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Showing content with the highest reputation on 12/08/2019 in all areas

  1. D'K, What you are saying is not sensible. There is no one person here who has some kind of huge following that could produce the results you say you want. You post what you have learned, one person at a time tries it (or doesn't), they report on the results, and that either inspires others or doesn't. Why would you not want to help just one person, if that's all you reached? And very few people here have the clout with a doctor to get an off-brand prescription. This site was created because one person tried an alternative treatment that probably 95% of people with CH ridiculed and/or attacked. He put it out there, and some other people tried it, and it worked for them as it had for him. They really did have to "BELIEVE," to use your word, because it involved obtaining and consuming illegal, hallucinogenic substances. Whatever you have to offer has much better odds of being tried and adopted than that did, if it works. So, I say with no real disrespect, you either have to put up or shut up. That's how it works here. I doubt that anyone is going to beg you.
    2 points
  2. I attribute my PF status to D3. Took time....more than I would have thought but it appears to be working....and has been for a while now. My personal, for what it's worth, recommendation is to have O2 set up and ready all the time.....a safety net. A good mask from clusterheadaches.com and a 25 lpm reg does the trick for many.
    1 point
  3. Forward this post to 10 of your friends or the "cure" will disappear forever.
    1 point
  4. Sounds like one of those "I'll only tell ya if you beg, plead and recognize me." type posts. I've seen many through the years. I know that if one of the many people I know with CH were to somehow stumble on to a real cure for this crap we have, they would be shouting it from the treetops. No one that lives with this shit would withhold information that could bring relief to others that suffer. The desire for personal gain causing a closed mind??? Here???? Seriously????? The fact the you even suggest such a thing shows how off target your sales pitch is. This place is a direct result of Bob's quest to help others. Because of that, many others here have spent far more than they'd care to admit trying to educate people on options, advocate for our collective and lending a helping hand when needed. To suggest a profit motive here of all places is beyond asinine....at best. I'd better stop here before I earn a posting vacation for my non-PC, obscenity laced tirade kicks in to high gear.
    1 point
  5. ....geeez....cut the drama and insults...put.up.or.shut.up...we will listen to anything...
    1 point
  6. Group, I began advocating for cluster headache sufferers and their families in 1998. I have been trying to help others with clusters even before that online. It started when the only "message boards were known as Newsgroups in the early days of the internet. Clusterbusters officially formed in 2002 and we had a private message board on Yahoo that was invite only and the main object of our work was to work together and refine the psychedelic treatments. We did our science homework, contacted doctors and researchers and anyone with any information on how to improve the efficacy of psychedelic treatments and make sure that everyone was as safe as possible. Since that time we have made huge strides in not only the treatments but in many areas of support and advocacy work for everyone with clusters. We've been able to help thousands of people that for the most part, had exhausted all other options. My presentation called Psychedelics or Suicide was heartfelt and true. Many people have made that decision and have stepped back from the edge. We have changed legislation. We have gotten the first pharmaceutical company in history to run a phase three study on a promising new treatment. We have the top headache specialists in the world attending our conferences. We have many physicians sending their patients to Clusterbusters. We meet with congress and the FDA. We've helped train the National Suicide Hotline operators. We've completed research that showed the efficacy of LSD analogs like BOL-148 We have done research on LSA We have research going on now at one of the top Institutions in the world regarding psilocybin and clusters. We have research starting in the next month on the genetics of clusters headaches. Most of this while overcoming 50 years of neglect and the impossibilities of researching schedule one drugs. Most of which we were told could not take place. When anyone is looking into research or new areas of treatments for cluster headaches, they come to Clusterbusters first. I could go on and on but let me just say that I doubt anyone could find another support organization that has and still relies entirely upon volunteers, that has accomplished more in this amount of time, for it's members. Members that don't even pay for a membership. We've never had paid memberships which could have helped pay for some of our work, because you need to offer something extra for paid members and we have always wanted to make sure that EVERYTHING was available to EVERYONE. We are an open source organization. We do not only help people that pay for the help. I write all of this for one reason. This message board has always been the most important part of what I have tried to accomplish and where all the hard work is done. This message board is responsible for saving lives and for all the accomplishments that have come along the way. I have entrusted this board to the administrators because they are some of the people I respect the most in the world. People that I know will protect the integrity and respectability that it deserves. I have poured a large portion of my life into not only this board but what this board represents. I would not entrust that to just anyone. Administrating a message board is not easy and it is a thankless job. To make a board like this successful and for it to last more than a couple of years is not an easy task. If not run correctly it can blow up and slip away. This board is more important than any one of it's members. It's existence needs to remain a place for someone that none of us currently know, to sign on when they are making that "psychedelics or suicide" decision. I understand that feelings get hurt. People have disagreements and have different ways of offering support. People need different types of support. We NEED people with differing opinions and we need people with strong personalities. This is not an easy topic to deal with. People aren't signing on here asking how often they need to water their rose bushes. All I ask is that everyone please respect the board, respect the administrators and respect each other. You all have an important role to play here. None of us can help everyone but together we can help more people than any one individual can. Clusterbusters has not been able to achieve all it has because of any one person. There are people here that have been helping others since 2002 and before. Every person that is helped is now helped because of all the work that has gone on for all these years and all the work that it has taken to keep this board open and the lifeline that it can be for people. The administrators of this board have done more work over the years than anyone here could imagine. Please, respect the board, respect the administrators and most importantly respect each other. Bob
    1 point
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