Hi everybody! This has led to a useful discussion, I think. Thanks to
@Jonathan Edwards for the thoughtful response. The good news is that we agree on what matters; we only differ on just how useful we find the cardigan metaphor.
I should explain that I get the joke! I don’t post much anywhere, because my ME skewers my cognition in a way that scuppers that. If I want to write a letter to the Lancet once a year, I have to not post much and sometimes at all. But I read a lot on S4ME and used to on PR, and was, I believe, possibly even present at the birth of the cardigan metaphor on PR. You just couldn’t see me.
I totally agree that clothing ends up mirroring the power (im-)balance in hospitals. And that imbalance is gendered, as you said, because historically most doctors have been male, and most of those considered lower-ranking, like nurses, have been female. So the clothing ends up being gendered too.
If I understand you correctly, for you, cardigan came to be a symbol for anyone in a more caring or therapeutic role, and those people were lower-ranking than docs. I get that.
Here’s where I think we agree:
I am suggesting that the cardigan as symbol of role playing, of charade playing, is at the heart of the problem. The results of PACE are literally the results of this charade playing and the cardigan role seems to me to be pretty much what gets the results.
If I understand what you’re saying here, it’s that the increases in Chalder Fatigue scores and SF-36 Physical Function scores reported in PACE and similar trials are likely due to the effect of the therapeutic relationship on the patients’ self-reporting rather than the effect of the therapy on the patients’ ME. I agree. I’m not sure what bringing cardigans into it adds, but we are in complete agreement about the substance here.
I think where we start differing in how useful we see the cardigan metaphor to be might be here:
But it seems that to deliver CBT and GET you need to put on some strange mask that makes you a different person. I see the cardigan in medicine as part of that charade.
I don’t think delivering CBT and GET involves adopting a new therapeutic be-cardiganned persona. I think that when activity-increasing therapies are used with people with ME, the health professional delivering them often, not always, but often, becomes a-therapeutic or anti-therapeutic in terms of the effect on the patient’s ME. But the health professional delivering them may simultaneously be therapeutic by virtue of their basic therapist skills of listening, caring, encouraging etc.
When you read of the experiences of many people with ME when they did GET or activity-increasing CBT (as opposed to adapting-to-chronic-illness-CBT), as in the ME Association's 2015 survey report, there is often a stark lack of caring, lack of empathy, lack of therapeutic relationship, lack of altering the programme flexibly to suit the needs of the patient. A distinct lack of what you would call cardigan. So this is where the metaphor falls down for me.
To deliver activity-increasing CBT and GET to people with ME, you need to swallow the deconditioning and/or faulty illness belief model. No therapist should ever swallow a model whole. It goes against everything a therapist should be. In my view, to be a good therapist of any kind, you have to begin, middle and end with the patient, not with a bleeping model. You’re informed by models, just as you’re informed by scientific findings, but you don’t blindly adhere to them.
A therapist of any kind, occupational, physio-, speech, psycho-, needs to be free to draw on various models to fit the needs of their patient/client flexibly, and needs to have the clinical judgement to throw any and all of them out when they’re not helping the patient. If you find yourself butting heads with your patient over whether they want to get well or not because you’re so welded to a model that you’ve stopped seeing the patient, you’ve failed horribly.
No health professional should ever swallow anything whole. You have to be constantly questioning everything, checking in with the patient, checking what they're saying and what you're thinking against multiple more objective measures, checking that what you believe to be true is being borne out in response to treatment, very quickly responding when that is not the case.
So for me, if you want cardigan to mean therapist/therapeutic, then it can’t be used to refer to activity-increasing CBT or GET or LP for most people with ME. There is nothing cardiganny about how these are used for most people with ME. Or probably more accurately, the therapeutic and anti-therapeutic elements fight each other out and for a minority of patients, result in increased scores on self-report measures in trials. In your terminology, they’ve been cardiganned. (I also think it’s possible that actual change happens in some cases, but we haven’t seen evidence of this, because it would reside in objectives measures being used and robust literature on spontaneous change over time in ME and CFS.)
For me, the metaphor has just been stretched too far. It has turned into cardigan being used as a byword for poor care, or anti-care. And because cardigan is gendered, since they’re mostly worn by women, this gets a bit more problematic.
Would like to have been able to express this in a more succinct manner, but...brain fog. I hope that what I mean comes through.