All eight participants spoke about symptom exacerbation and at least six appeared markedly anxious about symptoms worsening. For these participants, not deteriorating and protecting against deterioration appeared essential, with individuals describing a constant state of vigilance. Participants appeared to be in a vulnerable position, as symptoms were reported to be easily exacerbated by physical and mental activity. Individuals described experiencing significant limitations as a result of their symptoms, constraints which affected their social lives, relationships and employment.
Participants’ MBIs, as activities which included physical and emotional activity, were not exempt from heightening or inducing symptoms. Irv described his symptoms being made worse simply by travelling to his MBI. He reported that he “wasn’t up to” travelling by bus as he anticipated this would induce fatigue and days of bed rest. In particular, Irv noted the amount of time spent on the bus, the noise, and possibly being required to chat to his fellow passengers as possible triggers for symptoms. In order to attend, and in the absence of owning a car, Irv was forced to over-exert himself by riding his motorcycle. This resulted in him being “wasted” when he arrived:
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“Getting there would have been three buses, which I wasn’t up to. I didn’t have a car. I still had my bike so I was going on my bike, but I wasn't really well enough to ride my bike, so when I got there I was wasted.” (Irv: 715-722)
Arriving to the course “wasted” meant Irv reached the venue feeling exhausted and with impaired concentration. To recuperate enough to engage in the session, Irv developed the following strategy:
“I’d go a bit early, maybe 20 minutes, and just lie on a mat”. (Irv: 728-730)
Irv talked about being very aware of the possible detriment the sessions could have upon his health. The potential for his symptoms to worsen appeared to cause him much anxiety. He described a vivid fantasy of being ill after sessions and strongly desiring this not to occur:
“It would be [] straight back in, everything off, maybe a bath and then straight into bed, or just collapse on the bed, erm and that would cause me a lot of anxiety, cos I don’t want to be ill, I want to try and stay away from ill [] that was my anxiety [] that I had a price to pay for this.” (Irv: 938-949)
As we can see, Irv described being extremely anxious as a result of considering how his symptoms might be worsened by the MBI sessions. Harriet’s account was somewhat similar. She spoke about going to great lengths minimise her activity around the course, with the aim of reducing its impact on her symptoms:
“When you’re trying to pace and everything you’re aware that Tuesday afternoon is that course, and that has a big impact on what you’re doing on the, you know, what you do on the Monday. Sort of psyching yourself up to it and making sure you’re well-rested and everything. And then just nothing
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on the Tuesday before you go, having nothing on in the evening and hopefully not having anything on the Wednesday.” (Harriet: 1635-1652)
As well as giving a clear account of physical preparation, Harriet alludes to metal preparation, a process of “psyching [herself] up” to the sessions. In my opinion, Harriet’s dramatic reduction of activity and this process of “psyching” indicates an underlying anxiety. It speaks to me of fear and a powerful commitment to health. Indeed, elsewhere Harriet described refusing possible social engagements and potentially postponing doctors’ appointments in lieu of the course. Rather than two- hour appointments, each mindfulness session became a three-day cautionary period.
We can understand why such caution was imperative to Harriet when contemplating the considerable impairment that pushing herself past her limits afforded:
“I do get a really bad headache [] you do think I just can’t wait to get home, and sometimes you can’t even make a cup of tea. You just have to get straight into bed. So there’s the sort of immediate aftermath of it that you’re so tired, and then [] it often is a residue that goes on to the next day or longer than that.” (Harriet: 1763-1780)
Harriet’s heightened symptoms prevented her from completing even small tasks, such as making a cup of tea on returning home. Rather, she required immediate bed rest. We see that, as we know to be normal for many with ME/CFS, Harriet took longer than others might to recover from the activity, resulting in a prolonged period of limitation, a “residue”. As well as affording us insight into the aftermath of the sessions, Harriet’s interview painted a picture of the detrimental impact of sessions on symptoms in-situ. It seemed Harriet’s symptoms were at a manageable level
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when she arrived, but would become heightened and overwhelming during the length of the session:
“Two hours I can feel I'm absolutely wilting … you’re just not concentrating anymore and you just, sometimes I’m actually literally falling asleep, erm you know, holding a pen.” (Harriet: 684-698)
It appears clear that it is the session, the “two hours”, which induced this “wilting”. This suggests that after a certain point, sessions became more of a hindrance than a help to Harriet. She could not concentrate on the material and as evident in her extracts above, experienced a reduced level of functioning for days afterwards.
Whereas Irv and Harriet worried about the impact the course might have but attended anyway, Lucy made a different decision:
“I signed up for courses with them before and I ended up cancelling cos I just thought ‘I can’t make it’.” (Lucy: 304-307)
Lucy’s fear of travelling and the impairment she anticipated the journey to cause meant she avoided attending altogether. It seemed the image of not making it over- rode her desire to attend. To her it was essential to ensure that what was feared to happen did not occur. Lucy later accessed the course when it became available in her area.
As well as attendance, Lucy gave insight into what else might induce her symptoms and of what she wished to avoid. She spoke about her concerns around digestive symptoms:
“There was also a bit on mindful eating [in the course]. [] I was a bit kind of against that because I’d normally, like, take
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digestive enzymes and stuff, and I just thought ‘oh no’.” (Lucy: 1327-1334)
Elsewhere, Lucy explained that she took these enzymes to avoid swelling and pain in her digestive system. The words “oh no” give insight into the depth of Lucy’s dread, as if she was panicking about the exercise. The potency of Lucy’s fear can be deduced from the position she speaks from as, even in our interview conducted years after the event, she connects herself with the feeling at the time – “oh no”. It seems Lucy’s fear led her to shut down. She described herself as “against” the eating practice, suggesting she had closed herself to the idea, erecting a protective barrier.
As well as worrying, reducing activity, and avoiding attending, participants’ vigilance towards preventing symptom exacerbation seemed to manifest in a constant state of assessment. The following extract from Daniel’s interview embodies what was present in many participants’ accounts. In particular participants spoke about assessing the length of sessions, breaks, mixing activities, the energy involved in activities, and subsequently related this to symptom exacerbation or manageability. Daniel said:
“I can’t remember how many hours it was now but I know I found it okay at the time. But a lot of that was because we had breaks [] and er also you did a lot of lying down, body scans and that, so it was, yeah, it wasn't too difficult.” (Daniel: 559-577)
We can see that having ME/CFS automatically placed participants in a position perhaps more vulnerable than if they did not have the condition. As a result of this vulnerability and the significant impairment their conditions afforded, the importance of preserving functioning and thus engaging in a process of symptom management appeared heightened.
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This story is not one particular to symptom management in and around MBI sessions per se. Many participants’ accounts were peppered with the imperative of such management in terms of the course as a whole. Improving one’s symptoms and situations appeared essential and again it was as if participants had developed vigilance toward this. For Harriet, Lucy and Caroline, attending the course appeared to be a strategy employed in the hope that symptoms would improve. As Harriet said:
“I should be more realistic, but you really hope that each time it’s going to be the one thing that gives you loads of energy and helps you hugely.” (Harriet: 113-119)
Against her better judgement, Harriet hoped that the course would grant her the energy and change she longed for. She spoke about completing all the home practice and ‘homework’, despite believing that she had tried all the techniques before, to no avail.
Participants appeared to frequently assess whether things were ‘working’. As Lucy said:
“I almost didn’t go cos I thought this isn’t really going to help”. (Lucy: 184-186)
In Lucy’s mind, it seems the only point of attending the course was for it to help her ME/CFS. Caroline’s account was the same:
“I probably would have dropped out if I hadn’t have got any information on mindfulness or relaxation, or I hadn’t got the yoga background [] I’d have dropped out because I’d have just said that this was a complete waste of time, and I would have just dismissed mindfulness altogether.” (Caroline: 630- 638)
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Caroline’s previous experience gave her insight into what she understood the intervention to be aiming towards, without which she said she would have “dismissed mindfulness altogether”. There is certainly the sense that mindfulness was expected to do something, to work in some way.
We can see that ME/CFS was the lens through which participants continually viewed the courses and material. This also seems true of how participants’ perceived themselves. Evident within individuals’ accounts appeared a palpable fear of being judged based on their illness. This is explored in the next sub-theme.