Documenting disability in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), 2020, Podell et al

Paywall, https://content.iospress.com/articles/work/wor203178
Sci hub, https://sci-hub.tw/10.3233/WOR-203178

 

This is open access now

 

This looks very helpful not only for people in the U.S. -- but haven't read it yet.

In any case it seems to contain a helpful summary of some figures and references.
[including links to the references.]

Podell et al:

"The National Academy of Medicine also reported that patients with ME/CFS can be more functionally impaired than patients with type 2 diabetes mellitus, congestive heart failure, hypertension, depression, multiple sclerosis, and end-stage renal disease [1, 7].

"An estimated 25% are bedbound or housebound [1, 6] and the Centers for Disease Control and Prevention (CDC) reported that an estimated 75% are unable to work [8].

"Recovery rates are low, estimated to be about 5% [9] and as a result, patients can be ill for decades. This level of impairment led the National Academy of Medicine to establish new clinical diagnostic criteria in 2015 that require “A substantial reduction or impairment of the ability to engage in pre-illness levels of occupational, educational, social or personal activities.”

"Yet, in spite of this level of impairment, people with ME/CFS often struggle to obtain disability benefits. In fact, in 2017, the US Social Security Administration (SSA) reported that only about 13,000 individuals were receiving Social Security disability for a diagnosis of ME/CFS at that time [10].

"Given the prevalence and level of debility, this is a surprisingly low number and likely reflects the lack of understanding of the disease and its functional impact.

"This low number of recipients also reflects the high standards of proof required to qualify for ME/CFS disability and the need to use evaluation methods that do not come naturally to most clinicians or even to attorneys who have experience with disability claims for other diseases."