University and has directed the Stanford Genome Technology Center for the past two decades. He has won multiple awards in recognition of his pioneering genetics innovations — technologies that were instrumental in creating the foundation of the Human Genome Project, in which he was a key player.

    Among his biotechnological innovations were the development and standardization of the very first microarrays — tools that are now routinely used across the scientific community but which kicked off a genetics revolution when they were introduced.

    He is extremely well-published and is widely cited by other researchers. He is respected and renowned for his innovative, methodical and rigorous approach to problem solving and has a reputation for coming in and having a revolutionary impact. He’s a game-changer. A solutionist. A winner.

    With Dr. Davis involved, it is only a matter of time before ME/CFS is in vogue and on its way to being resolved. And great minds like Dr. Davis are like magnets. They attract other great minds.

    The Scientific Advisory Board

    I spoke with Dr. Davis and he told me about the experts who are involved in the project.

    “I've had the chance to meet lots of good people, and having these people involved is tremendously helpful.

    “What I look at is the intellect to arrogance ratio. I want people who are very smart and very humble; then they will reveal things, they share ideas. And because of the fact they are really smart, they come up with really novel ideas. That’s the basis of how I pick people to be on the scientific board.”

    What’s The Setup?

    The End ME/CFS Project is based on the same models that proved successful in previous large projects that Dr. Davis and other members of the Scientific Advisory Board were involved in, namely, The Human Genome Project and The Consortium on Inflammation and Host Response to Injury in Humans.

    I asked how it is all set up.

    “We plan to be the coordination centre, using the clinicians that will be involved and procuring samples from their patients, sending to a central place for the analysis. That means the samples need to be stabilized, which will take some lab work. But the plan is not to set up a lab that can do everything — although we can do a lot — rather we want to go to the very best labs, or close to the best labs, and ask them to run the actual experiments, carry out the analysis.

    “The concept of a single lab that does everything is a little outdated, given the complexity of things. The best way to do this is to utilise the best people and the best facilities, no matter where they are.

    “I’d love to have everybody involved in ME/CFS work get involved into such a consortium. I think this is a complex problem and I'm not sure setting it up as a competitive exercise is the best way to solve the problem. I think that can be deleterious to the outcome and you could get the same answer cheaper and faster by having a network of people being cooperative, where everybody shares in the ownership and the credit.

    “At the same time this would not exclude people trying things on their own, they have an idea, and they want to pursue it alone, that’s fine. Myself, I'm not out there trying to get credit for this, I've had enough success in science that I don’t need to take any credit for this and that’s why I set up to do this because I just want to make sure it is successful."

    Focusing on Severe Patients

    [​IMG]
    Dr. Davis' son Whitney suffers from severe ME/CFS

    Dr. Davis has a son with severe ME/CFS, so he has a clear picture of how serious this disease is. I asked him about the projects initial focus on severe patients like his son.

    “My son’s not really able to communicate now, but before he got that sick we talked about revealing things about him, and would that be okay? And he said if it helps solve the problem then by all means — do anything you want. This is a horrible disease and we have to do anything we can about it.

    “One of the problems with this disease is that often you fail to pick up that they’re sick, even when they are pretty severely ill. As long as the person can stand up they might look pretty normal.

    “My son was the same way, but if you looked more carefully there was the fact that he would stand up for a couple of minutes and get so exhausted that he had to go to bed. It's only now that he’s so severe and he’s lost a lot of weight, that he obviously looks quite ill. And he is quite ill.

    “It is a very debilitating disease. We’d like to sort out what’s going on. Initially I’d like to focus on severe patients and do what we can with them.

    “We're going to start by launching a simple project — from the lab point of view — looking at severe patients. Hopefully the more severely ill patients will display a much bigger signal of what’s wrong. As a result we won’t need as many patients, but logistically it's difficult as we have to go to them. They are bed-bound, and nobody has done bed-bound patients, largely because they don’t come into the clinic."

    Research Programme

    [​IMG]

    With such a talented scientific board, coming up with lots of novel ideas, I asked where do they begin to look? What’s the first objective?

    “We hope to find a biomarker. In the past, people have hoped for one thing — a metabolite, a certain enzyme activity or protein — but in the modern era of genomics we can measure lots of seemingly unrelated things, to try and identify a working biomarker.

    “We want to look at a variety of things and pick out a highly reliable set of markers. We would like those markers to be easily done and not too expensive to run. We want something where a doctor can prescribe the test and get the results back, no problems. The cheaper and easier it is to do the more likely someone will try it out. We are conscious of the cost of some of these things. We need a biomarker no matter what it costs, but I would like to get a biomarker that’s cheap.

    “As well as a biomarker allowing you to diagnose better, it is tied up in the disease structure; that’s where you can begin to explore what you might be able to do about the disease. If we can find something that may not cure the disease, but make it much better, that’s a good start; and sometimes treatments give you further clues as to what's going on.

    “If successful, we'll expand that into house-bound patients, who perhaps can walk around, but are still very ill. A possible problem with bed-bound patients is that we may get a lot of confusing signals as a result of being bed-bound. If things are promising then we'll move into a larger collection of people with the disease, who are trying to live something closer to a normal life."

    Technologies and Research Focuses

    With Dr. Davis’ proven track record over many years, of innovating new technologies and then developing them into robust tools that result in significant advancements, I asked what technologies might be employed, and what things the project might look at.

    “There is obviously the opportunity to do extensive sequencing of patient DNA, to look for genetic components to the disease. There is also ability to look at methylation, epigenetic changes that might account for some of the disease. We can look at gene expression levels — we’ll probably do that by both sequencing and array hybridization because they have different dynamic range characteristics.

    “And we have the ability to sequence gut microbes, try to identify what’s in the gut, and also to look at the genes of those organisms. You might recognise certain toxins for instance, but discover them in organisms that you didn't expect to produce such a toxin; so just identifying the organism plating may be inadequate.

    “We can do RNA sequencing looking for things in the blood, or any other easily accessible biomaterial, like saliva or spinal fluid.

    “We need to look at immune cells a lot as there’s a lot of immunology involved here. I'm a little bit focused on pursing individual cells, with some new technologies — we've just got to develop those technologists to get the costs down. The thinking is that if we can profile individual cells without having to do the traditional cell separation, then we may find very many unusual cell types that are present in this disease that nobody knows about. So we've got to be able to do that in a cost effective fashion; maybe they need to be perfected a bit, otherwise we do more classical cell separation and profiling. Because we need to characterize the immune cells in terms of surface markers as well as proteins — with the proteomic aspect to this — we’ll utilize mass spectrometry but also antibody arrays.

    “We also have a new technology to measure cell density looking at magnetic suspension — that hasn't been applied fully yet but we do see some differences in patients with ME/CFS compared to normal in some initial testing, so we need to follow that up. It’s a new technology looking at magnetic fields. It’s interesting because it’s very inexpensive and very fast. And it’s just new enough that we don’t know if it’s going to pan out, but we need to take on some new technologies that might allow us to see things that otherwise we’re blind to — things that no one has looked at before.

    The Last Major Disease

    "It could be affecting more people than we realise. There are lots of people out there who are undiagnosed and a biomarker might also allow us to recognise milder versions of the disease.”

    According to a recent report by the Institute of Medicine, the disease affects between 836,000 and 2.5 million Americans, and Dr. Davis thinks this could be the tip of the iceberg.

    "This is a major disease even at those levels; more common than multiple sclerosis, and AIDS. It’s likely to be present in one per cent of the population globally. If someone wants to try and make a difference in the world, this is where you can do that.

    “I consider it to be the last major disease in the world that we don’t understand yet. It’s largely been hidden by the fact that until recently it hasn't been recognised as a disease. It should be viewed as a career builder — but that’s going to require a high IQ, to recognise that reality — if you want to get involved at the ground floor in a disease that we don’t yet know the origin and what’s going on ... this is the last disease, the last opportunity.

    “Some people find that kind of exciting.”

    5 Million Dollars a Year – More Talent

    I offered this speculation to Dr. Davis — As a patient you want the NIH to say, ‘we’ll take this seriously; here’s loads of money for research,’ but that’s pretty unrealistic I guess. It sounds like you don’t need that necessarily — you just need enough support?'

    “In the Human Genome project, we didn't just dump money out there, and say ‘come and get it’ — we went round the country looking for the best people. That started with some really top-notch researchers, and that laid the groundwork for more good people to get involved, and that was the final strategy that made that project successful.

    “What we need is support for sustained growth.

    “If someone wanted to try and make a difference in the world, this is a great way, doing it in a kind of logical way; try to get some of the very best people involved in doing the research. Like the Gates Foundation has done for underdeveloped countries. I think he deserves a lot of credit for trying to do something really good for the world. It shows real imagination and invention, in addition to what he did to get Microsoft started.

    [​IMG]
    Dr. Davis and Ms. Tannenbaum make a formidable team

    “The main sources of funding are the NIH and private funding. I met Linda and I said, ‘I'm a good researcher but have no idea how to fundraise.’ Linda said, 'I'm a good fundraiser but have no idea how to research.'

    “That’s really the concept: that people should be using their expertise to solve this problem together, rather than trying to do everything themselves.”

    I was highly impressed by Dr. Davis when I interviewed him. I've spoken with quite a few ME/CFS researchers over the last few years and I frequently find dedication and ability. None, however, have left me as impressed as Dr. Davis.

    So imagine my delight when I speak with Linda Tannenbaum, the other half of this operation, and I find that she is equally brilliant at what she does. Creative, organized, experienced, determined, smart, and astute — all these words belong.

    I asked Ms. Tannenbaum how the foundation will fund all this quality research.

    “I have hired a fundraising consulting company to give us the best chance to raise funds. There are multiple people and groups around the world that are fundraising for the OMF. There are people in Sweden making and selling bracelets and pins, there are people in Slovakia starting a global crowdfund, UK and Australia working together to set up a challenge of some sort, walks and dinner parties are being set up in the US along with corporate matching programs taking us under their wing ... all to help keep this research going.

    “People writing articles and mentioning OMF in their documentaries. People thanking us every day on Facebook and when writing notes to us as they sign up for newsletters. This momentum is exciting, thrilling and shows how we must keep going and find a cure.

    “Any help we get from the patient community goes to keeping it going, to making the End ME/CFS Project a success. That plays an important part and we value, and want to acknowledge, everyone who helps.

    “But the project isn't just about crowdfunding in the patient community. We are pursuing private funding opportunities in addition to government funding; exploring all avenues within NIH.”

    And we’re in good hands — Ms. Tannenbaum left a successful independent clinical laboratory that she set up and ran for more than 21 years, in order to dedicate herself to this project full-time, and with her experience and tenacity, we have every reason to think that her efforts will pay off and bring an end to ME/CFS.

    To find out more about the OMF and their End ME/CFS Project, visit the website: www.openmedicinefoundation.org and for more information on their initial study of severe patients, check out their Severely Ill Big Data Study. If you want to donate to the OMF's outstanding work then you can do so via their donation page.




    Phoenix Rising is a registered 501 c.(3) non profit. We support ME/CFS and NEID patients through rigorous reporting, reliable information, effective advocacy and the provision of online services which empower patients and help them to cope with their isolation.

    There are many ways you can help Phoenix Rising to continue its work. If you feel able to offer your time and talent, we could really use some more authors, proof-readers, fundraisers, technicians etc. We’d also love to expand our Board of Directors. So, if you think you can help in any way then please contact Mark through the Forums.

    And don’t forget: you can always support our efforts at no cost to yourself as you shop online! To find out more, visit Phoenix Rising’s Donate page by clicking the button below.

    [​IMG]
    Continue reading the Original Blog Post
     
    Last edited by a moderator: May 6, 2015
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  2. Simon

    Simon

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    Really great article, Clark, thanks very much.

    It's such an impressive initiative: the ambition, the class of the the scientific advisory board, the quality of the ideas and the planned scale of it all at $5 million a year. I hope they succeed and have just done my tiny bit by donating (» here).

    And I loved this:
    OK, maybe not quite the last major disease but I think that when you are doing something this grand you are entitled to a little hyperbole.
     
    Last edited: May 6, 2015
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  3. Gingergrrl

    Gingergrrl Senior Member

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    @ClarkEllis Thank you for writing such a wonderful and thorough article re: this project. I had the extreme pleasure and opportunity to meet Ron Davis and Linda Tannenbaum at the screening of "Forgotten Plague" in Hollywood and their dedication to this project has no limits.

    If anyone will solve this disease it will be this team IMO. I just don't know if it will be in my lifetime or how to get the US Govt to fund this project. I can never thank them enough for their tireless efforts and when I start to lose hope, I think about this project and Dr. Davis fighting for his son's life and it keeps me going another day.

    Thank you from the bottom of my heart to the entire team of scientists and the clinical staff at OMI. You are making a difference in the lives of so many people like me. God bless you.
     
  4. jimells

    jimells Senior Member

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    Now there's a suitable topic for psychobabblers to study - and it won't harm patients...

    And speaking of babble, it would be interesting to ask the Science Media Centre for their reaction to this project.
     
    Last edited: May 6, 2015
  5. Sasha

    Sasha Fine, thank you

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    I agree with @Simon - what a fantastic quote! We should be quoting this at every possible opportunity.

    What a star Ron Davis is.

    So sorry that his son is so ill now (he is a member of this forum, though I don't think he's been able to post for a while).

    Excellent article, @ClarkEllis! I've just given them a donation and hope others will, too.

    Let's pile in and donate, folks! Here's the link. Let's get the first patient funded - only $25k!
     
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  6. Gingergrrl

    Gingergrrl Senior Member

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    You can also donate to OMF every time you use Amazon Smile in the US but not sure for other countries.
     
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  7. NK17

    NK17 Senior Member

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    I also had the immense pleasure of meeting and talking with Dr. Davis and Linda Tannenbaum and can confirm that not only they will go the extra mile for all PwME on a scientific and fundraising level, but that they also deeply understand the true devastating nature of the disease and the absolute need for a change in the way such a complex and neglected illness should be tackled.

    You can be sure that from Dr. Davis down to the very last scientific advisory board member and all collaborators, these are human beings with high integrity, intelligence, dedication to ego/arrogance ratio.

    No power games, no politics, no shenanigans, no psychobabbling involved. Just pure humanity and scientific biomedical inquiry for the greater good.

    Time for another donation and solicitations from the few friends that grasp the gravity and urgency of the situation.

    Thank you @ClarkEllis for this interview and article. Once again you have done a magnificent job.
     
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  8. Sasha

    Sasha Fine, thank you

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    I'll be peddling this one too! It's a superb initiative. Hard to imagine how it could be better.

    :thumbsup::thumbsup::thumbsup::balloons:

    Even if it's just a few bucks/quid/Euros, I think we should be supporting them - we've got huge numbers here on Phoenix Rising! Let's all chip in. :)
     
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  9. Gingergrrl

    Gingergrrl Senior Member

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    @NK17 Triple Likes and Loves for your excellent post :thumbsup:
     
  10. ClarkEllis

    ClarkEllis

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    Thanks everyone, I really enjoyed putting this together and the sheer quality of what they're doing, and the class of the people involved, meant my job as writer was an easy one. I really can't speak highly enough of these guys, they're just on a whole nother level.

    It's great to see people donating to their work and I'm making a donation today as well; I see it as an investment in our own futures, and I hope other people get behind them in what ever ways they are able.
     
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  11. Gingergrrl

    Gingergrrl Senior Member

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    Agreed and well said.
     
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  12. Sasha

    Sasha Fine, thank you

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    Completely agree.

    I've changed my signature to support this initiative (inspired by yours!). It's a good way to get the word out on the forums.

    BTW, is there any difference in practice between this donation link:

    http://www.openmedicinefoundation.org/donate-today-to-the-severely-ill-big-data-study/

    and this one (in the article):

    http://www.openmedicinefoundation.org/ways-of-giving/donate/

    I expect all roads lead to Rome but the first one seems more specific.
     
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  13. Simon

    Simon

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    This seems obvious in a way - it's certainly the case in other illnesses - and has been talked about before but it's great to see firm plans for a study of the severely affected (think the CDC multi-clinic study is including some now, too). More on the study here: » ME/CFS Severely Ill, Big Data Study

    Though that is the flip side - as he says, only way to find out is to do the study.
     
    Last edited: May 7, 2015
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  14. deboruth

    deboruth

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    Great stuff. Can Francis Collins and Anthony Fauci go on blackballing and sabotaging M.E./"cfs" research with this caliber of scientific talent and professionalism on board?
     
  15. Bob

    Bob

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    Be sure not to miss the detailed PDF that is linked to, at the end of that webpage:
    http://www.openmedicinefoundation.org/wp-content/uploads/2015/04/Big-Data-Study-long-version.pdf

    Extract:
     
    Last edited: May 7, 2015
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  16. Bob

    Bob

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    I can't be certain, but this link seems to be a general donation pot for the OMF's "The End ME/CFS Project":
    http://www.openmedicinefoundation.org/ways-of-giving/donate/

    And this one seems to be for donations specifically for the "The Biomarked Discovery Project" aka the "Severely ill big data project":
    http://www.openmedicinefoundation.org/donate-today-to-the-severely-ill-big-data-study/


    Like you say, Sasha, it probably doesn't make much difference which we use - it all goes to the same place.
     
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  17. Christopher

    Christopher Senior Member

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    I hope they decide to examine mold toxins.
     
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  18. ClarkEllis

    ClarkEllis

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    I may be able to turn out a decent article, but you're still the queen of signatures Sasha!
    I tried to copy yours but got the message:
    • Your signature is 5 line(s) too long.
    • Your signature may only have 3 smilie(s)
    Any clue about that? Only 3 smilies - the world's gone mad!?
     
    jimells likes this.
  19. Sasha

    Sasha Fine, thank you

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    That's odd - I used to get that message when I used more than three smilies in a signature and I don't know why that extra boffin didn't cause a problem!

    I don't know why there's a limit on smilies. It's not as though there's some kind of international pixel shortage.

    I don't know if it makes a difference that I got to my signature by editing the existing one. No idea why it worked!
     
  20. Sasha

    Sasha Fine, thank you

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    Bump!

    Cough up those donations, folks! :angel:

    Such an exciting project, this. Can't wait to get the first patient funded!

    Let's fund those boffins! :nerd::nerd::nerd:
     
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