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Psiloscribe

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Everything posted by Psiloscribe

  1. Psiloscribe

    Madrid?

    Thank you Spiny. I know we've had a few members from Spain over the years and it seems it is a difficult place to get good treatment for many. Bob
  2. Moxie, I appreciate your desire to spread the word on this. That is what we are trying to do with our Advocacy work. There are about a dozen FB groups for cluster headaches. I'm sorry but I dont believe we should edit our work or the reports of our work so that they will conform to the rules of a group that censors what people can be told about clusters, treatments or what we are doing in Advocacy, Education or Research. The full report is available to everyone from the official Clusterbusters Facebook page as well as other places. There is also a FB page for the Alliance for Headache Disorders Advocacy. I am very proud of the work done by Clusterbusters and every cluster headache sufferer and supporter that went to DC and don't think we should have to edit out ANYTHING. So if you'd like to post a short description of the report or what the Alliance does and then put a link to the full report, I'd be happy to see it and "share" it. There are larger FB groups for clusters. "Cluster headaches" has almost 2500 members. We post as much as we can to reach ALL the cluster people out in Facebook land. We try our best to give some hope for a better future to ALL cluster people. "Like" us on: https://www.facebook.com/#!/clusterbusters :-)
  3. The "Cluster Stories" booklet is a work in progress and I am always adding to it. It is what we asked people to add to for the HOH trip. We are still accepting additions so anyone wanting to get their story written up, please send it to me in email. psiloscribe AT yahoo DOT com. I know its difficult for many but here is what I would like you to include. its important to keep it concise. We are trying to grab attention with these. its not for people to get compfy and read in bed. We use it in advocacy situations where people can read one or two and WANT to read the rest. So......keep it 500 words or less. Focus on how clusters have affected your life. Financially, emotionally, jobs, relationships, suicidal ideation etc. These help people organize their thoughts for the HOH trips and also when you are interviewed or questioned.... If you had 3 minutes to state your case for the need for increased research, eduaction etc.... We know what clusters are....we want ot know what clusters have done to your life!! As to the booklets, yes they will be available at the 2013 Clusterbuster Conference in Sept. They are not currently available to be read anywhere else. We will put it up on our website when we get it to a stage and format that it will workable. Bob
  4. An expanded report and update! Psychedelic Science 2013 MAPS This conference was attended by Bob Wold, President and Kim Robbins, Trustee. On April 18th through the 21st, Clusterbusters attended the MAPS conference in Oakland Ca. This conference allowed us an opportunity to accomplish a great deal in all of our missions. Education of the all layers of the medical community, from doctors and nurses to administrators, as well as all others in attendance regarding cluster headaches. Advocacy for increased research funding, improved treatment plans and visibility of a condition that needs more attention from all fronts. Make known not only the need for but the opportunities available for research that will lead to meaningful improvements in the lives of hundreds of thousands of sufferers and their families. Among the 1800 people at the Psychedelic Science 2013 MAPS conference we attended were hundreds of MDÂ’s, PhDÂ’s, the very best of the worlds researchers (33 countries represented), University administrators, famed authors and news outlets. The Clusterbusters information table was a HUGE success! We were approached throughout the conference with questions, requests for additional information, and handshakes of congratulations for our advocacy and progress in the medical field. Before the end of the conference our table was completely wiped out of brochures (explaining the mechanisms of cluster headaches, the impact upon the lives of the families that live with them, the desperate need for research), printouts, and our very first edition of "Cluster Stories". ("Cluster Stories" is a booklet of first account descriptions from clusterheads who struggle, survive and inspire. These stories touch readerÂ’s hearts and compel them to want to learn more. Thank you to everyone that provided us with their heartfelt personal stories. We understand the difficulty in putting such personal information in writing and appreciate all your contributions. They may be personal stories but they do speak for hundreds of thousands of families living with cluster headaches. Please, keep your stories coming so we can add them to our next edition!) All of this in addition to the presentations that focused on cluster headaches & Clusterbuster research made a lasting impact upon attendees. Dr. Torsten Passie presented an update on BOL-148 and educated the attendees on cluster headaches. No longer are we a community that is alone, looking for help from within and struggling to get the attention of others. Our voices are being heard! We are being approached by people that can help - coming to us asking what can be done, willing to get involved, and eager to tell others about cluster headaches. We had quite the quick turn around from our trip to Washington DC for our participation in the Headache on the Hill event. (Check out the report on our success while there) This trip to Oakland though may end up being one of our most successful trips to date. The incredible array of top researchers, Research foundations and top names throughout all areas of the medical community offered a wealth of opportunity to meet people interested in helping people with cluster headaches find better ways to treat the condition as well as live with it while we find better treatments. As those of you that have followed us along the way and/or attended our conferences, we have always looked at the need to treat the family living with clusters and not just the person with the clusters. This is a condition that affects every corner of every home where it exists. For these reasons we have always looked at not only the physical aspects but also the psychological aspects of cluster headaches. The confluence of experts gathered in Oakland this weekend came to us, each offering help in their fields of expertise. I can give you some details of some of the discussions that are now underway and at various degrees of progress. While in Oakland, work was progressing on a study being done on Clusterbusters and cluster headaches at a major East Coast University. Information has been transmitted to the IRB and the all permissions granted to move this particular study forward. We will be in need of people willing to participate with interviews in this study Preliminary talks have begun on four additional studies, all as a direct outcome of this conference. One in the US, that would be studying cluster headaches, an effective treatment of clusters and the affects of PSTD and clusters. Two in the UK : Work has begun on collection of data and information for the purpose of possibly setting up a trial of new therapeutic agents. Secondly, preliminary discussions are ongoing at a major institution regarding a study with a drug now in development. WeÂ’d be looking for people in the UK for participation in both of these. These do take time to get going but please keep your eye on these if you are in the UK. and one in South America: This comes from a meeting that Kim and I had with a psychologist from Lima Peru. He has proposed a study in Peru with a Neurologist that he works with there. We are in the data collection stage at this point. All of these would be studying different areas of cluster headaches and different treatments. As details can be released, we will certainly keep everyone apprised as to the progress. We hate to tease with so little information but the researchers, their institutions and the projects themselves need to be protected throughout the process. There will be not only an opportunity for people to participate but a need for people to take part in making these studies possible. Please stay tuned. A more full and up to date report will be available at our conference in September. The trip has also already produced a couple of radio interviews along with numerous inquiries regarding news articles and stories. I was recorded for a radio interview last week and Billy and Becky were interviewed also for the same media outlet. I will let you all know when that is put together and aired. This will end up being more than just an interview. This is a story being put together for airing that talks about clusters, Clusterbusters and all the work weÂ’ve been doing. Not just the research but all the education and advocacy work including Wash DC etc. Anyone else in the New York area that might be interested in being interviewed should contact me. We have come a long way! Every worthwhile journey takes enormous energy, endurance, and many, many steps. This has been one long relay race that is gaining ground due to the performance of numerous runners. Thank you all again for every bit of help - your efforts in speaking out to others, your contributions to our conferences, website, and message boards, and your donations which enable our non-profit to continue. Very importantly, thank you for your confidence that we can and will succeed! All of us at Clusterbusters are keenly aware of the responsibility we have to everyone that have had cluster headaches invade their lives and to those that will surely follow. As the medical community, governmental agencies and others that can help us come forward or answer their doors when we come knocking, we take these opportunities very seriously and will continue to do what we can to promote progress. We have grown to a large, vocal group, well respected in the medical community, which is being listened to because of the perseverance of so many people over the years. Bob Wold 5-28-2013
  5. Very true Potter but because they quickly realize the difficulty and complexity of the project. A few things I can add to the great info already posted. (thank you all) 1. Yes, the patent had nothing to do with the fallout.....I was there ;-) 2. There was a LOT of early lab/clinical work using BOL in humans. Most notably in migraine among others. By early, I mean, 1940s, 50s. There is plenty of safety data. Again much of it so old that its not acceptable to the FDA. Another one of those roadblocks..."You haven't done any recent safety trials.......no you can't do any safety trials" 3. Yes, the process of manufacturing BOL is complicated and expensive and if you were to ever be able to get any from a research lab, I would not ingest it unless you also have a mass spectrometer and a couple hundred thousand dollars worth of addition testing equipment in your basement.....and know how to use it. As noted above, some of the reagent materials are very dangerous and if you can't test purity, you can't be sure of safety. 4. As noted, LSD is rather "dirty" (yes that's a scientific term not a reference to 50 Shades of grey" ;-) It has a habit of being attracted to a wider range of receptors than would be helpful in determining its course of action for clusters. It may be a clue that BOL is blocked from some of these same receptors and still effective so if we get to do research on these differences, we may be able to zero in on where we really need to concentrate. 5. See number 2 as to why we were able to give it to humans in Germany. 6. I appreciate everyone's interest in this. It builds interest in the scientific community. It emphasizes the need for research and continues the conversations in the halls of academia. Who knows, maybe someone will get so pissed off about all the talk about psychedelics will get off their asses and develop something better just to prove a point. Do I care? No? I just want SOMEONE to find something that works. Something that doesn't destroy or bodies while doing very little to help with the clusters. Something that doesn't require a lifetime of wires in the brain and battery packs like freaking energizer bunnies. 7. There are some very good and very dedicated people working on this. What is driving then is empathy for our condition. hey understand the suffering. Many of you know the feeling you get when you know you've helped even one person with this disease. Consider how you'd feel walking out of a lab knowing you've helped hundreds of thousands and generations to come. 8. After being in DC and Oakland these last two weeks, I have renewed confidence in number 7. Bob
  6. A big thank you to everyone that helped make this trip such a success. i will be posting a full report here and on the website as soon as I can get it all written up. There is a lot to report on. Just the first of many thank-you's to Cindy for doing so much prep work and amazing work while in DC. Someone mentioned it was a little like herding cats and I agree. ;-) Thank you Cindy for not only all the work but also for keeping the motivation and determination levels high throughout the event. Clusterbusters pulled together a strong contingent of advocates that comprised a full 25% of the delegates in attendance. Once again they were all inspirational to the group as a whole and their determination made evident to all the representatives they met along the way. Thanks to our group, and John Bebee in particular, we were able to make contact with some of the most influential people in Washington. The very ones we need to hear our voices and are able to take action on our behalf. Our 'asks" involved the National institutes of health, the Social security administration and the V.A. All of the other meetings our advocates held with their reps made our needs known and will help bring the changes we all need. Thanks to everyone that attended, everyone that helped fund this mission and everyone that has supported us along the way. Bob
  7. In a little over a week, approximately 20 people representing those with cluster headaches will be ascending upon Wash. DC to have our collective voices heard and actions of support carried out. Thanks to those voluntering to travel with us and the moral and finacial support of others, this is about twice as many as last year. We expect twice the results. To anyone wondering if our congress will be listening let alone acting on our behalf, I offer you this message from Dr. Robert Shapiro, President of the Alliance for Headache Disorders Advocacy. The group we are joining in DC again this year. "Because of last year's HOH, research funding to study chronic migraine and post-traumatic headaches are now available through the Department of Defense." One of the very few areas where the government had allocated any research funding into headache disorders of any type, was the Defense Department of all places. This research funding covered TBI (traumatic brain injury) which is a common cause of the original triggering of cluster headaches. Very important research for everyone. Research that can eventually lead to discovering the root cause of cluster headaches. An important step in finding out how best to treat clusters and it's cause. An important step in finding a cure. The reallocatment of these funds was one of our primary 'asks" last year and we were successful in getting this funding reinstated. Not an easy task in this time of budget cuts. Everyone that joined us last year should be proud of this accomplishment. As of today, 79 participants from 31 states will be visiting approximately 140 congressional offices on April 9th. We will be hitting the "Hill" with new requests that are important to everyone with Cluster headaches, Sufferers and supporters, family and friends. Its not easy to take time away from work and family but this is an amazingly dedicated group. Inspired because they know they can make a difference for not only themselves but for hundreds of thousands of families that live with Cluster Headache.. Wish us luck! Please share this where appropriate as a thank you to those that went last year and as support for those returning this year. Bob Wold (edit by FG to correct font errors)
  8. Psiloscribe

    What would u say to Congress????

    Hello From DC, Just letting everyone here know that you have an incredible group of people here representing you all. We've spent the day gettig ready to make our voices heard. This is one motivated group.... And dont tell him I said so but......John Bebee is the star here. ;-) I'm proud of this group and the turnout from the cluster community. Give you all an update soon!!! Bob
  9. Psiloscribe

    Website Updates

    There have been some important updates to the new website. I would like to thank Doug Wright (Fun Guy) for all his hard work on getting the website up and running. He has spent an extraordinary amount of time on the site. I hope you all check out and share the following pages whenever you can. We have added a large section on the "About Us" page that explains all the different areas we are involved in and will help explain that we aren't just "those mushroom people" ;-) Thanks to everyone that has helped us expand our footprint in cluster research, education and advocacy. http://clusterbusters.com/?page_id=24 We have a new comprehensive oxygen page and thanks to Jerry (CH Father) it is the best 02 page available. Please check it out and share it when people are looking for 02 information. http://clusterbusters.com/?page_id=77 Resource pages have also recently been re-vamped and specifically the newly updated doctor list Thanks very much to Bill Mingus for all the work pulling this together and keeping it updated. Also thanks to OUCH for allowing us to build upon their list. http://clusterbusters.com/?page_id=455 Besides the people mentioned above, there are many people doing an incredible amount of work keeping CLusterbusters growing and expanding our reach. Thank you all very much. Bobw
  10. If you are bringing someone with you on the trip and they are going to be going with you to visit the offices on the Hill, they MUST be registered with the Alliance so that their names appear on the appointment lists. They will need badges as supplied so please go to the Alliance site and get their names listed A S A P. Thank you The Management ;-)
  11. Thanks to everyone that is either going with us or has supported this event along the way. We have in excess of 20 clusterheads going to DC in April. We will strive to be the voice for everyone with clusters and making a case known on several issues. Bill, we'll be getting updates out to everyone that is going very soon. You and eveyone registered will be hearing from both the Alliance and CB as we set plans. Bob
  12. An update on this subject. it is something that we have discussed and worked on previously. Building, marketing, purchasing, design and inventory of a "store" is a large undertaking. it has to be to be done in a way that shows a profit and not a waste of any valuable financial reserves. That said, something like CafePress is one way to go. It does still take a lot of time setting it up to offer the right items, design logos, styles etc. Volunteer time has to be used wisely therefore any undertaking has to be "worth it" so to speak. I have spent quite a bit of time setting up a store at Cafepress prior to this topic arising again. it has been "in the works" but never finalized. One reason was making sure of logos that would be around a long time. So, much of the groundwork has been done. I do believe that it is a good time to get it done and operational. I appreciate those that have offered to help in this regard. There are a couple of people that that are involved in this already. I will speak with them and we will get going on it as soon as I get back from DC in early April. I will then followup with those that are still interested in helping out. Thank you all for looking for ways to expand our organization. The only way we've been able to grow as much as we have and been able to accomplish what we have, is by people stepping up and lending a hand. Even if Its just a matter of supporting our efforts, engaging others that need help, and giving life to our efforts and programs. Thank you all, Bob
  13. Psiloscribe

    Asking for permission

    Thank you for asking. Yes we would be happy to have it translated and published. Will you be running it through a translator such as Google translations or doing it manually? We are also working with friends in Finland and Sweden regarding the best way to get these pages translated and available. Please just give the proper credits and also a link back to the original. Also please give a link to your version here. We may want to link to it in our webpages. Bob
  14. Clusterbusters has been officially accepted as a full member of the (ADHA) Alliance for Headache Disorders Advocacy. http://www.allianceforheadacheadvocacy.org/who_is.htm We believe this is a big step forward for Clusterbusters. Our admittance into the Alliance, which consists of some of the most prestigious cluster and headache specialists and organizations in the U.S., signals a willingness and desire of mainstream medicine to work alongside Clusterbusters. I would like to thank all the people that have worked so hard over the years to make this possible. We have certainly come a long way. I would also like to specifically thank all the people that traveled with us and the Alliance to Washington DC this year. Everyone represented Clusterbusters and cluster sufferers everywhere, in a professional manner while displaying both passion and determination in their advocacy efforts. We think this is an excellent opportunity to work with the Alliance and itÂ’s member organizations as well as some of the individuals to find new ways of helping cluster sufferers everywhere. Thank You Bob
  15. Psiloscribe

    Harry Potter and Clusters

    Its not often, if at all that a celebrity admits to clusters.... How will Daniel Radcliffe's fans react to his latest turn - as a ... The Independent "I was in the middle of these weird things called 'cluster headaches'," he explains. "It's very rare evidently, but it's exceptionally painful. http://www.independent.co.uk/news/people/profiles/how-will-daniel-radcliffes-fans-react-to-his-latest-turn--as-a-damaged-drugtaking-beatnik-poet-7848568.html Bob
  16. Psiloscribe

    Trouble logging on?

    Thank you Lee Ann. There is someone having trouble. Hopefully it can be worked out. Bob
  17. Psiloscribe

    Trouble logging on?

    Hi folks, has anyone else had any trouble logging into your account when using an Apple device through ATT? IPhone trouble? have had a couple of reports and just wondering if anyone else is having a problem. if you are using Apple and ATT and not having any trouble, THAT would be good to know also. ;-) Bob
  18. If you're an Ebay seller, it's easy (and FUN TOO!!! ) to donate a portion of your sales to Clusterbusters. You determine the percentage of sales to be donated on each item. Clusterbusters is a certified non-profit with Ebay http://www.missionfish.org/ Mission Fish supplies all the necessary tax donation receipts. A couple of our members are already using this method. Thanks, Bobw an equal opportunity provider of donation alternatives ;-)
  19. Psiloscribe

    Ebay ! MissionFish

    MissionFish is now PayPal Giving Fund 100% of every donation will reach the nonprofits we serve. Since 2003, MissionFish has been dedicated to helping nonprofits create new sources of unrestricted revenue by making it easy for people to give as part of their everyday life. In the nine years of partnership with eBay Inc., we have helped generate over a quarter billion dollars for nonprofits through the eBay Giving Works and Donate with PayPal programs. Throughout this incredible journey, we have constantly looked for ways to improve our service and expand our impact. In 2011, eBay set up a new nonprofit organization – PayPal Charitable Giving Fund - to operate MissionFish and help further our charitable purposes. Since that time, the technical and operational support of eBay’s family of businesses has helped us realize unprecedented success. Today, we are thrilled to announce a significant new commitment from PayPal that will have a tremendous positive impact on our efforts going forward. PayPal’s financial support will enable us to deliver 100% of every donation we process globally. And, it is only the start of greater things to come. PayPal will be investing in further enhancements to our platform so that we might leverage the incredible benefits of their technology and payment systems to inspire and enable more giving around the globe. To reflect PayPal’s incredible commitment to our organization, and our common vision for inspiring and enabling more giving around the globe, we are officially changing our name to PayPal Giving Fund. We look forward to continuing our service to your organization under this new name. Please note that we have updated our Nonprofit User Agreement and Privacy Policy to reflect these changes. Otherwise, your day-to-day site experience will remain unchanged, and you'll get monthly payouts just as you do today. If you have questions, please contact our Community Care team.
  20. I'll be there even if I have to put gas in my car. ;-) Looking forward to seeing Moxie and Jeff, and everyone else. Bob
  21. Psiloscribe

    Carl Is Dead

  22. Psiloscribe

    Carl Is Dead

    I have to say, this saddens me greatly. Although there have been many people in the UK that have worked hard against all the roadblocks to get help for people, and to make information available for people, no one worked harder and longer than Carl. And Yes, Phil was right there alongside. No one stood up for the rights of people to get information and make up their own minds, than this man. When it was impossible to get the info out to the masses, he took it upon himself to get it to those that were seeking help, personally, one at a time. A man that was not afraid to make enemies if thats what it took to help those that needed it. I also just heard from him shortly before Christmas. I am shocked by this and I'm sorry Phil, that you've lost such a great friend. This is Carl RIP my friend. We truly have lost a cluster hero. OK, so I had to edit this already. Still don't know all the right words but when I posted it, I noticed the MLK quote on the bottom of my post. It seemed to fit him perfectly. I will leave it at that.
  23. [imghttp://i23.photobucket.com/albums/b392/psiloscribe/100_1062_0101-1.jpg][/img] #1 #2 #3 #4 #5 #6 #7 #8 #9 #10 #11 #12
  24. Psiloscribe

    Happy New Year to everybody !

    Happy New year everyone!!! I give you the words of the Dalai Lama "Along with love, compassion is the face of altruism. It is a feeling from deep in the heart that you cannot bear othersÂ’ suffering without acting to relieve it. As compassion grows stronger, so does your willingness to commit yourself to the welfare of all beings, even if you have to do it alone. You will be unbiased in your service to all beings, no matter how they respond to you." Thanks to all here that practice what he teaches. Bob
  25. Psiloscribe

    Vibration technique

    I like the vibrator idea. Years ago I used a professional model hand held massage machine. It had springs that wrapped around the palm of my hand to hold it in place and sat on the back of my hand like a power pack. I got it from my chiropractor. I remember it helping a little. I think you will find the 02 much more help though. At least I hope it works for you. Skullcap on the other hand.... It is supposed to be used WITH any of the psychedelic treatments. Not as a treatment by itself. It does help with the anxiety that sometimes hits people when using the psychedelics. Some people say it works wonders in making the dose much more relaxing. For anyone looking for a natural form of valium......try skullcap tea. Helps some people relax, others use it as a sleep aide. Bob
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