The world is hugged by the faithful arms of volunteers. ~Terri Guillemets
Volunteers make the world go round. According to the U.S. Bureau of Labor Statistics, about 62.8 million people volunteered through or for an organization at least once in 2014. That’s 25.3 percent of the population 16 years and older. Based on the Independent Sector’s estimate of the average value of a volunteer hour ($23.07 in 2014), the estimated value of this volunteer service was nearly $184 billion.
Volunteering is a profoundly rewarding experience, especially if the population you are helping is badly in need of assistance. Patients with ME/CFS, many of whom were once volunteers themselves, have a variety of needs, many of which can be adequately met by a simple helping hand. For example, volunteers can offer to:
- Transport patients to doctor’s appointments. Many patients with ME/CFS can no longer drive or take public transportation.
- Help with forms and applications. Cognitive problems often make it difficult for patients to fill out lengthy applications and forms essential for disability or insurance benefits.
- Do light housekeeping. Patients may deplete their energy doing simple household chores such as doing laundry or preparing meals.
- Provide child care. Parents who are ill can often use some help caring for younger children.
- Raise funds. Funds are always needed to support advocacy efforts and ME/CFS non-profits.
- Promote awareness events. May 12 is ME/CFS International Awareness Day. There are many events scheduled during the second week of May to educate the public about ME/CFS.
There are endless ways to support the ME/CFS community, and your help is always needed!
Volunteer to Help Patients
You can volunteer to help individual patients in your area through the ME/CFS Connect page.
Volunteer to Help AMMES
AMMES needs volunteers! Do you have specialized knowledge in IT, fundraising, writing, editing, website maintenance? We can use you! We also need help with updating website information, answering emails, and putting together our monthly newsletter. To volunteer for AMMES please go to the Contact Us page.
Volunteer for Research
To find all NIH-funded clinical trials on ME/CFS, conduct an advanced search on ClinicalTrials.gov. Search term: Chronic Fatigue Syndrome or Myalgic Encephalomyelitis; select NIH as the funder type.
There is a full list of ME/CFS studies, open and closed, on Science for ME.
Here are some additional opportunities:
ME/CFS Neuroinflammation Study Online Survey
ME/CFS patients and healthy volunteers are encouraged to participate
Volunteers Needed for Stanford Brain MRI and Immune Profiling study
Right-handed ME/CFS patients and healthy volunteers age 18-60 will be compensated if selected. If you are interested in participating, please complete the online screening here: http://go.solvecfs.org/e/192652/stanfordcfsbrainmri/pqfgl/86252009
If you have any questions, please contact Tullia Lieb, ME/CFS Research Coordinator: tlieb@stanford.edu, (650)-723-8126
NIH ME/CFS Clinical Study
The NIH intramural clinical study on ME/CFS to take place at the NIH Clinical Center will focus on post-infectious ME/CFS in order to closely examine the clinical and biological characteristics of the disorder and improve our understanding of its cause and progression. The eligibility criteria for this study includes three groups of adults that either: 1) have ME/CFS with post exertional malaise fulfilling multiple consensus criteria; 2) had Lyme disease, were treated, and don’t have fatigue symptoms; or 3) are healthy volunteers. These groups were selected so that comparisons can be made between the groups to look for differences and similarities that may exist, using the unique resources of the NIH Clinical Center. All individuals will be very carefully characterized for all of the symptoms of ME/CFS using multiple criteria. The narrow scientific focus of this study is only the first step of what NIH hopes will be a broader national approach to better understand the biological basis of ME/CFS and the development of effective therapies. Learn more about this study: http://mecfs.ctss.nih.gov.