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Introduction and Overview

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Introduction and Overview. Although it has been over 25 years since the CDC investigated an outbreak of this disease in northern Nevada, Chronic fatigue syndrome is ... – PowerPoint PPT presentation

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Title: Introduction and Overview


1
Introduction and Overview
  • Although it has been over 25 years since the CDC
    investigated an outbreak of this disease in
    northern Nevada, Chronic fatigue syndrome is
    still lacking an appropriate name, a concise
    biological definition and an agreed upon medical
    category.

2
1988 How Can Anyone Mistaken this illness for
Depression or Fatigue?
  • Strep throat and non-EBV mono in the same week.
    She had a fever, lymphadenopathy, severe pain and
    muscle weakness.
  • Doesnt recover but returns to school
  • First physical diagnosis Adrenal insufficiency.

3
Our 26 year Long Battle isnt Over
  • Number of years to diagnosis 2
  • Number of major medical institutions visited 4
  • Doctors and specialists consulted over 26 years
    includes pediatricians, gastroenterologists,(gast
    ro-paresis) cardiologists,(tachycardia)
    endocrinologists, psychiatrists, psychologists,
    internists, infectious disease specialists,(infect
    ions) hematologist oncologist,(severe anemia)
    surgeons,(gall bladder disease) family medicine,
    complementary

4
This is what patients want You can them get here!
Living healthy, happy and full of energy
5
This is where we are today people are still
asking
What is fatigue?
Are you sick or tired? Simple Can you
exercise the next day?
6
ME is
  • Characterized by inflammation, abnormal immune
    function, multiple infections, mitochondrial
    dysfunction, rapid disability and exercise
    intolerance
  • Complex and chronic
  • Relapsing and remitting and/or progressive

7
ME is not
  • Psychological depression
  • A benign disorder (one which resolves completely
    with therapy or does not impact lifespan)
  • A Somatization disorder (one in which there is
    no physical cause of disease)
  • A matter of will-power
  • Caused by too little sleep/tiredness
  • Caused by working too hard
  • Caused by childhood abuse

8
Medical Challenges
  • How does one explain an illness called, Fatigue?
  • Inappropriate name for one common symptom
  • Symptomatic Definition/diagnosis of exclusion
  • Lack of medical knowledge/not adequately
    explained
  • Physician shortage/those willing to treat
    patients
  • Diagnostics
  • Treatments/great variation depending upon
    physician
  • Lack of coordinated medical care with other
    medical specialists
  • Medical subspecialty (disease experts)
  • Public information is misleading, causing
    confusion and lack of support of those who are ill

9
A Disease with Many Names or are there Many
Diseases?
  • Myalgic Encephalomyelitis, ME
  • Post Infectious Fatigue or Chronic Fatigue
    Syndrome, Fatigue, CFS, CFS/ME
  • Other similar diseases or subgroups
  • Gulf War Illness Multi-symptom illness resulting
    in loss of physical and mental stamina
  • Mycotoxin Illness Multi-symptom illness due to
    mitochondrial and immunological damage from mold
    infections and their mycotoxins along with other
    pathogens found in water damaged buildings
  • Chronic /Post-Lyme Disease
  • Autism

10
The name Chronic Fatigue Syndrome has got to
go!
  • Fatigue has been reduced to tiredness
  • Fatigue is only one of many symptoms
  • Fatigue is not the most severe symptom
  • Fatigue is difficult to quantify and often
    confused with depression

11
Before Chronic Fatigue Syndrome it was called
Myalgic Encephalomyelitis (ME)
Dr. Ramsey described ME in 1956
A neurological disease Abnormal immunological
response of the patient to the organism.  Circulat
ory disorder Abnormal cerebral activity Any
excessive physical or mental stress is likely to
precipitate a relapse. Tends to be chronic
12
Compare Symptoms/Not Definitions
  • ME
  • Acute onset follows respiratory or
    gastrointestinal illness/low grade fever
  • Circulatory abnormalities/cold extremities/ashen
    pale
  • Cerebral symptoms/memory, concentration,
    emotional liability
  • Abnormal immunological response
  • Fluctuating symptoms
  • Chronic
  • CFS
  • Follows infectious illness/environmental toxins
  • Chronic infectious symptoms
  • Muscle pain/weakness
  • Neurological symptoms/memory, concentration/
    ataxia, seizures,
  • Dysautonomia
  • Post exercise malaise
  • Relapsing/remitting symptoms
  • Chronic

13
2011 Myalgic Encephalomyelitis International
Consensus Criteria
  • Myalgic Encephalomyelitis is an acquired
    neurological disease with complex global
    dysfunction.
  • Pathological dysregulation of nervous, immune and
    endocrine systems with impaired cellular energy
    metabolism, and ion transport are prominent
    features.

14
Other Biological Disease Definitions
  • Lupus is a chronic, autoimmune disease that can
    damage any part of the body (skin, joints, and/or
    organs inside the body) LFA
  • Multiple sclerosis (MS) is . A disease of the
    central nervous system that disrupts the flow of
    information within the brain, and between the
    brain and body. (MS society)

15
ICD-10 Chapter VI Diseases of the nervous
system (G00-G99)
  • G93.3
  • Post viral fatigue syndrome
  • Benign myalgic encephalomyelitis
  • They are joined

16
Challenges Yesterday and Today
  • Doctors
  • Patients
  • Families of those with ME
  • Researchers

17
Challenges for Physicians
  • No approved biological diagnostic tests
  • No FDA approved pharmaceutical treatments
  • Insurance coverage denied for testing and
    treatments
  • Need guidelines for emergency room, anesthesia or
    surgery

18
Challenges for ME/ CFS Patients
  • Name of illness trivializes impact and ignores
    reality of infectious and immunological aspects
    of disease
  • Lack of understanding of complexity and severity
    of disease
  • Difficulty finding doctors who are knowledgeable
    about ME
  • Lack of means to pay for
  • appropriate medical care

19
Challenges for Families
  • Lack of centralized accurate information
  • Lack of emotional support for entire family
  • Lack of medical support
  • Lack of financial support for medical care
  • Loss of income and/or functioning family member
  • Lack of educational support/guidelines

20
Challenges for Researchers
  • Too little research funding
  • Research definition lacks specificity
  • Patients are all grouped together
  • Groups of patients often dependent upon
    physicians practice
  • No national repository of patient samples
  • No clinical centers of excellence

21
Obstacles to Progress
  • Disagreement by most physicians and researchers
  • Definition needs to add biological information
    to be more concise
  • Most significant underlying feature should be
    stressed
  • ME has an ICD10 medical category (neurological)
    but it is not listed in the NIH research home
    NINDS, why not?
  • For most, CFS is still a diagnosis of exclusion
  • Most biological research has been ignored in
    government definition

22
Doctors Who Misunderstand
  • Internist If I dont know what it (abnormal
    viral titers) means it cant be important.
  • Neurologist I didnt read her medical reports
    because the facts might get in the way of my
    theory.
  • Neurologist I couldnt read her MRI it
    probably wasnt important anyway.
  • Surgeon I wont do her gallbladder surgery
    because she has CFS.
  • Cardiologist I cant treat her tachycardia
    because she has CFS.
  • ER doctor I could give her fluids if she had an
    immune deficiency.

23
CDC Definition Lacks Scientific Information
for CFS
  • Chronic fatigue syndrome (CFS) is a debilitating
    and complex disorder characterized by intense
    fatigue that is not improved by bed rest and that
    may be worsened by physical activity or mental
    exertion. 
  • Systemic Lupus Erythematosus is an autoimmune
    disease in which the immune system produces
    antibodies to cells within the body leading to
    widespread inflammation and tissue damage.

24
A New Beginning
25
Possible Solutions A Fresh Start because ME has
become CFS
  • Rename the disease perhaps after the person who
    first described ME Dr. Ramsey Ramseys
  • Use the CCC criteria for clinical definition and
    add a biological one sentence definition.
  • Seek international input to create suggested
    diagnostic and treatment protocols based on
    biological science not on psycho-social theories
  • Select a medical specialty to focus on this
    disease Neurology and/or infectious disease?

26
Why is a Name so Important?
  • Disease name and definition determines research
    emphasis and funding
  • Research identifies biomarkers of disease
  • Industry develops and sells diagnostic tests
  • Diagnostic tests lead to pharmaceutical
    treatments
  • Mandatory insurance coverage of testing and
    treatment
  • Knowledge equals better physician education

27
Keys to Defining Disease
  • Concise description one sentence that
    categorizes the disease neurological,autoimmune,
    infectious, toxic, inflammatory, mitochondrial,
    etc.
  • Identifies the effect of the disease on various
    parts of the body
  • Identifies the risks or complications associated
    with the disease

28
Biological Abnormalities Associated with ME/CFS
  • Immunological
  • low NK cell function and number
  • Gut pDCs produce HERV proteins (auto antibodies)
  • Inflammatory cytokines
  • Cardiovascular
  • Gastrointestinal
  • Musculoskeletal
  • Endocrine
  • Neurological
  • abnormal brain scans
  • EEG results abnormal
  • Dysautonomia
  • Disordered sleep
  • Seizures
  • Systemic
  • Infections
  • low glutathione, low blood volume and abnormal
    VO2 max.
  • Energy deficits

29
Major Symptoms
  • Cognitive Impairment
  • Dysautonomia
  • Pain nerves, joints, muscles
  • Lymphadenopathy, sore throat, severe headaches,
    low grade fevers
  • Disordered and unrefreshing sleep
  • Gastrointestinal distress/gastro paresis/nausea,
    vomiting, hypoglycemia
  • Tachycardia, chest pain, dehydration, fainting,
  • Profound loss of energy post exercise fatigue

30
How important are mitochondria to those with
ME/CFS?
  • Mitochondrial disease Symptoms may include loss
    of motor control, muscle weakness and pain,
    gastrointestinal disorders and swallowing
    difficulties, poor growth, cardiac disease, liver
    disease, diabetes, respiratory complications,
    seizures, visual or hearing problems, lactic
    acidosis, developmental delays and susceptibility
    to infection.
  • Adult onset is becoming more prevalent

31
1Change the Name Drop Fatigue and ME
  • Name for first person to describe ME after UK
    outbreak Dr. Ramsey
  • Knowledge of disease changes over time without
    having to change the name
  • Subgroups can be identified such as Ramsey 1,
    Ramsey 2, etc.
  • New name will end old stigmas and misinformation

32
2 Improve the Biological Definition
  • .. is a complex (neuro-inflammatory) disease.
    It is triggered by infection and toxic
    environmental exposures which result in..
  • Symptoms include mild cognitive impairment.
  • This disease may follow a relapsing and remitting
    course or become progressively worse over time.
  • It is associated with an abnormal immune response
    to various pathogens most notably borrelia,
    herpes viruses, entero-viruses and mycoplasma in
    addition to fungi and their mycotoxins.
  • It is chronic and can be severely debilitating

33
3 Identify a Medical Specialty as Needed
  • Disease affects the nervous system and is immune
    and pathogen driven
  • Disease is debilitating
  • Disease is difficult to manage because of
    changing nature and complexity
  • Evaluation should be comprehensive
  • Diagnosis and treatment may be complicated
  • Treatment may require intravenous drugs or drug
    mixtures/knowledge of long term treatment
    protocols

34
4 Educate the Medical Profession and the Public
  • Information should be kept up to date
  • Based on biological science
  • Consistent from one entity to another
  • Continue to change and add new information as it
    becomes available
  • Seek input from physicians, researchers and
    patients

35
Future Action Items for ME Experts
  • Create science based medical education text and
    online seminars
  • Identify lead NIH research institutes
  • Improve funding and focus of research
  • Help to develop medical standards, for emergency
    room visits, anesthesia and surgery

36
Can We Learn from Responders?
  • Ampligen
  • Antivirals
  • Anti-retrovirals
  • Immune Support
  • Anti-fungals
  • Anti-bacterials

Clinical Studies Backed by Research Can Tell
Us What we Need to Know!
37
Create a Research Road Map
  • Chronic infections
  • Genetic Susceptibility
  • Environmental Toxins
  • Innate immunity
  • Mitochondria
  • Autoimmunity

38
Create National Research Resources
  • Bio bank
  • Patient Registry
  • Animal model
  • Cell lines

39
What One Patient Wished the Doctors Knew
  • I have very bad days when I am too sick to see
    you
  • I have many other medical problems that you might
    be able to treat
  • My disease has many other symptoms that are much
    worse than fatigue.
  • Dont blame all of my symptoms on my illness you
    may miss something important
  • I try everyday to help myself through diet,
    limited exercise, supplements and prayer
  • I want to get well more than anything!

40
Follow progress of other disease groups to
improve the lives of those with this disease!
  • MS
  • Lupus
  • Cancer
  • Mitochondrial disease

Thank you!
41
1990 Symptoms at age 12
  • Fever, painful joints and muscles, nerve pain,
    muscle weakness, severe head ache, sore throat
  • HHV-1 antibody titers abnormally high
  • Pale, dark circles under eyes, tender lymph
    nodes, new allergies
  • Unable to stand, feeling faint, dizzy, low
    temperature, low blood pressure
  • Disordered Sleep
  • Nausea, vomiting, diarrhea, constipation
  • Post exercise fatigue/could not play
  • Trouble with memory and concentration

42
1990-2000 Illness Worsens
  • Level 0 Severe symptoms on a continuous basis.
    Bed ridden constantly, unable to care for herself
  • Gall bladder and appendix diseased and removed
  • Tachycardia and gastro-paresis
  • At 21 years Doctors suggest two pace makers

43
Complementary Medicine Added
  • Acupuncture
  • Chinese herbs for multiple viral pathogens
  • Homeopathy
  • Supplements
  • Protein drinks
  • Dietary changes to avoid food allergies

44
2006 A Major Relapse
  • While in remission of symptoms was given MMR
    vaccine for college, experienced severe relapse
    of all symptoms within 5 days.
  • 0-10 Severe symptoms on a continuous basis
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