*This is a crowdfunding month at UC Berkeley for my Trial by Error project. If you appreciate my work and would like to help support it, here’s the link for this November’s campaign.
By David Tuller, DrPH
Lisa McCorkell is a co-founder of the Patient-Led Research Collaborative, a group of people with Long COVID and associated conditions who are also engaged in conducting research into these illnesses. She has a masters in public policy from University of California, Berkeley, and was featured as one of Nature’s 10 people who helped shaped science in 2022. She is the co-author of several prominent Long COVID papers, most recently a commentary in Nature called “Long COVID research risks losing momentum—we need a moonshot.” (Her co-author is Michael Peluso, a physician and researcher at UCSF.) She and I recently spoke about how she views the current research situation and her prescription for what is needed to pursue this “moonshot.”
Definitions are important, especially if a fifth of Long Covid patients are ending up with a diagnosis of FND, as seems to be happening in Ireland -https://www.irishtimes.com/health/2023/04/20/two-thirds-of-patients-at-long-covid-neurology-clinic-yet-to-return-to-work-fully-seminar-told/. I would hope that Irish Long Covid patients who are diagnosed with FND are being diagnosed according to strict criteria for FND (positive signs) but I do worry that they might not be. While the lead clinician at the Dublin Long Covid clinic states that FND is not a diagnosis of exclusion (so far, so good), they did co-author a paper -https://jnnp.bmj.com/content/94/10/855 – that indicated that FND is the second most common condition seen in neurology outpatients, (oh dear). The paper cited the Stone et al 2010 paper that reported on the Scottish Neurological Symptoms Study (SNSS) that David has explained about elsewhere, (in his last blog, if I’m not mistaken). This study found a much lower prevalence for positively identified FND/conversion disorder that clearly would not put it in second place. It seems that only a floppily loose definition of ‘functional and psychological symptoms’ – i.e. not true positively diagnosed FND – managed to attain that second place spot. I understand that this issue has been flagged up to the journal and the paper’s correspondence author but that a correction to the paper has been refused, so my worry is that the co-authors of that paper may perhaps not be too bothered about the definition of FND. I hope I’m wrong to be concerned about this and that these authors do adhere to a strict definition of FND in their practice but, if they do, why won’t they correct their paper? (I suppose it’s possible that some of the co-authors of the paper in the Journal of Neurology, Neurosurgery and Psychiatry (JNNP) weren’t involved with that bit of their paper and the correspondence author may not have made them aware that this issue has been raised.)
It seems that a meeting on FND has just been held in Dublin -https://www.medicalindependent.ie/in-the-news/conference/update-meeting-to-focus-on-functional-neurological-disorders/ . What a great opportunity that would have been for leading FND experts to get together, to confirm the importance of using the right definition of FND, and to agree to correct papers in which the definition of FND appears to have been somewhat s-t-r-e-t-c-h-e-d. Perhaps they did, who knows? I imagine it would be reassuring to Long Covid sufferers if they could know for certain that their clinicians were scrupulously careful about definitions both when writing their papers and when diagnosing their patients. A correction to that JNNP paper might be a good start?
The Pillars of Knowledge: Faith and Trust?
I am always a bit puzzled when I see people with Long Covid or ME sitting in what appears to be financial security, nicely dressed, hair clean and styled, nice clothes, makeup and so on.