BMJ Opinion: To speed progress in treating chronic conditions, engage patients and caregivers as research partners, 2021, Lubell

https://blogs.bmj.com/bmj/2021/09/2...patients-and-caregivers-as-research-partners/

 

Believe patients! Whatever next?

 

I also wonder about the simple approach of routinely asking patients to come to an annual review prepared with a list of the five things that are most challenging about living with their illness, and five things they've found helpful in managing it.

This gets away from the groupthink and self-diagnosis of social media, offers an opportunity to review what changes over time, and could highlight individual symptoms that are amenable to treatment.

Just as importantly, it acknowledges patients' difficulties, and helps doctors get a better picture of the condition – they'd soon understand that ME isn't mostly about fatigue, for instance, and they might pick up simple management strategies they could share with other patients.

 

I think some carers can be a more reliable source for information than patients: that is certainly true in my household. My wife spots when I am flagging long before I notice it, and she remembers symptoms and severity much more clearly than my befuddled brain can manage.

 

So true, my strategy in dealing with ME is not to think about what I can't do, but have a simple target every day. However, my wonderful wife regularly sees me underachieving whilst I remain unaware how ill I am. It is no wonder "positive" outcomes are reported after GET, because we WANT to feel better than we are and fool ourselves most days that a small step forward has been made, ignorant of the fact we actually slid sideways or even backwards as soon as we woke, had we even slept....