August 22, 2024 | News | Living with MS MS Research MS Treatments

Benign or burned-out MS: do they exist?

Two terms that can arise in discussions of multiple sclerosis are “benign” and “burned-out” MS. Both are controversial because they assume that current tools and technologies are able to detect everything that is going on under the surface in MS.

Benign MS is often defined as having little or no disability after living with the disease for over 15 years. MS is very individualized, so some people have little disability for many years while others experience severe or rapid worsening of their condition. The problem with this definition is that it relies on physical symptoms and ignores other problems that can occur in MS. For example, one study looked at 43 people with benign MS, defined as no significant disability after 10 years of living with MS (Correale and colleagues. Mult Scler 2012;18:210-218). Over the next 10 years, 80% of people got worse – primarily cognitive problems, worsening pain or more severe fatigue. Many developed new brain lesions on their MRI. So the disease was not at all benign when a fuller range of signs and symptoms was considered.

What is concerning is that once a person is labelled as having benign MS, they may not receive the care they need – either follow-up visits with their neurologist or disease-modifying treatment to control their disease.

At the other end of the life course of MS is ‘burned-out MS’ (BOMS). While there are various definitions, BOMS may be best seen as when disease activity (relapses and MRI lesions) has ceased, and the more damaging neurodegenerative inflammation that drives disability worsening has also stopped. This rests on the assumption that the person with BOMS has ‘aged out’ – their aging immune system no longer has the ability to cause further damage to the brain and spinal cord. Since BOMS is no longer active, the added assumption is that any further disability worsening would be due to normal aging.

For both benign MS and BOMS, the unfortunate implication is that treatment is not needed. In fact, the only published study on ‘benign/burnt-out MS’, produced by the largest managed care organization in the U.S., was an attempt to identify which MS patients could stop their treatment (McFaul et al. Neurol Neuroimmunol Neuroinflamm 2021;8:e960). However, there are simpler criteria for people with MS and their doctors to use when deciding whether or not to continue with a therapy – without resorting to speculative notions such as benign or burned-out MS.

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