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

I think they're equating fatigue with anxiety (or other psychological disorders). Since they also equate CFS with fatigue, ACT should be able to cure ME/CFS!

It's unfortunate that Chalder is too much of a moron to help anyone and has settled for torturing ill people instead. Otherwise I'd admire her bloody-minded persistence.

Strange one this - as far as I recall - "non acceptance" is very important whilst one pursues all availible tests and medics in the matter. "Acceptance" is when one realises they know nothing about it (especially the UK). Like any illness it is the sensible choice to research those who actually do know it, research and find treatments. Can't think CBT or GET would have aided, changed my "behaviour", increased my mobility, etc. My Neurologist said "find someone who knows and I will release my test results" - can't see how that ties in with any notion of "acceptance"- no just accept the situation do some exercise it'll make you better.

Their conclusion completely contradicts what I know to be true, what has worked for me to improve my quality of life dramatically, and what I have seen demonstrated in the research of others. 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.

Will being worried about doing the wrong things, perfectionistic about trying to please others in your life, and generally stressed out take a greater toll on someone with ME/CFS? Yes. Will using cognitive therapy to try to lessen unrealistic expectations on oneself help to ease that burden. Absolutely. It can play a positive role with some things, and that is one of them.

But extending this to say that a person shouldn't even try to avoid fatigue and should just do stuff anyway and take the consequences of those actions is a recipe for disaster with this illness. In fact, just about everyone I've talked to who is very severely ill with ME got so ill precisely because they were trying to push through their symptoms too much.

If you have neurological issues very similar to ours because of a concussion, apparently the medical advice is to AVOID THOSE SYMPTOMS LIKE THE PLAGUE, and to back off right away if you're doing something that triggers them. Because the body can't heal under that strain. I am positive that is the same medical advice we should be given. I know how much it has speeded my recovery when I've been able to back off and not trigger symptoms.

Will they come up anyway now and then? Yes. And not beating oneself up about that is helpful. But they are going in completely the wrong direction here. Ugh.

This paper is saying that "acceptance" means accepting that you're going to feel like crap sometimes and not altering your behaviour to try to avoid that. So it's still very much following the (totally inaccurate) pretend you don't have an illness approach.

Like others I'm struggling to understand the point of the paper.

@wdb: . Maybe what they are saying is that we should pay less attention to fatigue (CBT) and accept the fatigue there is (acceptance), and either way get on with our lives regardless of fatigue - which is so much easier said than done. [edit: I see Sparrow beat me to this]

A few other comments - though as I can't access the paper I'm relying on what I've read here:

• What exactly are they measuring? I'm not sure how valid it is to take a questionnaire from one fieldand apply it to another regardless. One pain question is converted into:
  
  Er, yes, that's almost tautologuos, and itself might explain quite a lot of the correlation between 'lack of acceptance' and fatigue/impairement.
• For Pain, 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.
• It's also worth pointing out they have only demonstrated correlation, not causation. I'm sure the authors acknowledge this in the paper. Sure, accceptance and clinical outcomes both improved after CBT but there was no control group. PACE has shown how much untreated patients can improve - maybe their acceptance improved too and CBT itself may have had no effect whatsover on acceptance.

I'm also struggling with what the heck this study is saying. There is an inherent weakness in studies such as this. How do you define acceptance? What is acceptance. While I do think that anything that relaxes a person will help but only temporarily)

I have never liked the word acceptance as to me it implies passitivity.(If that is even a word ). I will never accept some things that happen in life. I will never accept this illness. That being said, I have come to terms with it. Maybe a matter of sematics but I think it's an important distintion.

Barb C.:>)

I'm also struggling with what the heck this study is saying. There is an inherent weakness in studies such as this. How do you define acceptance? What is acceptance. While I do think that anything that relaxes a person will help but only temporarily)

I have never liked the word acceptance as to me it implies passitivity.(If that is even a word ). I will never accept some things that happen in life. I will never accept this illness. That being said, I have come to terms with it. Maybe a matter of sematics but I think it's an important distintion.

Barb C.:>)

Deleted some of the above text as I was repeating what Simon was saying and he said it much better than I did. Edit again. So did Sparrow and others.

I think many of US forget that we were once healthy. In other words we know what healthy is or was. It is important to accept this illness for our own mental wellness, but I choose not to accept the disdain and common ignorance of our medical system ( I.E. non ME CFS Doctors). Trying to be treated by a local & typical GP for ME CFS is liking banging your head against a brick wall. Pain Willingness......WTF!

And "functional" change doesn't lend itself to the "snaphot" of questionnaires as the illness and symptoms wax or wane over time - years. I recall trying to encourage my baffled GP after her diagnosis and treatment of hypothyroidism saying "yes I feel a little better" - of course not all the other well known ME symptoms escalated to bedbound despite her treatment. She is a Doc and recognised her limitations, TC is a psychiatric nurse with answers ? ha ha.

Where did they make this rather important concession? I'd love a proper reference for this one.

A failure to deliver a substantial and sustained economic benefit would be the single most damning fact against the CBT/GET hype-fest, and the hard nosed bean counters and policy wonks of this world will pay close attention to such a fact.

More sciency excuses.

••••••••••

And where is the full raw data for PACE? Time for the world to get a good look at that.

And why does lack of acceptance automatically equate with perfectionism?

It's the little box mentality - about as pathetic as those "behaviourists" who devise them - then build their theories (in their dreams) on top. Having been accused (prostrate in Accident and Emergency) of imagining/faking illness by a psychiatrist one might diagnose the same problem with them - all in your imagination.