Mithriel
Senior Member (Voting Rights)
A problem with surveys is that people who have a problem are much more likely to say. (It is the same with Amazon reviews!) Even here, the thread on the effects of vaccines is heavily weighted towards those who have had problems. Ones who were fine may post once to say that but the others post to get support and describe the course of things.
This is useful and natural but it can give prominence to the bad side when it is actually a very small number of people. We need to give information and support but it must be frightening to be diagnosed with ME then go straight to reading about Whitney Defoe. There has to be balance but how do we provide it?
It runs through all ME discussions and is something we need to consider - menopause support groups are much more likely to consist of those who had problems so it magnifies those problems as they are the ones who do publicity. A good and necessary thing but not the whole truth of the situation.
Maybe there are large numbers of people who have true ME but get better within the first year. There would have to be very large studies done, preferably not looking backwards but following the disease as it develops. We lost a magnificent resource by not following covid victims. Some databases that followed people from the thirties onwards has been mined to answer questions no one thought of at the time.
But no money for ME or longcovd, sigh.
This is useful and natural but it can give prominence to the bad side when it is actually a very small number of people. We need to give information and support but it must be frightening to be diagnosed with ME then go straight to reading about Whitney Defoe. There has to be balance but how do we provide it?
It runs through all ME discussions and is something we need to consider - menopause support groups are much more likely to consist of those who had problems so it magnifies those problems as they are the ones who do publicity. A good and necessary thing but not the whole truth of the situation.
Maybe there are large numbers of people who have true ME but get better within the first year. There would have to be very large studies done, preferably not looking backwards but following the disease as it develops. We lost a magnificent resource by not following covid victims. Some databases that followed people from the thirties onwards has been mined to answer questions no one thought of at the time.
But no money for ME or longcovd, sigh.
I've made a poll here