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

[Sly Saint]

Chronic diseases like Ehlers-Danlos Syndrome, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), and Fibromyalgia have long been understudied relative to their prevalence and the extent of their disruption of normal life. The emergence of long covid among a significant share of the millions affected by covid-19 adds to the urgency of developing solutions to these debilitating conditions.

Given the high degree of variation from one patient to another and symptoms that can shift over time, patient observation is really the only way to cost-effectively gather the longitudinal data needed to thoroughly understand these conditions. One approach would be to provide patients with tools and training to track their symptoms and response to different therapies on a daily basis over a period of several months. The resulting data could be analyzed using sophisticated qualitative research tools to identify patterns and generate hypotheses for rigorous evaluation of possible treatments using more traditional methods.

This leads to a second, and potentially more controversial suggestion. I would encourage researchers to see patients not just as data collectors, but as partners for generating hypotheses for future evaluation. I readily acknowledge that it will be difficult to separate the wheat from the chaff. But amid a field of theories offered by patients and others, I have seen many well-thought-out hypotheses that merit further scientific investigation.

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

 

[Remain in Light]

Believe patients! Whatever next?

 

[Trish]

I agree with his suggestion that it's good to listen to patients. But I'm wary of suggesting closed FB groups are the best place to find them. It's a minefield full of groups espousing all sorts of quack remedies like LP and supplement protocols which can mislead researchers (and patients), especially as the group leaders select and ban members to keep the group on message.

I think it would be better for researchers to keep away from such closed groups and instead adopt some of the suggested methods, such as providing patients with easy and reliable methods of tracking their symptoms, activity levels and medication/supplement use. But the patients in such studies need to be selected on a basis other than self selecting closed FB groups. This sort of study needs representative population sample selection, I think.

 

[Kitty]

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.

 

[NelliePledge]

That’s a great idea @Kitty

 

[Graham]

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.

 

[freddyV]

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....