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[Chalder CBT] The role of acceptance in chronic fatigue syndrome

Enid

Senior Member
Messages
3,309
Location
UK
Shimmy and dance, prepared for pain - they must be on another planet groping around to find something to make themselves relevant in the real medical world. How one feels (and the pain) - yes at times almost unbearable but my "behaviour" of no consequence. What a diversionary side show these people put up.

It's been in the UK a psychiatric (and luvies) monopoly until now.
 

Simon

Senior Member
Messages
3,789
Location
Monmouth, UK
This is definitely a case where substituting 'fatigue' for 'pain' can be totally misleading. Fatigue can literally stop you from doing something, whereas pain in itself simply makes it uncomfortable (extremely uncomfortable in some cases).
I'm not sure it's quite so simple with pain, after all the body has two main systems to stop us doing whatever we are doing: one is fatigue, but the other is pain. Certainly I couldn't have watched a film or gone for a run with a blinding headache.When my pain was very bad I met people through chronic pain groups and being forced to stop activities was exactly the problem they faced with pain, regardless of fatigue, though that was often a problem too. In fact, I was struck with the similarites between our illness and chronic pain: post-exertional malaise, fatigue, the need for pacing, and sadly relapses too - not to mention some strong biopsychosocial views from those who don't have chronic pain but think they have the answers.

But I do agree that it isn't reasonable to merely substiture 'fatigue' or 'pain'.
 

Enid

Senior Member
Messages
3,309
Location
UK
Biopsychosocial ??? - what 4 Docs around me well know this mumbo jumbo. A bit more "BIO" (now revealed) best to follow to aid. All symptoms belong in a singular illness which at last is being unravelled. Fatigue is the result of illness (like any other illness too).
 
Messages
13,774
I'm sure lots of people would think that 'fatigue' cannot stop one from doing something: "It's just being tired - you can always push through that."

That questionnaire is pretty funny, for either pain or fatigue imo, especially when thinking about the more severe types.


1. _____I am getting on with the business of living no matter what my level of pain is.
2. _____My life is going well, even though I have chronic pain.
3. _____It’s OK to experience pain.
4. _____I would gladly sacrifice important things in my life to control this pain better.
5. _____It’s not necessary for me to control my pain in order to handle my life well.
6. _____Although things have changed, I am living a normal life despite my chronic pain.
7. _____I need to concentrate on getting rid of my pain.
8. _____There are many activities I do when I feel pain.
9. _____I lead a full life even though I have chronic pain.
10. _____Controlling pain is less important than any other goals in my life.
11. _____My thoughts and feelings about pain must change before I can take important steps in my life.
12. _____Despite the pain, I am now sticking to a certain course in my life.
13. _____Keeping my pain level under control takes first priority whenever I’m doing something.
14. _____Before I can make any serious plans, I have to get some control over my pain.
15. _____When my pain increases, I can still take care of my responsibilities.
16. _____I will have better control over my life if I can control my negative thoughts about pain.
17. _____I avoid putting myself in situations where my pain might increase.
18. _____My worries and fears about what pain will do to me are true.
19. _____It’s a relief to realize that I don’t have to change my pain to get on with my life.
20. _____I have to struggle to do things when I have pain.


Scoring: Chronic pain acceptance questionnaire
Activities engagement: Sum items 1, 2, 3, 5, 6, 8, 9, 10, 12, 15, 19
Pain willingness: Reverse score items 4, 7, 11, 13, 14, 16, 18, 18, 20 and sum
Total: activity engagement + pain willingness


Directions: Below you will find a list of statements. Please rate the truth of each statement as it applies to you. Use the following rating scale to make your choices. For instance, if you believe a statement is ‘Always True,’ you would write a 6 in the blank next to that statement.

Never True: 0 Very rarely true: 1 Seldom true: 2 Sometimes true: 3 Often true: 4 Almost always true: 5 Always true: 6



So much depends upon semantics too..

What are the responsibilities in 15? 10's 'any other goals'? 4's important things? 20's 'struggle'? Surely there's a meaning of 'struggle' which would apply to everyone trying to get something done while they were in pain? Or suffering from fatigue?

I'm having trouble accepting some of this questionnaire stuff. It seems pretty intolerable to me. I would gladly sacrifice important things in my life to stop researchers acting as if these questionnaires can be relied upon.

edit: I should mention that, in this paper Chalder did raise the possibility of things like social desirability bias (a problem strangely omitted from the PACE paper), and that I am now talking more generally of the way in which some researchers seem to make unfounded assumptions about the value of these sorts of questionnaires. I've forgotten most of the specifics of this Chalder paper now, despite having only read it a couple of days ago!
 

Enid

Senior Member
Messages
3,309
Location
UK
Esther - I cannot repeat enough (and everything I've said before) - if these ignorant people (blow semantics they are very clever with) - Myalgic Encephalomyelitis is the illnesss about which we who follow research findings know more despite the United Kingdom psychiatric monopoly and twaddle.

This lot have held up real medicine - ignored and tried to hide international medical findings.
 
Messages
13,774
My questionnaire would only be helpful for the more self-aware quacks.

1. _____I am getting on with the business of living no matter what my level of quackery is.
2. _____My life is going well, even though I am a quack.
3. _____It’s OK to be a quack.
4. _____I would gladly sacrifice important things in my life to be less of a quack.
5. _____It’s not necessary for me to control my quackery in order to handle my life well.
6. _____Although things have changed, I am living a normal life despite my chronic quackery.
7. _____I need to concentrate on getting rid of my quackery.
8. _____There are many activities I do when I feel quacky.
9. _____I lead a full life even though I am a quack.
10. _____Controlling quackery is less important than any other goals in my life.
11. _____My thoughts and feelings about my quackery must change before I can take important steps in my life.
12. _____Despite my quackery, I am now sticking to a certain course in my life.
13. _____Keeping my quackery level under control takes first priority whenever I’m doing something.
14. _____Before I can make any serious plans, I have to get some control over my quackery.
15. _____When my quackery increases, I can still take care of my responsibilities.
16. _____I will have better control over my life if I can control my negative thoughts about quackery.
17. _____I avoid putting myself in situations where my quackery might increase.
18. _____My worries and fears about what my quackery will lead to are true.
19. _____It’s a relief to realize that I don’t have to change my quackery to get on with my life.
20. _____I have to struggle to do things when being a quack.
 

Don Quichotte

Don Quichotte
Messages
97
I may not be smart enough to understand why this study was published, but the way I understand it:

This study is both trivial (obviously, someone who finds it hard to accept his/her illness or anything in their life for that matter is less content with his/her life and less motivated to find ways to function in the optimal way)

And makes no sense- How can someone have less of something, by accepting that he/she has that something?

There used to be a journal called-the journal of irreproducible results. They published scientific papers (with p values and everything required) that proved for instance eating cucumbers is eventually lethal (evidently everyone that ate cucumbers 100 years ago is dead).

It was quite sad when they stopped publishing this journal. But, seems like the J. Psychosomatic research is efficiently filling in this gap...

Just found out that JIR is being published again
http://www.jir.com/history.html
So, this will be a tough competition .
 

Enid

Senior Member
Messages
3,309
Location
UK
Very smart Don Quichotte - I couldn't put recall and two words/ recall together 9 years ago - yet always knew absolutely nothinhg to do with the pathetics of these psychiatrists - the all in your imagination, personality modelling and all the rest of their mumbo jumbo - all in their imagination one might say.
 

biophile

Places I'd rather be.
Messages
8,977
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.
 

Calathea

Senior Member
Messages
1,261
So by "acceptance" they mean "denial"?

The main thing that strikes me about that questionnaire is that they are fruitful questions for discussion, but they are not questions which can be answered with a yes or a no. And as everyone else has pointed out, as a questionnaire it's set up under the assumption that ignoring symptoms is always the healthiest approach. This is nonsense. The problem is how to find a good balance between paying attention to symptoms and not worrying about them. Plenty of people with ME worry too much about symptoms, everyone does it from time to time, and I do think that spending too long on this forum can lead to this as well. But then, people with ME are also prone to ignoring symptoms when this is actually a bad idea, trying to push through or not even realising that something is a problem. As I said, balance.
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
In my experience I ignore symptoms a lot more than I worry about them. In my case I was a perfectionist, and this meant I kept pushing too hard - it took me a long time to learn to pace. My health has been a lot more stable since I recognized key symptoms (in all their forms) and used them to guide my pacing.
 

Sean

Senior Member
Messages
7,378
Aren't these the same people who believe CFS is perpetuated by the belief that symptoms are unavoidable and uncontrollable?
Exactly my question. Seems a very slippery blame game with words they are playing here. (And not for the first time.)

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."
This is all they have achieved, as far as I can see. A modest shift in scores on superficial, methodologically problematic, subjective self-report questionnaires, independent of more reliable, realistic, objective measures of possible therapeutic benefit.

And it is pretty unimpressive.
 

ukxmrv

Senior Member
Messages
4,413
Location
London
The "physical symptoms" and the "worry about the symptoms" are two separate things.



I don't "worry" about my symptoms intruding in my life but they still do.



One can "worry" less about symptoms but it doesn't stop the actual disability, loss of mobility, pain, PEM, obvious sore throats and swollen glands, repeated viral infections, sinus infections, vomiting, diarrhoea, falls, POTS, etc from occurring. This has a huge impact on my life.



The questionnaire is trying to trick patients into confusing their emotions about their physical symptoms with the physical symptoms themselves.



As I said, by nature or luck I don't worry about my symptoms, but that doesn't make any difference to them actually happening or not.



There will be some patients that this is not so clear cut but it would be to our detriment to concentrate on these people because these authors are talking about all of us.
 

barbc56

Senior Member
Messages
3,657
Just looked at this thread quickly, but is there a chart or something that tells you what range people fall in. Hope this makes sense.
Barb
 
Messages
13,774
Just looked at this thread quickly, but is there a chart or something that tells you what range people fall in. Hope this makes sense.
Barb

Do you mean the distribution of results one would get from an adult population? Or those with problems with chronic pain?

I couldn't see anything like that I'm afraid, and this isn't a topic I previously knew anything about.