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Overview: Myalgic Encephalomyeli5s/Chronic
Fa5gue Syndrome & Fibromyalgia
Liz Zubek BScMed MD CCFP FCFP
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Disclosures:
Conflicts of Interest: None
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!!!
CANADIAN STATISTICS:! !
2010 Canadian Community Health Survey !!
ILLNESS # OF CANADIANS AFFLICTED Diabetes 1,841,000 Heart Disease 1,431,500 Mul?ple Chemical Sensi?vi?es 800,500 Cancer 535,500 Fibromyalgia 439,000 Myalgic Encephalomyeli5s/CFS 411,000 Alzheimer’s or other demen?a 111,500 Parlour, M., ME/FM Ac5on, Quest 88, Summer 2011.
70% Women – middle aged; men and children 4 years old
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Canadian Community Health Survey BC 2010
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ME/CFS 58,000
MCS 116,000
FM 48,000
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Reported unmet health care needs %, Canada, 2010 Canadian Community Health Survey
FM
CFS
MCS
Stroke
Cancer
Heart disease
Diabetes
All respondents
0 5 10 15 20 25 30 35
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Food insecurity %, Canada, 2010 CCHS
CFS
MCS
FM
Stroke
Diabetes
All respondents
Heart disease
Cancer
0 5 10 15 20 256
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Diagnosing Fibromyalgia Clinical Signs & Symptoms
• Widespread Pain + 11/18 positive tender points
required. • Commonly associated are
– Fatigue – Sleep Dysfunction – Neurological Manifestations – Autonomic/Neuroendocrine Manifestations – Stiffness
FM Definition for Practitioners defined by a Health Canada International Expert Consensus Panel:
Jain A. et al. The Fibromyalgia Syndrome: A Clinical Case Definition for Practitioners. Journal of Musculoskeletal Pain, Volume 11, Number 4, 2003
Fitzcharles MA. 2012 Canadian Guidelines for the diagnosis and management of fibromyalgia syndrome. http://www.canadianpainsociety.ca/pdf/Fibromyalgia_Guidelines_2012. 7
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Fibromyalgia Criteria
A pa?ent sa?sfies modified ACR 2010 fibromyalgia diagnos?c criteria if the following 3 condi?ons are met:
1. Widespread Pain Index ≥ 7 and Symptom
Severity Score ≥ 5. WPI Score _____ & SS Score ____
≥ 7 ≥ 5 or Widespread Pain Index between 3-‐6 and
Symptom Severity Score ≥ 9. WPI Score _____ & SS Score _____ 3-‐6 ≥ 9
Total Scores _____ 2. Symptoms have been at a similar level
for at least 3 months. 3. The pa?ent does not have a disorder
that would otherwise sufficiently explain the pain.
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fMRI Mapping of Pain
thalamus
insula heat pain
ACC
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Diagnosing Myalgic Encephalomyeli5s/ Chronic Fa5gue Syndrome
Criteria: • Debilita?ng fa?gue • Post-‐exer?onal malaise • Pain • Cogni?ve Impairments • Sleep dysfunc?on • Immune/neurological and autonomic dysfunc?ons Canadian Consensus Criteria (2003) Carruthers B. et al. Myalgic
Encephalomyeli5s/Chronic Fa5gue Syndrome: Clinical Working Case Defini5on, Diagnos5c and Treatment Protocols A Consensus Document. Journal of Chronic Fa5gue Syndrome Volume 11, Number 1, 2003
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Addison’s Disease Rheumatological Diseases Anemias, Iron Deficiency, other treatable forms
Cushing’s Syndrome Infec5ous Diseases: HIV, Lyme Disease, Hepa55s, TB
Severe obesity (BMI greater than 40)
Diabetes Substance Abuse Iron Overload
Hypothyroidism Neurologic Disorders: MS, Parkinson's Disease, Myasthenia Gravis
Cancer
Hyperthyroidism Primary Psychiatric Disorders Treatable Sleep Disorders: Apnea, Narcolepsy
TREATABLE ACTIVE DISEASE MUST FIRST BE RULED OUT:
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Questions: 2014 Conferences CFS Stanford & IACFS/ME
1. Is there objective evidence of objective biological abnormalities?
2. Could the abnormalities theoretically explain the symptoms
Do the abnormalities in fact correlate with the symptoms
Dr. Anthony Komaroff’s Summary
http://bit.ly/1gVWVvq
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2 Day VO2 Max Trials
• On day one, CFS/ME pa?ents perform similar to decondi?oned controls.
• On day two CFS/ME pa?ents have a 40% lower workload at their ven?latory threshold
Phys Ther. 2013 Jun 27. Discrimina?ve Validity of Metabolic and Workload Measurements to Iden?fy Individuals With Chronic Fa?gue Syndrome. Snell CR, Stevens SR, Davenport TE, Van Ness JM.
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Measurements of workload at peak exercise (A) and at the ventilatory threshold (B) in participants with chronic fatigue syndrome (CFS) and control participants during
cardiopulmonary exercise test 1 (blue bars) and cardiopulmonary exercise test 2 (gold bars).
Snell C R et al. PHYS THER 2013;93:1484-1492
© 2013 American Physical Therapy Association
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Leptin and Fatigue Severity Study Daily Fluctua?ons of Cytokines in ME/CFS Pa?ents, Jarred Younger
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Interferon-Gamma Released by lymphocytes in response to viral and
intracellular bacterial infections Chronic Fatigue Initiative Study - 200 ME patients > 3years vs < 3years illness - Interferon-gamma much higher < 3years - Odds ration 117, p < 0.001 Correlation between interferon-gamma with cognitive
impairment (severe vs mild impairment) - Odds ratio 67, p < 0.001 M. Hornig… WI Lipkin et al. IACFS/ME Conference March 2014
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Central Nervous System Physical Examination 1. and Neurocognitive Testing - Cognitive Dysfunction:
brain fog, poor concentration, slow processing, difficulty word retrieval & multitasking
2. Spatial Difficulties: poor balance + Romberg + Tandem tests Overnight Sleep Study ↓ Stage IV Deep Sleep, α wave intrusions Kumano-go T et al. J J Cl Med 2007, 65(6):1017-1022 EEG Peak Alpha Frequency is Associated with Chronic Fatigue
Syndrome: A Case-Control Observational Study, Marcie Zinn et. al
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Endocrine Function
↓ cortisol levels: ME/CFS & Patient’s story of pushing on good days
vs. ↑ cortisol levels: Major Depression, Anxiety & Post Traumatic Stress Disorder
Cleare AJ. Trends Endocrinol Metab 2004; 15(2): 55-9. for a review of
the topic. 18
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Autonomic Function • Numerous studies have shown autonomic dysfunction in
ME/CFS (especially in younger patients including: – postural orthostatic hypotension – Abnormal response on Head up Tilt Table Test – increased heart rate at rest and with standing – decreased heart rate variability (HRV)
Boneva RS et al. Auton Neurosci 2007; 137(1-2): 94-101 Stewart JM et al. Pediatrics 1999; 103(1): 116-21. Hoad AM. QJ 2008; 101(12): 961-5.
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Cardiac Function • Cardiac output is decreased, reduced blood volume
- correlates with physical symptoms. Peckerman A et al. Am J Med Sci 2003; 326(2): 55-60.
• 24 hour Holter EKGs are often abnormal with T wave flattening or inversion, tachycardia and premature contractions. Lerner AM et al. Virus Adaptation and Treatment 2010; 2: 47-57.
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Muscle Metabolism • reduced intracellular concentrations of ATP. Wong R et al. Chest
1992; 102(6): 1716-22. • abnormalities in recovery of intramuscular pH following
standardized exercise. Jones D et al. Journal of Internal Medicine 2010; 267: 394-401.
• Cardiac muscle metabolism is impaired Hollingsworth KG et al. Eur J Clin Invest 2010.
• metabolism may be due to mitochondrial dysfunction. Myhill S et al. Int J Clin Exp Med 2009; 2(1): 16.
• Postexertional malaise in Women with Chronic Fatigue Syndrome, Van Ness, JM, Journal of Women’s Health, Volume 19, Number 2, 2010; 1-6.
• Mitochondrial Dysfunction Myhill, S et al. Int J Clin Exp Med 2012;5(3):208-220
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Immune Dysfunction • decreased Natural Killer Cell function Klimas, N
• TH2 shifted immunity ↓ T suppressor lymphocyte subsets: CD8/38, CD8/11b • elevated cytokines
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Genetic susceptibility:
• Genetics loads the gun • Environment pulls the trigger Genius, SJ. Medical practice and community Health care in the 21st century. A time of change, Public Health, 2008; 122: 671-680.
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Genetic Profiles in FM & CFS • Spanish research: 1,500 patients with ME/CFS, FM
genetically analyzed using SNP technology - FM & ME can be genetically distinguished from from normal
Garcia-Fructuoso F. et al., Barcelona Spain, IACFS Conference, Ft. Lauderdale, Jan. 2007
• 620 ME/CFS with 3 generations of data in Salt Lake City Utah Population Data Base analyzed.
- ME significant numbers in first and second degree relatives of ME patients
Albright, Frederick, Lisa, University of Utah, IACFS Conference, Ft. Lauderdale, 2007
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7 Genetic Subtypes in ME/CFS 1. Cognitive, musculoskeletal, sleep, anxiety/depression 2. Musculoskeletal, pain, anxiety/depression 3. Mild 4. Cognitive 5. Musculoskeletal, gastrointestinal 6. Postexertional 7. Pain, infectious, musculoskeletal, sleep, neurological,
gastrointestinal, neurocognitive, anxiety/depression Kerr, Jonathan, et al. Seven genomic subtypes of CFS/ME: a detailed
analysis of gene networks and clinical phenotypes. J. Clin. Pathol. Dec. 2007. (50/75) (severity and clinical subsets)
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Infections • ME/CFS can be triggered by numerous
infections including: Enteroviruses (especially Parvo B19), Epstein Barr Virus, Ross River Virus, Coxiella Hickie I. BMJ 2006; 333(7568): 575 (Australian prospective study). Kerr, J. J Gen Virol 2010; 91(Pt 4): 893-7.
• Associations have been found with: CMV, HHV6 Lerner AM Virus Adaptation and Treatment 2010; 2: 47-57.
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Infections
• Enterovirus protein found in 82% of stomach biopsy samples correlate with the high percentage of ME/CFS patients with GI complaints
Chia JK, Chia AY. J Clin Pathol September 2007.
• Chronic fatigue syndrome (60%) after Giardia enteritis: clinical characteristics, disability and long-term sickness absence Bergen Norway
Naess H, et. al, BMC Gastroenterol. 2012 Feb 8;12(1):13.
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Post – Infection Theory Virus/Pathogen
Cytokines, Tissue Necrosis 2-5A Synthetase
Increased abnormally small RNase L Damaged Cell Channels
Mitochondria, Muscles, Brain
De Meirleir K, Chronic Fatigue Syndrome A Biological Approach De Meirleir K, A 37 kDa 2-5A Binding protein as a potential
biochemical marker for CFS. Am J Med 2000; 108: 99-105 28
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Management Strategies 1. Improve symptoms,
functioning & quality of life 2. Secondary prevention of worsening
of chronic complex condition
HOW? Supportive Symptomatic Care
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Multiple Determinants of Health Source: World Health Organization, undated.
From Child Health and the Environment- A Primer, CPCHE, Aug. 2005:5
www.healthyenvironmentforkids.ca
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Treatment: Seeds of Health
Support (self, family, social, medical, occupational, spiritual)
Exercise/Pacing
Environment
Diet/Drugs
Sleep
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EXERCISE/PACING/MOBILITY
Monitor via Activity Log: • Stay as active as possible WITHOUT
CRASHING • Increase slowly (10% RULE) • Strength train and prevent osteoporosis • Teach patients to trust own perceptions & build
gradually
Strong Women Stay Young – Miriam Nelson
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Activity Log and Functional Capacity Scale
Scale from 0 to 10 Incorporates: • Energy rating • Symptom severity • Activity level
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SUPPORT • listen non-judgmentally, share uncertainty,
review activity-pain logs • Clarify strengths, encourage self-care
strategies (home care, disability parking sticker)
• Reframe symptoms as early warning devices • Celebrate improvements, acknowledge
disappointments • Complete insurance forms • Psychological support – chronic illness stages
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PACING MIND-BODY MEDICINE
“Body, in this moment, what do I need?” Relaxation Response/meditation to increase
parasympathetic tone and reduce adrenal overstimulation (stop the adrenaline addiction & change brain function – brain neuroplasticity)
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ENVIRONMENT
• Find patient stressors by using CH2OPD2 History/Home Assessment
• Avoid triggers: mold, cat/dog dander • Remove pollutants: dust mite protocol,
cleaning & personal care products, EMFs, toxic people both physical, emotional & contagious (virus infections)
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DIET & NUTRITION
• EAT (Patients forget to eat) meals on wheels • Nutritious whole foods, no additives, avoid food
sensitivities/allergies • Drink 8 - 10 glasses H2O/day • Supplement - guidance of professional • Normal bowel movements – treat dysbiosis
think microbiota imbalance
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SLEEP HYGEINE • Pace activities to avoid crashing
– tired and wired • Regular bedtime • No TV • Dark bedroom • Relaxation Response/Meditation • Calcium, Magnesium, Herbal teas,
Melatonin • Sleep Medication
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Weed, Seed, and Feed Approach 1. Weed out known aggravators/stressors 2. Plant “SEEDS” of health: • S upport (self, family, social, medical, occupational, spiritual) • E xercise/pacing
• E nvironment
• D iet/Drugs
• S leep 3. Feed the SEEDS (nurture whatever helps)
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Assessment Tools
• Visual Analogue Scale 1 - 10 • Patient Diaries (Activity Log & Functional
Capacity Scale) • Sleep and Pain Diaries – visual analogue
scales 1 – 10 • RAND/Short Form 36 Health Status
Inventory
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Short Form-36 Functional Status Domains
• PF- Physical Functioning • RL-P- Role Limitations - Physical Health Problems • BP- Bodily Pain • GH- General Health Perceptions • E/F- Energy and Fatigue • SF- Social functioning • RL-E- Role Limitations Due to Personal or
Emotional Health Problems • EWB- Emotional Well-being Example: Environmental Health Clinic Patients, WCH, SF-36 Functional Status Lavergne R. et. al, Canadian Family Physician, 2009
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PF RL-P BP GH E/F SF RL-E EWB
Canadian NormsCFSMCSFM
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Diagnosis vs. Disability
Energy Assessment - fatigue/energy level: consistent and reliable - post-exertional fatigue & malaise Cognitive/Thinking Difficulties ↓ short term memory & concentration - slowed mental processing - groping for words
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Online Resources ME/FM ACTION NETWORK: www.mefmaction.com ME & FM Canadian
consensus documents, CPP Disability Application & Appeals Guide 2015
Chronic Fatigue Syndrome/Myalgic
Encephalomyelitis: A Primer for Clinicians 2014 - IACFS/ME Website
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Online Resources
Ontario College of Family Physicians www.ocfp.ca >Environmental Health Committee – definitions: FM, ME, MCS, Functional Capacity Scale, Environmental/Exposure History
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Where Patients Can Find Help
• Pain BC support groups • MEFM Myalgic Encephalomyelitis and
Fibromyalgia Society of BC Toll-free: 1-888-353-6322 E-mail: [email protected]
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SEID?????
• “Systemic Exertion Intolerance Disease” • Proposed as a new name for ME by the
Institute of Medicine • Focuses primarily on the aspect of fatigue
yet minimizes the other items in the Canadian Concensus Criteria
• Does not require other diagnoses to be excluded
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Canadian Consensus Criteria Made Easy:
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Use the DePaul Symptom Questionnaire !
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ExhaustionBody Systems Stressors
Exercise- Sedentary- Deconditioned
Diet- Junk Food- Fast Food
Sleep-Overtime- Shift Work- Insomnia
Support-Demanding Boss
- Busy Spouse- Sick Child- Rebelling Teen- Aging Parents
Environment-Polluted Air/water/food
-Infections-Physical
Imbalance
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Adaptation Body Systems Seeds of Health
Homeostasis
Environment
Exercise/
Pacepace
Diet
Sleep
Support