Contested and neglected: Social and medical marginalization in severe Chronic Fatigue Syndrome, 2025, Nezamdoust & Ruel

[Dolphin]

https://www.sciencedirect.com/science/article/pii/S0277953625010974

Social Science & Medicine​

Volume 388, January 2026, 118766

Contested and neglected: Social and medical marginalization in severe Chronic Fatigue Syndrome​

Bita Nezamdoust, Erin Ruel
Department of Sociology, Georgia State University, United States
Received 1 July 2025, Revised 4 October 2025, Accepted 7 November 2025, Available online 8 November 2025, Version of Record 11 November 2025.

Cite
https://doi.org/10.1016/j.socscimed.2025.118766Get rights and content
Complimentary access

Highlights​

• •
  Severe ME/CFS patients face deep social, medical, and structural exclusion.
• •
  Delegitimation of illness leads to isolation, distress, and denied support.
• •
  Gendered stigma shapes how women's pain is dismissed in health care.
• •
  Twitter (now X) offers access to the voices of an otherwise unreachable patient group.
• •
  This study urges reforms in care, disability access, and illness recognition.

Abstract​

This study addresses the persistent invisibility of people with severe Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) in research by centering their voices and examining how social and institutional forces shape their lives.

As a medically contested illness, ME/CFS—especially in its severe form—renders patients both physically incapacitated and socially invisible.

Drawing on qualitative content analysis of 342 tweets under the hashtag #severeME, we identify how contested legitimacy, gendered stigma, and systemic marginalization structure the daily realities of 161 individuals with severe ME/CFS or their caregivers.

Our findings highlight profound functional debilitation, emotional isolation, and exclusion from care and disability systems.

We argue for the urgent need to legitimize contested illnesses, reform models of care, and extend disability protections to restore dignity and support to this neglected population.

 

[Joan Crawford]

It's only contested by the psychosocial brigade. They developed and encouraged the contest largely it seems for professionals and career advancement. Patients, reality and science barely figure. Sad.

 

[Yann04]

It feels to me more as if the whole psychosocial stuff is mostly a post-hoc rationalisation for not believing we’re sick. I think the neglect stems further down then the BPS and similar models of the illness.

 

[Yann04]

Was a bit disappointed that they managed to define “CFS” without mentioning PEM. And they seem to focus excessively on “fatigue”. But there’s also a lot of good in here.

Although previous studies have documented ME/CFS illness experience (Ma et al., 2025; D. Roberts, 2018), few have focused on those in the severe category. Without attention to illness severity, research risks underrepresenting the most debilitating aspects of the condition and those who may suffer the worst societal consequences. People with severe ME/CFS are particularly likely to be excluded from research due to their near-complete absence from public life, making them hard-to-reach in research and leading to a partial understanding of the illness (Montoya et al., 2021),

Appreciate this.

The traditional healthcare model—designed primarily for acute conditions—proves inadequate in dealing with chronic illnesses, especially contested chronic diseases, which present unique and ongoing challenges (Grover and Joshi, 2015). Chronic care requires a reconfigured doctor–patient relationship in which patients have greater autonomy in the day-to-day management of symptoms. This shift is particularly crucial in contested chronic conditions, where medical knowledge is scarce and the lived expertise of patients offers indispensable insight. Yet the prevailing model continues to prioritize physician authority and epistemic privilege over patient experience, leading to harmful consequences. The disregard of the patient perspectives fosters mental distress, pressures patients into compliance with ineffective treatments, and even discourages seeking care, ultimately worsening the illness experience and leading to harm (Blease et al., 2017; Merone et al., 2022; Nettleton, 2006; Sharma et al., 2020).

This makes disability activism crucial in fighting for more inclusive benefits. Yet, ME/CFS and chronic illnesses alike are also marginalized by the disability community, which has historically sought to distance disability from illness (Taylor, 2005; Wendell, 1989). Bringing the “unhealthy disabled” individuals into the advocacy is thought to compromise the idea that ableism is the problem, not bodies, because chronically ill bodies can benefit from treatment and often seek it (Wendell, 1989). As a result, the inclusion of this group in disability advocacy remains limited, leaving them once again excluded and forced to navigate structural barriers largely on their own.

 

[rvallee]

Twitter (now X) offers access to the voices of an otherwise unreachable patient group.

This I would dispute, though. The patient group is very reachable. In fact it's literally begging to be reached, this is literally why they are using social media for. It's just that there is zero interest or incentive for professionals to do so. It would take a lot of effort, when health care services won't even make the smallest bit of effort to do anything for the mildest.

It would be hard to reach them all, or most of them, and it depends for what. Just to bother them with more stupid questionnaires? No. With a cure, hell yeah they are more than reachable, they want nothing more than that. A huge number can definitely be reached, especially with the right amount of effort.

Yesterday there was a thread posted on the /r/ChronicIllness sub-reddit asking whether members there would want to be cured, if it meant losing the part of themselves that chronic illness made. This has long been a trope from the biopsychosocial gang, how we don't want to return to the life we had before, and have adopted chronic illness as part of our identity. Total bullshit, obviously, and as predicted the response was a universal: duh. Literally 100% positive. Of course.

And I thought on that further and realized that I would gladly take total amnesia as a downside to any treatment that worked. Even if it meant I would forget every single memory I ever had, every person I have known and every experience I ever had, and it would be the easiest decision I would ever make in my life. If it was guaranteed to work, of course, which makes it a magical thing, so hardly a realistic scenario. Even though this is pretty much a form of death. And still it would be the easiest decision in my life.

Lilterally no one wants that. The widespread belief in the medical profession is that we choose that. It's literally impossible to be more wrong. Really impressive level of failure.

 

[Dolphin]

This I would dispute, though. The patient group is very reachable. In fact it's literally begging to be reached, this is literally why they are using social media for. It's just that there is zero interest or incentive for professionals to do so. It would take a lot of effort, when health care services won't even make the smallest bit of effort to do anything for the mildest.

It would be hard to reach them all, or most of them, and it depends for what. Just to bother them with more stupid questionnaires? No. With a cure, hell yeah they are more than reachable, they want nothing more than that. A huge number can definitely be reached, especially with the right amount of effort.

Yesterday there was a thread posted on the /r/ChronicIllness sub-reddit asking whether members there would want to be cured, if it meant losing the part of themselves that chronic illness made. This has long been a trope from the biopsychosocial gang, how we don't want to return to the life we had before, and have adopted chronic illness as part of our identity. Total bullshit, obviously, and as predicted the response was a universal: duh. Literally 100% positive. Of course.

And I thought on that further and realized that I would gladly take total amnesia as a downside to any treatment that worked. Even if it meant I would forget every single memory I ever had, every person I have known and every experience I ever had, and it would be the easiest decision I would ever make in my life. If it was guaranteed to work, of course, which makes it a magical thing, so hardly a realistic scenario. Even though this is pretty much a form of death. And still it would be the easiest decision in my life.

Lilterally no one wants that. The widespread belief in the medical profession is that we choose that. It's literally impossible to be more wrong. Really impressive level of failure.

As an aside, it is interesting to hear some people in the disabled community say they wouldn’t want to be cured. I’m not just talking neurodivergent people but people with physical disabilities. What percentage they might be, I have no idea.

 

[hotblack]

As an aside, it is interesting to hear some people in the disabled community say they wouldn’t want to be cured. I’m not just talking neurodivergent people but people with physical disabilities. What percentage they might be, I have no idea.

This was something I saw in parts of the mental health community with some conditions. Not in huge numbers but it existed. I think it can be present in unexpected places tbh.