I have just received a letter from a carer offering help with research into chronic fatigue syndrome (CFS). She had read some of my work, liked the approaches we are taking, and wondered whether her family could get involved.
This led me to wonder who is currently doing CFS research, especially here in Oxford. There’s a fair bit going on nationally, but I whizzed through the many links Google offered with some trepidation: the CFS world has long been divided by, at times, seriously unpleasant and aggressive differences of opinion between patients, researchers and clinicians about what the illness is (physical, psychiatric, a mix?), what it should be called, what causes it and how it should be treated.
I can’t answer those questions, and the jury is out, but the letter and its gentle offer reminded me of the importance of sensible collaboration between doctors and patients as set out in this blog. And I admit, it was also the word “hostility” in the title that linked it in my mind to the CFS debate.
Written by a doctor, it calls for a rethink about how her colleagues heed patient experience. It is a provocative article, including comments such as “we should advocate against any movement whose goal is to create a culture where the patient is always right. As physicians, we know that simply is not in the best interest of our patients.”
Hmmm. This led me to recall a conversation with a cardiac research nurse who didn’t want to involve patients in her research because “they don’t always know what’s good for them.” In probing this further, it became apparent that she was worried because some patients didn’t want to find ways to prolong their lives in the face of serious illness, while for her, this was, with the best will in the world, the strongest imperative.
Back to the blog, she also wrote “why have we turned the conversation about patient experience from providing thoughtful care for our patients to catering to their unreasonable demands?” She doesn’t in fact mean it negatively, but the phrase “unreasonable demands” is probably never a good one: one person’s “unreasonable” is another’s dearly held belief. Nowhere may this be more acutely felt than in the doctor’s surgery, and arguably, nowhere have we seen this more painfully in medical research than in the CFS world.
I liked this blog especially for its call for reasonableness on both sides as set out in the final paragraph. What she writes here applies to the research world just as much as to the clinical. Or at least it should: “We all went into medicine to help our patients, and focusing on the patient experience does exactly that. In the end, it’s not the patient experience that’s the problem…it’s the way in which it’s often interpreted and implemented. The next time you hear your colleague mention the patient experience, instead of showering him or her with cynicism, remember what it’s truly about. When doctors are able to collaborate with patients to do what’s right for the patient, the patient experience flourishes. Who can argue with that?”
Here’s hoping that all patients and those who want to help them, even when the terrain is a tough as that around CFS, can be part of this.