Overview:                                                                    Myalgic  Encephalomyeli5s/Chronic    

Fa5gue  Syndrome  &  Fibromyalgia  

   

Liz  Zubek  BScMed  MD  CCFP  FCFP  

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      

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

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

 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

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

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

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

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)

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

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

reactive depression/anxiety 38

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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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10

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50

60

70

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90

100

PF RL-P BP GH E/F SF RL-E EWB

Canadian NormsCFSMCSFM

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: info@mefm.bc.ca

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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