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ME/CFS Primer for Clinical Practitioners – a milestone in diagnosis and treatment from the IACFS/ME

  [ 28 votes ]   [ Discuss This Article ] • May 17, 2012

More than two years in the making, to support the informed diagnosis & management of millions afflicted with ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome)

On May 15, 2012…
the International Association for CFS/ME (IACFS/ME) released for public sharing ME/CFS: A Primer for Clinical Practitioners © 2012 IACFS/ME.

See the printable PDF…
of the 40-page primer on the IACFS/ME website.

The IACFS/ME asks the community’s help…
in seeing that news of the Primer reaches as many physicians and other healthcare professionals as possible. For practitioners who access it, they suggest a donation of $15 or another amount to help continue the work of the IACFS/ME.

Notable features include…

• An ME/CFS Clinical Diagnostic Criteria Worksheet (pages 12 and 13). References include the revised Canadian ME/CFS Case Definition.

• Attention to special groups, including severely affected, pediatric ME/CFS, and pregnancy, and to post-exertional malaise/activity management. (See full topic listing, below.)

Members of the IACFS/ME Primer Writing Committee…
dedicated more than 2 years to development and vetting of this document. The 11 members are:

Fred Friedberg, PhD (chair and IACFS/ME president); Lucinda Bateman, MD; Alison Bested, MD; Todd Davenport, DPT; Kenneth J Friedman, PhD; Alan Gurwitt, MD; Leonard Jason, PhD; Charles W. Lapp, MD; Staci Stevens, MA; Rosemary Underhill, MB; Rosamund Vallings, MB.

In a brief forward for clinician users…
Harvard physician Anthony Komaroff, MD, suggests:

In this Primer, the collected wisdom of many experienced clinicians and clinician-scientists has been gathered. Here, you’ll find advice on how to diagnose ME/CFS, and on therapies that appear to be beneficial, although not curative. I think you will find it useful.”

Topics as listed in the Table of Contents…

1. Introduction and Overview (6-7)

• Nomenclature
• Epidemiology
• Diagnosis
• Presentation and Course of Illness
• The health practitioner's role in diagnosis and management

2. Etiology (8)

• Predisposing factors
• Precipitating and causal factors

3. Pathophysiology (8-11)

• Immune system abnormalities
• Neuroendocrine dysregulation
• Brain abnormalities
• Cognitive impairment
• Autonomic/cardiovascular disturbances
• Mitochondrial/energy production abnormalities
• Gene studies

4. Clinical Diagnosis (11-16)

• Patient history
• Physical examination
• Diagnostic Worksheet
• Laboratory tests
• Differential diagnosis
• Distinguishing ME/CFS from depression and anxiety disorders
• Exclusionary medical conditions
• Co-existing medical conditions

5. Management/Treatment (17-26)

• Approach to treatment
• Sleep
• Pain
• Fatigue and post-exertional malaise
• Managing post-exertional symptoms, Pacing and the Energy Envelope
• Activity and exercise
• Cognitive problems
• Depression, anxiety and distress
• Cognitive behavioral therapy
• Management of related conditions
• Orthostatic intolerance and Cardiovascular symptoms
• Gastrointestinal problems
• Urinary symptoms
• Allergies
• Multiple chemical sensitivities
• Infections and immunological factors
• Dietary management
• Alternative and complementary approaches
• Follow-up

6. Clinical concerns (26-29)

• Low functioning patients
• Pregnancy
• Gynecological problems
• Pediatric ME/CFS
• Immunizations
• Blood and tissue donation
• Recommendations prior to surgery

7. References (29)

Appendix 35-40

A 1994 International research case definition (Fukuda et al) worksheet
B Pediatric case definition worksheet
C Functional capacity scale
D Activity log
E Recommendations prior to surgery


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