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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
The CAA’s research program approach is different from other foundations founded by researchers to support their research. The CAA’s 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 CAA’s $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 CAA’s Biobank is the foundation of a potentially greatly expanded research effort as researchers apply for and use the CAA’s 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 CAA’s Goes Shopping – Mishra’s Knowledgebase study to create novel hypotheses using data mining techniques on over 250,000 (yes, that’s 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) – https://cfinitiative.org/
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 Lipkin’s 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 CAA’s biobank the CFI’s 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
Fatigue Consultation Clinic – https://www.fcclinic.com/index.htm
- Going Digital – “There’s gold in them hills”- there’s 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 Clinic’s 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 doesn’t 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) https://www.offerutah.org/index.htm
- Professional Conference – Dr. Bateman’s 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 – OFFER’s 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 https://drlapp.com/
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 https://chronicfatigue.stanford.edu/
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. Montoya’s 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….Here’s 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 https://www.treatmentcenterforcfs.com/CFS_Foundation/index.html
Dr. Lerner is excited (!) Now working with another EBV expert, Dr. Ron Glaser, 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 they’re picking up evidence of the early proteins he believes are present. The Glaser/Lerner study will continue and they will lobby the NIH for funding to develop an easier, less expensive Elisa test.
Mt Sinai ME/CFS Research Center – Dr. Enlander
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 we’ll 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.
Neuro-immune Institute at Nova Southeastern (NSU) in Broward Cty, Florida – Dr. Klimas
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”
Pain and Fatigue Study Center – Dr. Benjamin Natelson, Beth Isreal Medical Center – New York
A physician/researcher Dr. Natelson formerly ran one of the four NIH CFS research centers and has been studying ME/CFS for many years. One of his research projects underway brings to fruition almost a decade of research suggesting ME/CFS is a brain disorder.
- A Brain Disorder – One of the more intriguing findings of ME/CFS research over the past ten years has been Natelson’s findings that cognitive problems, cerebrospinal fluid problems, and abnormal brain blood flows and lactate levels are more present in ME/CFS patients who are not depressed than in patients who are depressed.
- CDC Diagnostic study – Natelson is part of a group of ME/CFS physicians taking part in a CDC sponsored study which could lead to a new definition.
PHANU (Population Health and Neuroimmunology Unit) – Dr. Marshall-Gradisnuk, Dr. Staines – https://www.bond.edu.au/faculties-colleges/faculty-of-health-sciences-and-medicine/research/research-groups-centres/population-health-and-neuroimmunology-unit/index.htm
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 they’re 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 PHANU’s director, Dr. Marshall-Gradisnuk, is coming up shortly.
Simmaron Research Foundation – Dr Peterson- https://simmaronresearch.org/
One of the latest entrees to the ME/CFS research scene, Simmaron is building for the future. Their non-profit status is in, their Boards (of Directors, Scientific Advisory) are intact and they’re currently engaged in three studies
- Lipkin XMRV study
- Spinal fluid – an immunological spinal fluid study
- Lipkin CFI pathogen study
On a side note Dr. Peterson is in the process of moving, after decades in his present office, to bigger and better digs.
Whittemore Peterson Institute – https://wpinstitute.org/
Dr’s 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 Kerr’s 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 we’re due for one more ‘splash’. Stay tuned….
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