Patients’ Experiences With Therapeutic Approaches for Post-COVID Syndrome: Results of a Crowdsourced Research Survey 2023 Klocke et al

Abstract

Some patients develop multiple protracted sequelae after infection with SARS-CoV-2, collectively known as post-COVID syndrome or long COVID. To date, there is no evidence showing benefit of specific therapies for this condition, and patients likely resort to self-initiated therapies. We aimed to obtain information about therapies used by and needs of this population via inductive crowdsourcing research. Patients completed an online questionnaire about their symptoms and experiences with therapeutic approaches. Responses of 499 participants suggested few approaches (eg, mind-body medicine, respiratory therapy) had positive effects and showed a great need for patient-centered communication (eg, more recognition of this syndrome). Our findings can help design clinical studies and underscore the importance of the holistic approach to care provided by family medicine.

Open access, https://www.annfammed.org/content/21/1/73

 

3) Don’t crowdsource surveys?

 

It is important finding out what people do, but it is also important with such a heterogeneous group which will contain many people who will improve spontaneously to be sceptical about reports of improvement. It is easy to confuse something you by chance happen to be doing when spontaneous recovery is happening with something that has a causal relationship with that recovery. Also with such as aromatherapy where people might ‘feel’ better whilst undertaking the experience and so report it as a positive experience whereas there may be no change in there underlying function and any ‘psychological’ or ‘emotional’ boost may be dependent on ongoing intervention. Other interventions may provide an ongoing recreational activity even though it is not reasonable to consider them as a possible cure.

Going on the reports of people with ME, so many of us report a desperate trawl of all and everything in the first few years of the condition, but people need reliable information to evaluate what for them will be just a waste of time and money, what will be a pleasurable experience and so potentially provide an emotional boost while it is happening, what is promoting general health so in theory might contribute to creating good circumstances for any spontaneous recovery to happen. Also importantly with Long Covid some symptoms resulting from one off damage might be amenable to improvement with appropriate support but others such as PEM mean that any activity has potential costs and could make the condition worse.

 

I go to aromatherapy massage once a month. It is of great help to me because it relieves muscle aches consequent to my ME. I also suspect that being touched helps my nerves remember how to work but I say that quietly .

I would rather have a treatment for the disease than something that helps the damage from it. It shows up the dangers of questionnaires taking everything out of context.