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@tomkindlon.bsky.socialOct 8, 2026, 3:34 PM

4/
Another extract that quotes me from "Patient's knowledge, doctor's ignorance: The production of knowledge about myalgic encephalomyelitis" by @chloedecanson.bsky.social

#MEcfs #PwME #CFS #epatient #MyalgicEncephalomyelitis

Lay scientists do not merely criticise existing institutional research on the disease, but also produce their own. In this way, they produce not only extitutional, but also what they have called patient-led and what we might call more generally lay-led science (McCorkell et al., 2021). They produce, sometimes in collaboration with institutional scientists, new studies, review articles, opinion pieces, and conceptual-definitional groundwork, which they publish in scientific journals.30 I devoted considerable time and energy in writing a narrative review of the reporting of harms associated with graded exercise therapy and cognitive behaviour therapy in ME/CFS. This included collating data from patient surveys, data which generally had never been submitted to the peer-reviewed literature. I subsequently published other papers on the topic of the safety of graded activity therapies and harms reporting, along with reanalyses of the PACE Trial, a major UK trial which was designed to be the definitive assessment of CBT and graded exercise therapy for CFS. (Tom Kindlon)
@tomkindlon.bsky.socialOct 7, 2026, 12:19 AM

3/
An extract that quotes me from "Patient's knowledge, doctor's ignorance: The production of knowledge about myalgic encephalomyelitis"

#MEcfs #PwME #epatient #epatients #MyalgicEncephalomyelitis

"I decided to start doing scientific work on ME because I was frustrated with the level of analysis in papers. Sometimes I felt that being a patient and having interacted with many other patients, it gave me insights into other ways of looking at topics and data. I wanted to increase the chances that there would be scientific progress that would help me and other patients and felt I could contribute to scientific discussions. Most of my initial work was in post-publication commentary. I wrote over 100 e-letters on journal websites as well as having 20 letters to the editor published. This was in response to a wide variety of topics but a special interest of mine was non-pharmacological interventions particularly graded exercise therapy and graded activity-oriented cognitive behaviour therapy. (Tom Kindlon)"
@tomkindlon.bsky.socialOct 5, 2026, 5:31 PM

I was one of a number of patient scientists and advocates who was interviewed for this sympathetic, open access paper

"Patient's knowledge, doctor's ignorance: The production of knowledge about myalgic encephalomyelitis"

www.sciencedirect.com/science/arti...

#MEcfs #PwME #epatient #epatients #CFS

Abstract It is usually assumed that patient and doctor know strictly different things: the patient knows the phenomenological aspects of their illness, and the doctor knows its medical aspects. I present a case study, that of myalgic encephalomyelitis, wherein, due to severely dysfunctional institutional knowledge production and transmission mechanisms, the medical aspects of the illness are on the whole better understood by sick people than by their doctors. Indeed, lay scientists within the patient community disseminate and produce science on their disease, ensuring that patients as a whole have reliable knowledge about their disease. By contrast, systemically produced and systemically maintained ignorance on the part of medical professionals is the norm, and may be beyond the specific case study I present.