ME/CFS and FM present as complicated illnesses and getting the right diagnosis can be challenging or seem like an impossibility. Learn how to distinguish between these two diseases and recognize other conditions that may play a role in illness presentation.
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We are a 501 c(3) dedicated to improving the lives of those that suffer from these devastating diseases.
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7. FIBROMYALGIA IS NOT PRIMARILY A MUSCULOSKELETAL DISORDER
FM is a nervous
system disorder that
creates
musculoskeletal pain,
along with global
pain amplification,
physical and mental
fatigue.
FM might be
considered a
neuroimmune or
neuroinflammatory
condition in the
future.
FM
The exact cause(s) of
FM---still unclear.
7
8. Chronic widespread
amplified pain and other
sensory signals between
the body, the spinal cord
and the brain
(the central nervous system)
FIBROMYALGIA IS CHARACTERIZED BY:
Hyperalgesia---amplified pain.
Allodynia---the sensation of pain
from a milder stimulus, such as
touch or pressure.
8
9. Fibromyalgia Diagnostic Criteria (ACR* 1990)
Chronic (>3 months)
Widespread Pain (pain involving 4 quadrants of body & the spine)
Tenderness (>11/18 tender points)
PAIN amplification results in:
»stiffness, achiness, sharp shooting pains…
»muscles, joints, bowel, bladder, pelvis, chest, head…
»tingling and numbness…light and sound sensitivity…etc
FATIGUE, BRAIN FOG and SLEEP disturbances
are described in Wolfe et al but not required.
9
Wolfe F, et al. The *American College of Rheumatology 1990 criteria for the classification of fibromyalgia: report of the
Multicenter Criteria Committee. Arthritis Rheum 1990;33:160–72.
Not just low back pain
10. FM is
a generalized pain condition
that involves
four quadrants of the body
and the spine
10
11. The 1990 ACR
FM Criteria also
require presence of
at least 11 of the 18
TENDER POINTS
(9 pairs)
12. USE CHARTS TO EXPLAIN YOUR IDEAS
2% of
all
adults
12
3-4% of
adult
women
0.5-1% of
adult men
The prevalence and characteristics of fibromyalgia in the general
population. Arthritis Rheum. 1995 Jan;38(1):19-28. Wolfe F, et al.
13. Awareness of FM skyrocketed after use of gabapentin for pain
and subsequent FDA approval of 3 FM drugs
Neurontin/gabapentin-- 2004 (never FDA approved for FM) The pharmaceutical
company, Pfizer, was fined $430 million by the FDA for off-label marketing of the anti-seizure drug.
The unprecedented fine came after promotion for “unapproved uses” including migraines and chronic
pain (doctors discovered that gabapentin worked for “nervous system” pain!)
Lyrica/pregabalin-- 2007 (Pfizer)
Cymbalta/duloxetine– 2008 (Eli-Lilly)
Savella/milnacipran– 2009 (Forest/Cypress)
14. $ millions were spent
by 3 pharmaceutical companies
To educate the PUBLIC and PRIMARY CARE PROVIDERS
about FM from 2007-2012. FM became a household word.
14
15. Dr. Oz: July 23, 2013
The Disease Doctors Miss Most:
Fibromyalgia
15
16. $ millions were spent
by 3 pharmaceutical companies
16
1) Widespread Pain Index (WPI)
See diagram (0-19 points)
7+ or 3-6
2) Symptom Score (SS):
0=none, 1=mild, 2=mod, 3=severe
a. Chronic fatigue (0-3)
Unrefreshing sleep (0-3)
Cognitive complaints (0-3)
b. Multisystem complaints (0-3)
Max SS = 12 5+ and 9+
> 3 months in duration and without other explanation FM FM
Alternate “new” FM Diagnostic Criteria (ACR* 2010)
Wolf F, et al. The American College of Rheumatology* Preliminary Diagnostic Criteria for Fibromyalgia
and Measurement of Symptom Severity. Arthritis Care & Research. Vol. 62, No. 5, May 2010, pp 600–610
17. Alternate “new” FM Diagnostic Criteria
Part 1: WPI (widespread pain index) 19 pain areas pain17
18. $ millions were spent
by 3 pharmaceutical companies
18
1) Widespread Pain Index (WPI)
See diagram (0-19 points)
7+ or 3-6
2) Symptom Score (SS):
0=none, 1=mild, 2=mod, 3=severe
a. Chronic fatigue (0-3)
Unrefreshing sleep (0-3)
Cognitive complaints (0-3)
b. Multisystem complaints (0-3)
Max SS = 12 5+ and 9+
> 3 months in duration and without other explanation FM FM
Alternate “new” FM Diagnostic Criteria (ACR* 2010)
Wolf F, et al. The American College of Rheumatology* Preliminary Diagnostic Criteria for Fibromyalgia
and Measurement of Symptom Severity. Arthritis Care & Research. Vol. 62, No. 5, May 2010, pp 600–610
19. FM is an illness of
central sensitivity and sympathetic overdrive
Common Manifestations include:
»Migraine and tension headaches
»TMJ/TMD
»Paresthesia (numbness and tingling)
»Restless legs syndrome
»Irritable bowel syndrome, IBS-D, IBS-C
»Irritable bladder or interstitial cystitis
»Painful menstruation, pelvic pain, vulvodynia
»Heart palpitations, sinus tachycardia, orthostatic intolerance
»Sicca syndrome (dry eyes and mouth)
»Light, noise and chemical sensitivities
19
20. Who develops chronic widespread pain and why? 20
• Women > Men. Children.
• Susceptible individuals (genetic?)
• Sleep deprived or chronically sleep disturbed
• Emotionally stressed
• Physically depleted or overextended
• Physical insults:
hormonal changes
viral infections
inflammation and autoimmunity
physical trauma
exposures…
21. FM is more prevalent in people experiencing:
Mental health problems:
»Anxiety
»PTSD
»Bipolar disorder
»Depression
Medical conditions:
»Localized pain conditions
»Hormone deficiencies
»Nutritional deficiencies
»Sleep disorders
»Inflammatory and
autoimmune disorders
21
22. Examples of FM prevalence among various groups:
»General population à
»Women ---------------à
»Men--------------------à
»IM & Rheum clinics à
»IBS---------------------à
»Hemodialysis---------à
»Type 2 diabetes------à
»Behcet’s syndrome à
2%
4%
0.01%
15%
13%
6%
15%-23%
80%
22
Prevalence of fibromyalgia in general population and patients, a systematic review and meta-analysis.
Heidari F1, Afshari M2, Moosazadeh M3. Rheumatol Int. 2017 Apr 26. doi: 10.1007/s00296-017-3725-2.
23. Research findings led to drug development to improve FM pain
»Functional MRI---activation of multiple areas of the brain
related to pain, and more areas than normal controls.
»Spinal fluid---elevated levels of Substance P and glutamate
(pain neurotransmitters)
»Sleep characterized by “alpha wave intrusion” (part of the
brain stays active or “awake”)
»Many FM patients have evidence of small fiber nerve damage
Pain. 2013 Nov;154(11):2310-6. doi: 10.1016/j.pain.2013.06.001. Epub 2013 Jun 5.
Objective evidence that small-fiber polyneuropathy underlies some illnesses currently labeled as fibromyalgia.
Oaklander AL, Herzog ZD, Downs HM, Klein MM.
25. Common causes of SFN
damage: diabetes or glucose
intolerance, hypothyroidism,
autoimmune diseases like
Sjögren’s Syndrome or Lupus,
nutritional deficiencies, Celiac
disease, Lyme disease, HIV,
alcoholism and many others…
Small fiber nerves (C-fibers) are in the skin and peripheral nerves but
also regulate organs and the autonomic nervous system.
Pediatrics. 2013 Apr;131(4):e1091-100. doi: 10.1542/peds.2012-2597. Epub 2013 Mar 11.
Evidence of small-fiber polyneuropathy in unexplained, juvenile-onset, widespread pain
syndromes. Oaklander AL1, Klein MM.
26. Small nerve fiber injury may result in
pain and autonomic nervous system dysregulation
»Amplification of pain and other sensations (light, sound, temp)
»dry eyes, dry mouth
»postural lightheadedness (OI: orthostatic intolerance), fainting
»abnormal sweating
»erectile dysfunction
»nausea, vomiting, diarrhea, constipation, low appetite
»difficulty with urinary function, frequency, pain
27. Small fiber nerve damage may cause only subtle
physical exam or diagnostic findings.
»Coordination, motor, and reflex examinations are normal.
»Light touch, vibratory sensation, and proprioception may be normal. Decreased
pinprick, decreased thermal (heat/cold) sensation, vibratory sensation, or
hyperalgesia are common.
»EMG and nerve conduction
may be normal
27
https://thinkingdr.files.wordpress.com/2010/04/ncv-test1.jpg
28. 28
Remember: local/regional pain syndromes are amplified by FM
»Osteoarthritis (OA)
»Cervical or lumbar disc disease
»TMJ/TMD
»Daily headache & migraine syndromes
»IBS, interstitial cystitis, endometriosis
»Carpel tunnel syndrome, bursitis, tendonitis,
plantar fasciitis, bone spurs…
»Peripheral neuropathy…
29. Making a diagnosis of
Myalgic Encephalomyelitis/
Chronic Fatigue Syndrome
ME/CFS
30. ME/CFS Historical Background
§ The term “Chronic Fatigue Syndrome” or “CFS” emerged in 1988* to replace
“Chronic Epstein Barr Virus”, or “Chronic EBV” and described a post-infection or post-
viral syndrome. [*CFS Holmes Criteria]
§ CFS is known by many other names (ME/CFS):
CFIDS- Chronic Fatigue Immune Dysfunction Syndrome
ME - Myalgic Encephalomyelitis
Post-Viral Fatigue or Post-Infectious Fatigue Syndrome
§ Not a new illness. World-wide and multicultural.
§ Myalgic Encephalomyelitis (ME) is the term used outside the U.S. to describe the more
severe form of CFS-like illness
*Holmes GP, et al. Chronic fatigue syndrome: a working case definition.
Ann Intern Med 1988;108:387-9.
31. » Clinically evaluated, unexplained, persistent or relapsing fatigue of at least 6 months
duration, that is of new or definite onset… and results in substantial reduction in previous
levels of activity, plus…
» The concurrent occurrence of at least 4 of the following 8 symptoms:
» post-exertional malaise-- post exertional pain
» impairment in short-term memory or concentration
» unrefreshing sleep
» muscle pain
» multi-joint pain
» headaches
» sore throat
» tender cervical or axillary lymph nodes.
1994 “Fukuda” CFS Criteria [or FM?]
*Fukuda et al, Annals of Internal Medicine, Vol. 121, December 15, 1994, pp. 953-959
32. CFS prevalence in the U.S.
CDC population-based epidemiology studies
1994 Fukuda criteria/ Wichita* or 2003 Revised Empiric Criteria/Georgia**
4 million CFS
2.5%**
Plus 7 million CFS-like
by **Georgia study
with revised criteria
2003.
*Archives of Internal Medicine 2003:163:1530-1536 **Population Health Metrics 2007;5:5.
1 million CFS
0.5%*
Plus 2 million CFS-like
by *Wichita study using
1994 Fukuda criteria
ME/CFS patients were not screened for FM criteria
33. 33
2003 “Canadian Consensus Criteria” for CFS/ME
1. Substantial reduction in activity level due to new onset, unexplained, persistent fatigue (at least 6 months in
duration)
2. Post exertional malaise (payback), delayed recovery (>24 hrs)
3. Sleep dysfunction (wide range). Unrefreshing or altered rhythm.
4. Pain – myalgia/arthralgia, headaches
5. Neurologic/Cognitive manifestations (concentration, short term memory, “sensory overload,”
disorientation/confusion, ataxia …)
6. Plus at least one symptom from two of the following:
»Autonomic manifestations e.g. orthostatic intolerance, POTS, IBS, vertigo, vasomotor instability, respiratory
irregularities… [ANS]
»Neuroendocrine manifestations e.g. temperature intolerance, weight or appetite changes, reactive
hypoglycemia, low stress tolerance…
»Immune manifestations e.g. tender lymph nodes, sore throat, flu-like symptoms, allergy symptoms,
hypersensitivities…
Carruthers BM et al. (2003). "Myalgic encephalomyalitis/chronic fatigue syndrome: Clinical working definition,
diagnostic and treatment protocols" (PDF). Journal of Chronic Fatigue Syndrome 11 (1): 7–36.
34. “Beyond ME/CFS: Redefining an Illness”
The Institute of Medicine* Report was published Feb 10, 2015 and
outlined new clinical diagnostic criteria for ME/CFS
www.nationalacademies.org/hmd/Reports/2015/ME-CFS.aspx
§ "Key Facts" (2 pages)
§ "MECFS Clinicians Guide" (20 pages)
§ The entire 300+ page report---(300+ pages)
The IOM* is now called the National Academy of Medicine.
35. 836,000 to 2.5 million people in the US meet criteria for ME/CFS
An estimated 84-91% not yet diagnosed (CDC 2003).
Patients struggle for years before getting a diagnosis
» 75% take >1 year to get diagnosed
» 30% took >5 years to get diagnosed
Doctors are often skeptical about the serious nature of the illness,
and have the misconception that it is a psychological illness
< 1/3 of medical schools include ME/CFS in the curriculum
<40% of medical textbooks include information on ME/CFS
IOM report pages 1-13
36. The purpose of IOM Report:
To improve clinical diagnosis and care for people
with ME/CFS.
•Common core symptoms of ME/CFS are based on research
•Focus is on illness manifestations that are objective.
•A simplified approach to increase ease of diagnosis
37. ME/CFS Clinical Diagnostic Criteria:
These CORE 4-5 criteria are required for diagnosis, must be moderate-severe, frequent in
occurrence (present >50% of time) and not otherwise explained by another condition.
1) Impaired function related to exhaustion/fatigue/fatigability (physical and cognitive)
2) PEM: post exertional malaise (illness relapse or worsening after activity)
3) Unrefreshing sleep
4) A. Cognitive impairment and/or
B. Orthostatic intolerance/autonomic dysfunction
Other common features of illness include:
---Pain: including significant overlap with FM as currently defined
---Immune or infection manifestations (allergy, inflammation, etc)
---Neuroendocrine dysregulation (brain regulation of hormones)
38. ME/CFS can be diagnosed definitively after 6 months
of supportive care and diagnostic investigations.
It is expected that a differential diagnosis, appropriate workup of symptoms and
treatment, including referral to specialists, will be directed by health care
providers.
All other identifiable illnesses should be diagnosed and treated
A working or provisional diagnosis of ME/CFS can be made earlier than 6 months.
Supportive care and management should be provided from the beginning.
39. Many infections are associated with a post-infection
fatigue syndrome… including Epstein Barr Virus (mono)
»Herpesviruses (EBV, CMV, HSV, VZV, HHV-6)
»Parvovirus B-19
»Enteroviruses (Coxsackie, Echo, Poliovirus)
»Flaviviruses (tick/mosquito---WNV, dengue)
»Giardia lamblia
»Mycoplasma and Chlamydia
»Lyme disease (Borrelia sp)
But no smoking gun…
40. New Research Breakthroughs ongoing…
»Metabolomics--- low cellular energy production
»Microbiome--- altered gut flora and immune impact
»Inflammation--- abnormal cytokine patterns, auto-
antibodies, immune cell dysfunction (NK cells)
»Genetics--- familial risk, mutations
40
41. FM ME/CFS
Symptoms respond to lifestyle
interventions and medications:
§ PEM mild-moderate and manageable
§ Pain & tenderness--- responds to many
treatments
§ Sleep—manageable with effort
§ Mental Health– linked to symptoms
§ Fatigue—tracks closely with pain
Low impact exercise helps all aspects if
pain is considered and managed.
*HUA: 10-12 hr/24 hours
Symptoms more difficult to treat and
medications are often poorly tolerated.
§ PEM severe and prolonged
§ Fatigue and cognition
§ Sleep– difficult to treat
§ OI
§ Pain– PEM and can be severe
The key to management is reduced activity
and “pacing”. Exercise can easily worsen
all aspects of illness and cause extended
relapse.
HUA: 2-8 hr/24 hour
*HUA= Hours of Upright Activity
