introduction and overview although it has been over 25 years since the cdc investigated an outbreak...
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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 still lacking an appropriate name, a concise biological definition and an agreed upon medical category.
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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.
Doesn’t recover but returns to school
First physical diagnosis: Adrenal insufficiency.
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Our 26 year Long Battle isn’t Over Number of years to diagnosis: 2 Number of major medical institutions
visited: 4 Doctors and specialists consulted
over 26 years includes: pediatricians, gastroenterologists,(gastro-paresis) cardiologists,(tachycardia) endocrinologists, psychiatrists, psychologists, internists, infectious disease specialists,(infections) hematologist oncologist,(severe anemia) surgeons,(gall bladder disease) family medicine, complementary
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This is what patients want; You can them get here!
Living healthy, happy and full of energy
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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?”
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ME is:
Characterized by: inflammation, abnormal immune function, multiple infections, mitochondrial dysfunction, rapid disability and exercise intolerance
Complex and chronicRelapsing and remitting
and/or progressive
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ME is not:
Psychological depressionA 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-powerCaused by too little sleep/tirednessCaused by working too hardCaused by childhood abuse
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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
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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
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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
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Before “Chronic Fatigue Syndrome” it was called Myalgic Encephalomyelitis (ME)
Dr. Ramsey described ME in 1956A neurological disease
Abnormal immunological response of the patient to the organism. Circulatory disorderAbnormal cerebral activityAny excessive physical or mental stress is likely to precipitate a relapse.Tends to be chronic
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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
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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.
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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)
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ICD-10 Chapter VIDiseases of the nervous system(G00-G99)
G93.3Post viral fatigue syndrome
Benign myalgic encephalomyelitis
They are joined
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Challenges: Yesterday and Today
DoctorsPatientsFamilies of those with ME Researchers
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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
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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
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Challenges for FamiliesLack of centralized accurate informationLack of emotional support for entire
familyLack of medical supportLack of financial support for medical careLoss of income and/or functioning family
memberLack of educational support/guidelines
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Challenges for Researchers
Too little research funding Research definition lacks specificity Patients are all grouped together Groups of patients often dependent
upon physician’s practice No national repository of patient
samples No clinical centers of excellence
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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
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Doctors Who Misunderstand Internist: “If I don’t know what it
(abnormal viral titers) means it can’t be important.”
Neurologist: “I didn’t read her medical reports because the facts might get in the way of my theory.”
Neurologist: “I couldn’t read her MRI: it probably wasn’t important anyway.”
Surgeon: “I won’t do her gallbladder surgery because she has CFS.”
Cardiologist: “I can’t treat her tachycardia because she has CFS.”
ER doctor: “I could give her fluids if she had an immune deficiency.”
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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.
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A New Beginning
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Possible Solutions: A Fresh Startbecause ME has become CFS
Rename the disease: perhaps after the person who first described ME: Dr. Ramsey; Ramsey’s
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?
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Why is a Name so Important?
Disease name and definition determines research emphasis and funding
Research identifies biomarkers of diseaseIndustry develops and sells diagnostic
testsDiagnostic tests lead to pharmaceutical
treatments Mandatory insurance coverage of testing
and treatmentKnowledge equals better physician
education
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Keys to Defining DiseaseConcise 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
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Biological Abnormalities Associated with ME/CFS
Immunological low NK cell function and
number Gut pDCs produce HERV
proteins (auto antibodies)
Inflammatory cytokines
Neurological abnormal brain scans EEG results abnormal Dysautonomia Disordered sleep Seizures
Cardiovascular Gastrointestinal Musculoskeletal Endocrine
Systemic Infections low glutathione, low
blood volume and abnormal VO2 max.
Energy deficits
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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
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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
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#1:Change the Name: Drop Fatigue and ME
Name for first person to describe ME after UK outbreak: Dr. RamseyKnowledge 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
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#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
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#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
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#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
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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
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Can We Learn from Responders?
AmpligenAntiviralsAnti-retroviralsImmune SupportAnti-fungalsAnti-bacterials
Clinical Studies Backed by Research Can
Tell Us What we Need to Know!
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Create a Research Road Map
Innate immunity
Mitochondria
Autoimmunity
Chronic infections
Genetic Susceptibility
Environmental Toxins
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Create National Research Resources
Patient Registry
Cell lines
Bio bank
Animal model
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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.
Don’t 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!
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Follow progress of other disease groups to improve the lives of those with this disease!
MS:Lupus:Cancer:Mitochondrial disease:
Thank you!