Resources for People with M.E. and Caregivers

As someone living with and managing ME/CFS, we know you have questions. Below are links to information about some of the most commonly asked questions.

As part of Advocacy Week 2019 in Washington DC, Solve M.E. hosted our first ever EmPOWER M.E. Roundtable moderated by Board Certified Patient Advocate, Sharon Stevenson, DVM PhD. Providing specific tools to empower people with ME/CFS to feel more comfortable advocating and representing their own needs, it featured two workshop-style panels, “Empowerment in the Doctor’s Office: Overcoming White Coat Syndrome” and “Advocacy: Your Story, Your Impact.”

Panelists included:
Dr. Nancy Klimas: ME/CFS clinician and researcher, Director of the Institute for Neuro-Immune Medicine, Nova Southeastern University, Nova Southeastern University
Dr. Camille Birch: Ramsay Award Research Awardee and person with ME, Genome Analyst, HudsonAlpha Institute for Biotechnology
Eric Braun, PhD: Caregiver and ME Advocate
Secretary Rona Kramer: Secretary, Maryland Department of Aging, Former State Senator, family member of person with ME
Emily Taylor: Director of Advocacy, Solve ME/CFS Initiative, and caregiver of person with ME

You can watch “Empowerment in the Doctor’s Office: Overcoming White Coat Syndrome” here now.

In 2020, we hosted our 2nd Annual EmPOWER ME event, “How to Navigate Disability Insurance with ME/CFS.”   The event was moderated by Sharon Stevenson, and featured panelists, Dr. Lucinda BatemanDr. Christopher Snell, and Moselle C. Leland. To watch the recording, visit our YouTube channel.

The 3rd Annual EmPOWER M.E. Roundtable, “Elevating Your Voice in Research,”  took place on Thursday April 22, 2021.  In this hour-long virtual roundtable, patient advocates and citizen scientists shared their experiences in navigating the world of research and clinical studies and how to make your voice heard at every level of research. Participants learned how to overcome barriers to equitable access and get involved in quality research opportunities. This panel also included a preview of the latest ME/CFS and Long COVID data and insights from the patient-centered You + ME Registry and Biobank, the latest work from the Patient-Centered Research Collaborative and a report about the real cost of rare disease in America.

The event also featured special guest and keynote remarks from Representative Don Beyer, co-author of the COVID-19 Longhauler Act.

Watch the full event recording here!

 

Another great resource is our Solve M.E. Webinar Series with discussions with clinical and researchers and experts about ME/CFS.

To stay updated on recent developments, sign up for our free Research1st e-newsletter.

You can also visit the Centers for Disease Control (CDC) ME/CFS webpage for additional information, and their Patient Toolkit for materials designed to help patients, their families, and caregivers manage their healthcare provider visits.

You may also download the CDC Patient Toolkit items listed below:

  • About ME/CFS (DOWNLOAD)
  • Visiting a Healthcare Provider:
    Before Your Visit (DOWNLOAD)
    During Your Visit (DOWNLOAD)
    After  Your Visit (DOWNLOAD)
    A Healthcare Visit Checklist for ME/CFS (DOWNLOAD)
    Current Medications and Supplements Checklist (DOWNLOAD)

Below are some additional key items to empower you with more information:

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.

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)

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)

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

  • Link to Treatment Advice (PDF)
  • “Pearls of Wisdom,” Chronicle article from Dr. Lucinda Bateman (PDF)

4-Step Toolkit to Avoid Post-Exertional Malaise. This useful worksheet was created by the Stanford Medicine ME/CFS Initiative and is posted here with permission.

You can also visit the ME/CFS webpage created by the Centers for Disease Control (CDC) for additional information and materials. We recognize that the CDC webpage is still evolving and Solve M.E. looks forward to working with the CDC to facilitate continuing improvements.

Sample ME/CFS Disability Report (PDF) – Provided by The NeuroCognitive Research Institute

COVID-19 Insurance Denial Guidebook (PDF) – Provided by the attorneys at Kantor & Kantor, LLP.

COVID-19 Vaccine Eligibility, Safety and ME/CFS: What We Know So Far – from the ME Association