Advocating for chronic pain sufferers
@colleenyoung Hi I tried to respond to a message from brainsr which I think was on the general board about sending a private message? I have been having a hard time figuring out how this system works, but then I’m 68 and not the best computer writer even though I have been using them since the seventies or eighties.
I am also a member of the WebMD pain group. Unfortunately that group has kind of fallen apart in large part because there is no regular moderator or menator watching the discussion. It is sad because we had some good discussions there although some people were critical of the others at times and this made some feel they were not wanted on there and others got up set at that.
One thing about the WebMD discussion sites is that their site interactions were a lot easier to use. Once you sign in you could follow the discussion in total or follow an individual. You could easily respond to one person or the whole group or even respond to just one comment and I believe there was a way to connect with a person in private without going to their private email. If possible you might sign on just to see how they operate.
I feel this site is greatly needed by the chronic pain community and you and Mayo’s are providing a very valuable service. While I am still feeling my way around here I can see the good it is doing just by letting the participants vent their feelings. As a retired social worker and counselor I know how difficult it is to facilitate a group. It is even more so on the internet. On WebMD a professional either scientists or medical doctor would offer comments in a general way to help others understand the pain problems. This was greatly appricated by the group as far as I could see.
Aside from the pain I experience I am also an activists for the chronic pain group and try to get others involved in advocating for the group. There is a lot of negative PR on those who missuse pain medicine and there seems to be little balance from pain suffers to ofset that so I try to get people to write their elected officals as well as write comments to articles and letters to the editor to present the other side.
Additionally I support euthanasia and physican assisted aid for those who choose that method. Unfortunately, from the reading I have done in online journals on pain their is already a high suicide rate among chronic pain suffers. As the effort to restrict opioid use continues that rate will probably climb and I have already seen articled about people who could not get pain medicine through legal means doing so in the black market and they paid with their lives as the black market stuff is totally unregulated. This is another side effect of a hasty attempt at stopping opioid use. I can accept someone who is willing to end their suffering permanetly as long as they know what they are doing, but it really bothers me that people are dying without intending too.
I hope I did not bend your ear too much, thank you again for what you’re doing. 19lin