Developing the 'Search Engine Optimisation' problem:
(This is fundamental because google searching is how most people get information. If ME charities are high on the results, they will receive more clicks and will influence more opinions.)
We all know the reasons pwME prefer the term 'ME', but we also know that many doctors will use the term 'Chronic Fatigue' or 'Chronic Fatigue Syndrome'. So when someone goes home and googles their diagnosis, they are more likely to google 'chronic fatigue' or 'chronic fatigue syndrome'. Whatever our preferred disease name, ME charities need to be high on those google search results if we are to engage newly diagnosed people, and (also vital) their friends and families.
I share a screenshot of a UK google search for 'ME' and 'Chronic Fatigue Syndrome'. ME charities are in a good position if people google 'ME', but not if they google 'Chronic Fatigue Syndrome'.
Link:
Google results for 'Chronic Fatigue Syndrome'
Link:
Google results for 'ME'
Link:
Google results for 'Chronic Fatigue'
Conclusions:
• First off, the UK google results for 'ME' are good: ME charities sit in second, 3rd, 4th place, this shows ME charities can get to a good position on search.
• However many people will be given a diagnosis of 'Chronic Fatigue' or 'Chronic Fatigue Syndrome'. For these terms, ME charities perform poorly.
• We should also aim for a high google search result for other terms: 'Brain Fog', 'Fatigue', and all sorts of others.
• I know there is a resistance to using these terms, but we have to "meet people where they are" - e.g. appear on their search terms, not expect them to know our preferred terminology.