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.

 

[DHagen]

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:

I really appreciate that Snell calls out both the loss of exercise as a coping strategy (which I certainly feel) but also the fact that reduced cognitive capacity has the same effect - cruelly, the desperate need for stimulation doesn't disappear with the loss of the ability to process that stimulation.

 

[Sean]

the desperate need for stimulation doesn't disappear with the loss of the ability to process that stimulation.

Very important issue, and one of the most difficult for patients to deal with.

 

[Trish]

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.

Sadly that's not what the current BACME guide for therapists says. It still involves goal setting and increased activity, modified to more flexible pacing up instead of GET with fixed increments. They pay lip service to being NICE compliant, but don't really get it about supportive CBT. If it is to be truly helpful for pwME, CBT needs to focus on helping people to feel OK about cutting back activity, rest more and to be able to tell people no when they are expected to be active.

I agree it's vital, if health psychologists are to be helpful for pwME, they need to truly understand the difference between supportive and directive CBT. And further that the support needs to focus on helping people do less, not more.

 

[Evergreen]

Sadly that's not what the current BACME guide for therapists says. It still involves goal setting and increased activity, modified to more flexible pacing up instead of GET with fixed increments. They pay lip service to being NICE compliant, but don't really get it about supportive CBT. If it is to be truly helpful for pwME, CBT needs to focus on helping people to feel OK about cutting back activity, rest more and to be able to tell people no when they are expected to be active.

I agree it's vital, if health psychologists are to be helpful for pwME, they need to truly understand the difference between supportive and directive CBT. And further that the support needs to focus on helping people do less, not more.

In fairness, the NICE guideline is not clear about this either. What Snell writes about CBT is consistent with what the NICE guideline says in the section on CBT.

The NICE guideline also talks about goals in the CBT section:

involves working closely with their therapist to establish strategies to work towards goals and priorities that they have chosen themselves

This part (also NICE guideline) could refer to either increasing or decreasing activity:

working together to adapt and refine self-management strategies to improve the person's functioning and quality of life, for example their sleep, activity and rest

The BACME therapy guide refers to two sections of the NICE guideline:

If the person has achieved a level of stability, consider with them the pros and cons ofa re-introduction of a valued activity. Consider a small, slow exploratory increase in one aspect of physical, cognitive or social activities – reinforcing flexibility as needed and periods of stability between increases (refer to the sections of NICE Guideline(2021) relating to increasing activity: 1.11.2 and 1.11.13).

1.11.2 is on energy management and the bit on increasing activity is:

uses a flexible, tailored approach so that activity is never automatically increased but is maintained or adjusted (upwards after a period of stability or downwards when symptoms are worse)

1.11.13 is from the "Incorporating physical activity and exercise" section:

1.11.12 If a physical activity or exercise programme is offered, it should be overseen by a physiotherapist in an ME/CFS specialist team.
1.11.13 If a person with ME/CFS takes up the offer of a personalised physical activity or exercise programme, agree a programme with them that involves the following and review it regularly:
• establishing their physical activity baseline at a level that does not worsen their symptoms
• initially reducing physical activity to be below their baseline level
• maintaining this successfully for a period of time before attempting to increase it
• making flexible adjustments to their physical activity (up or down as needed) to help them gradually improve their physical abilities while staying within their energy limits
• recognising a flare-up or relapse early and outlining how to manage it.

I think the difficulty is that some people, at some times, can increase their activity level, because they're improving. The NICE guideline kind of had to cater for that scenario as well as the others. But it means that the message hasn't gotten through to therapists not to use activity increases as a means of achieving improvement.

To get back to Snell's work, she does not advocate increasing activity anywhere in her PhD. And any therapists who read it would be clear that people with ME/CFS have particular difficulty with exercise. I don't think they'd be clear that encouraging an increase in activity outside of exercise could be problematic, but that did not come up in Snell's work so she doesn't have to discuss it.

 

[tornandfrayed]

It's unfortunate and confusing that this paper refers to Group Experiential Themes. So two meanings for GET.

 

[Trish]

To get back to Snell's work, she does not advocate increasing activity anywhere in her PhD. And any therapists who read it would be clear that people with ME/CFS have particular difficulty with exercise. I don't think they'd be clear that encouraging an increase in activity outside of exercise could be problematic, but that did not come up in Snell's work so she doesn't have to discuss it.

I haven't read the PhD. I am very concerned if a health psychologist doesn't say clearly that exercise refers, in the case of ME/CFS, to all physical and cognitive exertion. It's not just going for a walk or to the gym. I think BACME particularly try to get around the problem of not recommending exercise by talking coyly about goals the person chooses themselves. Sitting knitting is exertion, turning over in bed is exertion, talking on the phone is exertion. I know you know all this. I'm just concerned psychologists and other therapists don't get it.

And you're right that NICE does include what I regard as unhelpful advice about goals and exercise programs. As you quoted, that always has to be within the person's PEM limit, not trying to stretch it to aim for improvement, as BACME suggests. BACME seem to completely ignore the bit you quote that tells people to cut back below their baseline before trying any increases, and even then to stay within their limits.

 

[Evergreen]

I haven't read the PhD. I am very concerned if a health psychologist doesn't say clearly that exercise refers, in the case of ME/CFS, to all physical and cognitive exertion....

And you're right that NICE does include what I regard as unhelpful advice about goals and exercise programs. As you quoted, that always has to be within the person's PEM limit, not trying to stretch it to aim for improvement, as BACME suggests. BACME seem to completely ignore the bit you quote that tells people to cut back below their baseline before trying any increases, and even then to stay within their limits.

I'm not able to read every word, I have just skimmed it and also searched for certain words. I don't think "exercise" refers to all physical and cognitive exertion. But all physical and cognitive activities, including exercise, count as exertion.

In the bit I quoted in post #4 above, she very clearly acknowledges both physical and cognitive problems in ME/CFS. And elsewhere she talks about PEM "following physical and/or cognitive exertion".

She's not writing a guide for clinicians, she's reporting what her interviewees said, and then there's some discussion. In another part, she reports how four participants saw their ME/CFS as "an extension or symptom of their ADHD" while three participants saw it as a separate condition. She's not there to judge whether one or the other is right or wrong.

Yeah, BACME is still going for gold. My guess is they would say that they already do this. But the NICE bit about reducing physical activity below what the person can do without worsening symptoms and staying at that reduced level for a while is not necessarily helpful, in my view. My GET started at a level that was below what I was able for at the time. All that does is avoid a big negative reaction at the beginning. But it could also make something look like it's being tolerated and is safe, when it is not. And that it constitutes improved physical function, when it does not.

I remember listening to Crawley on the radio, saying how people don't realise that graded exercise therapy involves reducing exercise. Didn't make GET in her studies effective.

I think if someone is doing and tolerating some physical activity they don't value (e.g. housework) and would prefer to do something they do value (e.g. yoga), and they've tried and failed to do yoga, then yeah, if they've got the money to pay someone to do the housework and then see if they can start some yoga, great. Or they're walking their kids to school but they could drive them instead and see if they can start some yoga that they used to love.

But otherwise, I think people might be better off knowing from the outset whether they can tolerate an increase or not. If they can't, then look at if there are some activities that can be reduced that might free up some capacity for activities that are more valued. But everyone is then clear that what has happened is a rejigging of activity, not a global increase in activity.

 

[Evergreen]

My GET started at a level that was below what I was able for at the time.

A bit more on that - I was told to stop the 1-2 walks I was able to do per week, for 20-45 mins each, when starting GET. And then GET was not successful. I deteriorated. So I lost those valued walks. Might I have lost them anyway? Yep, maybe. But maybe not. Or maybe I could have enjoyed them for longer before having to stop.

 

[Hoopoe]

My experience with milder stimulants like carnitine, tea, coffee is that they work for increasing activity and motivation in the short term, but that the underlying difficulty tolerating activity doesn't improve. I end up excited and exhausted at the same time, with worse sleep and difficulty stopping and getting the rest I need. I tend to discontinue these stimulants after some time because it feels like I'm edging closer and closer to a deeper dysfunction. The overall result doesn't seem clearly better than doing nothing.

I haven't tried the stronger stimulants like Ritalin but it seems to me that unless the underlying difficulty tolerating exertion is treated, there isn't much point in improving the strength of the stimulant.

 

[rvallee]

Sadly that's not what the current BACME guide for therapists says. It still involves goal setting and increased activity, modified to more flexible pacing up instead of GET with fixed increments. They pay lip service to being NICE compliant, but don't really get it about supportive CBT. If it is to be truly helpful for pwME, CBT needs to focus on helping people to feel OK about cutting back activity, rest more and to be able to tell people no when they are expected to be active.

I agree it's vital, if health psychologists are to be helpful for pwME, they need to truly understand the difference between supportive and directive CBT. And further that the support needs to focus on helping people do less, not more.

I don't really see the point of even accepting the framing that this is about CBT. CBT is irrelevant here. It's the bottle. What's in the bottle is what matters. If the bottle can hold its total opposite, the bottle itself is entirely irrelevant. There's nothing special about CBT, it's just some random fad that will eventually be completely forgotten.

This all feels completely stuck in the pre-science age. Nothing matters. Words have no meaning. Outcomes and evidence even less so and everything is made up.

 

[Trish]

I agree with all of you. The whole concept of baselines is nonsense anyway, since they are unknown and shifting. Substituting one activity you want to do instead of one you don't like doing is a nice idea in theory, but complete fantasy for those of us on the edge of coping just with what we need to do.

 

[Evergreen]

Exactly. I don't think the major need in ME/CFS is among those who are improving or those who are able to rejig things to do more of what they enjoy. I think most of us would cope with those scenarios just fine all by ourselves.