Dr. Kenny De Meirleir's lecture on ME/CFS - November 3rd 2007.

http://www.immunesupport.com/library/showarticle.cfm/id/8489

Dr. Kenny De Meirleir spoke in Perth, Western Australia on November
3rd 2007. Kenny has seen over 12000 CFS patients and first became
interested in CFS in 1989. His research team has performed over 4000
in vitro experiments and published many peer reviewed articles on
CFS. I attended both his talks to the general public and to health
professionals, plus got the opportunity to ask a large number of
questions after the professionals talk. The following is based
on written notes and from memory, not directly quoting Kenny.

Blake Graham, B.Sc (Honours)
Clinical Nutritionist
---------------------------------------------------------------------

Gastrointestinal problems.

More than 80-90% of patients have gastrointestinal symptoms.
Gastrointestinal abnormalities range from one end of the
gastrointestinal tract to the other.
Saliva pH is low (below 7 - acidic) which leads to both dental
problems and disturbed oral flora. Patients display delayed gastric
emptying.
Biopsies of gastric mucosa on patients show all patients have
atrophic gastritis.
When biopsy of the cecum is performed infiltration of lymphocytes is
also found in all patients. In Kenny's last 100 patients a point 2
cm's right then 2 cm's down from the umbilicus is tender after mild
pressure. This is the point just above the cecum. Tenderness is a
sign of imbalanced intestinal bacteria.

Intestinal mucosal health.

Patients have a compromised gastrointestinal mucosal integrity
which contributes to immune activation and is a major factor in
CFS. The cause of intestinal barrier damage is multifactorial and
complex. One factor is likely viruses (EBV and HHV6). EBV attacks
the immune system of the gut. Kenny has observed a significant
proportion of patients with CFS have relatives with Crohn's Disease.
A genetic predisposition to gastrointestinal problems likely exists.

Intestinal flora.

Kenny routinely does a blood test for IgA and IgM for a range of
intestinal bacteria called the Immunobilan test. He generally starts
treatment with antibiotics to lower levels of problematic bacteria
then adds in probiotics.
Kenny did a small study using the antibiotic ciprofloxacin and high
quality probiotics. Patients reported a 58% improvement and elastase
dropped 74%. Kenny most commonly uses a high potency multi-strain
probiotic called VSL#3 (www.vsl3.com/) which contain 450 billion
bacteria per serve. [Normal probiotics contain 25 billion or less.]
It mimics the bacteria normally present in the bowel. He also uses
Mutaflor which is a supplement of healthy intestinal E. coli
bacteria. At present this product is only available directly from
Germany where is it produced. (www.metpharmacy.de/)

Fructose malabsorption and lactose intolerance.

In a study of 143 patients fructose malabsorption was found in 45.8%
of patients. Lactose intolerance was found in 20.3%. Both can be
measured via a simple hydrogen breath test. 25 grams of fructose or
lactose is administered to a fasting patient. Breath hydrogen levels
are measured before administration and at 30 minute intervals for
3.5 hours. Sugar malabsorption contributes to intestinal dysbiosis,
among other issues. Fructose malabsorption is treated with
a fructose poor diet, while lactose intolerance is treated with a
lactose free diet. A high baseline hydrogen breath measurement
indicates intestinal bacterial overgrowth. Clinicians can buy the
equipment to do the fructose and lactose breath testing in their
offices. Kenny believes these intolerances were present before the
illness onset, acting as a predisposing factor and may also get worse
after illness onset. He observes these issues are often present in
family members. Common associations with fructose malabsorption are:

a.. Fatty liver. Most patients with fatty liver have fructose
malabsorption.
b.. Steatorrhea (fat in the stool/fat malabsorption).
c.. Constipation whereas those with lactose intolerance are more
likely to have diarrhoea.
d.. Hypoglycemia. Most patients with significant hypoglycemia have
fructose malabsorption.
e.. Sensitivity to tyramine.
f.. Bloating.

Gluten intolerance.

Gluten intolerance is also found in a subset of patients. He uses
IgG blood testing for testing gluten sensitivity. Sensitivity to
gluten is a spectrum with celiac disease at one end and normal
tolerance at the other, rather than tolerance being an all or
nothing issue. A range of different levels of sensitivity exist.

Diet.

Kenny's patients consult with his dietitian. A diet is created based
on tolerance to fructose, lactose and gluten. He recommends patients
drink 3-4 litres of water/day.

Heavy metals.

Kenny uses the Melisa metal reactivity test (www.melisa.org/) to
assess sensitivity to heavy metals. He also uses provoked urine
testing using IV DMPS and EDTA. The two heavy metals most
significant are mercury and nickel. Nickel is found in soil and
enters our food supply. Amalgam fillings are one source of
mercury and Kenny suggests careful removal when patients are
sensitive to mercury. Kenny presented in vitro evidence supporting
greatly increased sensitivity to the toxic effects of mercury in CFS
patients. He has found palladium in some patients and based on this
elevation is able to predict where in Belgium patients live with a
high degree of accuracy. Increased levels of heavy metals are likely
due to increased intestinal uptake and genetic abnormalities is
certain detoxification proteins, including multidrug-resistance
protein 1 (MRP1). The two options for treatment include
pharmaceutical chelators (DMPS or DMSA) or combination products of
herbs/nutrients (dose = 2x1/day) designed for detoxification. The
names of the Belgium herbal/nutritional formulas are:

a.. TMD (Toxic Metal Detox -
www.labosp.com/lib/compendium_an/INT_165.pdf).
b.. HMP (Heavy Metal Protect -
www.labosp.com/lib/compendium_an/BE_165.pdf).

These products contain:

a.. GSH (reduced glutathione)
b.. Lipoic acid (tiotic)
c.. SOD
d.. Selenomethionine
e.. Vitamin E (DL-alpha-tocopherol)
f.. Pycnogenol (OPC extract of grape seed)
g.. Vitamin B2 (Riboflavin)
h.. Mycelium shitake (atomized)
i.. Willow extract


Glutathione.

Glutathione is low in patients. It can be treated via taking
lipocuetical glutathione made by Readisorb. (www.readisorb.com/)
Normal oral glutathione is ineffective as it is broken down in the
gut and transdermal glutathione has variable metabolism. The benefit
of IV glutathione is relatively short lived. N-acetyl-cysteine (NAC)
can also boost glutathione but large doses are needed (1.8 grams).

Nutritional supplements.

The basic nutritional supplements Kenny recommends commonly to
patients are:

a.. Lipoceutical glutathione
b.. Vitamin C
c.. Lipoic acid
d.. Coenzyme Q10
e.. Alkalizing agents (e.g. potassium bicarbonate).
f.. Acetyl-L-carnitine.

Nexavir and vitamin B12.

Nexavir (Kutapressin) is used effectively in combination with
subcutaneous vitamin B12. In one study of a general group of CFS
patients, 63% of patients in the treatment group responded while
only 17% of the placebo group responded. In Kenny's experience
around half of patients are pain free in 2-3 months and sleep
often normalizes within a period of 3 days. Nexavir is a liver
extract from pigs. It cuts immune activation and lowers elastase. 10
mg's of vitamin B12 are used twice weekly in the form of methyl or
hydroxy B12. [Most B12 shots contain 1 mg.] B12 scavenges nitric
oxide (NO), often clearing up brain fog and helping with cold
extremities. Nexavir can be ordered from countries other than the
U.S. via a Texas pharmacy called Nexco Pharma (www.nexcopharma.com/).

Isoprinosine and inosine.

When asked about the immune modulating medication Isoprinosine
(which boosts natural killer cells), he mentioned that the basic
amino acid version of inosine is as effective.

HHV6.

The role of HHV6 is being actively debated. A subgroup of patients
have a mild HHV6 related encephalitis. HHV6 can be treated with
antivirals (e.g. valcyte) and immune modulators. HHV6 is associated
with neurological symptoms with extreme fatigue and no pain.
Patients with active HHV6 are usually in the 15-35 age group. He
doesn't think herpes viruses are the cause of CFS but rather
become reactivated.

Mycoplasma.

Mycoplasma is active in the presence of low NK and T cell function.
Mycoplasma releases antigens which further disrupt immune function.
Antibiotics (e.g. doxycycline) for mycoplasma positive patients have
shown success although it is unclear if this is due to antibiotics
treating mycoplasma, rickettsia or intestinal bacteria.


Chlamydia pneumoniae.

Chlamydia pneumoniae is present in a subgroup of patients. It
stimulates heat shock proteins leading to immune activation. It can
be treated with azithromycin.

Rickettsia, bartonella and coxiella.

8-10% of Kenny's patients have an active rickettsia, bartonella or
coxiella infection. Only 17% remember having a tick bite. These
infections can come from ticks, dogs and cats. Ticks can carry many
viruses and other infections. Australian research has found
Rickettsia in a significant amount of Australian patients.

Candida.

Candida infection is found in some patients and is tested for via
IgG. This is treated via diet and antifungals. Yeast is typically
resistant to nystatin so other antifungals are used. A recent study
found 20% of patients have elevated bowel candida levels.

Mycotoxins.

Some patients are affected by mycotoxins, toxins produced by
environmental mold. Kenny suspects mycotoxins when two people in the
same house have CFS or when symptoms significantly reduce when
leaving your home for a period of days. It is more likely to be an
issue in poorly ventilated houses and is known to act as an
immune suppressor. Aspergillus Niger has been cultured in some homes
of CFS patients. Mycotoxic patients have very low glutathione levels
and glutathione helps the removal of mycotoxins from cells.

Thyroid function.

Thyroid dysfunction is present despite normal blood tests. There is
both poor conversion of T4 to T3 and peripheral resistance to T3.
Peripheral resistance is present in all dys-immune diseases. An
immune activation protein has a 98% homology with the T3 receptor,
binding to it and competing with T3. Kenny recommends treating with
pure T3. He recommends starting low and titrating up.
Patients appear to have destruction of T3 receptors over time and
after a long duration of CFS (e.g. 20-25 years) often do not lose
weight on extremely low calorie diets (e.g. 800 calories) due to
thyroid insensitivity.

Sleep.

When asked about treating insomnia Kenny said to take away the
source of the problem. He stated that with nexavir his patients
often sleep normally after 3 days. If sleep cycle shift is present
he treats with melatonin (6 mg's) or an old anti-epileptic. [I did
not catch the name.] He does sleep studies for sleep
apnea and restless leg syndrome when indicated.