By Kyle Kenney
Science Communications Intern
Over the past few years, the Association has expanded its online presence in an effort to serve more people with CFS and to engage more people in our cause. Social media has grown to play a huge part in our lives; and websites like Facebook, Twitter and YouTube have provided new ways for the Solve ME/CFS Initiative to communicate with CFS patients, advocates and researchers.
Thanks to YouTube, people have been able to share compelling videos about a range of CFS-related topics. We created a YouTube channel, SolveCFS, that archives webinar recordings featuring the brightest minds behind CFS research as well as helpful multimedia resources. If you are unfamiliar with our YouTube channel, reviewing 10 of our most popular videos is a good place to start. Here they are, in reverse order leading up to the most frequently viewed video:
Date posted: 11/19/10 Length: 1 hr., 48 min.
Periods of intense symptoms (often called relapses, setbacks or flares) are a common and often demoralizing part of CFS. Besides creating additional pain and discomfort, they undermine efforts to gain control. Pacing offers an alternative. Matching activity to energy can reduce suffering, bring stability to life and minimize relapses. Dr. Bruce Campbell, executive director and founder of the CFIDS & Fibromyalgia Self-Help program, gave an overview of pacing, focusing on understanding limits and learning pacing strategies. He also described practical ways to use pacing to enjoy the holidays and other special events.
Dr. Dane B. Cook, assistant professor at the University of Wisconsin-Madison School of Kinesiology, discussed the research on acute exercise in CFS from an exercise physiology perspective and from a patient perspective. He reviewed the research on physiological responses during exercise followed by physiological and symptom responses post-exercise (i.e., post-exertional malaise). Dr. Cook also outlined the differences between acute and chronic exercise responses in the studies that have examined exercise training in CFS.
Date posted: 4/14/10 Length: 1 hr., 26 min.
In this presentation, Dr. Leonard A. Jason of DePaul University explores current CFS and ME/CFS case definitions and whether they adequately identify patients who have this illness. He offers the argument that better case definitions might help identify more homogenous patient groups, which could facilitate the identification of biological markers for this illness. Dr. Jason has been engaged in several of the efforts to craft meaningful definitions for CFS. He will discuss the various CFS case definitions, how they impact research and care, and how the definitions might be improved to better serve researchers, clinicians, and patients.
Date posted: 10/21/10 Length: 1 hr., 35 min.
Unfortunately, people with CFS often suffer from more than CFS alone. Internist Dr. Morris Papernik of ProHealth Physicians Group and Hartford Hospital in Hartford, Conn., discusses illnesses or disorders that may overlap or co-exist with CFS, including fibromyalgia, Gulf War syndrome, irritable bowel syndrome, interstitial cystitis, multiple chemical sensitivities, temporomandibular disorder and various infections. He goes A-Z through these common comorbid conditions and tips for dealing with multiple disorders.
Dr. Papernik is board certified in internal medicine and he works to educate health care professionals, as well as the lay public, about chronic fatigue syndrome (CFS) and fibromyalgia. He is a member of the faculty of the University of Connecticut Medical School. Dr. Papernik is a former appointee to the Chronic Fatigue Syndrome Advisory Committee of the U.S. Department of Health and Human Services.
Date posted: 5/21/10 Length: 8 min.
This short film focuses on issues that women with chronic, painful conditions experience in seeking care from the current medical system. Chronic fatigue syndrome, endometriosis, fibromyalgia, interstitial cystitis, TMJ and vulvodynia are used to illustrate the types of conditions that are dismissed and neglected by the heatlh care and research establishments. This is part of the Campaign to End Chronic Pain in Women.
Date posted: 9/6/09 Length: 6 min.
Wilhelmina has had CFS since 1983. Here she talks about her experiences as a spokesperson through “The Faces of CFS” exhibit and her greatest struggle, the cognitive problems associated with CFS.
Date posted: 3/25/10 Length: 1 hr., 15 min.
Dr. Marvin Medow of New York Medical College describes his study of abnormal blood flow in patients with CFS and orthostatic intolerance as well as techniques his team uses to measure blood flow and chemical changes that may explain many of the symptoms experienced by CFS patients. You’ll learn more about orthostatic intolerance, tilt table testing, transcranial Doppler and microdialysis.
Date posted: 5/21/10 Length: 1 hr., 40 min.
CFS expert clinician Dr. Charles Lapp describes his “Stepwise Approach” to treating CFS and FM in this webinar. This approach uses traditional medical therapy complemented by proven wellness techniques to restore well-being and help the sufferer to improve naturally. This is accomplished through education, proper nutrition, low level graded activity, medical management of symptoms, control of perpetuating factors and supportive therapies
CFS researcher and clinician Dr. Anthony Komaroff of Harvard Medical School and Brigham and Women’s Hospital explores some of the infectious agents connected to CFS, including Epstein-Barr Virus (EBV), Human Herpesvirus (HHV)-6, Q-fever, Ross River virus, borrelia burgdorferi (agent that causes Lyme disease), Parvovirus, Borna disease virus, Influenza A (H1N1) virus (swine flu), enteroviruses and mycoplasmas, as well as recent associations with XMRV and polytropic murine leukemia viruses. Dr. Komaroff reviews other research that definitively demonstrates the biological nature of CFS.
Date posted: 9/1/10 Length: 1 hr., 35 min.
Peter Rowe, MD, of Johns Hopkins University School of Medicine describes orthostatic intolerance (OI) and approaches to its treatment in chronic fatigue syndrome (CFS). He explains the different forms of OI, including neurally mediated hypotension (NMH) and postural orthostatic tachycardia syndrome (POTS) and other names used to describe these conditions. Dr. Rowe covers overlapping and co-existing conditions including joint hypermobility, Ehlers Danlos Syndrome (EDS), migraine, allergy, pelvic congestion syndrome. He reviews medications used to treat OI as well as postural and dietary approaches to comprehensive care.
Date posted: 9/9/09 Length: 4 min.
Responses from 1,784 chronic fatigue syndrome patients to the question, “What would you do if you were completely well tomorrow?” Symptoms of CFS and ways you can help. You can be part of the solution; help us solve CFS. Brought to you by the Solve ME/CFS Initiative .
Kyle Kenney is serving as a science communications intern for the summer of 2012. Kyle is a sophomore industrial engineering major at the Georgia Institute of Technology. Kyle has family members with CFS.
June 10, 2012