The IOM committee’s findings regarding CFS:

• There is indeed a disease;

• Three features are present in virtually every patient with CFS:

1. Profound fatigue (devastating and ongoing) not alleviated by rest. “We’re not talking ‘it’s 3 a.m. and I’m feeling tired kind of fatigue.’ This is devastating knocked out fatigue,” said Ellen Wright Clayton, M.D., J.D.
2. Post-exertional malaise (often described by patients as a “crash” or “collapse” after even minor physical or mental exertion). “If you and I get tired, we push through it, recover and get over it. For these folks, exertion has a profound impact, often delayed a day or two,” she said.
3. Unrefreshing sleep

• And at least one of these two criteria must be present:
1. Cognitive impairment (brain fog, inability to think) or
2. Orthostatic intolerance (needing to sit down before you fall down)

• The name of the disease should be changed to systemic exertion intolerance disease (SEID). “We spent a lot of time thinking about a name, because we feel the name chronic fatigue syndrome has done this community a huge disservice. It’s time to get past that,” Clayton said.