National Multiple Sclerosis Society : Reformat FaceBook Support Group
- by: The Movement for Truth
- recipient: National Multiple Sclerosis Society
As long standing active members of the NMSS FaceBook support group, we've seen many changes in the social dynamic of the support group this year. Changes that have caused many of our friends & family members to leave the group with painful frustration. The negative changes in conversational behaviors on the support group wall, are not only hurting those that need the support the most, but are also leaving a bitter taste in many mouths for the National Multiple Sclerosis Society as an organization. The organization that has always been the champion for our health & well being, along this road with us.
We are calling upon the NMSS to REFORMAT the FaceBook Support Group, to ensure a healthier atmosphere for all members. To rekindle the atmosphere of previous days, where support, friendship and common ties bound us to one another for the greater good of our community. An atmosphere where all, new & old members, worked together as a team to have our voices heard & respected. An atmosphere where we ALL felt VALUED, PROTECTED & SAFE. A soft spot where we could, with relaxed comfort, spend time with others just like us. To ask advice questions from our peers, with their experiences of knowledge. An atmosphere where we could also help those in need, with our experiences. A place we could with comfort cry, on someone's shoulder. Hold the hand of a friend in need. A place we could encourage, motivate & cheer on others.
Over the last year the support group has become a scary & hurtful place, with many of our friends & family members leaving. Members that were mentors to many, with their years worth of very helpful educational support & love. The topic of CCSVI/Liberation, is the most controversial topic within the MS community. It has divided positive attention on our common goal...longer, healthier lives with sustained mobility. This controversial topic has divided the medical professionals & researchers.....let it also not continue to divide us the MS PATIENT.
The Movement for Truth Campaign is calling on the NMSS to make immediate format changes to the Facebook Support Group to support a more positive atmosphere with the following suggestions.
CCSVI, while in clinical trials, should be watched and reported on. But seeing how it is being used as spam and elicits such a passionate response from others, we believe a workable solution should be reached.
**Make a separate discussion tab just for CCSVI. This would keep the arguments off from the main wall and still allow people to post and view information. This will also give a "highlighted" area to the topic. Deleting any CCSVI topics, comments or links off of the support wall, as a detergency from heighten passionate debates, for a more suitable area.
Warn and then ban (if necessary) anyone who promotes the following claims:
1) That all drugs are poison. This will only scare the newly diagnosed that are just starting a drug therapy and adds further stress to those who have been on a drug therapy for years.
2) Conspiracy Theories: Big Pharma, Neuros and the NMSS are trying to keep people sick to make a profit.
3) Any post to "Boycott the NMSS" for misuse of funds. Nor any reply comments that suggest the same. Anti-NMSS comments need to be banned, If someone doesn't approve of how you run your organization, then they do not need to be there. They have the right to their opinion, but they should not have the right to post it on the NMSS site.
4) Miracle Cures. While the thought is nice, it is irresponsible to allow posts that make such claims. Once again, this preys on the newly diagnosed and desperate. While diets, exercise, acupuncture, CCSVI and others may relieve some symptoms, there is currently NO CURE FOR MULTIPLE SCLEROSIS.
5) A recalled and ban lift for all recent members that were banned for inappropriate behavior with the NMSS FaceBook group, as a fresh start, recommitting to new structural formatting and guidelines that will be respectful to all. Everyone deserves a second chance at support.
** We also suggest that a more strict enforcement of the rules and guidelines needs to be approached. Perhaps use of interns or volunteers who are not part of the Facebook NMSS community to help.
In conclusion we look forward to an open, honest & healthy conversation about the current needs for a more positive atmosphere. We look forward to getting back on track with a unified team approach to awareness of Multiple Sclerosis and future funding to lead to a possible CURE. We hold great respect for the NMSS , for the past & current contributions that your organization has given to our cause...we look forward to a brighter TODAY & TOMORROW of growth with the NMSS.
We are calling upon the NMSS to REFORMAT the FaceBook Support Group, to ensure a healthier atmosphere for all members. To rekindle the atmosphere of previous days, where support, friendship and common ties bound us to one another for the greater good of our community. An atmosphere where all, new & old members, worked together as a team to have our voices heard & respected. An atmosphere where we ALL felt VALUED, PROTECTED & SAFE. A soft spot where we could, with relaxed comfort, spend time with others just like us. To ask advice questions from our peers, with their experiences of knowledge. An atmosphere where we could also help those in need, with our experiences. A place we could with comfort cry, on someone's shoulder. Hold the hand of a friend in need. A place we could encourage, motivate & cheer on others.
Over the last year the support group has become a scary & hurtful place, with many of our friends & family members leaving. Members that were mentors to many, with their years worth of very helpful educational support & love. The topic of CCSVI/Liberation, is the most controversial topic within the MS community. It has divided positive attention on our common goal...longer, healthier lives with sustained mobility. This controversial topic has divided the medical professionals & researchers.....let it also not continue to divide us the MS PATIENT.
The Movement for Truth Campaign is calling on the NMSS to make immediate format changes to the Facebook Support Group to support a more positive atmosphere with the following suggestions.
CCSVI, while in clinical trials, should be watched and reported on. But seeing how it is being used as spam and elicits such a passionate response from others, we believe a workable solution should be reached.
**Make a separate discussion tab just for CCSVI. This would keep the arguments off from the main wall and still allow people to post and view information. This will also give a "highlighted" area to the topic. Deleting any CCSVI topics, comments or links off of the support wall, as a detergency from heighten passionate debates, for a more suitable area.
Warn and then ban (if necessary) anyone who promotes the following claims:
1) That all drugs are poison. This will only scare the newly diagnosed that are just starting a drug therapy and adds further stress to those who have been on a drug therapy for years.
2) Conspiracy Theories: Big Pharma, Neuros and the NMSS are trying to keep people sick to make a profit.
3) Any post to "Boycott the NMSS" for misuse of funds. Nor any reply comments that suggest the same. Anti-NMSS comments need to be banned, If someone doesn't approve of how you run your organization, then they do not need to be there. They have the right to their opinion, but they should not have the right to post it on the NMSS site.
4) Miracle Cures. While the thought is nice, it is irresponsible to allow posts that make such claims. Once again, this preys on the newly diagnosed and desperate. While diets, exercise, acupuncture, CCSVI and others may relieve some symptoms, there is currently NO CURE FOR MULTIPLE SCLEROSIS.
5) A recalled and ban lift for all recent members that were banned for inappropriate behavior with the NMSS FaceBook group, as a fresh start, recommitting to new structural formatting and guidelines that will be respectful to all. Everyone deserves a second chance at support.
** We also suggest that a more strict enforcement of the rules and guidelines needs to be approached. Perhaps use of interns or volunteers who are not part of the Facebook NMSS community to help.
In conclusion we look forward to an open, honest & healthy conversation about the current needs for a more positive atmosphere. We look forward to getting back on track with a unified team approach to awareness of Multiple Sclerosis and future funding to lead to a possible CURE. We hold great respect for the NMSS , for the past & current contributions that your organization has given to our cause...we look forward to a brighter TODAY & TOMORROW of growth with the NMSS.
Below is the formal letter that we sent to the NMSS Social Media Coordinator and the Corporate Offices.The brief response that we received (via e-mail) was no more than the standard "form letter" that is sent with any complaint or group guideline abuse. No attempt was made by the NMSS with communication that they were even willing to talk further with us about our concerns or suggestions.
We now ask our fellow NMSS FaceBook family members to stand strong & united with us, in our attempts to further the discussion with the NMSS. We want OUR support group returned back to us from the TOPIC and DRAMA of CCSVI/LIBERATION.
The Movement for Truth
TheMovementforTruth@hotmail.com
Moderator of the NMSS Facebook website,
We are writing to you with concern to the tone the page has taken. We feel some changes are in order to keep it a welcoming and supportive site for people with MS. CCSVI is definitely a hot button topic, which has gotten more and more heated recently. While both sides are at fault of the guidelines at one time or another, I think we can agree that it is the topic that is at issue.CCSVI, while in clinical trials, should be watched and reported on. But seeing how it is being used as spam and elicits such a passionate response from others, I think a workable solution should be reached. While CCSVI is the largest area that invokes argument, we will share some suggestions on other areas of concern also.
**Make a separate discussion tab just for CCSVI. This would keep the arguments off from the main wall and still allow people to post and view information.
** Warn and then ban (if necessary) anyone who pushes the following claims:
**That all drugs are poison. This will only scare the newly diagnosed that are just starting a drug therapy and adds further stress to those who have been on a drug therapy for years.
**Conspiracy Theories. Big Pharma, Neuros and the NMSS are NOT trying to keep people sick to make a buck. Big Pharma is not trying to stop any other study, nor are any doctors. Most doctors I have spoken with wait for trials to be over before forming an opinion.
** Miracle Cures. While the thought is nice, it is irresponsible to allow posts that make such claims. Once again, this preys on the newly diagnosed and desperate. While diets, exercise, acupuncture, CCSVI and others may relieve some symptoms, there is currently NO CURE FOR MS.
**Anti-NMSS. If they do not approve of how you run your organization, then they do not need to be there. They have the right to their opinion, but theY should not have the right to post it on the NMSS site.
We also suggest that a more strict enforcement of the rules and guidelines needs to be done. Perhaps use interns or volunteers who are not part of the Facebook NMSS community to help.
Please take this into consideration as the page is a good place for support and I would hate to see it close, like the Canadian sister page had to do.
Sincerely,
The Movement for Truth...
Sign PetitionSign PetitionWe now ask our fellow NMSS FaceBook family members to stand strong & united with us, in our attempts to further the discussion with the NMSS. We want OUR support group returned back to us from the TOPIC and DRAMA of CCSVI/LIBERATION.
The Movement for Truth
TheMovementforTruth@hotmail.com
Moderator of the NMSS Facebook website,
We are writing to you with concern to the tone the page has taken. We feel some changes are in order to keep it a welcoming and supportive site for people with MS. CCSVI is definitely a hot button topic, which has gotten more and more heated recently. While both sides are at fault of the guidelines at one time or another, I think we can agree that it is the topic that is at issue.CCSVI, while in clinical trials, should be watched and reported on. But seeing how it is being used as spam and elicits such a passionate response from others, I think a workable solution should be reached. While CCSVI is the largest area that invokes argument, we will share some suggestions on other areas of concern also.
**Make a separate discussion tab just for CCSVI. This would keep the arguments off from the main wall and still allow people to post and view information.
** Warn and then ban (if necessary) anyone who pushes the following claims:
**That all drugs are poison. This will only scare the newly diagnosed that are just starting a drug therapy and adds further stress to those who have been on a drug therapy for years.
**Conspiracy Theories. Big Pharma, Neuros and the NMSS are NOT trying to keep people sick to make a buck. Big Pharma is not trying to stop any other study, nor are any doctors. Most doctors I have spoken with wait for trials to be over before forming an opinion.
** Miracle Cures. While the thought is nice, it is irresponsible to allow posts that make such claims. Once again, this preys on the newly diagnosed and desperate. While diets, exercise, acupuncture, CCSVI and others may relieve some symptoms, there is currently NO CURE FOR MS.
**Anti-NMSS. If they do not approve of how you run your organization, then they do not need to be there. They have the right to their opinion, but theY should not have the right to post it on the NMSS site.
We also suggest that a more strict enforcement of the rules and guidelines needs to be done. Perhaps use interns or volunteers who are not part of the Facebook NMSS community to help.
Please take this into consideration as the page is a good place for support and I would hate to see it close, like the Canadian sister page had to do.
Sincerely,
The Movement for Truth...
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