Post

1) "... the medical aspects of the illness are on the whole better understood by sick people than by their doctors..." In this new paper, philosopher Chloé De Canson details how the ME/CFS community shares and produces scientific knowledge.

2) She counters the widespread conception of sick people as medically ignorant and unscientific. As if patients only know what they feel and only doctors hold the medical knowledge of what that means. In ME/CFS, there something far more interesting going on.

3) By interviewing many ME/CFS advocates and lay scientists (including our account), she shows how the patient community engages in a complex scientific process, reviewing and analysing studies alongside researchers and the few specialist physicians.

4) The lack of good science and medical care has resulted in an active patient community that tries to fill in the gaps as well as it can. As a result, patients are often better informed about their illness than their doctors.

5) IMHO past overstatements and bad studies such as PACE have created a skeptical subcommunity that became more involved in the scientific process. They check references, download the supplementary material, and re-analyze the raw data.

6) Canson uses ME/CFS as an example to show that patients are often competent and well-informed. She criticises Elizabeth Barnes who argued that a knowledge imbalance is a good reason" for physicians not to trust patients about at least some of their own narratives."

7) One limitation of the paper is that it doesn't go into the problem that the patient community often shares incorrect views, overstatements and hype. This can have negative consequences for advocacy and patients (i.e. trying harmful drugs or surgeries).