Journal of IiME Volume 4 Issue 1 www.investinme.org Letter from America Annette Whittermore – Testimony to CFSAC that more closely match the number of individuals impacted by the disease and the severity of the illness. Millions of Americans are ill with ME and yet the NIH allocates a mere $1.00 to $4.00 per year per person. The loss in economic dollars is conservatively estimated to be $9 billion per year. With that kind of economic loss to our society, why isn’t this disease funded at the level of hepatitis C which is currently at $93 million a year? Patients diagnosed with ME also suffer from inflammatory bowel disease, cognitive impairment, fibromyalgia, anaemia, gall bladder disease, chronic Lyme disease, sleep disorders, chronic pain, depression, hormonal dysregulation, frequent viral infections, heart disease, and cancer. Yet these sick Americans are forced to seek unproven medical treatments for symptomatic relief due to the lack of scientific understanding of the underlying immune deficiency that is driving this disease. • Request that research be conducted on XMRV in infectious disease by the NIAID and outside researchers to continue the valuable work begun at the WPI. The human retro virus, XMRV, has been found by WPI researchers in diverse disease populations, including cancer, autism, fibromyalgia, gulf war illness and ME, in men, woman and children. Yet four of WPI’s most recent grants were denied funding on the basis that not enough is known about XMRV to warrant further investigations. • Create and fund Centers of Excellence in neuroimmune diseases to care for patients with complex disorders caused by infectious agents. Scientific medical criteria should be developed that hold these Centers to standards of performance that include timelines and effectively measure demonstrated outcomes. All such Centers should be interconnected to provide medical consistency in care. They should include research, clinical care and medical education components from classroom lectures, to residencies and fellowships in neuroimmune disease. • Request a congressional hearing to determine why this disease has been so poorly managed by the CDC and NIH, in order to assure the American public that the failure to recognize a serious threat to the nation’s health will not be repeated. There is no question that the CFSAC, as defined by its charter, can be an important avenue to a meaningful discourse between those who care Invest in ME (Charity Nr. 1114035) about M.E. and those who are capable of initiating action from within the government. The question is: Has the CFSAC achieved the goals stated in their charter? The charter states its purpose …..as established to provide science-based advice and recommendations to the Secretary of Health and Human Services and the Assistant Secretary for Health on a broad range of issues and topics pertaining to chronic fatigue syndrome (CFS). Is this goal being aggressively pursued? Is scientific evidence being reported to the Secretary of Health? What actions have been taken by the Secretary of Health that would provide evidence that this information is being acted upon? The Function of the committee is stated below: The Committee shall advise and make recommendations to the Secretary, through the Assistant Secretary for Health, on a broad range of topics including: (1) the current state of knowledge and research about the epidemiology and risk factors relating to chronic fatigue syndrome, and identifying potential opportunities in these areas; (2) current and proposed diagnosis and treatment methods for chronic fatigue syndrome; and (3) development and implementation of programs to inform the public, health care professionals, and the biomedical, academic and research communities about chronic fatigue syndrome advances. The WPI took the earlier recommendations of this committee seriously. In fact, we built our Institute on the premise that this disease and others very similar to it, deserves “Centers of Excellence” that can bring answers to patients and doctors, in the same manner as multiple sclerosis and muscular dystrophy have successfully done. We believe that to find answers to this complex disease we must combine the translational efforts of basic and clinical researchers working in collaboration with knowledgeable physicians. This is the dream of the WPI: to bring discovery to a disease which has impacted millions of lives, to develop effective treatments and to one day provide preventative measures that will stop the spread of the disease. This is not something that we can afford to do Page 30/56
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