Resources for Healthcare Providers

It is a challenge to compassionately and effectively care for a patient with a complex, multi-system illness like ME/CFS.

However, a great place to get started is with our Solve M.E. Webinar Series. Learn more from discussions with clinicians, researchers and experts about ME/CFS.

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The Centers for Disease Control (CDC) have created ME/CFS educational resources to help healthcare providers with patient care, including assessment, managing ME/CFS symptoms and providing other supportive strategies to improve patients’ quality of life.

View the toolkit here, or download items from the toolkit in PDF form below:

Visit the CDC ME/CFS webpage for additional information and materials, including their Patient Toolkit for materials designed to help patients, their families, and caregivers manage their healthcare provider visits.

The following key items aim to empower you with more information:

 

CPD Module 1-hr – Case Studies on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A free online CPD module by Doctors with M.E. Director Dr. Nina Muirhead is now available. The module is composed of 10 clinical cases that will challenge and improve your clinical knowledge and patient management for ME/CFS. This CPD module is endorsed by all major charities globally, with additional funded for distribution by the Scottish Government. A 1-hour CPD certificate is awarded upon successful completion of this module and can be included in your career portfolio.

Doctors with M.E. is the global professional association for medical practitioners and scientists in the field, bringing together leading experts, regional associations, and the quarter of a million healthcare professionals with ME that already existed pre-pandemic. They are a unique authority on myalgic encephalomyelitis and those Long Covid patients acknowledged by NIH, NIAID, and BMA narratives who risk progression to this neuroimmune disease. With professional backgrounds developed in hospitals, surgeries, universities, financial services, and think tanks, their range of expertise is both specific and multidisciplinary. The first global professional association in the field, they are also the first to be established and led by medics and experts who suffer from ME themselves. For more information, visit their website.

Dialogues for ME/CFS is a Wellcome Public Engagement Fund project led by Natalie Boulton and Josh Biggs, with Dr. Luis Nacul, Dr. , and  from the Cure ME team at the London School of Hygiene and Tropical Medicine acting as clinical and research consultants.

This initiative consists of a collection of videos that deliver a comprehensive understanding of ME/CFS from the perspectives of medical professionals, exercise scientists, research professionals, patients, and carers. The videos provide a vital resource and are already being hosted or linked by UK ME charities, as well as being included in medical  resources in both the UK and US.

Topics include:
Introduction to ME/CFS
Post-Exertional Malaise
Activity and Energy Management – Pacing
Severe and Very Severe ME/CFS
Graded Exercise Therapy
Patients Accounts – Symptoms

 

The US ME/CFS Clinician Coalition, a group of US ME/CFS experts, has released consensus recommendations for medical providers that include more specifics on the tests and treatments used in caring for people with ME/CFS. These recommendations include those tests used to identify alternative diagnoses and comorbidities along with tests to further characterize ME/CFS and to help document disability and guide treatment. These recommendations include a limited set of tests for all patients and additional tests to be ordered based on the patient’s particular presentation. These recommendations are intended as general guidance for a diagnostic process that may extend over several office visits and involve referrals to specialists. The clinician will need to apply their own clinical judgment in deciding which tests to order and whether to refer to a specialist. Read the Clinician Coalition announcement about the recommendations here, and download the PDF of the recommendations here.

The Coalition also authored a 2019 handout on the basics of diagnosis and management of ME/CFS. This handout is being made available online for the medical community to help them better understand how to recognize ME/CFS and how to appropriately care for patients. Patients may also find it useful to provide this handout to their own providers.

ME/CFS experts in the US formed the ME/CFS Clinician Coalition in March 2018 with the goals of advancing the clinical care of people with ME/CFS and providing clinical insights to researchers in the field. More information on the 2019 summit is available here. The handout on diagnosis and management provides a link for medical providers who are interested in getting more information on the coalition.

Co-Cure Template Letter for Health Professionals to Encourage Use of ME/CFS Educational Course (April 2021)

US ME/CFS Clinician Coalition Testing Recommendations for Suspected ME/CFS (February 2021)

US ME/CFS Clinician Coalition Letter: Post-COVID “Long Haulers” and ME/CFS (October 2020)

The US ME/CFS Coalition Guide to Diagnosing and Treating ME/CFS (September 2019)

Unprecedented Continuing Medical Education on ME/CFS Brings Relief to Doctors and Patients Alike: Michigan State Medical Society (MSMS) released groundbreaking, free, on-demand webinars on ME/CFS for healthcare providers to earn CME credits while learning about the highly disabling disease myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome (CFS).

Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness. February 2015. One of the most comprehensive reports regarding ME/CFS, this report was published by the National Academy of Medicine and includes a diagnostic criteria, clinicians guide, and comprehensive literature review.

  • Link to Report Summary (PDF)
  • Link to Report Key Facts (PDF)
  • Link to ME/CFS Clinicians’’ Guide (PDF)
  • Link to proposed Diagnostic Criteria (HTML)

ME/CFS: A Primer for Clinical Practitioners. (link to pdf here) July 2014. The “go-to” guide for clinical care, this primer for adult cases was published by the International Association for CFS and ME (IACFSME) and authored by a committee of experts. This is a great resource to provide to your doctor.

  • Link to download the Primer (PDF)
  • Link to Primer homepage (HTML)

ME/CFS FM Treatment Advice. Dr. Lucinda Bateman. Dr. Bateman, one of the foremost experts on ME/CFS and a member of Solve M.E.’s Research Advisory Council, provides advice on managing ME/CFS.

  • Dr. Lucinda Bateman spoke at the 2019 fall conference of the American Academy of Environmental Medicine (AAEM), delivering a didactic on “Upright Activity and Exercise Intolerance: Critical Concepts in the Evaluation of Chronic Fatigue.” Watch it here.
  • Link to Treatment Advice Article (PDF)
  • “Pearls of Wisdom,” Chronicle article from Dr. Lucinda Bateman (PDF)

Health Care Responsibility and Compassion: Visiting the Housebound Patient Severely Affected by ME/CFS is a resource created by Caroline Kingdon, Department of Clinical Research, London School of Hygiene & Tropical Medicine, Faculty of Infectious and Tropical Diseases in London.

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: When Suffering Is Multiplied (PDF) by Dr. Anthony L. Komaroff (Healthcare 2021)

Healthcare For Nurses:

Chronic Fatigue Syndrome: What Nurses Need to Know (from Nursing 2020)