Co-cure ME/CFS & Fibromyalgia: Information Exchange Forum: www.co-cure.org
The Hummingbirds’ Foundation for M.E. (HFME): www.hfme.org is UK site that recognizes how severe this illness can get. Also has protocols for hospitalization and anesthesia.
Dr. AC Bested: www.drbested.ca . Good for keeping abreast of her upcoming tv, radio and live appearances regarding ME/CFS, FM and ES/MCS. She has been specializing in these illnesses through her 19 year clinical practice; co-author of the Canadian consensus document and book on ME/CFS/FM.
Phoenix Rising ME/CFS Forums: search google. Large forums on a wide variety of topics written and run by people with ME/CFS for people with ME/CFS. Knowledgable moderators with tons of information and the right attitude (Cort is a gem!).
Dr. Sarah Myhill:www.drmyhill.co.uk links to an excellent overall website packed with precious info that really gets into the details of what is happening in the ME/CFS body. She provides generous recommendations and has one of the best books on ME/CFS downloadable for free. Dr. Myhill was on the team that published research on mitochondrial dysfunction in ME/CFS and is a leader in this field.
Invest in ME: www.investinme.org links to a great site with many personal ME/CFS stories, research and events articles.
VIP Dx: http://vipdx.comoffers the latest in XMRV & MLV testing, along with other relevent ME/CFS tests
Whittemore Peterson Institute: www.wpinstitute.org. This group is doing a fantastic job, and has forwarded ME/CFS research more in one year than any government organization has done in 30. In their own words: The Whittemore Peterson Institute is a non-profit institution whose mission is to serve the millions around the world who suffer from chronic inflammatory neuroimmune diseases such as Myalgic Encephalomyelitis/Chronic fatigue syndrome or ME/CFS, fibromyalgia, gulf war syndrome, autism and other similarly presenting illnesses. WPI's current activities include the development of a comprehensive medical research program, educating the public and medical professionals on the most recent advances, while continuing to seek federal medical research funding on behalf of all those who suffer from these debilitating diseases.
As a patient centered organization, WPI supports the search for effective treatments and the prevention of neuroimmune diseases. To accomplish the goal of rapid translation from its basic and clinical research to the medical profession, WPI has created collaborative networks among academic, scientific and medical institutions while continuing to engage with other major health related companies. In August, the Whittemore Peterson Institute for Neuro-Immune Disease (WPI), 501(c)3 corporation, celebrated the opening of a new $77 million dollar clinical research facility at the University of Nevada medical school in Reno, Nevada of which they are an integral part. They are the first institute in the world to integrate research, education and soon, medical treatment of neuro-immune diseases, such as Myalgic Encephalomyelitis / Chronic Fatigue Syndrome and Fibromyalgia. Even before the official grand opening, they made a break-through discovery that has provided hope to millions of people worldwide who suffer from Chronic Fatigue Syndrome, (CFS), an often seriously-debilitating disorder that profoundly impairs a person's ability to hold a job, care for their families and even continue taking care of their most basic needs. Many become home bound and isolated from their friends and family due to the loss of physical stamina and other debilitating symptoms. WPI's discovery of the strong association between the third human retrovirus (XMRV) and those with CFS and other similar neuro-immune diseases, has significant implications for potential treatment of millions in the U.S. and around the world as well and preventing disease of millions more. Although this institute is located in Nevada, the WPI and its collaborators have already made a significant impact in this field through their active participation at the first International XMRV workshop and commitment to the blood safety working groups of Canada and the United States.
Links to Related Websites
Dr Amy Yasko: www.dramyyasko.com provides free webinars, a discussion group, a store and more for people with neuro-immune disorders like autism, ME/CFS, ALS, etc. Her program is based on optimizing the methylation cycle that regulates immune response, detoxification and neurotransmission. Genetic testing of 30 genes involved in this pathway is available, upon which specific supplements are suggested to help optimize the cycle and consequently one's health.