Talk:Onset of ME/CFS

From MEpedia, a crowd-sourced encyclopedia of ME and CFS science and history

Some bias on the page, some non-scientific sources -- JaimeS (talk) 18:49, August 26, 2020 (UTC)[edit source | reply | new]

"Some ME patient charities, for example The Hummingbirds' Foundation for ME hold the view that ME is always caused by a virus, but chronic fatigue syndrome (CFS) may have non-viral triggers, and do not recognize bacterial infections or non-infectious events as a potential cause or trigger.[8]

The onset events recognized as potential causes or triggers in the ICC are based on events prior to illness that have been reported by patients meeting the diagnostic criteria for ICC ME or based on the consensus of experts. The exact cause has not yet been identified in research. Chu et al. (2019) reported on pre-onset events for patients meeting the CFS Fukuda criteria only.[1]"


I don't find an ME charity's "view" in absence of proof to be relevant to the factual information on this page. I think this whole section should be removed as it's purely speculative.

Hardly any charities think this, but the point of view is typically touted by the media in a way that seems to discredit patient groups - as if they would only be interested in a "mystery virus" cause. I toned down the wording but I think it would be helpful to include views of all the larger charities here, and below to have a heading mentioning the Dubbo study and the Norwegian Giardia cohort research too.

Do you know which are the largest US charities? Or how the sizes compare to Emerge, ME Association, Action for ME, and other large ones. I also expanded the ICC summary below to include other causes. ~Njt (talk) 19:10, August 26, 2020 (UTC)