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Year Ahead in 2012: ME/CFS Efforts Expand

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

  1. Cort

    Cort Phoenix Rising Founder

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    Raleigh, NC
    Background

    The theme of this year is expansion, not contraction as one might expect after the biggest finding in CFS history (XMRV) didn't pan out. With XMRV drawing more attention than ever to this disease the ME/CFS research community emerged in better shape with more new projects and more new faces than ever before. Yes, ME/CFS is still a fringe topic receiving abysmal funding from the federal government and these efforts are small, but they often lead by prominent researchers and if they are successful they should be able to pull in much needed funds over time.

    In Part II of The Road Ahead in 2012? we look forward to new efforts and expanded efforts from most of the ME/CFS research organizations in 2012. This will be a critical year as six new efforts work to get off the ground, get funding. produce results and build momentum for the future.

    CFIDS Association of America

    Were intensifying efforts across the field to build a critical mass of rigorous research that validates the biological basis for CFS and leads to improved methods of diagnosis and treatment.

    The CAAs research program approach is different from other foundations founded by researchers to support their research. The CAAs primary goal is to produce pilot studies that provide the data researchers need to apply for multi-million dollar grants from the NIH, Department of Defense (DOD) and other funding sources.

    Instead of having in-house researchers do their research, CAA issues requests for grant proposals to broad research community and then puts the proposals through a rigorous and lengthy process (10 months) of analysis by independent reviewers (over 50) before the final projects are funded. An added bonus has been the presence of a veteran researcher at their helm, Dr. Suzanne Vernon, who love to roll up her sleeves and tweak, combine or otherwise alter original study proposals to make the whole package greater than its parts.

    One result of this rather intensive approach is that CAA funded studies have paid off at the NIH with the CAAs $1,000,000 plus 2009 investment resulting in over $5 million dollars in NIH/DOD grants and their researchers publishing 14 studies (with more on the way)


    • Research Grant Winners Announced CAA announces the winners of their 2010 grant package on February 24th.
    • BioBank Expands the CAAs Biobank is the foundation of a potentially greatly expanded research effort as researchers apply for and use the CAAs well-documented samples for their research studies. Thus far 449 patients and controls have enrolled and the Biobanks first study using 267 participants (on XMRV?) should be published this year. The Biobank will enroll more participants this year and hopefully will announce more collaborations.
    • From Knowledgebase to Biomarker the CAAs Goes Shopping Mishras Knowledgebase study to create novel hypotheses using data mining techniques on over 250,000 (yes, thats 250,000) articles on ME/CFS and 14 co-occurring disorders was one of the more unusual studies funded anywhere. That study is wrapping up this year and the CAA is going to begin shopping this new list of biomarker candidates to researchers and biotech companies in hopes they will start to validate them.
    • A Yea or Nay on the Autoimmune Study Decision Soon Dr. Suzanne Vernon lead a host of researchers from across the US to apply for a grant to the Congressionally Directed Mandated Research Program (CDMRP) to study the possibility that ME/CFS has auto-immune characteristics. A Yea on the study would be opportune indeed given the results of the recent Rituximab trials.

    The Chronic Fatigue Initiative (CFI) - http://cfinitiative.org/

    We are focused on assembling the best team; developing a new strategy; formulating a straight-forward operating plan and driving results.​

    The Chronic Fatigue Initiative, with its 10 million dollar 3-year grant from the Hutchins Foundation, is the best funded ME/CFS non-profit research group in the world. Their hefty bank account means that the CFI has the bucks to fund large studies and with four ME/CFS doctors (Klimas, Peterson, Bateman, Montoya) providing 200 plus patients/200 healthy controls for they are.

    A Busy Year With the foundation of the Initiative 400 rigorously described patients and healthy controls ensconced in their Biobank Foundation researchers can get down to work. The CFI will start off with two big studies.


    • Blood, Sweat, Tears and More None is bigger than the big Hornig/Lipkin pathogen study, which, given its rigor and size, will probably define pathogen research in ME/CFS for quite some time. Hornig et. al. are using the latest technology, developed in Ian Lipkins lab, no less, to look for pathogens in the blood, as well as the saliva, tears and stool samples. Due date late 2012, early 2013.
    • Size Matters the Aschiero Epidemiology Study Meanwhile Dr. Aschiero will be using a huge Harvard database and biobank to analyse samples which will hopefully tell what happened to make people come down with CFS.
    • Mechanisms of Illness CFI will also be developing their scientific advisory board which will define likely Mechanisms of Illness , call for grants and then fund them. As with the CAAs biobank the CFIs biobank will be open to other researchers for use.

    The word is that the Hutchins Family Foundation is willing to pump more money into the CFI if they feel their initial investment is paying off.



    Fatigue Consultation Clinic and OFFER in Salt Lake City, Utah Dr. Bateman


    The mission of the Research Department is to develop the most effective treatments for fibromyalgia, ME/CFS, and associated illnesses through compliant partnerships with industry leaders and compassionate patient-centered research.​

    Fatigue Consultation Clinic http://www.fcclinic.com/index.htm


    • Going Digital Theres gold in them hills- theres a trend going on In the top rank of ME/CFS physicians with Dr. Klimas, Dr. Peterson and Dr. Bateman all switching to Electronic Medical Records Systems to increase their productivity and allow them to better understand their data.
    • Collaboration, collaboration, collaboration The Fatigue Consultation Clinics transition to an EMR/EHR, system will assist both their clinic and research arms and with Dr. Bateman engaged in collaborative efforts with the CFIDS Association of America, the Chronic Fatigue Initiative, the CDC and the Open Medicine Institute and the Lights at the University of Utah, this busy physician/researcher definitely doesnt need to spend her time digging into her filing cabinets.
    • An Expansion - Dr. Bateman is in demand and the Fatigue Consultation Clinic has increased its space by 50%

    OFFER (Organization for Fatigue and Fibromyalgia Education and Research) http://www.offerutah.org/index.htm


    • Professional Conference Dr. Batemans non-profit , OFFER, is planning a continuing education conference for mental health providers regarding the science of chronic fatigue and pin in Sept. 2012.
    • The Long Term Goal OFFERs long term goal, still in its brainstorming stages, is establishing none other than a CFS/FM Center of Excellence in Salt Lake City .and why not? Dr. Bateman is in demand, she has strong connections with Univ of Utah researchers (the Lights/Dr. Singh/ Dr. Albright), she is collaborating with virtually everyone and she is respected everywhere. Utah has become something of a hub of ME/CFS research.

    Hunter-Hopkins Center Dr. Lapp http://drlapp.com/

    The Hunter-Hopkins Center conducts clinical trials, nutraceutical trials, and clinical research. These studies are performed independently or collaboratively with other researchers throughout the world.

    Lead by Dr. Lapp the Hunter Hopkins Center is always in the thick of treatment trials for ME/CFS and Fibromyalgia and this year is no exception. The HHC will be engaged in studying


    • Ampligen Like Dr. Enlander and Dr. Peterson, the Hunter-Hopkins Center is continuing to engage in Ampligen trials.
    • IDEAL (Gamma Globulin) gamma globulin is another understudied immuno-modulator and the HHC is working with Coram Services to gather data on patients given (Hyzentra or Vivaglobin ) subcutanteously. . This is part of a multivitamin-center national study.
    • Droxidopa used in Japan with good effect in the treatment of low blood pressure and orthostatic intolerance, Droxidopa is just beginning to crack the US market. The HHC is finishing up a study to determine how effective it is in treating ME/CFS.
    • Physical findings in CFS/ME - An ongoing study to identify significant physical findings in CFS/ME. We anticipate a multi-center, cross-specialty application of our findings in order to determine the incidence, sensitivity, and specificity of each finding. (This may be the CDC/Open Medicine Institute sponsored trial)

    Initiative for Chronic Infectious Diseases at Stanford Dr. Montoya
    http://chronicfatigue.stanford.edu/

    Our initiative aims to mobilize and integrate Stanfords best faculty and resources We have assembled a world-class research team, who will work to identify the connection between these patients symptoms and infection or immune dysfunction.​

    <img src="http://phoenixrising.me/forums/attachment.php?attachmentid=4651&d=1293067605" width="168" height="111" align="right" title="Dr. Montoya runs the Stanford Chronic Infectious Illnesses program on ME/CFS"/>The past year has been rather quiet at Stanford as Dr. Montoya has been gathering his team of researchers, post-doctoral fellows, statisticians, bioinformatics faculty, graduate students, laboratory personnel (human immune monitoring core facility), a neuropsychologist, and an exercise physiologist. It appears that this year the Initiative for Chronic Infectious Diseases is going to make more noise.

    The Year (?) - Dr. Montoyas eagerly awaited placebo controlled study using Valcyte was due to end five years ago. We know that the results were initially underwhelming yet interesting enough to keep this careful researcher engaged. In a talk a year or so ago, Dr. Kogelnik stated that most patients improved past the six month mark the study was due to end and some became well. That finding in this study would probably break things open for antivirals and ME/CFS.Heres to the bet that this is the year Dr. Montoya reports on the big study.

    The Initiative is engaged in a number of other studies including


    • The Lipkin pathogen study
    • Immune signatures study
    • MRI brain study
      [*]EEG/exercise
      study to validate cognitive issues.

    A new Website
    the word is that a much improved website is almost upon us.as well

    Lerner Foundation Dr. Lerner http://www.treatmentcenterforcfs.com/CFS_Foundation/index.html

    We have, along with a team of investigators at this Center, accumulated strong evidence that CFS is caused by persistent herpes virus infection (Epstein-Barr virus, Cytomegalovirus and Herpes virus 6), singly or in combination.​

    Dr. Lerner is excited (!) Now working with another EBV expert, Dr. Ron Glazer, Dr. Lerner believes he has found a smoking gun which indicates that his theory of an arrested Epstein Barr Virus infection in ME/CFS is correct. Their Ottawa IACFS/ME Conference poster indicated theyre picking up evidence of the early proteins he believes are present. The Glazer /Lerner study will continue and they will lobby the NIH for funding to develop an easier, less expensive Elisa test.

    Neuro-immune Institute at Nova Southeastern (NSU) in Broward Cty, Florida Dr. Klimas


    I can promise we will be providing cutting edge research and care, and educating providers like never before​

    Dr. Klimas has a lot on her plate after her move from the Univ of Miami to Nova Southeastern (NSU) to form a Neuro-Immune Institute. Based on her statements thus far it sounds like she will be


    • Planning - Forming the Neuro-Immune Institutes long-range plan
    • Hiring 3 researchers including at least one senior researcher
    • Fundraising - Taking part in a major fundraising effort
    • Developing web-based platforms to house their biological data
    • Collaborating - Developing onsite and virtual think tanks and collaborative opportunities
    • Education - Developing educational opportunities at NSU
    • Research - including the Good/Bad Day study, systems biology research, NK cells research etc.
    • CDC - participating in the CDC diagnosis and definitions study

    Dig Deeper read Dr Klimas Talks on her new CFS research Institute at Nova Southeastern

    Mt Sinai ME/CFS Research Center Dr. Enlander

    The advantage of being part of a large medical school which is supportive of the ME /CFS center is that the range of experts and specialists is enormous, making the center a cohesive and important group with the largest cohort of ME/CFS patients in the eastern seaboard.​


    The Mt Sinai ME/CFS research center is getting off to a great start with a big $1,000,000 grant and they have a long list of projects on the boards, four of which are already underway and a future project that will hopefully involve Rituximab.


    • Exercise and genes a Pre and post-exertional genome study featuring ace geneticist Eric Schadt and Dr. Enlander.
    • Exercise and cytokines this Enlander/Morad study will examine whether exercise tweaks cytokines and RNase L. Other studies have failed to find a strong link will the Enlander/Morad study find differently? Hopefully well know before long.
    • GcMAF and MAV 878 an ongoing Enlander project to assess the effectiveness of the most exciting addition to the ME/CFS treatment package GcMAF
    • Ampligen ongoing Enlander/Hemispherx project with Dr. Enlander continues to assess the effectiveness of the immune modulator Ampligen

    Projected future projects include an Enlander/Bell Rituximab treatment trial and Ila Singh study on viruses.

    PHANU (Population Health and Neuroimmunology Unit) Dr. Marshall-Gradisnuk, Dr. Staines [/SIZE] http://www.bond.edu.au/faculties-colleges/faculty-of-health-sciences-and-medicine/research/research-groups-centres/population-health-and-neuroimmunology-unit/index.htm

    Ultimately our aim is to develop a clear diagnostic test for CFS and establish a national testing facility here at Bond University, which we believe could happen within the next five years.​

    PHANU, an ME/CFS research group at Bond University in Australia, is on the upswing. Their longstanding assertion that ME/CFS is an autoimmune disorder got a big boost with the Rituximab trial, they turned in the most impressive performance at the IACFS/ME Ottawa conference, and they just received an $800,000 grant from the Mason Foundation. They are working with Dr. Peterson of the Simmaron Foundation and looking to collaborate with others. Some of the studies theyre currently working on include

    • NK Cells Tracking down the cause of Natural Killer Cell Dysfunction
    • Vaccinations A window into the immune dysfunction in CFS?
    • Gene Expression during pregnancy in CFS
    • Immune Regulation and pain Sensitization in the central nervous system

    PHANU will be determining how to spend their new grant money and they are working hard on getting a Rituximab study going. An interview with PHANUs director, Dr. Marshall-Gradisnuk, is coming up shortly.
    Whittemore Peterson Institute http://wpinstitute.org/

    The Whittemore Peterson Institute for Neuro-Immune Disease exists to bring discovery, knowledge, and effective treatments to patients with illnesses that are caused by dysregulation of both the immune and the nervous system.

    Drs Pourzan and Khaiboullina will anchor the WPI s treatment end and with the questions resolved about who gets the research money (the WPI/ Dr. Lombardi do), the WPI will be working on several large NIH and Dept. of Defense grants in 2012


    • New Strategies study- the WPI is about halfway through a 5 year grant to uncover novel pathogens and immune markers. The Institute will use a variety of methods to look for novel pathogens and biomarkers. Among other things they will be using Kerrs gene expression data that identified 88 dysregulated genes. This is a complex multi-million dollar study and the WPI is no doubt very glad they retained control of it.
    • Pathogenic Agents and Immune Markers Study in this new 400K Dept. of Defense grant the WPI will look for pathogens and immune markers in Gulf War Illness (GWI) patients.
    • Events The annual I Hope You Dance Gala will take place Sept 14 and Wings of Hope Run will take place Oct 14th.

    Plus One More

    The appearance of 5 new research efforts (Chronic Fatigue Initiative, CFI, Mt. Sinai, Neuroimmune Institute, Simmaron Researcj) and the growth of others (PHANU, CFIDS Association) has been gratifying but guess what? In the next month or two were due for one more splash. Stay tuned.
     
    ahimsa, Dolphin and Enid like this.
  2. Riderofkarma

    Riderofkarma

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    This really cheered me up Cort, thank you so much. It's easy to feel really stuck in the mud here, so frustrated, but you've completely turned my mood around. There is a lot more happening than I thought! ^_^

    -Jennifer
     
  3. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    Thanks for the summary, hopefully some progress comes from all of this!

    GG
     

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