For providers & researchers

For decades, patients living with ME and their caregivers have been denied equal or adequate investment in research or access to care. Fortunately, that is starting to change – many promising areas of research are emerging as well as new opportunities for expanding medical education and clinical care – but there is still so much work to do. To learn more about how you can get involved, sign up for our email list or browse the materials below.

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Contents


Diagnosing and caring for patients

Diagnosis, clinical care and research have been hampered for decades by the use of overly-broad criteria that can describe patients with a wide range of conditions and by the construction of “Chronic Fatigue Syndrome” as a diagnosis of exclusion. In 2015, the US Institute of Medicine created a new diagnostic criteria to affirmatively diagnose the condition. However, some patient advocates and researchers are concerned that this criteria may still be too broad, particularly if used to select human subjects for research. Frequently used criteria include the Canadian Consensus Criteria and the International Consensus Criteria.

While there are currently no FDA-approved treatments for ME, many patients can live a higher quality of life if they have access to a physician who can help them learn how to pace their activity; manage the symptoms of pain, unrefreshing sleep, and orthostatic intolerance; and diagnose and treat common comorbidities such as fibromyalgia, Ehler’s Danlos Syndrome, postural orthostatic tachycardia (POTS), and mast cell activation disorder. The below reports are worth reading for any physician interested in learning more about the disease and how to diagnose and care for patients.

Resources

 


Research

While research has lagged behind many other fields due to do low levels of investment, the field is growing with the recent entry of new labs and growth in private and public support. Learn more about the current state of the field, attend a conference, or connect with an existing research group.


Conferences & organizations

UNITED STATES

Organizations & conferences for researchers

Research Groups

UNITED KINGDOM

Organizations & Conferences

EUROPE

Organizations, Conferences, and Research Groups

AUSTRALIA

Organizations & Conferences

More to come!

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