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M.E. Research
ME/CFS Biobank awarded grant
The Biobank project at the London School of Hygiene & Tropical Medicine, launched in 2011, has previously
been featured in the Quarterly (see Issue 33, summer 2012, p14).
Since 2011 a consortium of charities – ME Research UK, the ME Association and Action for ME, plus a private
donor – has been funding the ‘establishment phase’. The project received a major boost with in July 2013 with
an award of over £1 million from the National Institutes of Health in the US.
Dr Eliana Lacerda, one of the lead researchers on the project, said, “The grant provides a huge boost to the
Biobank, which will enable more research into the causes of ME/CFS and ultimately help those affected.”
In providing initial funding, the hope had always been that a major funder would contribute funding for a project
to allow analysis of the samples, and help with the continuation and expansion of the Biobank resource.
The grant will enable important research on the immunology and genetics of ME/CFS, and help to expand the
Biobank to store samples from over 500 participants, which will be made available to medical researchers
internationally. The hope for the longer term is that this vital piece of research infrastructure will become a
repository for blood and tissues from many thousands of people with ME/CFS.
Erinna Bowman of the Biobank will be speaking at an event in Bristol on the 5th of February 2014- see page
27 Ed.
Search for the aetiology of ME/CFS
Development of a diagnostic system based on microbiological biomarkers
ME Research UK is providing funding to “pump prime” this project, which is part of a larger investigation by
Swedish researchers led by Prof Jonas Blomberg on the development of biomarkers in ME/CFS.
Traditionally, myalgic encephalomyelitis has been associated with “outbreaks” of an epidemic character such as
the famous example in 1955 at the Royal Free Hospital, London. Even today, around half of all
ME/CFS patients – non-epidemic cases seen in clinics all over the developed world – report that their illness
started with an acute, infectious-like episode. So, it’s no surprise there has been research interest in which
infectious agents might be involved, either in causing the illness or in maintaining its severity.
Given the potential importance of the role of infection in the illness, the aim of this study is to “interrogate”
exhaustively a group of ME/CFS patients for evidence of a specific persistent or past infection. The team will
hunt for nucleic acids from and antibodies (primarily immunoglobulin G) against microbes previously reported
to occur in elevated amounts or increased frequency in ME/CFS patients. The researchers will use novel
multiplex technology which allows one blood sample to be tested for a large number of different infectious
agents at the same time. The technique means that multiple pathogens are tested for simultaneously, which
diminishes variation between assays and tests, and reduces assay time and costs.
The development phase will involve the refinement of a variation tolerant capture multiplex assay (VOCMA)
capable of probing for a large number of potentially relevant infectious agents. In the major phase this
technology will be used to probe for the identifying signatures of microbes to around 15 infectious agents
previously reported to be connected with ME/CFS. The method is flexible: it can be adapted to include new
microbes, and if some microbes do not yield useful information, they can be excluded. The agents investigated
will include RNA viruses (such as enteroviruses); small DNA viruses (such as parvovirus); large DNA viruses
(such as EBV and herpes virus 6); and bacteria, including Staphylocci, Borrelia, Chlamydiae and Mycoplasma.
In addition, sensitive antibody tests will establish whether patients have ever been in contact with infectious
agents.
Prof. Blomberg says: “Given the range and scope of intriguing findings by separate research groups, the
situation is ripe for creation of a set of biomarkers. Some might be proteins in cerebrospinal fluid or blood,
some might be immunological, and some might be microbiological (nucleic acid and antimicrobial antibody) as
our investigation using multiplex technology hopes to reveal. Together with good clinical data (including
neuroimaging), I think we have a chance of creating a robust set of criteria which can aid in the diagnosis and
perhaps also reveal more about the origins of ME/CFS.”
The above reports are based on information from ME Research UK
www.meresearch.org.uk
The Open Medicine Institute (USA)
The Open Medicine Institute (OMI) was founded in 2009 by Dr Andreas Kogelnik. OMI initiates Innovative
ME/CFS Research Funded by grants from the Edward P. Evans Foundation and the Neuro-Immune Disease
Alliance.
The Open Medicine Institute say: ME/CFS is a debilitating disease affecting neurologic function, metabolism,
hormonal regulation, circulation/blood pressure, and overall well being. Patients with ME/CFS desperately
need answers. We are convinced these answers are readily available if we apply the best resources in a largescale, concerted effort. Bringing together the right experts and the most advanced technologies to deliver
actionable results is a necessary condition for success that has been a long time coming to this field.
THE OMI-MERIT INITIATIVE
MERIT stands for ‘ME Roundtable on Immunology and Treatment’. The initiative is based on the collaborative
efforts of an international network of leading clinicians and researchers, comprising representatives from the
US, Canada, Sweden, Israel, Norway,
Australia,
Italy, UK, Germany,
and New Zealand. (There is however
only one member who is based in the UK, a clinician in private practice. So no NHS or research representation
from this country.)
in June 2012, OMI invited engaged, established scientists and physicians to a two-day session to address
practical issues and identify achievable targets with a focus on research projects that deliver results for patients
in the shortest amount time.
A list of Priority Projects was established, including A Large-scale trial of Rituximab and Valgancyclovir, and
an International Neuro Registry and Biobank.
These priority projects which have now attracted funding:
 DNA Genetics - a study investigating the role of genetics and potential heritable risk in this debilitating
chronic disease;
 Treatment: Natural and Over-the-Counter Substances - a study examining the potential benefit of a therapy
with Moringa oleifera (plant substance), this project will be the first to apply molecular biology tools and
standardized scientific methods and to evaluate a non-pharmacologic substance with reported anecdotal
benefits in treating ME/CFS.
Bringing these two themes together, in a recent announcement the OMI is seeking funding to study the impact
of B12 and Folate supplementation. This follows physician reports that a substantial proportion of their
ME/CFS, Fibromyalgia, and Lyme patients with a MTHFR gene mutation experience significant reduction in
fatigue and cognitive symptoms with B12 and Folate supplementation.
Most patients or doctors do not know about this relatively inexpensive therapy. The OMI is launching a multisite, multi-country, clinical trial to confirm these findings, with a view to bringing symptom relief to many
patients around the world.
The 100-patient, multi-center trial will cost $275,000. With $30,000 donated, the OMI are now asking for small
contributions - $12 (about £7) or multiples of same - to help reach the target. The goal is to fund the study by
Feb 14, 2014, start it in March, and have results by end of the year.
This International Clinical Trial will be lead by the IOM, in collaboration with Simmaron Research, US (Dr.
Dan Peterson) and Gottfries Clinic AB, Sweden.
If you would like to support this initiative, you can donate on line at: http://goo.gl/zIJ4pv
If you do not have on line access, contact details of the OMI are on the back page. Linda Tannenbaum, who is
co-ordinating the fundraising effort, is happy to take queries by telephone: 01-818-231-6994.
Invest in ME Projects
A role for a leaky gut and the intestinal microbiota in the pathophysiology of myalgic
encephalomyelitis
In order to fund this work, patient volunteers set up the Let’s do it for ME campaign. It took two years to raise
the necessary funds of £100.000, but earlier this year Invest in ME were able to announce that the funds were
available to begin a PhD studentship at University of East Anglia /Institute of Food Research. This began under
the guidance of Professors Carding, a gut immunologist and the IFR and Prof Wileman, director of the
Biomedical Research Centre, in October 2013.
Rituximab Trial
Invest in M.E. has a major fundraising intiative in progress aimed at setting up a Rituximab trial in the UK.
Jonathan Edwards, Emeritus Professor of Connective Tissue Medicine at University College London (UCL), has
agreed to advise IiME on all aspects of the trial. He is known worldwide for his work in B cell immunology and
as lead researcher in the clinical trials of Rituximab for rheumatoid arthritis.
A dedicated website has been set up about this initiative: http://www.ukrituximabtrial.org/