Fibromyalgia and Chronic Fatigue Immune Deficiency Syndrome

1
Fibromyalgia and Chronic Fatigue Immune
Deficiency Syndrome
2
Definition (CDC Criteria)

• 1. Clinically evaluated, unexplained, persistent,
  or relapsing chronic fatigue that is of new or
  definite onset (has not been lifelong) is not
  the result of ongoing exertion is not
  substantially alleviated by rest and results in
  substantial reduction in previous levels of
  occupational, educational, social, or personal
  activities.

3
Definition (cont)

• 2. Concurrent occurrence of four or more of the
  following symptoms, all of which must have
  persisted or recurred during six or more
  consecutive months of illness and must not have
  predated the fatigue
• A. Self-reported impairment in short term memory
  or concentration severe enough to cause
  substantial reduction in previously levels of
  occupational, educational, social, or personal
  activities.

4
Definition (cont)

• B. Sore throat
• C. Tender cervical (neck) or axillary
  (underarm lymph nodes)
• D. Muscle pain
• E. Multi-joint pain without joint swelling or
  redness
• F. Headaches of a new type, pattern, or
  severity
• G. Unrefreshing sleep
• H. Postexertional malaise lasting more that
  twenty-four hours

5
Problems with definition

• Its a research definition and excludes over 90
  of people with the syndrome

6
Fibromyalgia Definition

• A history of widespread pain. The patient must be
  experiencing pain or achiness, steady or
  intermittent, for at least 3 months. At times,
  the pain must have been present
• On both sides of the body
• Both above and below the waist
• Midbody-for example, in the neck, midchest,
  midback, or headache.
• Pain on at least eleven of the eighteen tender
  points

7

• Research is showing that CFIDS, FMS are
  overlapping
• (if not the same condition)

8
Why are these conditions so poorly treated?

• 1. No simple laboratory testing or simple
  treatment.
• 2. Health insurers can avoid paying for treatment
  and testing if they can make believe these
  syndromes are not real or physical.
• 3. 75 percent of those affected are female
• 4. These conditions cannot be treated with the
  average eight minute office visit
• 5. Standard laboratory tests are usually normal
• 6. Many doctors dont believe it is a real
  condition - If they cannot treat it, it must
  not be real

9
Better Criteria

• Unexplained fatigue that significantly interferes
  with functioning and is associated with any two
  of the following
• 1. Brain fog
• 2. Poor sleep
• 3. Diffuse achiness
• 4. Increased thirst
• 5. Bowel dysfunction
• 6. Recurrent and/or persistent infections or
  flu- like feelings

10
Dysfunctions

• Disordered sleep
• Hormonal deficiencies (not picked up on standard
  blood tests)
• Nutritional deficiencies
• Infections
• Mitochondrial dysfunction

11
The Cascade Effect

• Chronic fatigue usually has a mixture of
  underlying causes. This is because each problem
  can trigger other problems.
• For example Poor sleep and hormonal problems can
  trigger disordered immunity, which can trigger
  bowel and other yeast, parasitic, and viral
  infections, which can further worsen sleep and
  hormonal problems.

12

• The medical literature is very clear that these
  are legitimate diseases and individuals with
  these syndromes have measurable hypothalamic,
  pituitary, immune and coagulation dysfunction.
• These abnormalities then result in a cascade of
  further abnormalities, in which stress plays a
  role. The pituitary and hypothalamic dysfunction
  results in multiple hormonal deficiencies that
  are often not detected with standard blood tests,
  and autonomic dysfunction, including neurally
  mediated hypotension.
• The immune dysfunction, which includes natural
  killer cell dysfunction, results in opportunistic
  infections and yeast overgrowth, making the
  symptoms worse.

13

• Recent studies have shown that the coagulation
  dysfunction is usually initiated by a viral
  infection and has genetic predisposition. This
  abnormal coagulation results in increased blood
  viscosity (slugging) and a deposition of soluble
  fibrin monomers along the capillary wall. This
  results in tissue and cellular hypoxia, resulting
  in fatigue, and decreased cognition (brain fog).
• Neurotransmitter abnormalities and macro and
  micro nutrient deficiencies have also been shown
  to occur with these disorders.
• The most common initiating cause is a viral
  infection, which is very commonly Epstein Bar
  Virus, Cytomegalovirus or HHV6. Mycoplasma and
  Chlamydia Pneumonia are also common. Many people
  with these syndromes can pinpoint the start of
  their disease to a viral infection that never got
  better. Also, stress seems to be a contributing
  factor.

14

• Effective treatment, with 80 to 90 percent of
  individuals achieving significant clinical
  benefits, can be achieved by simultaneously
  treating the above problems. Treatments needed
  varies from patient to patient.
• For instance, close to 100 of individuals with
  these syndromes have low thyroid. This is usually
  not detected on the standard blood tests because
  the TSH is not elevated in these individuals
  because of the pituitary dysfunction. Many of
  these individuals will also have high levels of
  the anti-thyroid reverse T3, which is usually not
  measured on standard blood tests.

15

• In addition, the majority of individuals can also
  have a thyroid receptor resistance that is not
  detected on the blood tests. Consequently,
  thyroid treatment, especially with timed release
  T3 is effective for many patients. T4
  preparations (inactive thyroid) such as Synthroid
  and Levoxyl do not work well for these
  conditions.
• Adrenal insufficiency and growth hormone
  deficiency are also very common with these
  disorders, and supplementation with these
  hormones can often have profound effects. As with
  thyroid testing, these deficiencies are,
  unfortunately, usually not detected with the
  standard blood tests and require more specific
  testing.

16
Chronic Fatigue Syndrome and Fibromyalgia are
very treatable diseases!

• When the multiple dysfunctions present are
  treated, significant improvement, almost without
  exception, is seen.

17
Studies

• (Randomized double-blind, placebo control trial)
• When the multiple dysfunctions are treated,
  including nutritional deficiencies, disorder
  sleep, hormonal deficiencies, infections and
  mitochondrial dysfunction, 57 of patients with
  CFS/FM will have complete resolution of symptoms
  and 39 will have incomplete but significant
  resolution of symptoms.
• Summary 96 will have significant improvement or
  total resolution of symptoms
• Musculoskeletal Pain, 1995
• Journal Of Chronic Fatigue
  Syndrome, 2001

18

• The New Standard for the Treatment of Chronic
  Fatigue Syndrome and Fibromyalgia
• A Multifaceted Approach at the
• Fibromyalgia Fatigue Center
• Leading To
• Successful Patient Outcomes

19
6 Component Approach

• Component One Stabilize the Patient
• Component Two Mitochondrial Enhancement
• Component Three Balance the Hormones
• Component Four Treat the Infectious
  Components
• Component Five Addressing Unique Etiologies
• Component Six Maintenance

20
Journal of Chronic Fatigue Syndrome, 2001
21
Well being index (per visit)
22

• Author of the study states that these are complex
  patients and that doctors visits should be 4 to 6
  hours to adequately address all the problems
• Obviously never happens in our modern medical
  system
• Thirty minute to one hour visits adequate if
  doctor is familiar with underlying problems and
  treatments
• Impossible to do with 8 to 15 minute standard
  visits

23
CFS/FM

• Not uncommon for patients to spend over 100,000
  trying to obtain adequate treatment before
  reaching our Centers

24

• CFS/FM have been poorly treated conditions with
  standard medical care
• They are very treatable

25

• Fibromyalgia and Fatigue Centers
• Dedicated to achieving sustaining, positive
  outcomes for patients with these devastating
  conditions