For Healthcare Professionals
Resources on this page are directed at healthcare professionals. Thus, articles may be more technical/ detailed in nature and use medical terminology. If you are a patient or caregiver, consider sharing this webpage or the resources listed with your healthcare providers.
Most of the information on this page concerns adult ME/CFS although sections of resources may contain some pediatric information. Please also see the Pediatrics section below.
Quick Facts about ME/CFS:
- US National Academy of Medicine Key Facts (2015)
- US Centers for Disease Control and Prevention main ME/CFS page
Diagnosis and Clinical Criteria:
Created in 2015, this 20-page guide was created to educate clinicians about the newest ME/CFS criteria. The NAM criteria replaced the Fukuda 1994 chronic fatigue syndrome (CFS) criteria for diagnosis. The Fukuda criteria were updated based on scientific studies, expert clinician experience, and patient/ caregiver input. The criteria focuses on 5 key symptoms and so may be especially useful to screen patients for ME/CFS.
This short guide was created in 2020 by clinicians experienced with ME/CFS (US ME/CFS Clinician Coalition) to help healthcare workers identify ME/CFS patients accurately and in a timely manner using the 2015 NAM criteria. Differential diagnoses and common co-morbidities are included.
The Primer was created by a team of experinced clinicians and comprehensively covers diagnosis and management of ME/CFS. It used the 2003 Canadian Consensus Criteria as it was created before 2015. It contains special sections, such as pre-surgical considerations and obstetric/ gynecologic concerns.
These ME/CFS criteria were created based mostly on clinician experience. They are more comprehensive but are more complicated to apply than the NAM. Some clinicians use the CCC to confirm diagnoses of ME/CFS and to check if a patients' wide range of symptoms might be due to ME/CFS.
These criteria are similar to the CCC in that they are more detailed and wider in scope than the NAM.
These criteria were created by the US Centers for Disease Control and Prevention originally for research but over time, were also used for clinical diagnosis. In the US, they have been supplanted by the US NAM criteria (see #1 above). However, some clinicians and studies may still be continuing to use them due to the time needed for changes to take place in medicine.
7. History of and other case definitions:
Throughout the history of ME/CFS, various case definitions have been created. Some of these case definitions were used only for a limited time, mostly used in one country, and/or contained concerning shortcomings. Others were useful but not used in a widespread manner. Occasionally, studies designed in the past or using older data may still use Fukuda but researchers are starting to use the other criteria more.
Treatment and Management:
This short guide was created in 2020 by clinicians experienced with ME/CFS to help healthcare workers identify ME/CFS patients accurately and in a timely manner using the 2015 NAM criteria. Basic principles of treatment are covered. Visit the US ME/CFS Clinician Coalition website for more information as well.
The Primer was created by a team of experienced clinicians and comprehensively covers diagnosis and management of ME/CFS. It used the 2003 Canadian Consensus Criteria as it was created before 2015. It contains special sections, such as pre-surgical considerations and obstetric/ gynecologic concerns.
Website created by a physician, chronic disease self-management expert, occupational therapists, and experienced patients to teach patients in detail how to conserve energy and manage their activity. Pacing/ planning/ prioritizing activity can help control symptoms and improve function/ quality of life. Most materials are free of charge. They also provides low-cost, short-term online classes on pacing. Clinicians can also learn the basics to educate their patients and reinforce the steps they take.
Although this is an older article (so the science has advanced since it was first published), the principles of activity and exercise explained in it continue to be accurate and extremely relevant. In particular, with a condition where exertion provokes symptoms, activity and exercise need to be titrated carefully so that patients benefit and don't deteriorate from them.
This was a patient-oriented survey conducted by IACFS/ME Board Member Lily Chu, Dr. Leonard Jason of DePaul University, and his research team to inform FDA about symptoms, function, and effectiveness of various treatments. In particular, 71% of patients reported pacing activity as helpful while 64% reported worsening health with formal exercise programs (often not tailored for ME/CFS patients).
Documenting Disability and Advocating for Work Accommodations
For school accommodations, please see article on accommodations at the university level in the Pediatric section.
A comprehensive guide to pediatric ME/CFS written by an international team of pediatricians and scientists. Several practical appendices with information directed at parents/ caregivers, K-12 school accommodations, and about orthostatic intolerance.
Video lecture (1 hour) by Dr. Peter Rowe of Johns Hopkins University
Directed at occupational therapists but may be useful for anyone working with college students. Some suggestions may also be helpful for students affected by other chronic health conditions.
1. CDC CME
CDC partnered with MedScape for a series of free educational videos and materials targeting medical providers.
2. Workwell Foundation - created specifically for occupational/ physical therapists and aides
Workwell partnered with Medbridge to produce a 2-part video series.
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