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.

 

[Yann04]

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.

It’s a pretty common stance in the deaf community.

 

[MrMagoo]

If you want to be cured you’re denying your valid lived experience. If you don’t want to be cured then it can’t be all that bad and you like being special.

It’s all a victim blaming exercise. And clouds the point. The point is our lives could be improved by others in society, but are not. Instead we face discrimination.

It reminds me of various false oppositions like the endless debate about what women should or shouldn’t wear, sidestepping the real problem of violence towards women - which tends to happen irregardless of sartorial choices.

 

[Dolphin]

From Chronic Living Therapy newsletter:

Interview with Bita Nezamdoust - medical sociologist and author of "Contested and neglected: Social and medical marginalization in severe Chronic Fatigue Syndrome"

---
Bita Nezamdoust - medical sociologist

We start 2026 with this interview in which Bita Nezamdoust reflects on her recent publication, looking at how isolated patients use social media. She reflects on how this may help therapists to understand the experiences of people with severe and very severe ME.

This patient group is often neglected due to the 'non-standard' approaches needed to search them out and listen to them. Using short communications on social media is an ingenious way to amplify some of the voices and needs of these patients.

Bita gave generously of her time in answering my many questions and the article gives an empathetic insight into the lives of people with severe, and very severe, ME.

Read Bita Nezamdoust's article

https://chroniclivingtherapy.com/nezamdoust-marginalisation-neglect-severe-me/

Some extracts:
--
"As I closely read and coded the tweets, patterns began to emerge around recurring experiences such as:

physical debilitation
social isolation
medical neglect
loss of independence
struggles with disability systems"
--
"These themes reflect different but interconnected areas of life where delegitimization plays out. For example, disbelief from clinicians affects access to care. This in turn affects eligibility for disability support, which then shapes economic survival & emotional well-being"
--
“Even more importantly, Twitter allows people to speak in their own words, without mediation by clinicians, researchers, or institutions. For a condition that is often dismissed or psychologized, that unfiltered expression is especially powerful. The platform also enables collective storytelling through hashtags. This made it possible to examine shared experiences while still respecting individual voices.”

 

[Trish]

I seem to have missed this publication when it was first posted here. I have now read the whole article. Setting aside my discomfort of using sick people's tweets as source material for research without their permission, the article is sort of OK, though it says nothing new that hasn't been said many times before.

By focusing on the area of lack of recognition, social support and medical care, and the whole gaslighting and misogyny framing used by social scientists, I think the picture painted of life with severe ME/CFS is too focused on the psychosocial impact and does little to reflect the reality that people with severe ME/CFS are very sick.

There's too much focus on fatigue, little understanding of PEM and no mention of key symptoms such as OI and pain. The general assumption seems to be that if we just had recognition and accommodations and psychological therapy we could live nearly normal lives. That's the impression I'm left with.
____________________

Some quotes and comments from the original article:

Failure to adjust for functional limitations through institutional support mechanisms additionally exacerbates exclusion from employment, healthcare, and social life. Given the right adjustments, people with ME/CFS, in all its categories of severity, possess capabilities that could be revived to a reasonable and necessary level of function for an elevated experience of life. As the social model of disability would argue, people with ME/CFS are not disabled solely by their physical symptoms but, in large part, by the failure of social structures to accommodate their diverse levels of functioning and needs (Oliver, 2013).

I think that shows a profound lack of understanding of the fundamental difference between having a disabling illness and having a physical disability. However much support and accommodations are made, someone with severe ME/CFS is unable to work or socialise anything like a healthy person can.

Fatigue, as the core symptom, is especially challenging because of its relapsing-remitting nature. People with ME/CFS experience what is called Post-Exertional Malaise (PEM), or the cyclic deterioration of symptoms triggered by overexertion, with recovery timelines that are unpredictable and indefinite (Montoya et al., 2021; M. Roberts and Gaffiero, 2025). These unpredictable fluctuations present unique challenges to both recognition and accommodation.

I think many of us would dispute fatigue as the core symptom. I also think the brevity of attention paid to PEM is a severe failing in the article. The lack of depth achievable in a research study based on tweets shows here, I think.

Edit to add: 'triggered by overexertion' is so very misleading. Unless you explain overexrtion for someone with very severe can be lifting a glass of water, chewing food, or speaking at all, this is totally misleading.

With structural support to accommodate severe ME/CFS to fit their energy envelopes without risking PEM, coupled with treatment methods to extend the windows of the “good days”, affected individuals can bloom to their full available potential, and overall have a significantly elevated illness experience. These ambitions will only materialize if the disability community stands behind people with ME/CFS and other invisible, fluctuating disabilities, against ableist structures that run the exclusion of people with all sorts of physical dysfunctions

I object strongly to the glib positivity of this paragraph. However much support we have, fitting our envelopes without risking PEM is an unachievable dream for most of us. As for 'blooming to our full potential' or having a 'significantly elevated illness experience'... words fail me. Would anyone dare to talk of people with equally disabling and horrible chronic disease in those terms?

We don't need the disablity community to 'stand behind us'. We need decent medical accessible medical care and research.

It is hoped that the portrayal of the illness experience of people with ME/CFS in this study will help raise public awareness and provide compelling evidence for policymakers to turn a serious and critical eye on rules and regulations around research, care, and accommodations of ME/CFS. This would include enhancing public support through safe and easy-to-access healthcare, appropriately defined disability accommodations and benefits, and mental health support, to lift these people out of despair and entrapment, into an elevated life experience deserving of their dignity.

Maybe I'm being too grumpy about this, but I find the glib wishful thinking in this conclusion unhelpful.

I'm sure the writer is well meaning and trying to be helpful, but my overall conclusion is that social science research of this sort is just a never ending merry go round of reading and summarising each others superficial research, doing a bit of easy data collection using either online questionnaires or ready made online material scraped without permission and analysed into glib summaries. And of course the awarding of a PhD and the illusion that the author is contributing new and important insights.

My advice to the author. Get out of your ivory tower and get yourself a job as a carer for people with very severe ME/CFS. If you're ambitious, train as a nurse and set up a home based care support structure and care homes for people with very severe ME/CFS.

 

[Trish]

From Chronic Living Therapy newsletter:

Interview with Bita Nezamdoust - medical sociologist and author of "Contested and neglected: Social and medical marginalization in severe Chronic Fatigue Syndrome"

Interesting to see how she came to be doing this research. Some of the article is OK, but again there are parts I think are misleading or unhelpful:

Another thing I would like to point out is regarding the degrees of severity often ignored in most contexts. One reason I focused on “severe” ME/CFS was to challenge the stereotypical view of chronic fatigue as being “just tired.” While this phrasing is completely unfit to describe any category (mild/moderate/severe), it is most out-of-place in the severe (and very severe) category. I wanted to reflect the brutal reality of the experience with extreme levels of fatigue and cognitive impairment. I hope I have shown that ME/CFS is much more than “tired,” even if it may not look like it at milder categories that are better represented in different media.

Again the focus on fatigue as 'more than tired'. I'm not tired or even fatigued, I'm ill. Again no mention of PEM.

While I am not a therapist, I believe there are important lessons here. First and foremost: validation. Many people with ME/CFS described profound harm caused not by therapy itself. The harm comes from disbelief, minimization, or pressure to “push through” symptoms. Therapists are positioned at a critical junction, either as another site of delegitimation or as one of the few remaining spaces where patients feel seen, validated, and safe.

This research suggests that the therapy professions and related professional bodies have an important responsibility. They need to rebuild trust with a patient community already hurt by vast psychologization. Acknowledging ME/CFS as a serious, disabling condition and rejecting outdated frameworks that frame symptoms as primarily psychological or treatable through willpower, can help rebuild trust with a population that has been repeatedly harmed. Clear guidance that emphasizes harm reduction, pacing, and validation, rather than cure-oriented or normalization goals, would signal respect and accountability.

At the individual level, therapists can support clients with ME/CFS by explicitly affirming the reality and seriousness of the illness. They can clearly recognise that the suffering they describe is not exaggerated, imagined, or primarily psychological in origin. Respecting patients’ lived expertise, especially in a condition marked by misunderstanding of key symptoms like post-exertional malaise, is essential. For many clients, simply hearing that their limits are real, that rest is not failure, and that their worth is not contingent on productivity can be deeply reparative. In this way, therapy can help counter the despair and entrapment that emerge when illness is met with disbelief and false psychologisation.

Once this connection is established, there are many more areas therapists can help clients with ME/CFS:

• the day-to-day mental health challenges of dealing with the illness
• the difficult navigation of the healthcare system and doctor-patient relationships
• severed personal relationships that are inadvertently affected by the social image of the illness
• profound isolation especially in severe cases are some of the examples taken from this study.

Ultimately, therapists may not be able to fix the structural failures surrounding ME/CFS. Such issues as inaccessible healthcare systems, inadequate disability benefits, or misdirected research funding are beyond the control of individual therapists. However, therapists can play a vital role in mitigating additional, unnecessary suffering.

By offering belief, safety, and respect, as well as guidance to navigate life with a contested chronic illness, therapy can become a truly supportive space. This can help lift people with ME/CFS toward a life experience that, even within severe limitations, honors their dignity.

Again, the idea that we need therapy to help overcome the gaslighting and stigmatisation. No. We need medical and practical care. This reminds me yet again of the assumption that people being bullied in the workplace or education need resilience training and therapy support. No. They need bullies to be removed. If ME/CFS were treated like MS, or other chronic disabling illnesses by medical and social support systems, we wouldnn't need all this psychology and sociology.

What do you think you’ll take from this research as you move forward in your career?
Two things stand out most strongly.

The first is the value of community. Seeing closely how people create meaning, care, and resistance even under extreme constraint has been extremely fascinating to me and a huge point of inspiration both in my research work and in my personal life.

The second is the importance of conducting and supporting research that centers lived experience of people with chronic illnesses and disabilities. Works like mine may be small, like one tiny drop in the ocean, but they can still be impactful once situated in the larger body of research and advocacy.

It is my true hope that works like this can shape conversations and add to existing ones, inform policy, and, hopefully, let the affected people know that they are seen.

Disablity inspiration porn and toxic positivity.

Bita Nezamdoust and Erin Ruel, if by chance you have found this thread and read my comments, I hope you will understand where this is coming from. I can appreciate your effort and sincerity, but until you have a real 'at the coal face' knowledge from living with and and/or caring for someone with ME/CFS day after day for years, your work will remain superficial and your conclusions smugly self congratulatory. Enough with the PhD's. Get out there and learn the reality.

 

[Sean]

Given the right adjustments, people with ME/CFS, in all its categories of severity, possess capabilities that could be revived to a reasonable and necessary level of function for an elevated experience of life. As the social model of disability would argue, people with ME/CFS are not disabled solely by their physical symptoms but, in large part, by the failure of social structures to accommodate their diverse levels of functioning and needs (Oliver, 2013)....​

​

With structural support to accommodate severe ME/CFS to fit their energy envelopes without risking PEM, coupled with treatment methods to extend the windows of the “good days”, affected individuals can bloom to their full available potential, and overall have a significantly elevated illness experience.​

Etc.

This is Lala Land stuff. Seriously disconnected from reality.

 

[Jonathan Edwards]

Maybe I'm being too grumpy about this,

Nope. It is infuriating pseudoacademia.

 

[V.R.T.]

Given the right adjustments, people with ME/CFS, in all its categories of severity, possess capabilities that could be revived to a reasonable and necessary level of function for an elevated experience of life. As the social model of disability would argue, people with ME/CFS are not disabled solely by their physical symptoms but, in large part, by the failure of social structures to accommodate their diverse levels of functioning and needs (Oliver, 2013)....​

​

With structural support to accommodate severe ME/CFS to fit their energy envelopes without risking PEM, coupled with treatment methods to extend the windows of the “good days”, affected individuals can bloom to their full available potential, and overall have a significantly elevated illness experience.​

Etc.

This is Lala Land stuff. Seriously disconnected from reality.

Good lord, this is offensive. I definitely do not possess the level of function for an 'elevated experience of life'. This illness is a living nightmare. Maybe you could make that argument for mild pwME - if I'd known and had accomodations made for me perhaps I could have had a good life. But the nature of PEM at higher severities is antithical to the kind of good life they fantasise about us living here.

Any writing about severe MECFS that minimises what a f-king nightmare it is does damage to our cause.

 

[Utsikt]

Given the right adjustments, people with ME/CFS, in all its categories of severity, possess capabilities that could be revived to a reasonable and necessary level of function for an elevated experience of life.

This is delusional.

As the social model of disability would argue, people with ME/CFS are not disabled solely by their physical symptoms but, in large part, by the failure of social structures to accommodate their diverse levels of functioning and needs (Oliver, 2013)....

No amount of accommodation will make my inability to think for a more than a few minutes at a time any less disabling. Or inability to tolerate sounds, temperature changes, being upright, touch, and so on.

With structural support to accommodate severe ME/CFS to fit their energy envelopes without risking PEM, coupled with treatment methods to extend the windows of the “good days”, affected individuals can bloom to their full available potential, and overall have a significantly elevated illness experience.

Stop talking about experiences that you don’t know anything about. It’s patronising, demeaning and inhumane.