Dr. Kenny De Meirleir spoke at the
Whittemore Peterson Institute on January 28, 2013. The following
summary of his talk was posted on January 30 on WPI's blog, Wings of Hope.
Dr. Vincent Lombardi, WPI Research
Director, introduced Dr. De Meirleir as one of the world's foremost
experts in ME and primary research collaborator on WPI’s current
RO1 federal grant. He also stated that Dr. De Meirleir has authored
hundreds of publications and several books on ME/CFS and other
medical research topics. Dr. Daniel Peterson, who was in the
audience, was also recognized for his outstanding contributions to
this field of medicine.
Dr. De Meirleir's talk included years
of significant research which is very technical and complicated.
Therefore, this review is not meant to be a summary of the underlying
science but rather a summary of the practical application of this
work. However, we will place a recording of this talk on the WPI
website: www.wpinstitute.org, as soon as possible for those who
are interested in the actual research data.
Dr. De Meirleir presented a
comprehensive lecture on the many factors that appear to play a role
in the pathophysiology of ME. In support of his
conclusions, he drew information from other well-known researchers in
the field including Drs. Chia, Klimas, Peterson, Mella and Fluge, as
well as his more recent clinical studies of patients from Belgium and
Norway. After the one hour and fifteen minute presentation,
interested patients, researchers, doctors, nurses, and medical
students were given a chance to ask questions.
Dr. De Meirleir uses a number of
diagnostic tests to diagnose his patients’ underlying biological
abnormalities and to guide his successful treatment protocols.
Biomarkers include abnormally low NK cell number and function,
cytokines indicating a shift in the balance of Th1 and Th2 immune
responses, up regulation of Th17 immune cells, and abnormal levels of
nagalase and elastase activity. He also tests for various active
infectious agents including Borrelia, Bartonella, Brucella,
mycoplasma, parasites, and various herpes viruses. He stated that
environmental and genetic factors contribute to aberrant protein
conformation in some patients. Other diagnostic tests
include fecal analysis and tests for levels of LPS or soluble CD14 as
an indicator of gut inflammation.
Basic to Dr. De Meirleir’s treatment
protocol is a plan that addresses specific dietary restrictions. He
reported that many patients are fructose, lactose, casein and/or
gluten intolerant. His patients often begin feeling better after
eating a diet free of these substances, as they are most likely to
cause an inflammatory response. In addition, he includes a fecal
microbial analysis to determine whether or not to begin treatment
with pulsed antibiotics. Based on the fecal analysis, which indicates
whether or not his patients are suffering from a compromised
intestinal barrier, he also prescribes specific probiotics,
prebiotics such as lactoferrin, and digestive enzymes. When viruses
or other pathogens become chronic Dr. De Meirleir prescribes
antiviral therapies and/or additional antibiotic treatments.
It is generally accepted knowledge that
ME patients have difficulty controlling various herpes viruses and
other pathogens, in addition to exhibiting abnormal natural killer
cell function. Subsequent searches for immune modulating drugs have
included trials of several different products. Gc-MAF is a macrophage
stimulating substance that has recently shown great promise.
Dr. De Meirleir highly recommends that patients address any
leaky gut issues before beginning treatment with Gc-MAF. He
also mentioned risks that can be associated with this type of
treatment. Risks include a shift to autoimmunity and
an immune reconstitution reaction known as IRIS although none
of his patients have developed autoimmune disease as a result of
Gc-MAF treatments and less than 20% have experienced IRIS. Dr. De
Meirleir routinely monitors his patients for IRIS cytokines after
starting them on very low doses of Gc-MAF, as a method of prevention.
Other immune supportive therapies include the use of
Kutapression/Hepapressin complex (Nexavir), which has been reported
to inhibit EBV and HHV-6, and Isoprinosine for those with low serum
uric acid levels. Finally, Rituximab, a B-cell depletion immune
therapy, has been used successfully in a small trial of patients with
ME by oncologists Fluge and Mella. Because of the delayed therapeutic
response of two to seven months, the authors of this study remarked
that there is a possibility that ME has an autoimmune component.
(Note: These two physicians are now looking for collaborative
research sites and additional funding to engage in a much larger
clinical trial due to their 67% rate of success.)
Dr. De Meirleir concluded his talk with
a detailed slide describing the various pathways that are disrupted
in ME and several other autoimmune diseases. He spoke about a
continuum of autoimmune diseases including ME, lupus, RA, type 1
diabetes, and remitting MS that involve a dysregulation of two
important immunological pathways, 2’-5’OA synthetase and Th1/Th2
immunity.
It was evident from his lecture that
the key to Dr. De Meirleir’s success with patients is his
recognition of the serious infectious and immunological issues facing
those with ME. His research provides strong evidence for the support
of biological testing and treatment.
WPI is thankful to Dr. De Meirleir for
his outstanding commitment to this patient population. We feel
fortunate to be able to provide his lecture as part of our mission to
support outreach and education. We look forward to sharing more good
news with you in the future.