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Author Laura Hillenbrand helps CFS with large donation

Discussion in 'General ME/CFS News' started by Nielk, Feb 23, 2012.

  1. Nielk

    Nielk

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    FEBRUARY 23, 2012, 8:40 AM
    With Help from Author Laura Hillenbrand, Drug Repurposing Comes to Chronic Fatigue Syndrome

    Text
    By Amy Dockser Marcus


    The CFIDS Association of America says that $2 million in funding backed by individual gifts including a $250,000 donation from best-selling writer Laura Hillenbrand, who has chronic fatigue syndrome is going to grants and projects designed to accelerate the development of treatments for CFS.

    One of the new projects: an attempt at so-called drug repurposing, when already-approved drugs for one indication are tried in a different disease.

    As the WSJ has reported, drug repurposing is getting a big push from a number of quarters, including the NIH, which is targeting repurposing efforts in rare diseases, and organizations such as the ALS Therapy Development Institute, which recently reported that an approved multiple sclerosis drug appeared to be effective in mice with ALS.

    The high cost of developing new therapies has helped drive recent interest in drug repurposing. The concept is that a drug already approved for one condition will cost less and move faster into the clinic if it turns out to also work in a different disease. Nonetheless, at first glance, CFS might seem an unusual condition in which to try drug repurposing.

    CFS has no known cause. Doctors usually make the diagnosis by ruling out other problems. Many of the symptoms including muscle and joint pain, cognitive dysfunction, headaches, and unrefreshing sleep are very difficult to treat. There is currently no FDA-approved drug for CFS.

    If repurposing succeeds in coming up with potential new therapies to test in CFS, it could serve as a model for other complex conditions. Many chronic diseases are heterogeneous, lack approved biomarkers, and are not well-defined, says Suzanne Vernon, the CFIDS Associations scientific director. CFS is in many ways in the norm when it comes to chronic diseases, she says.

    Hillenbrand, who says the success of her recent book Unbroken enabled her to make the $250,000 gift, tells the Health Blog she supports an integrated approach to CFS research. Things are finally happening, Hillenbrand says.

    She points out that one of the most promising recent developments in CFS was actually a repurposing project. Researchers in Norway published research last year suggesting that the cancer drug Rituxan relieved symptoms in some CFS patients.

    The CFIDS Associations repurposing project will be run by the biotech Biovista. The company created a technology that is able to analyze huge quantities of information drugs in the public domain, adverse event databases, gene targets, patents, medical literature and look for novel connections between drugs mechanisms of action and key symptoms of CFS, says Aris Persidis, president of Charlottesville, Va.-based Biovista.

    In any disease where there is tremendous data and history and the available facts are interpreted differently by different groups of experts, it can seem difficult to find new drug candidates, says Persidis. A computational approach allows novel analysis without any bias, in an agnostic manner, he adds.
     
  2. SOC

    SOC Senior Member

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    Fantastic news! :balloons: Three cheers for Laura Hillenbrand and the other donors! :balloons:

    Repurposing is our best bet for a better treatment (relatively) soon. Hopefully this computational approach will work around the conscious and unconscious bias of researchers against ME/CFS. I suppose that will be dependent on what are defined as the key symptoms of ME/CFS.
     
  3. Esther12

    Esther12 Senior Member

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    Three cheers indeed.

    Also, I'm going to write a novel and get rich too! If instead of each post I'd written a chapter of a book...
     
  4. SOC

    SOC Senior Member

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    Good point, Esther! :D

    We have so many talented writers here. Wouldn't it be neat to group-write a book -- maybe just individual patient stories edited and polished by someone who knows the business -- and donate the proceeds to ME/CFS research? Or maybe we should make a collection of our limericks, haikus, and other hijinks from the Community Lounge. ;)
     
  5. Nielk

    Nielk

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    I think we can definitely write a book with some of our collective stories-challenges, including some of our best limericks and the artists on the forum can include pictures of paintings and drawings.
     
  6. Sing

    Sing Senior Member

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    Another huge thank you to Laura Hillenbrand! She continues to do heroic work from the confines of her little space. But then think of Stephen Hawkins too...Amazing!

    My only concern is that her money doesn't go down the toilet of vague definitions. I hope that Biovista employs the CCC or ICC symptom list. I think Laura Hillenbrand's intention is to cut to the chase. It definitely feels like that time now. We are tired of waiting! It is time to stop repeating the mistakes of the past, replicating fruitless approaches while floundering in vague, overly broad and incomplete definitions designed by committees of nonexperts, and use the best symptom list there is, based on the work of the best medical experts we have--because if they plug in those old definitions which overlap with Depression and Anything Else, what use can their results have?

    I applaud Laura Hillenbrand for committing her money to an effort to find drugs for our treatment as soon as possible, and I wish Biovista every help to make this a successful project.
     
    Ember likes this.
  7. Sasha

    Sasha Fine, thank you

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    Thanks for posting this, neilk - it's great news.

    Here's the link to Amy's blog post - let's reward her with traffic so she keeps giving us these stories!
     
    Dolphin, ahimsa, SOC and 1 other person like this.
  8. Christopher

    Christopher Senior Member

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    Make sure to comment too.
     
  9. Firestormm

    Firestormm

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    More info on the CFIDS research awards: http://www.marketwatch.com/story/th...-chronic-fatigue-syndrome-research-2012-02-23

    Extract:

    '..."Our 'research institute without walls' vision becomes a reality today with the tightly integrated projects led by experts in diverse disciplines," says CEO Kimberly McCleary. "Rather than expending precious funds - and time - to construct a bricks-and-mortar facility, we have attracted top institutions to put their best minds to work immediately. We function as director and connector, networking carefully selected projects, guiding progress and closely monitoring performance at every step."

    "We're building a pipeline to effective treatment that includes objective means to diagnose and subtype CFS," says Suzanne D. Vernon, Ph.D., the Association's scientific director. "These eight projects extend an initiative begun in 2008 to overcome the 'one and done' type studies that have stymied progress in patient care." Vernon, a microbiologist with more than 15 years of experience in CFS research, directs the Association's research program.

    Five new grants build on past discoveries and explore new scientific terrain:

    Dane Cook, Ph.D., of the University of Wisconsin-Madison has teamed with Alan Light of the University of Utah and Gordon Broderick of the University of Alberta to link information gathered from exercise testing, brain imaging and gene expression markers in the blood to understand post-exertional relapse, a hallmark feature of CFS. This project will attempt to validate blood and brain markers independently identified by these investigators in earlier studies.

    Spyros Deftereos, MD, of Biovista in Charlottesville, Va., will use a proprietary, very large-scale drug repurposing platform called the Clinical Outcome Search Space(TM) (COSS) to analyze the biomedical literature, patents, adverse event databases and other information sources to systematically identify non-obvious new drug candidates to treat CFS.

    Patrick McGowan, Ph.D., of the University of Toronto Scarborough will build on evidence of environmental influences that affect the function of the immune system in CFS patients. Using samples collected through the SolveCFS BioBank, McGowan will look for genome-wide epigenetic changes and assess whether these alter the immune response. This study may uncover novel diagnostic and therapeutic biomarkers.

    Marvin S. Medow, Ph.D., New York Medical College in Valhalla, N.Y., will extend earlier work supported by the Association that shows orthostatic challenge, such as prolonged upright posture, leads to problems with memory, concentration and information processing in CFS patients. After measuring brain blood flow during a head upright tilt test while testing cognitive ability, he will test three interventions to identify mechanisms to improve neurocognitive impairment.

    Peter Rowe, M.D., of Johns Hopkins Children's Center in Baltimore, Md., has observed that simple movements like a straight leg lift can trigger fatigue and brain fog in CFS patients. Dr. Rowe's group hypothesizes that the underlying mechanism is similar to fibromyalgia pain, where nerves become extra sensitive to stimulation, a process known as central sensitization. His work will be among the first to explore the possible link between fatigue, cognition and central sensitization. The results are expected to identify a subset of patients who will benefit from a different therapeutic approach.

    In addition to these grants, the Association announces two new collaborations through its SolveCFS BioBank, an integrated patient registry and biorepository that houses extensive standardized medical information and biological samples from individuals diagnosed with CFS and healthy controls:

    Eric Delwart, Ph.D., at the Blood Systems Research Institute, San Francisco, Calif., will use laboratory techniques known as metagenomics to screen blood samples for known and novel infectious agents.

    Dr. Leonard Jason, Ph.D., of DePaul University in Chicago, Ill., is using symptom information reported by SolveCFS BioBank participants to assess various case definitions used to classify CFS patients.

    The Association will also work in partnership with start-up venture LogosOmix to develop a biomarker "hit list" for CFS based on the product of a 2009 - 2010 grant to New York University that created a knowledgebase of the CFS literature and text-mining tools.

    "These strategically aligned projects transform how research by patient-supported organizations is done. No longer are we simply passive sponsors; we are true partners," states Vernon....'

    Same info from newswire: http://www.prnewswire.com/news-rele...onic-fatigue-syndrome-research-140126533.html
     
    Dolphin likes this.
  10. SOC

    SOC Senior Member

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    [my bolding]

    I hope the analysis of biomedical literature does not include the pseudoscience published by the biopsychosocial school whose conclusions are often not supported by the data they collect.
     
  11. Sasha

    Sasha Fine, thank you

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    Thanks, Firestormm - very good to see such a lot of hopeful research initiatives being reported over the last couple of days! Amazing, compared to pre-XMRV days.
     
  12. Firestormm

    Firestormm

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    Research First (sorry should have gone here first I suppose lol) http://www.research1st.com/2012/02/23/breaking-ground/

    It features the project overviews that better help understand what the heck they're looking for/at/with. Phew!

    Really pleased to have some happy things to read about for what seems like a change :thumbsup:
     
    Dolphin and Nielk like this.
  13. Mark

    Mark Former CEO

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    That idea has been on my agenda for a long time SOC. I would love to see PR publish a book (or books) of collected writings from the site, one day. When we've finished with the forum migration and the other structural issues we're working on now, I'll want to start recruiting people from the forums to work together on projects like this...I think there will be lots of opportunities for members to 'volunteer' on such projects soon, we just have to finish setting up the infrastructure to be able to support that...meantime, if people want to start work on gathering together such collections, I think that's a great idea...and by the way, I think short personal patient testimonies are important in this, we have a very moving one in preparation at the moment and I'd like to encourage more of those...
     
    Cort and Sing like this.
  14. Patrick*

    Patrick* Formerly PWCalvin

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    I am a bit in awe of Laura Hildenbrand. Both of her books that I've read (Seabiscuit and Unbroken) remain among my favorites. And what a way to make a living. She finds a topic that interests her, delves into it with the focus of a ninja, then draws the rest of us into her interest through the written word. A dream of many, I'm sure, but few could pull it off.

    I don't know how much money she's made from book sales - probably a fortune - but $250,000 is still $250,000. Thanks, Laura.
     
    Dolphin likes this.
  15. Cort

    Cort Phoenix Rising Founder

    Wonderful idea!
     
  16. Cort

    Cort Phoenix Rising Founder

    (Don't forget those movie deals :)).

    Its still a huge chunk of money for an individual to give - it makes me think she feels researchers are getting closer. I think they are - I don't know how close but there is definite momentum in the field. :)
     
    justinreilly and Nielk like this.
  17. Firestormm

    Firestormm

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    Research examines environmental triggers altering gene function in Chronic Fatigue Syndrome patients

    23 February 2012: http://medicalxpress.com/news/2012-02-environmental-triggers-gene-function-chronic.html

    A University of Toronto Scarborough (UTSC) researcher is examining how environmental triggers might alter gene function in people with Chronic Fatigue Syndrome. The research could lead to better insights into the disease and eventually to new treatments.

    Patrick O. McGowan
    , professor in the department of biological sciences and director of UTSC's Laboratory for Epigenetic Neuroscience, is looking at how environmentally triggered changes to gene expression might alter immune function and stress response in ways that contribute to the disease.

    McGowan's field of study is epigenetics long-term changes in gene function that do not change the underlying DNA sequence. An epigenetic change wouldn't change a gene itself, but would influence whether, when and how the gene is turned off. Epigenetic changes can be caused by environmental triggers such as infections, toxins, stress, nutrition, and even the social environment.

    McGowan will conduct the study into the epigenetics of CFS with a grant from the CFIDS Association of America. As part of the grant, he will have access to the SolveCFS Biobank, a collection of biological samples from CFS patients.

    CFS, also known as Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS), is a complex and debilitating chronic illness that affects the brain and multiple body systems. Symptoms include incapacitating fatigue and problems with concentration and short-term memory. Millions of North Americans are thought to suffer from the disease.

    McGowan will look specifically at the relationship between a system called the hypothalamic-pituitary-adrenal (HPA) axis and immune function. The HPA axis is involved in the regulation of the stress response, and has effects on immune function and inflammation through cellular signaling mechanisms involving the steroid glucocorticoid.

    McGowan's hypothesis is that there is an epigenetic mechanism in CFS that disrupts glucocorticoid signaling in white blood cells called lymphocytes. By studying tissue samples from the SolveCFS Biobank he hopes to pinpoint the mechanism.

    Provided by University of Toronto Scarborough
     
  18. Nielk

    Nielk

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    Thank you Firestormm for this very interesting article. I find the subject of Epigenics very intriguing. I think that there is so much that scientists can learn now using epigenics which was not available to then in the past.
     
  19. justinreilly

    justinreilly Senior Member

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    Some of these grants look like very good ideas to this non-science person, especially the drug search project. I do really wish that CAA would go that extra necessary (imo) step and use CCC and ICC in their Biobank. It is such a simple step and would momentously improve the science. They do include PER/PEM/PENE as a mandatory criterion, to their credit. But one has to wonder why they are so invested in Fukuda and other CDC nonsense.
     

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