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

Andy

Retired committee member
Background: According to the 2015 National Academy of Medicine report, myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) “is a serious, chronic, complex, and systemic disease that frequently and dramatically limits the activities of affected patients.” ME/CFS affects between 1 and 2.5 million Americans, leaving as many as 75% unable to work due to physical, cognitive and functional impairment. Unfortunately, many doctors and lawyers lack the knowledge of how to properly document an ME/CFS disability claim, leaving patients unable to access disability benefits.

Objective: The goal of this article is to summarize the approaches used by experienced clinicians and lawyers in successful ME/CFS disability claims.

Methods: The authors reviewed the types of US disability insurance programs and the evidence commonly required by these programs to demonstrate ME/CFS disability.

Results: This article summarizes the range of methods used in successful US disability claims, which include documentation of the functional impact of post-exertional malaise and the use of methods that provide objective evidence of impairment.

Conclusions: Medical providers and lawyers can use these tested methods to obtaining disability benefits for people with ME/CFS. Physical therapists, occupational therapists, and other specialists play an important role in providing objective evidence for ME/CFS disability claims.
Paywall, https://content.iospress.com/articles/work/wor203178
Sci hub, https://sci-hub.tw/10.3233/WOR-203178
 
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."
 
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