Experiences and challenges of staying employed with chronic fatigue syndrome, 2025, Surendran et al

[forestglip]

Experiences and challenges of staying employed with chronic fatigue syndrome

Surendran, Gopika; Jose, Tony P.

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Background
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a debilitating condition that affects individuals’ ability to engage in sustained employment. In India, limited research has explored how working professionals with ME/CFS experience and navigate employment. This study aims to explore the lived experiences of employed individuals with ME/CFS in Kerala.

Methods
A qualitative study was conducted using Interpretative Phenomenological Analysis (IPA). Ten working professionals with a diagnosis of ME/CFS were recruited purposively from private hospitals in Kerala. Semi-structured interviews were conducted, and data were analysed through in-depth, iterative coding.

Results
Five key themes were identified: Changing work identity, Difficulty in communicating, Support at the workplace, Work without stability, and Balancing work and health. Participants described a loss of professional confidence, fear of stigma, the emotional burden of disclosure, and limited formal support.

The fluctuating and invisible nature of symptoms challenged their ability to maintain routine work, often requiring major adjustments in career goals and lifestyle. Workplace support varied greatly, with most participants reporting guilt in seeking help and feeling misunderstood.

Conclusions
The study highlights the need for workplace policies that acknowledge the fluctuating nature of ME/CFS, promote open communication, and provide flexible accommodations. Raising awareness among employers and co-workers is essential to reduce stigma and support continued employment for individuals with ME/CFS. These findings hold relevance for occupational health, disability inclusion, and public health policy.

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[Hutan]

It's good to see some analysis if the impact of ME/CFS in India, albeit for a particular subset of Indian workers.

While the introduction relies on some questionable ideas (cytokine storm, exercise as a treatment (although the benefits are noted as being 'only limited and often contested'), there is some nice writing here that might be of use in advocacy

e.g.

In particular, limited atten-tion has been paid to how individuals interpret changes in their occupational identity, make decisions about accommodations, and find meaning or continuity in their working lives. Much of the extant literature on employment and disability focuses on more stable or visible conditions, leaving a gap in understanding the nuanced experiences of those with unpredictable and invisible illnesses [11, 25]. Furthermore, discussions around workplace adjustments tend to emphasize procedural or legal compliance, overlooking the interpersonal and cultural dimensions that shape whether such accommodations are experienced as empowering or marginalizing [26].

This was included under the heading of 'trustworthiness'.

participants were offered the opportunity to share further reflections after the interview, which helped refine interpretative accuracy without undermining the evolving nature of meaning-making.

It doesn't sound though as if the participants had an opportunity to comment on the draft manuscript. I think it would be great if that happened more in these qualitative investigations.



There are some typos and structural errors. I don't think the editor or the peer reviewers have served the authors well (edit - and the title refers to CFS, even though the text uses ME/CFS). But the writing is mostly good and clear.

3.1.5 Missing confidence
Finally, participants spoke of diminished confidence in their abilities. The unpredictabil-ity of symptoms and reduced productivity created self-doubt, making even small tasks feel overwhelming. P3 reflected, “I second-guess everything now.” Similarly, P6 explained, “I used to lead teams. Now I hesitate before sending an email.” This erosion of confi-dence compounded the struggles with identity, leaving them unsure of their professionalworth.

3.3 Theme 3: support at the workplace
Taken together, these subthemes highlight how workplace support for participants with ME/CFS was experienced as inconsistent, person-dependent, and emotionally fraught. While some managers or colleagues offered practical adjustments, the lack of structured support systems meant participants were left negotiating on their own. Even when support was given, it often came with feelings of guilt or ambivalence, showing that support was not a simple buffer but a complex and fragile experience.

3.4 Theme 4: work without stability
Participants described how ME/CFS disrupted their ability to maintain a steady work routine. The unpredictable nature of the condition affected their energy levels, daily planning, and capacity to meet professional expectations. This theme is reflected in four subthemes: energy goes up and down, worry about getting worse, daily changes needed, and can’t follow routine.

3.4.4 Can’t follow routine
Most participants concluded that maintaining a fixed routine was virtually impossible, creating tension with workplace expectations. Structured or fast-paced jobs were par-ticularly difficult to sustain. “My job needs fixed hours. But my body doesn’t follow that” (P7), said one. Similarly, another reflected on the personal identity shift that came with this change: “I used to be someone who planned my week. Now I take it hour by hour”(P10). Losing the ability to follow routine was not only a logistical challenge but also a profound shift in how participants viewed themselves as professionals.

 

[Hutan]

I didn't see any discussion of the financial impact of having to reduce hours or take on less demanding roles. I think that is probably a consequence of the participants selected - for example, someone was able to partly redefine their identity by taking up a hobby of painting and others focussed their attention more on their family, abandoning career ambition. But, also, I think it is possibly an aspect that the researchers could have explored.

Even if the family was not entirely reliant on the person's income, there are major dislocations that come from an abrupt decrease in income. Increased reliance on family for financial wellbeing has emotional and personal safety consequences too.


I think this is a useful contribution. It would be useful for anyone who is supporting newly diagnosed people with ME/CFS in the workforce to read the paper.

 

[Peter T]

Though I recognise some of what is said in the paper from the years I spent fighting to continue working, in some ways I had an accommodating line management, that allowed me to go half time at work. I was lucky I could at the time absorb the financial cost this involved and my work schedule of working three days a week for five weeks and having every sixth week off allowed me with also judicious use of annual leave to regularly have the safety valve of whole weeks of total rest. It was not satisfactory, but for a while was sustainable.

During that period for me the biggest factor was the loss of autonomy. Despite the accommodation of work hours there were significant problems with my management structure, and I was subject to coercion that I could not fight against and could not leave, as I was desperate to keep a semblance of my career. Further I could not fight against misrepresentation of my condition by doctors as I was dependent on them to support me continue working on these terms. Also there was the ongoing fear that if I lost my job I would lose my own home and further my independence and have to return to living with my surviving parent.

In the end I had a major relapse triggered by a severe bout of influenza and had several years bedbound that took away any chance of me continuing working.

Any study on employment and ME/CFS needs to also consider long implications over a number or years or even decades. Since stopping working, the course of my condition has been punctuated attempts to achieve some form of self employment that each time has been shattered by further relapses and despite periods of remission an overall downward trajectory.

[sorry some editing once I had posted. I am good at continuing to edit forgetting I have already posted.)