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New Insights into the Pathophysiology and Treatment of CFS
Paul Cheney, M.D.,Ph.D.
October 2001


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The CDC Case Definition

  • Major Criteria (2)

  • Minor Criteria (8 -- minimum of 4)

  • Exclusion Criteria (several)

 

 

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The CFS Symptom Triad

  • Energy

  • Brain

  • Pain - (not seen in 5%)

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    Neuropsychiatric Phenomena

    Cognitive Disturbances - 99% of cases

    Processing Speed
    Short term Memory (Auditory)
    Sensory and Information Overload
    Word Searching
    Multi-tasking Problems
    Spatial Disorganization

     

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    Neuropsychiatric Phenomena

    Mood Disturbances - 60% of cases

    Depression - rarely severe
    Anxiety Disorders
    Mood Lability

     

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    The Dysfunction of CFS

    Symptom Dysfunction - The misery Component

    Dynamic Dysfunction - The Action Component
    Dynamic Dysfunction - Push-Crash Phenomena

     

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    The Evolution of CFS

    Phase One - The Onset or Trigger Phase

    Phase Two - The Triad Phase

    Phase Three - The Dynamic Injury Phase


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    The Key Scientific Literature

    Phase One -- Suhadolnik et al (Temple U. - USA)
    Komaroff et al (Harvard U. - USA)
    Klimas et al (Harvard U. - USA)

    Phase Two -- McGregor et al (Newcastle U. - NSW)
    Pimental et al (UCLA - USA)

    Phase Three -- Demitrack et al (NIH - USA)
    Moorkens et al (Antwerp U. - Belgium)
    Urnovitz et al (Berkeley, CA - USA)

     

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    The Physical Exam

    Immune Activation

    Lymphodynia (PCN,SCN) - 80% - 90%
    Crimson Crescent - 80%
    Fever - 25% > 99.4F

     

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    The Physical Exam

    Sub- cortical Brain Injury

    Vestibular Dysfunction -- 94%
    Hyper-reflexia -- 80%

     

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    The Physical Exam

    Metabolic Disturbances

    Shortened Breath-holding - 70%
    Poor oxygen transport - 92%
    Fingerprint Destruction - 50%
    Sub-normal temperature - 30% < 98.0F
    Low Systolic B/P - 50% < 100
    Orthostatic B/P or Pulse Changes - 40%
    Hypertension is very rare - < 2%

     

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    Oxygen Transport

    Blood Acid-Base Status (Alkaline Inhibits)

    Red Cell 2-3 DPG Status (Lower Inhibits)

    Mitochondrial Function

    Micro-circulation
    Alkaline blood constricts
    Low magnesium constricts
    Increased sympathetic tone constricts
    Total blood volume (diminished in CFS)

     

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    Mitochondrial Function

    R-Nase-L Activity (Inappropriate)
    37 kda protein

    RNase-L Activity (Appropriate)
    Microbial activity (i.e. HHV,Mycoplasma)

    Xenobiotic Poisoning
    Gut,RCT,Jaw,Environment

    Heavy Metals (especially Mercury)

    Growth Hormone Deficiency

    DNA Gene Re-arrangements or Alterations in Normal Expression

     

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    Magnetic Resonance Spectroscopy

    N-20

    70% of patients show elevated lactate levels in the thalamus and surrounding structures

    10% of patients show reduced NAA peak and elevated Choline peak, also in the thalamus and surrounding structures

    Recent study out of the University of Liverpool shows similar findings in the hippocampus of CFS patients

     

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    VO2max

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    The Key Scientific Literature

    Step I -- Holmes et al (CDC - USA)
    Step I -- Bell et al (Lyndonville, NY- USA)
    Step I -- Rowe et al (John Hopkins U. - USA)

    Step II -- Zivin et al (Scientific American - USA)
    Step II -- Moorkens et al (Antwerp U. - Belgium)
    Step II -- Cox et al (The Lancet - UK)

    Step III -- Bland et al (Healthcom Inc. - USA)

    Step IV -- Beck et al (NEJM - USA)
    Step IV -- Swede et al (Karolinska Inst. - Sweden)

     

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    The Key Scientific Literature

    Step V -- Pimental et al (UCLA - USA)
    Haley, Boyd et al (U. Kentucky - USA)
    Ray et al (Dallas, TX - USA)

    Step VI -- Bland et al (Healthcom Inc. - USA)

    Step VII -- Bennett et al (U. Oregon - USA)
    Moorkens et al (Antwerp U. - Belgium)

    Misc. -- Carter et al (Hemispherex Inc - USA)
    Ablashi et al (NIH - USA)
    Berg et al (Hemex Inc - USA)

     

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    Treatment Overview

    Phase I -- High RNase-L Activity / TH2 Activation / with or without coagulopathy

    Ampligen

    Anti-microbial Therapy
    (quantitative PCR Now Available)

    Immune Modulation @
    (TH2 - TH1 Shift) @

    Anticoagulant Therapy

     

    Paul Cheney is no longer using Commonwealth Biotechnologies TAQMAN Assay at all. (It did a quantitative measure of the usual viruses.)

    Cheney now uses Medical Diagnostic Laboratories - the ultimate bug lab, he calls it. It is fully licensed, unlike Commonwealth, which is not a commercially licensed lab at all - it's a biotech company.

    Cheney uses Medical Diagnostic Labs CFS Panel  - it tests for EBV, CMV, HHV 6a, HHV 6b, HHV 8, Herpes Simplex, several strains of Mycoplasma, and several strains of Chlamydia.

    He will also on occasion use their mycology panel. Candida, aspergillus, others molds/fungus, etc.

    He trusts all their tests, including Lyme.

    www.mdlab.com  1-877-269-0090

    This info is as of Nov 26, 2002.

    Carol S

    Paul Cheney is now using Medical Diagnostics Lab to test for all the herpes virsus (CMB, EBV, HHV 6a, HHV 6b, HHV 8), the Mycoplasmas and Chlamydias. It's quantitative and is called, appropriately, the CFS Panel.@ Any doctor can order a test kit to be sent to you and draw the blood. The lab files with most insurance.

    One immune panel that Cheney uses is the Molecular Biology of CFIDS, offered by Immunosciences Laboratory.
    @ It tests the regular RNase L, NK function, Alpha Interferon, 2-5A Synthetase, Apoptosis, Fas (CD95), Protein Kinase RNA. The website contains good info on these as well. Any of the above are available individually, as well as part of the whole panel.

    Carol S 11-03-2002


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    Treatment Overview


    Phase II --Xenobiotic Toxicity

    Source Attenuation
    Gut , teeth / jaw bone , environment

    High Dose Hydroxycobalamin
    MSM
    Whey Protein Concentrate
    Guaifenesin
    Growth Hormone

     

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    Treatment Overview

    Phase III - CNS Injury / DNA Damage

    Growth Hormone Stimulation
    Secretatgogue Therapy - limited
    GH Injections - low dose

    Fetal Bovine Growth Factors - limited
    Mesenchyme / liver
    Thymus / Adrenal
    CNS

     

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    Initial Treatment

    Principles

    Integrated Program (no one element suffices)

    Stepwise - (move to next step every two weeks as tolerated
    )
    Patience is required - (8 months typical)

    Failure in some patients
    High 37 kDa RNase-L activity (Phase I illness)
    Non-compliance

     

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    Treatment - Step 1

    Lifestyle Adjustments

    • Limit setting
    • Oligo-Antigenic Diet
      Digestive enzyme support
      Betaine HCL support (careful)
    • Exercise Prescription
      Anaerobic and rebound exercise
      Limit anaerobic exercise to tolerance

     

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    Treatment - Step I

    General Metabolic Support

    Blood Volume - Adaptogenic Expansion
    Gookinaid @ ERG / Isotonic Home Recipe

    Oxygen Transport
    Daily Breath Holding Exercises
    Diamox LA 500 mg daily

    Autonomic Nervous System Regulation
    Rebound exercises
    Body Work

     

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    Treatment - Step I

    Other paths to Advance Self Healing

    Autonomic Balance / Stress Reduction
    Conscious Beliefs and Attitudes (CBT / Siegel)
    The Unconcious Wound (Imago Therapy)
    The Transpersonal Self (Spiritual)

     

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    Treatment - Step II


    Neuroprotection via Threshold Potentials

    NMDA Blockers
    Parenteral Magnesium and Taurine @
    Histamine Blockers (Doxepin Elixir) @

    GABA Agonists
    Klonopin (Day and Night) @ @
    Neurontin (Night or Day and Night) @
    GABA (500mg - 1500mg / Night) @
    Valerian Root (Night)

     

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    Treatment Step III

    DNA Protection

    Antioxidant Vitamins

    Bioflavinoids

    Extra Vitamin E

    Special Supplements
    CoQ-10 (fat soluble)
    Lipoic Acid (physiologic)

    Omega-3 and Omega-6 Essential Oils

    Melatonin (if needed)

     

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    Treatment - Step IV

    Neuroprotection from CNS Toxicity

    CNS Xenobiotic Detoxification
    Parenteral Hydroxycobalamin
    Starting at 10,000 mcg IM HS


    CNS Homocysteine Detoxification @
    Pyridoxal-5-Phosphate
    Folic Acid
    Trimethylglycine @
    L-Serine @

     

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    Treatment - Step V

    Toxic Source Attenuation

    GI Tract - Microbial Toxicity Source
    Olive Leaf Extract
    S. Boulardii (limit)
    Organic Botanical Extracts (limit)
    Glutamine Source
    Polymicrobial Probiotic without FOS

    Oral Cavity - Microbial Toxicity Source
    Herbal Tooth and Gum Tonic
    Remove or detoxify RCT and Cavitations

     

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    Treatment - Step V

    Toxic Source Attenuation

    Heavy Metals (Load and Toxic Potential)
    Amalgams - Be very careful of Removing
    Fish
    Water Supply

    Home Environment
    Home Mold Plate Testing
    Air Duct Inspections and Cleaning
    Electronic Air Duct Inserts - Mold
    HEPA / HEGA Air Filters
    Personal VOC Badges (3M)
    CO Detectors

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    chlorella

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    Treatment - Step VI

    Detoxification - Beware of Toxic Mobilization

    Hydroxycobalamin (start at 10,000 mcg / day)
    Methylsulfonylmethane (MSM at 6-12 g / day)
    Whey Protein Concentrate (10-20 g / day) @
    Guaifenesin (short acting - start at 300 mg Q12h) @
    Growth Hormone (0.2 mg SQ MiniQuick Q- week)

     

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    Treatment - Step VI

    Novel Forms of Detoxification

    Colon Hydrotherapy (Should be Time Limited)
    Hydrogen Peroxide / Epsom Salts Bathing (BIW)
    infrared Light Pads Over Lymphatic Drainage Sites 2-40 minutes TIW (Activates NOS3)
    Deep Tissue Massage BIW
    Infrared Sauna at Low temperatures TIW

     

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    Treatment - Step VII

    Enhancing the Phase III Recovery Trajectory

    Growth Hormone Injections (QW-BIW)

    Fetal Bovine Growth Factors (BIW-Limited)
    Mesenchyme and liver, thymus, Adrenal, Brain

     

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    Growth Hormone / Growth Factor Study

    Preliminary Results

    Nine have completed or are poised to complete the study

    6 of 9 or 67% are responders (good to excellent)

    Three are either on hold or are very early in the study - too early to tell

     

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    Growth Hormone / Growth Factor Study

    Preliminary Results

    Growth hormone must be kept at low doses given once or twice weekly

    Patients must be immune modulated before starting GH or GF

    Growth factor dose needs to be adjusted downward similar to GH

    Question answer session - 30 minutes

    Carol Sieverling CFSFMExperimental Cheney video still available 03-18-2002

    The Cheney video from his October 2001 seminar will be available for some time to come. We're on our third order from the production company!

    In the US: $15 check made out to the CFS/FM Support Group of DFW and mailed to 513 Janann St, Euless TX 76039. A phone number on the check or giving us your email address could prove useful if there are problems or questions.

    Outside the US: $20 in cash or a check drawn on a American bank. (Sorry, other forms of payment involve significant collection fees for us.) To my knowledge, the cash has always arrived safely. Mail to same address - and please be sure your equipment is compatible with North American videos.

    The videos should be available for quite sometime. We can reorder them indefinitely from the production company.

    Carol Sieverling
    site mail

    My (Bob Joy) guai-whey website @
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