Many with ME/CFS May Be Saved From ‘Uninsurable Limbo’
"In the end, it all came down to John Roberts," ME/CFS Alert co-host Llewellyn King wrote in a commentary posted June on Chron.com. Poignantly, he observes:
“In the tumult the wailing and the sighing, the gentlest of gentle sighs, inaudible to all but those who know, comes from the permanently sick, just-alive people who suffer from the immune system disease known as Chronic Fatigue Syndrome, called Myalgic Encephalomyelitis in much of the world.”
ME/CFS Patients’ Experiments with Food Avoidance Often Ad Hoc
A recent Spanish study of severe ME/CFS cases found that though the majority reported practicing avoidance of dairy products and many avoided gluten (based on information from various sources), their different GI symptoms generally did not improve on these exclusion diets. The researchers conclude that "dietary restrictions should be based on a proven food allergy or intolerance," and counseling based on sound nutritional knowledge.
‘Next Generation’ Lyme Test Cleared by FDA
On June 27, Gold Standard Diagnostics in Davis, CA, announced FDA clearance of its ‘next generation’ Lyme Immunoassay for detection "at any disease stage." Details here.
Dr. Friedberg Recruiting for Home-Based ME/CFS Study
IACFS/ME President Fred Friedberg, PhD, specializes in ME/CFS and fibromyalgia research at Stony Book University’s Applied Behavioral Medicine Research Institute. He is leading a home-based online CFS self-management study and has asked that we inform the patient community of the opportunity to participate.
Internet and Windows XP or later version required; no in-person visits required; and participants will be paid. For further information call: Elaine Beun, RN, at 855 672-1900 or email email@example.com.
DePaul Program Shepherds Students with Disabilities
An important feature of DePaul University in Chicago, home of ME/CFS/FM champion Dr. Lenny Jason, is the Office of Students with Disabilities. One program, Productive Learning Strategies (PLuS), is a year-round comprehensive program designed to meet the needs of DePaul students with specific learning disabilities and or attention deficit disorders, from Asperger’s Syndrome, Bipolarism, and OCD to ADHD. They serve hundreds of students, full and part time, undergraduate and graduate.
DePaul also offers various programs for students who may be interested in careers working with the disabled, including a program for introducing students into the disabled community ("The biggest minority group in America.")
Crucial CFS Research: $830,000 Available to Match Community Donations 5 to 1
The Mason Foundation has promised $830,000 to carry on the groundbreaking ME/CFS biomarker-identification research piloted by experts at Bond University & Queensland Health in Australia, and Stanford University & Simmaron Research (Dr. Peterson’s Incline village Medical Center) in the US. The catch is that the $830K will be for Phase 2 – first the collaborative has to come up with the money for Phase 1 ($75,000 donated by patients/advocates so far, $150,000 still to go). This means every $1 you donate for Phase 1 brings another $5 to achieve the payoff in Phase 2. Secure donations here.
Dr. Peter Rowe Presentation on Pediatric CFS
Slides and corresponding text of Dr. Peter Rowe’s presentation regarding his work on pediatric CFS are available online at www.Research1st.com. Dr. Rowe, a professor of pediatrics at John’s Hopkins Children’s Center, made the presentation at the federal CFS Advisory Committee meeting on June 13, 2012. He notes that they’ve been making large quality of life gains in their 2-year study, "but this kind of care is not available to many people due to gaps in medical service for CFS."
The Canadian FM & Marijuana Use Study
A recent report on a survey that asked people with fibromyalgia (half with another primary diagnosis) about cannabis use ("Herbal cannabis use in patients labeled as fibromyalgia is associated with negative psychosocial parameters") stated that 13% used cannabinoids, often not prescribed, and there was a trend for them "to be unemployed and receiving disability payments." Statistics indicate the cannabis use rate among the adult Canadian population overall is if anything higher than for this group, who suffer from so much pain and difficulty. And the sensational headlines picking up on this story are sad – e.g., "Cannabis use for fibromyalgia linked to poor mental health," and "Illegal marijuana usage among fibromyalgia patients." Meanwhile there’s so little research on whether cannabinoids can help patients’ pain.
ME Research UK Reports on Visual Function Studies
ME Research UK is a national charity that funds biomedical research into ME/CFS. The new issue of their Breakthrough magazine, at MEResearch.org.uk, features information on a study of visual function in ME/CFS (pp 4 & 5) and other articles, updates on projects the charity is funding, and reports on research from around the world.
Summary of Documented CFS Immune Abnormalities
The June 2012 issue of Invest in ME’s Journal of IiME (PDF here) includes an article by Margaret Williams (pp 29-98) titled "A summary of documented immune system abnormalites in ME/CFS from 1983 to 2011." As she comments:
“Given the extent of this international peer-reviewed published evidence, one would have thought that no competent medical scientist, clinician or medical journal could credibly deny or reject the evidence that ME/CFS is a disorder of disrupted immune function, yet this continues to be the case.”
Note: This information has not been evaluated by the FDA. It is not intended to prevent, diagnose, treat or cure any illness, condition or disease.