For the estimated 836,000 and 2.5 million Americans who have long endured both the devastation and the stigma of Chronic Fatigue Syndrome, this week’s announcement by the Institute of Medicine (“IOM”), an independent organization that provides unbiased and authoritative advice to policymakers and the general public, was a huge milestone.
The announcement is particularly important to us. Partner Jason Newfield recently completed a four year term on the Chronic Fatigue Syndrome Advisory Committee, a federal committee that advises the United States Department of Health and Human Services regarding Chronic Fatigue Syndrome. We are knowledgeable and experienced with ME/CFS, and take great pride in representing ME/CFS patients in disability insurance matters.
IOM was tasked by a large number of federal agencies: The Department of Health and Human Services (HHS), the National institutes of Health, the Agency for Healthcare Research and Quality, the Centers for Disease Control and Prevention, the Food and Drug Administration, and the Social Security Administration. The goal was to investigate the state of the disease. The results will change the lives of patients and change how the medical and insurance communities address patients and the disease.
In its report, Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness, the committee proposes new diagnostic criteria that will facilitate timely diagnosis and care and enhance understanding among health care providers and the public.
IOM advised doctors to do a better job of diagnosing the illness, and recommends that a new name – Systemic Exertion Intolerance Disease, or SEID – should be used to reflect a key identifying symptom: being exhausted by exertion.
The panel issued new criteria that it believes will give doctors a better way to diagnose the illness. There are three core symptoms: fatigue and reduction in pre-illness levels of activity that lasts for more than six months, post-exertion exhaustion that becomes progressively worse over time, and sleep that does not refresh despite exhaustion.
A fourth symptom is the “brain fog” that most patients describe as part of their illness and this is must be present as part of their diagnosis. Clinically termed cognitive impairment or orthostatic intolerance, this describes the experience that patients have of feeling better when they are lying down and having trouble staying upright for extended periods of time.
The community of patients with this disease, which in recent years has been renamed ME/CFS – is large, and there are several advocacy groups that have been dedicated for many years to fighting for recognition of ME/CFS as a disease, not a syndrome, and to dramatically increase research funding.
The IOM’s report included a report of an extreme low level of research into the causes, treatments and even history of the disease. The hope is that the findings of this report will lead to increased research as well as a medical community that will take the disease seriously and hopefully lead to better treatment.
Two major recommendations that will also help disability claimants suffering from ME/CFS/SEID:
1- that a specific medical billing code be assigned
2- the use of the word “disease” as opposed to “syndrome”
The IOM report is important, but it will be some time before its impact reaches the disability insurance world. If you are a ME/CFS patient and your disability claim is being challenged, please call our office today to learn how we can help you. Call us at 877- LTD-CLAIM (877-583-2523) to learn more.