The Bateman Horne Center provides educational resources to improve understanding of complex chronic illnesses and assist with self-management. The resources include content about ME/CFS, fibromyalgia, and long COVID.
The Workwell Foundation conducts research concerning the functional aspects of ME/CFS, long COVID, and other fatigue-related illnesses to facilitate an understanding of the biological basis for fatigue and post-exertional malaise. They offer unique testing services for individuals with disabling fatigue who are unable to work and provide innovative resources to educate patients and providers.
The CDC has developed tools and resources to help people with ME/CFS, their caregivers, and families learn more about ME/CFS and manage their healthcare provider visits. These resources include handouts and continuing medical education courses for healthcare providers.
The NIH ME/CFS Research Working Group has scientific/research contacts who can help investigators plan and develop ME/CFS research grant applications. The NIH NeuroBioBank is also a resource for ME/CFS researchers. Additionally, individuals with ME/CFS can participate in clinical trials or studies.
The Solve ME/CFS Initiative provides resources for patients and caregivers, including mental health resources, support groups, and crisis support.
The Stanford Medicine ME/CFS Initiative provides resources for patients and clinicians, including conferences, blogs, self-help, and videos.
Healthline Resource Guide for Fibromyalgia provides a list of nonprofit organizations that offer medically accurate information about fibromyalgia research, symptoms, diagnosis, and treatment. Some of the organizations listed include the National Fibromyalgia Association, Fibromyalgia Coalition International, and National Fibromyalgia and Chronic Pain Association.
American College of Rheumatology provides information on fibromyalgia symptoms, diagnosis, and treatment. It also offers tips on self-care, such as exercise, acupuncture, and psychotherapy.
CreakyJoints provides a list of resources for patients and caregivers, including information on fibromyalgia symptoms, diagnosis, and treatment.
Mental Health Resources for Fibromyalgia provides information on mental health resources for people with fibromyalgia, such as the Anxiety and Depression Association of America and National Fibromyalgia and Chronic Pain Association.
The Administration for Community Living offers a wide range of services and supports to help people with long COVID. It includes resources from across the federal government, such as the Office of Disability Employment Policy (ODEP) at the Department of Labor, CDC’s COVID-19 resource site, and the Department of Education’s Office for Civil Rights and Office of Special Education and Rehabilitative Services.
The US Department of Labor information on long COVID, including its symptoms and how it can affect workers. It also includes resources on requesting and providing workplace accommodations for individuals with long COVID.
COVID.gov is committed to addressing the needs of people living with long COVID. It provides resources to help individuals realize that they may have long COVID and encourages them to get the care and support they need as soon as possible. It also offers services and support for the government response to the long-term effects of COVID-19.
Solve ME/CFS Initiative provides resources for long COVID, including mental health resources, support groups, and advocacy projects.
The Dysautonomia Project offers a variety of resources, including educational materials, support groups, and information on clinical trials.
Dysautonomia International provides a list of resources for patients, including financial assistance programs and support groups.
The Dysautonomia Support Network is an organization run by patients for patients, offering support, education, and advocacy resources.
Dyna, Inc . provides a list of certified resources for dysautonomia patients, including support groups, educational materials, and advocacy organizations.
Life Hypermobile provides a collection of resources to help individuals understand more about dysautonomia, including POTS, and its relationship to EDS.
The Mast Cell Disease Society is a non-profit organization dedicated to providing multi-faceted support to patients, families, and medical professionals in the MCAS community. They offer education, advocacy, and collaboration, and represent all those affected by Cutaneous and Systemic Mastocytosis and their variants, Mast Cell Activation Syndromes, and Hereditary Alpha-Tryptasemia.
Mast Cell Action provides free resources designed to support people living with MCAS and their families. They offer a range of wellbeing resources on their website.
Co-Pay Relief provides financial assistance to eligible patients to help with the cost of medications and treatments for MCAS.
Mast Cell Hope ’s mission is to advance research to find new treatments and ultimately cures for Mast Cell Diseases and to educate care providers and patients about these diseases.
The Ehlers-Danlos Society is a trusted global resource for individuals, caregivers, and healthcare professionals on topics related to EDS, hypermobility spectrum disorders, and related conditions.
The EDS GP Toolkit sets out the latest thinking in EDS, including the new approaches to diagnosis and treatment set out by the International Consortium on the Ehlers-Danlos syndromes.
The Mighty is a community full of EDS perspectives through stories, the ability to connect and chat with others who have EDS.
Mountain States Genetics provides an EDS algorithm and resources for primary care, including information on physical therapy, exercise, and braces for people with EDS or HSD.
The Zebra Network provides information on Craniocervical Instability, also known as the Syndrome of Occipitoatlantialaxial Hypermobility. The website describes the symptoms of CCI, which include neck pain, headaches, and dizziness, and provides information on the condition’s causes and treatment options.
Chronic Pain Partners offers a patient guide for people with Ehlers-Danlos syndrome who are seeking a diagnosis of cervical spine instability and treatment options. The website describes the difference between craniocervical instability and atlantoaxial instability and provides information on surgical outcomes and complications.
Dr. Gilete provides information on surgical treatment for Craniocervical Instability, which usually consists of the posterior fusion of Occipital, Atlas (C1), and Axis (C2). The website describes the use of pedicle screws in the procedure and provides information on the recovery process.
The Craniocervical Instability Fund is a non-profit organization that aims to help patients get diagnosed and increase the availability of medical diagnosis centers that can rule out symptoms of Craniocervical Instability.
Centeno Schultz Clinic provides information on the three major treatment options for patients with Craniocervical Instability Ehlers Danlos Syndrome: conservative care, posterior fusion surgery, and craniocervical fusion surgery.
