Opinion To Ground Research in the Lived Experience of Patients and Caregivers, Give Us a Voice! 2025 Lubell

[Andy]

Abstract​

My daughter has been diagnosed with a range of chronic conditions, including Hyper-mobile Ehlers-Danlos Syndrome and myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). I have approached my role as caregiver in the same way I approach my day job leading social science research: reading the literature, carefully observing her condition, and developing hypotheses about her conditions and how they might be treated. I now have more than 7 years of longitudinal observation—a wealth of data—but no easy way to share with the medical research community the hypotheses these observations have engendered and my ideas about how to productively structure future research to accelerate progress toward treatments for her and others like her.

In this essay, I share my thoughts on why patient and caregiver observations and hypotheses are important and how the medical research field might tap into them to make faster progress toward effective treatments for complex medical conditions.

Open access

 

[Jonathan Edwards]

"Although there are established forums for patients to share ideas with other patients and for researchers to share ideas with other researchers, the field lacks effective mechanisms for integrating patient learning into the broader research dialog."

The author clearly has not got around to discovering S4ME in the last 9 years, or even the place before. I wonder why not?

 

[Trish]

Perhaps they have discovered and discounted because of questioning of validity of some diagnoses in some discussions here, and questioning the prominence given on social media to anecdotes and hypotheses by influential pwME.

 

[Utsikt]

He’s a co-author of this paper:

https://www.s4me.info/threads/variant-connective-tissue-as-a-risk-factor-for-long-covid-a-case-control-study-2025-torok-et-al.42936/

While I think listening to and engaging with patients are crucial factors in good research, I don’t think most of them (including myself) would be able to publish anything of sufficient quality and value.

And there’s far too much misinformation floating around, so I’m not sure any of the parties would be satisfied with the exchanges.

 

[InitialConditions]

I think there is space for patients offering hypotheses and anecdata as long as they are labelled as such. So often hypotheses are presented as fact. There was a patient-led hypotheses journal for long covid, but I haven't seen it mentioned for a long time now and wonder if it died a quick death.

 

[InitialConditions]

I think there is space for patients offering hypotheses and anecdata as long as they are labelled as such. So often hypotheses are presented as fact. There was a patient-led hypotheses journal for long covid, but I haven't seen it mentioned for a long time now and wonder if it died a quick death.

Patient-Generated Research Hypotheses – Patient Led Research Collaborative

patientresearchcovid19.com

I thought this was a good idea. Seems the last issue was in 2024.