Have you had any negative experiences with online support groups and/or websites? Explain.

1. no
2. Arguing about personal opinions
3. No - just know that there is a need to verify everything and see how it might apply to the special circumstances that happen in each situation.
4. Sometimes it's hard to filter out non-credible information.
5. No. My opinion is that everyone is entitled to their opinions and that we all make our own decisions. I don't let any conflict in the groups affect my use of the groups and their resources.
6. There is an incredible amount of advocacy of CAM treatments by various posters. Makes me feel guilty that I, as the caregiver, am not doing all that should be done for my BT spouse.
7. I did have one off-group email that was offensive.
8. None.
10. Do not like to read personal attacks arising from varied opinions. Sometimes no response to my post about emotions means others may not connect with it, leaving me insecure about having posted those emotions and wondering why they are different. Insecure at times about fitting in even though it is expressed that all are accepted.
11. No
12. Online support groups canhave some not so stable members. You just need to try not to take every thing personally when someone is having a melt down.
13. No
14. No
15. People sometimes get int o ridiculously heated arguments. It's also tough to read about children who pass away as my own son struggles to survive. It's hard not to experience a degree of "survivor's guilt/"
16. Yes. Have had only 3 individuals being negative to my possible suggestions even with my stating I'm not an Expert but only a Wife, Caretaker, Advocate & R.N. to Husband with GBM IV and after some Research have recommended they contact Specialist's (no charge) for further clarification & possible recommendations.
18. No
19. I sometimes am frustrated by the superficial nature of many on-line threads. I really wish there was more scientific meet to the discussions and less "please pray for a good MRI". It's important for many people to get emotional support from "support groups"--I frankly am not looking for that. I'm fortunate enough to get support from family and friends and instead seek intellectual support so to speak. Personally, I am sometimes off-put by the religiosity of contributors or the talk of "angels" but it's easy to skip messages not to my taste/interest. I am generally very skeptical of alternative/complementary medicine but I get irritated by the arrogance of a physician who almost seems to take pleasure in crushing people's hope.
20. no
22. just sorting through 'too much email'. sadly - there are so many folks with this illness - to belong to the main brain tumor group is impossible to keep up with unless its critical to your survival.
23. no
24. Occasional Spammers and overly noisy opinions.
25. Yes. Some are clearly money oriented. In other groups I am frustrated by either the "know it all" attitude or the complete opposite: "no active participation & just wants others to tell them what to do".
26. sometimes the things I read frighten me
27. can get too intense, argumentative, emotional/depressing, ahve to be careful
28. It's difficult to hear about others that are suffering but this is an extremely difficult road.
29. no
31. not really
32. No bad experiences
33. no negative experiences.
34. no not really but tuned out some discussions on herbs and alternatives I thought wre waste of money
35. No
36. No. But I wish there was more information about her type of brain cancer - CNS Lymphoma. The on-line group almost never posts.
37. I stopped attending an online suppor group chat room because I felt like the moderator ignored me completely--she seemed to pick up on everyone else's comments, but always bypassed mine. I felt invisible, even though the other ladies in the group were very nice. As you know, the moderator makes a lot of difference!!!
38. There can be a fair amount of one-sided beliefs expressed from both sides of the debate on conventional versus alternative medicine. I find that most reasonable thinking people (including doctors) are somewhere in the middle.
40. no
41. overwhelming, at times, can get very negative and depressing. Sometimes people are inappropriate, oversharing, or looking for too much.
43. Not really. It's hard to deal with the deaths of individuals I've come to know and care for... but that sadness is part of life and is a reality in this BT world.
44. N/A
45. no because I am a very good researcher and am good at distinguishing the BS from the info of value
46. None
47. Every once in awhile people try to push religion via personal emails more than I like, but I would get that any where.
48. Hard to hear about the deaths that have happened.
49. Mostly just the bickering which most moderators try to stop it in their tracks. Also, we did have a fraudulant participator on the pediatice brain tumor onlin support group. She was actually 16 y/o and had all the sob stories and people sent her "daugter" who was "dying" all kinds of gifts. We have a few doctors and other experienced people online that spotted some problems pretty quickly with her stories and started investigating so it was stopped pretty quickly.
50. Just some occassioanl bickering between one caregiver who thinks he know everything and likes to tell the doc of the group that he doesn't know what he is talking about.
51. Sometimes the online support group members treat the site as a way to say 'hi' to their fellow bt fighters, however, it is really more for the flow of information. I would rather see more info re: treatments, side effects, recurrent tumor issues, etc.
52. Not really, but having a lot of experience with the internet and doing business on-line, I don't have very high expectations of anything on-line. I think that most government sites, like the National Cancer Institute's, most "professional non-profit" sites like the North American Brain Tumor Foundation's, meet and usually exceed expectations. Other, non-professional websites and online support groups have to be carefully evaluated by the user. A lot of people caring for a person with a brain tumor or with a brain tumor themselves, are very vulnerable. They can be vulnerable to outright on-line scam artists. They can also be vulnerable to less overt forms of pressure.
53. Not really. But sometime differences in opinions resulted in personal attacks.
54. NO
55. no.
56. The only negative comment with online groups is the bickering. When you are fighting this disease or helping someone you love battle it you ( should) realize that life really is too short for such negativity. In regards to websites - there are alot of websites making wonderful claims and looking professional but in reality many of them are out for the almighty $$.
57. Not personally.
61. No.
62. None
63. no
64. no
66. no
68. NO
70. NO
71. Some peoples responses are unecessarily negative and thoughtless.
72. No, we haven't used support groups per se. we do look at ABTA, NABTA and this site
73. No.
74. they tend to repeat the same controversial discussions every 6 months as new patients join
75. The only negative experience I has was having one past caregiver tell me not to respect what my husband wanted, but to ignore his wishes and send mri's etc to Duke for evaluation. I did not think it was appropriate for her to make that statement.
77. There was one person on the Big List who sounded a bit unreal......it was just a bit uncomfortable, that's all.
78. no
79. Never any really horrid experiences as we are all so protective of each other. As in life there are people who try to take advantage, offer false hope, etc.
80. The only negative experience revolves around differences in personal experience. Sometimes people of different experiences--for example, if their spouse died very quickly--will fail to understand or affirm the experiences of spouses of long term survivors. This has the potential for being very hurtful since the support group is supposed to be a place where all of us are free to share our feelings honestly. I guess it is sometimes hard to put yourself in someone else's shoes when you are sufferring. Also, we assume that since we have BTs in common, we will be automatic friends almost--but of course we may have many differences too that work againt common understanding.
81. NO
82. Yes with so many people dieing sometimes you feel there is no hope
83. Too much off-topic content
84. The Support group that I visited was for all ages and I do think that pediatrics is a somewhat different situation.
85. no
86. The only negatives are personal emotions. When one gets close to another list member and their families and you connect it is like losing a member of your family when one gets their agel wings after an awfully hard fight to live.
87. Not really...you can delete what you want.
88. Difficult, initially, to get used to hearing about the bad things that were coming to us down the road. I got more accustomed to it and it doesn't bother me in the same way anymore. I'd much prefer to have the info in advance.
90. no
91. no
93. no
94. No
95. Have not used any.
96. Sometimes, the information is stated as if gospel. However, each case is different and readers must be aware that often this subjective information must be carefully assimilated
97. N/A
99. The negative part is most are not separated by patient, caregiver etc...that is not good
102. sometimes they get off topic into moral discussions or other personal biases without acknowledging the fact that others may have different beliefs.
103. see above
104. N/A
105. n/a
106. The bickering sometimes get old but the facilitators try to stop it.
107. None
108. no
109. No, not really most have a critiria of no negative attacks that everyone is entitled to their own feelings and how much they can handle.
112. No
114. Yes. A couple of times there were people who had to be removed. One person was a fake and had created the entire story. Another person, for whatever reason was just very rude and mean.
115. No. In fact, I met one person on line who is a three year survivor and I met so many other caregivers/survivors that are truly unbeliveable and very, very, inspirational.
116. My negative experience is just the acknowledging the reality of what could happen to me, as seen in other people's cases on the list.
117. No.
118. I am not an active member because I try and surround myself with positive people. It was very hard at the beginning because everyone tries to help but sometimes without thinking people tell you a story or something that can really bring you down and they don't realize that you still have to fall asleep and I have 3 children and I need to stay focused and up beat for them as well.
120. Much of the "chatter" in support groups is personal conversation between other members. I usually am not interested. I don't participate as much in the "feel good" support, but I'm more interested in finding treatment answers or life adjustments for me and providing some of those answers for others.
121. na
122. no
123. The only negativity I've experienced is the overwhelming sadness I feel when I read about someone elses' troubles. I worry about that individual and it also causes me to think that I may go through something similar in the future.
124. Sometimes, we have had folks present themselves falsely - that is, they fabricated the whole thing
125. Certain individuals involved with online support groups may have misrepresented themselves and their motivation for being involved in these activities.
126. overload of inbox but perhaps necessary to have a lot of info to make informed choices
127. Some lists have been almost destroyed due to the negative participation of one or two of its members: Name calling, insults, etc. I've been in these lists for almost 10 ye
128. no
129. Yes. The nature of e-mail is that it's sometimes too easy to say something that might not get said in face-to-face conversations. I've read some unfortunate posts and know that some feelings have been hurt.
130. My only problem is that my son and I belong to the same group, so I sometimes hold back what I might say if I didn't think he would be reading it. I don't always want him to know how I'm hurting.
132. i guess so. it seems w/ the larger #s more people die, become paralyzed or experience constant pain. it doesn't feel too good to read these things but it does make it all seem real.
133. No.
134. n/a
135. No.
136. Only based on strong opinions
137. No.
139. no
140. Some kook tried to frighten me about some of my more puzzling symptoms.
142. Not really. There have been a couple misunderstanding between members, but it really didnt' effect me that much.
143. Occasionally, there are inappropriate posts from list members but this is generally the exception.
144. Too many of the members seem to spend alot of time focusing on their 'problems' rather than using the often informative information provided to focus or channel their energy towards betterment.
145. No. Once in a while you will get someone who signs on and is faking it; they are soon figured out and banished.
146. There was a member that had to be booted out, but other than that, it's been pretty positive.
148. Occasional know it alls..
149. It is extraordinarily hard to learn how others are impacted by their tumors and to know that I may face similar trials down the road as I deal with mine. I find that I have to "back off" when it gets to be too much.
150. no, just a bit depressing sometimes. Daily correspondance makes you think about the BT and the horrible prognosis all of the time.
151. Very few. Recently someone posted an outdated chart of survival rates which was bad on so many levels.
152. NO
154. Not really. It is hard when someone passes away.
155. As my husband has a long term problem I have found that people wsith higher grades tend to 'talk down' to me because they feel they are more important as their problem is more accute. I think this is totally wrong because what they experience in a small condensed way (say a couple of years) we experinece over a very long time.
156. no
159. Yeh! Friends you make online keep dying... :-((
160. no
162. just the cold hard knowledge of what most likely will be my fate. all in all...online support 60% positive 40% neg. by gaining knowledge, at least i feel like im doing something to fight this sob, although i know it wont buy me an extra day of life.
163. no
164. No
166. no i didnt.
167. No.
169. Yes, with the brain tumour list server there was an idiot exposusing to others a tested treatment with poor clinical resulst.That individual could not read a clinical study properly and the web master supported him. I dropped off the site after that and no longer subscribe to the list server.
170. Sometimes one person may keep putting their personal thoughts on line and forcing their beliefs on to others to the extent of what may seem 'bullying'
171. n/a
172. yes wackos sometimes just like the real world
173. I was happy that my sister-in-law went through a lot of the information-she was amazingly thorough and I'm not sure I could have handled all the info that she combed through. Some of it is overwhelming and depressing, but it saves lives too, I'm convinced. I think sharing the job of caretaker is better than doing it alone. Also, my husband didn't read much about the depressing statistics for survival for AA patients-this helped his outlook. My sister in law and I read them and cried, and got through it.
174. Sometimes people gang up on Dr Fink and start a flame war. These people should be banned. Dr Fink is one of the most helpful people (besides Al Musella!) in our journey
175. Only one Negative Response but worked that out very nicely & diplomatically.
176. some fighting between people with different viewpoints
177. No
179. All The online BT sites I visist are dominated by the meaningless chatter of female care givers. Almost all of their postings don't interest/concern me. But ocassionally their catty chatter is so absurb, ist provides ew laughs.
180. no
181. No.
182. Too much information and unfortunately what works for one does not neccessarily work for another
183. no
184. Yes, some people nag and bitch over same issue forever. That is not positive. Then you get the know it alls that put down your feelings or ideas or advice. They need a kick in the ass. I need my groups to be good. Positive. Every patient or person should be vauled equally.
185. no
186. no.
187. No
188. No.
189. Meningioma groups - basically female and very unmoderated. Bitchy, whiny,competitive - I'm sicker than you are..- and advising such things as med dose changes !!
190. Difficult reading heart-breaking stories and emotional involvement with people who are in the same situation as you. Sometimes e-mails can make feel more anxious and upset.
191. People passing along medical advice and they are not of the knowledge to do so. The constant flames on those of us who do not believe in the validity of supplements without case study. I fear to many people would take some of that as medical advice and not benefit from "proven" medicine.
192. no
193. I don't like when people bicker and are negative.
194. No
196. Only that some of them are no longer updated or used by brain tumor patients or caregivers.
197. NO
198. yes--they do not like to be supportive unless you have posted for a bit--they do not email off the board when trying to make contact for support--the information on statistics are posted by idiots occassionally that should not be posted--the deaths are posted on some of the sites and truly saddens me for the poor lost families.
199. N/A
201. Some of the bickering that goes on is discouraging and counter-productive - but part of human nature.
202. None, although the information can be frightening sometimes.
204. N/A
205. No negative experiences.
206. I don't visit them. I rely on my real life support group and my doctors.
207. no
210. So sad. Also, sometimes they offer crackpot treatments. People are desperate.
211. Nope.
213. No
216. no
217. I have not been in any support groop's
218. no
220. n/A
221. yes. Very mixed information is confusing.. some recommend grepe juice others dont for example.
222. nope
223. No
224. I have found them to be a great resource.
225. no
227. Primary negative response is lack ofresponse to my input (Sievers)
229. I love to come home and delve right into the list. Unfortunately I have 300 messages (all old)on my computer, plus about 400 more I have filed away, and I must read 50 to 70 more!!! I know everyone wants to speak their heart, but I cannot assimilate it. There must be someway that the braintmr list decided to divide the messages into groups that one could choose from. Lord knows they are ALL SAYING SOMETHING IMPORTANT, but I cannot read all the messages.
230. no
232. Not always able to communicate with them.
233. lot's of crazy peolpe! always having negative advice.
235. NO
237. Only real negative has been when people insist on wearing their religious beliefs on their sleeve... to the point of what amounts to ganging up on people who don't share their beliefs.
238. Just the reality that brain tumors are very serious business. Support groups often drill this in.
239. No