Forums For Good, Forums For Bad
In the Times on Monday this week there was a piece about online health forums, and how they provide such a useful resource so many people who may otherwise go uninformed about their condition. CLLers are very well served in this respect, having one of the oldest forums of this type in the world.
The ACOR CLL list was established in 1996 and currently has 2,606 subscribers from around the world. As always there has to be a British version, but ours has 100 subscribers, and is rarely used, and the Canadians have 180 members. There is a Yahoo CLL/SLL group, and a Facebook group and there are world class experts participating. The Lymphoma and Leukaemia society in the US has a forum, There is the CLL Forum and CLLCfriends forum. (all effectively US based)
In the UK, Leukaemia Care has a forum, with very strange rules, and there is the UK CLL Forum, which the UK CLL Support Association has abandoned. If you have a UK specific question, it might be worth asking there, as the two guys running that forum (somebody called Andysnat, and Robert) think that it is very worthwhile maintaining it.
You may be thinking, if you are a CLLer, “Yes, but we already know most of this Andy, except that bit about the two guys.” On the other hand, perhaps somebody new to CLL might stumble over here, and then I’d have done a little good by pointing them in the right direction. I’d like to do something else good in the process as well, and reinforce a little warning that appeared in the Times article.
It said “Check any medical advice that you receive from a forum with your doctor.”
I’d add to that along the lines of -
“Don’t squirt coffee up your bottom”
“A balanced diet is probably better than popping vitamin pills”
“If Mangosteen or Acai juice cured CLL I wouldn’t have just finished four months of Chemotherapy”
A friend of mine sent a message to me that more or less summed it up. In it he said the following -
” What’s wrong is that well-meaning people can encourage people to do the wrong things and discourage them from doing the right ones.”
And that is EXACTLY how I feel, but have never defined it that precisely.
In Australia at the moment, there is an investigation going on into the terrible death of a nine month old child, whose father is a homeopath. I don’t find it important to dwell on the circumstances, but to illustrate the worst kind of thinking that you might expect to find in a forum, here are some homeopaths speculating on the child’s death. (Via Badscience)