Table 1 Quotes about the CBT

Expectations of patients

1.

‘There are not so many people with Post Polio, so you want to help the scientific research’

R30 p

2.

‘I already handle it quite well, I’m slightly satisfied, but I hope to become more balanced. I hope I’ll learn to fully accept the choices I make’

R25 p

3.

‘I don’t know what to expect, what can it possibly add? I don’t think you’ll improve your functioning by talking about it. I don’t have high expectations anyway…’

R26 p

4.

‘You could talk about it for hours, but that wouldn’t change a thing.’

R21 a

5.

‘[I hope] I’ll be able to accept it. That I can accept that I have this disease and that I have to keep adjusting. I find that very difficult’

R27 p

Experiences of patients

6.

‘I try to listen to my body. But I don’t feel any less tired or less pain’

R30 a

7.

‘I kept on going until I was so tired that I had to go to bed. But [the therapist] said “try to stay awake”. And that goes well. At the beginning it was very difficult I must say, I was exhausted. But in the end I figured out how to do it’

R30 a

8.

‘At a certain point I walked around the pond every day’

R27 a

9.

‘We started training; 20 minutes and then a short break. That was very difficult. I bought a kitchen timer, because when I start with something, I want to finish it. But with the kitchen timer it worked out quite well and it suits me well. As does the fact that I don’t sleep during the day anymore’

R27 a

10.

‘It felt like, and this might sound over the top, but it felt like a revelation. It taught me how to handle things. That’s really what it was’

R27 a

11.

‘I feel it every day, every time that I walk I think “no, I don’t have to change myself”. I always felt I had to stand up straight when I was in company, but now I thing ‘no, I don’t have to stand up straight’

R25 a

12.

‘It’s allright that I sometimes feel angry or sad. I used become angry when I got stuck with something, and then I felt angry because I felt angry. [The therapist] really helped me with that’

R30 a

13.

‘[The therapist] was a sort of mirror for me and showed me that I was no less than anyone else. I even started wearing skirts again, despite my special shoes’

R27 a

14.

‘Of course I’ve talked to therapists before, and every time I thought “yes, this is it!” but that feeling always faded again after three months. But this time that feeling lasts so far’

R30 a

Expectations of therapists

15.

‘I didn’t expect patients to ‘heal’ from their tiredness, because that is impossible, that is part of life. But I hoped that we would be able to teach people how to avoid the real peaks of exhaustion’

R43 p

16.

‘It is already an improvement for the fatigue if people realize they can do more than they expected’

R46 p

Experiences of therapists

17.

‘I had one patient who had a beautiful score at the end of the therapy. This woman with post-polio mainly worked on meaning of life questions’

R46 a

18.

‘[The patients] scored better than they expected. (…) One patient really improved during the therapy. He said to me at the end “I’m not sure this has improved my fatigue, but I’m very glad about that I’m doing more during the day’

R43 a

19.

‘That patient had a really high score on the fatigue questionnaire, but these scores are very subjective of course. She explained that that she was very tired in the evening but at the same time it was no issue at all for her that she had to lay down and watch telly’

R42 a

20.

‘I don’t want a treatment, I don’t need a treatment. If I would want a treatment, I would have arranged it myself. It [the fatigue] is no problem. What I can and cannot do, well too bad, but that’s just the way it is. I don’t worry about it and I figure out a way to handle it myself. I don’t have a problem so why would I need a treatment.

R52 p

21.

‘At the beginning it was very difficult for me that patients said that the took part in the trial because they wanted to help the research. That is not a guiding question I can work with!’

R42 a

22.

‘I sometimes used the protocol a bit as a guide line (…). For example with the graded activity. It is not always helpful to focus too much on increasing activity, because some that would burden people too much’

R43 a

23.

‘Once they started, they worked really hard’

R43 a

24.

‘I wasn’t familiar with this population, which made me a bit insecure at the beginning: what kind of limitations do they experience? If you want to help people you really need to be able to speak the language of the illness and know the disease. I’ve learned that for other diseases over the years, but not for this one. I had my doubts about that. But that is of course always the case if you start working with a new group of patients’

R46 p

25.

‘To me [the fact that we did not offer a combined therapy with ET and CBT] it feels a bit like a missed opportunity. Just CBT is sometimes not enough, especially not in rehabilitation medicine. You don’t just want to tell people that they can do it, you want to show them and let them experience that. And also the other way around; when people start training, it often triggers a much bigger process, I call that the awareness’

R43 a