My very first impression before looking in any detail was that they were probably encouraging "acceptance" from the perspective that the problem has to be acknowledged first before it can be dealt with (eg using CBT/GET of course). The opposite of acceptance is intolerance or even denial. "Perfectionism" comes in because perfectionists would hypothetically view their CFS as a violation of their high standards and be more likely to become distressed and deny CFS or engage in maladaptive behaviours like boom-bust or over-exertion.
The concept of willingness refers to the recognition that avoidance and control of pain are often not viable. So, fatigue willingness refers to feeling little need to attempt to avoid or control fatigue. Nine items, including statements such as “Keeping my fatigue level under control takes first priority whenever I'm doing something” and “I need to concentrate on getting rid of my fatigue” are scored on a 7-point Likert scale (where 0=‘never true’ and 6=‘always true’) so the higher the score, the higher the lack of acceptance.
Aren't these the same people who believe CFS is perpetuated by the belief that symptoms are unavoidable and uncontrollable? Anyway, from the full-text for the cited CPAQ (
http://www.somasimple.com/pdf_files/acceptance_pain.pdf). Pain willingness = "recognition that avoidance and control are often unworkable methods of adapting to chronic pain". That statement alone is enough to provide clues into the association between willingness and less symptoms. No surprise that people with more severe pain are more likely to want to avoid and control it. The questionnare seems to make no obvious distinction between reasonable avoidance/control vs unreasonable avoidance/control? Also, correlation is not causation. I think Esther12 already mentioned the importance of semantics.
Below is the modified version which uses just the pain willingness subscale and replaces pain with fatigue:
0 = never true; 1 = very rarely true; 2 = seldom true; 3 = sometimes true; 4 = often true; 5 = almost always true; 6 always true.
Q4. I would gladly sacrifice important things in my life to control this FATIGUE better.
Q7. I need to concentrate on getting rid of my FATIGUE.
Q11. My thoughts and feelings about FATIGUE must change before I can take important steps in my life.
Q13. Keeping my FATIGUE level under control takes first priority whenever I’m doing something.
Q14. Before I can make any serious plans, I have to get some control over my FATIGUE.
Q16. I will have better control over my life if I can control my negative thoughts about FATIGUE.
Q17. I avoid putting myself in situations where my FATIGUE might increase.
Q18. My worries and fears about what FATIGUE will do to me are true.
Q20. I have to struggle to do things when I have FATIGUE.
Likert scoring 0,1,2,3,4,5,6 (these are reversed scored compared to the other questions, so higher score = increased lack of acceptance).
Simon already pointed out one of the most obviously irrelevant questions when used as a positive indication for a "lack of acceptance" as the severity increases: Q20 "I have to struggle to do things when I have FATIGUE." Q18 is just as bad, because an accurate estimate of the effects of fatigue is now a sign of a "lack of acceptance"? Q17 means that frequently avoiding post-exertional symptoms is now a sign of lack of acceptance too. The others aren't as bad, although it is difficult to see how a severely affected patient can make serious plans (Q14) without wanting to have a better control over fatigue, and it is understandable why patients would be willing to sacrifice important things (Q4) to reduce severe fatigue.
Simon also made another very good point. In the cited CPAQ paper (
http://www.somasimple.com/pdf_files/acceptance_pain.pdf), the
"'Pain Willingness" factor (the one they borrowed for 'lack of acceptance') only correlated weakly with physical disability (r=0.33) and even less with work status (r=0.24) (see this paper, Table 3). However, it correlated quite strongly with psychosocial factors eg Depression (r=0.5). So the questionnaire they borrowed, which has been used extensively in pain studies, suggests the key link is with psychological rather than functional measures."
The relationship between lack of acceptance and aspects of perfectionism is unsurprising, considering that setting higher standards beyond limitations causes "goal discrepancy". Another possibility is that self-reported physical function scores are affected by the mismatch between what we want to do and what we can do, increasing awareness of limitations.
Although the encouragement of acceptance may be done as part of addressing unhelpful cognitions, it might be more effective for an increased focus on acceptance to be included in therapy. CBT could focus on acceptance of the symptom of fatigue, using attentional strategies to facilitate this. However we are not suggesting acceptance of disability which can be reduced or prevented by behavioural change. It is possible to change functional limitations [42] and recover from the disability associated with CFS [43] and [44]. It may be that by being accepting of symptoms, that acceptance itself could reduce symptoms and disability which may be related to coping strategies — though this would need to be tested empirically.
As many others here have already asked, what exactly are the authors "accepting" here? It seems that the authors are insisting on acceptance of fatigue but not disability. That said, proponents also like to ignore objective data about disability when it conflicts with their hypotheses. CBT for CFS seems to be about focusing less on symptoms, "breaking the association" between activity and symptoms (as if symptoms should not cause disability, and what about post-exertional exacerbtations?), and no longer seeing oneself as a "patient". On the other hand, they are not about hardcore pushing through symptoms either, more about gentle graduated increases to (hypothetically) build up a tolerance.
However, as Snow Leopard succinctly stated:
"Except the only 'functional' change they have ever measured is a change in questionnaire-taking behaviour. They have not measured actual differences in activity patterns and as such, the overall behavioural component is purely hypothetical."
Sparrow stated that
"I think there are pieces of what they are showing here that make sense, but then they've completely missed the mark on their interpretation." That sums up my thoughts on many components of the cognitive behavioural model of CFS. They appear to have a glimpse through their own narrow perception, but do not really understand what is going on, "PEM = deconditioning" and "breaking the association between activity and symptoms" are classic examples.