Thesis “It’s like a superpower of ‘look how amazing I can do this’, but then you are dead”: [...] exploring ME/CFS and ADHD multimorbidity, 2026, Snell

[forestglip]

“It’s like a superpower of ‘look how amazing I can do this’, but then you are dead”: An interpretative phenomenological approach exploring ME/CFS and ADHD multimorbidity

Gracie Snell

Objective
This study explores the lived experience of individuals diagnosed with multimorbid Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), and Attention-Deficit/Hyperactivity Disorder (ADHD). While multimorbidity is increasingly recognised in healthcare, the specific challenges of overlapping neurodevelopmental and chronic physical conditions remain underexplored.

Using a qualitative approach, this research aims to better understand how individuals from the UK manage these co-occurring conditions.

Method
Seven adults with a medical diagnosis of both ME/CFS and ADHD were recruited through social media platforms. Six females and one male aged between 26-52 participated.

Semi-structured interviews were conducted, with Interpretative Phenomenological Analysis (IPA) used to identify key patterns across narratives.

Results
Six overarching Group Experiential Themes (GETs) emerged: (1) the conflicting nature of the conditions, (2) lack of holistic healthcare, (3) fear of failure, (4) loss of self-control, (5) experiences of burnout, and (6) movement toward condition acceptance. Participants described the difficulty of managing ADHD’s need for stimulation alongside ME/CFS’s demand for rest, leading to cycles of burnout and guilt.

Some questioned whether ME/CFS and ADHD are separate entities; three participants perceived them to be separate conditions, with ME/CFS eventually developing as a result of unmanaged ADHD. Conversely, four participants viewed ME/CFS as a symptom of ADHD. Many also reported long diagnostic journeys marked by gender bias, stigma, and fragmented care.

Conclusion
This research contributes to Health Psychology by drawing attention to healthcare gaps, diagnostic inequities, and the need for more inclusive, neurodiversity-informed models of care.

It also contributes to the development of tailored psychological interventions for individuals with co-occurring ME/CFS and ADHD, a crucial advancement given the current scarcity of such interventions.

Web | DOI | PDF | Thesis: University of the West of England (UWE), Bristol | Open Access

 

[ScoutB]

While I'm interested in any neurological connection between ADHD and ME/CFS, I am pretty skeptical of the idea that ADHD behaviours are a major cause of ME/CFS (or that 'boom and bust' patterns are a useful framing etc.). So I skimmed this thesis with kind of low expectations. But actually it appears to be written by a psych PhD student with ADHD and ME/CFS and says stuff like this:

NICE does not advise pure CBT for ME/CFS and instead advises CBT to be offerred as a supportive therapy. This distinction reflects an important evolution in the clinical understanding of ME/CFS. While CBT is based on the premise that emotional distress and dysfunctional behaviours stem from irrational or unhelpful beliefs (Kuut et al., 2023), ME/CFS is increasingly understood as a multi-system physical illness with biological mechanisms, including immune, neurological, and metabolic dysfunction (Komaroff & Lipkin, 2021). Therefore, applying a primarily psychological model may risk oversimplifying the condition and delegitimizing patients' physical symptoms. Prioritizing CBT can arguably reinforce outdated notions of ME/CFS as psychosomatic, potentially delaying biomedical research and access to appropriate medical care (Vink & Vink-Niese, 2022). While CBT may help some patients manage secondary emotional challenges such as anxiety or depression, its role should be clearly framed as supportive, not curative, within a multi disciplinary treatment approach that respects the physiological nature of the illness.

The interviews with the ME/CFS patients are still a little heavy on the "burnout lead to my ME/CFS" idea for me, but it probably is accurate that lots of pwME feel this way, as we're all searching for causes and things we can control.

 

[V.R.T.]

Therefore, applying a primarily psychological model may risk oversimplifying the condition and delegitimizing patients' physical symptoms.

That understates the risk just a tad.

[Sent from my sickbed]

 

[Evergreen]

A PhD is such an achievement, and even more so if she still has ME/CFS (unclear to me, she mentions a diagnosis "at a young age"). Looking at people with both ADHD and ME/CFS is a really interesting topic. So well done to Snell.

I'm not able to read the whole thing. From a skim of where the term "CBT" appears, it looks like Snell has missed one of the major differences between CBT for ME/CFS pre-2021 and the supportive CBT now recommended - the first targeted increased activity, the second does not encourage pwME to increase activity. I'd like health psychologists working with ME/CFS to be very clear on that.

From the PACE trial's CBT therapist manual:

The manual has the following components: Initial stabilisation of activity and rest, establishing a regular sleep pattern and then graded increases or changes in activity to work towards planned goals. CBT also actively addresses the participant’s understanding of their illness which may involve challenging unhelpful beliefs, e.g., about symptoms or activity that may be preventing recovery.

It's a shame, particularly since it is clear from interviewees that one of their struggles is that ME/CFS took away one of their ways of managing their ADHD symptoms - exercise. Snell acknowledges this:

Findings further implied that the fatigue and reduced cognitive capacity in ME/CFS lowers an individual’s ability to use compensatory strategies that previously masked ADHD traits. Adding to this, Ceroni et al. (2022) emphasise how impairments with executive functioning (EF) in ADHD are often managed through implementing aplanned and consistent approach to daily activities/tasks, as well as regular exercise topromote well-being. However, with ME/CFS, the physical and cognitive exhaustion often strips away these management strategies. For example, people with ME/CFS often describe having a limited and inconsistent ‘energy envelope’ (O’Connor et al.,2019); their available energy can fluctuate greatly from day to day, making structured routines feel unreliable or unsustainable. In terms of regular exercise, not only is Graded Exercise Therapy (GET) now discouraged for ME/CFS (NICE, 2021), researchreports that those with ME/CFS display impaired aerobic metabolism when exercising, meaning individuals may switch to inefficient energy production too early, increasing fatigue and lactic acid buildup (Tomas et al, 2018). Absence of these strategies therefore reveal previously hidden ADHD symptoms.