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Psiloscribe

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Everything posted by Psiloscribe

  1. Here is a little Christmas/ Holiday gift to everyone that has been working so long at Clusterbusters to move our work forward. Another important step in our work has been taken and we’ve been published by a very well respected medical Journal and now available online at one of the most widely referenced medical publishing sites. Getting this information not only published but made available through this outlet is a testament to the fine work completed by our team of researchers at Yale University, Dr.’s Schindler and Gottschalk and the late Dr. Sewell, the Clusterbusters Medical Advisor
  2. Our Clusterbuster conference is only a couple weeks away!! For those of you that aren't going but would like to say hello to the group, you have a chance. Some of you have already sent us your videos but would like more and let more people participate. We're looking for a short (under a minute is fine) hello. Content is up to you but we're looking for you to say hello, your name, where you're from (Country, state, city ??) if you have clusters or are a supporter, and just a little hello message. Maybe your whole family wants to say HI. If you just want to use your screen name, that's fine.
  3. Sorry I'm just getting to this Hoss. We do not have a confirming email on the registry. If it had not gone through you would have been notified. If you'd like to PM me your name, I can check to make sure for you. You may have already received an email regarding ongoing studies by now. Thank you very much for taking the time to register. The registry has been very helpful already in helping move research and clinical studies forward. Bob
  4. Yes Moxie, I like it a lot. I may print it up or display it at the conference in some way if you don't mind. Let me know how'd you'd like me to attribute you as the author if it's ok with you. You can do that in PM or here, whatever you'd like. Bob
  5. This thread is for people with questions on the hotels and/or if people want to start chatting about possibly sharing rooms. We will post updated information on the hotels as it comes in, on this thread. Please keep discussion here to just lodging questions and inquiries. Won't be long now!!! Bob
  6. I've opened up this separate thread so people that are coming to the conference can discuss transportation once you get here and maybe share some rides. Please just post in this thread about transportation so people looking for rides don't get lost in other discussion topics. Please don't hijack the thread. Go ahead and post your arrival times and which airport and maybe people can share a cab or meet to share the same shuttle. People coming into Midway will have a trip to get up to the hotel. If we can bunch up a few people we might be able to help find a ride or you can discuss meeti
  7. We should be posting at least a tentative schedule very soon. Thursday evening is the Presidents Reception for everyone to say hello as they get into town. Friday and Saturday are both full of presentations from 9am to 5pm I don't know that I would book the trip based upon seeing one or two speakers on any particular day. Things have a way of changing at the last minute with doctors changing flights or asking to be moved because of changes in their schedule that they can not control. Bob
  8. I honestly would not doubt that CHSG is behind this. We've had the account for over a year. We've received checks from them. its not like the account was never operational. Grr.....
  9. Hello Happymeal, Glad you found us and hope we can help. I hope you were able to get a script for 0xygen on your last trip to the doc. I don't know how much information on treating clusters has gotten to the medical establishment in Japan. But even if it's as current as here in the US, there are still many doctors that don't they should be prescribing 02 before anything else, let alone know how to prescribe 02 properly. Stick with it until you can get it and educate as many people on it as a treatment as you can. It will help others along the way. As to the other issues, we have a lot of i
  10. Denny, Yes we have some bugs to work out but stick around and give us a hand. It's a process just like MM treatments. Takes a little while to get it right and work out the kinks (and members OF the Kinks) But it's all worth it. Bob P.s. Answered from my phone.
  11. Thank you. Yes this is huge for everyone with cluster headaches. It is finally a first step in something that others will now be interested in working on cluster research that will hopefully lead to a cure and not just more ways to try and treat symptoms. I want to thank everyone on this particular message board for years of hard work and dedication to helping others. This has grown from a small private group on yahoo to being able to hold conferences that doesn't have enough time in the schedule to fit in all the doctors that wish to speak to our group. To all those that have spent s
  12. You are hearing it here first. Clusterbusters is very happy and excited to announce the opening of a very important research study into the genetics of cluster headache. This study is currently recruiting people for possible participation. This study is a collaboration between Clusterbusters, Dr. Robert Shapiro, University of Vermont Medical Center, Dr. Guy Rouleau and McGill University. We are looking for individuals who have received a diagnosis of CH from a doctor, who have at least one immediate family member who also has received a diagnosis of CH from a doctor to participate in t
  13. Yes Marc, The domain that OUCH US used for thousands of their links has been now redirected to this other site. Anyone that saved a link to a research paper or information on everything from 02 to employment support papers now have a link just to his site. Clicks are worth dollars. Bob
  14. Sorry the embedded link doesn't copy/paste well. Here is the long link: https://clinicaltrials.gov/ct2/show/NCT02438826?term=NCT02438826&rank=1 Pixie, did you check the list of sites that will be open in the US? Is there one on the list close enough? Some on the list aren't yet open for recruiting. If a site opens for people that have been told there isn't one near by, you will get an email notice if one opens up. If everyone checks the list and sees one that you are willing to travel to even if your response says there isn't one close enough, let me know. I know people. My peop
  15. Additional details on the chronic cluster headache study is available on clinicaltrials.gov (click here for ClinicalTrials.gov identifier NCT02438826). You will receive another communication from Clusterbusters in June when enrollment for this clinical study begins. At that time, if you are interested in participating in the study, you will have the option to complete a questionnaire to help determine whether you may qualify for the study. Bob
  16. Update: First off, this is the latest release. Posting it here so it's a record in this thread and in case people didn't catch it in the others. Subject: Eli Lilly NOW Enrolling Episodic Cluster Headache study Eli Lilly has recently informed Clusterbusters that they are now enrolling patients with Episodic Cluster Headache into their clinical study. Many of you likely reviewed the details on clinicaltrials.gov. For more information and to pre-screen for this study, please click on the link below or dial the toll free number. If you pre-qualify for the episodic cluster headache study b
  17. We enrolled our first patient already and he will begin participating next week. I can say we because it's a Clusterbuster Clusterhead. A couple of answers to some questions that have come up. The Chronic study is set to begin recruiting patients in the beginning of June. Clusterbusters will let everyone know when it goes live on clinicaltrials dot gov If you have been pre-approved already but were told that there was not a study location near you, that may change and you will be contacted. If you check the listing of site locations listed on clinicaltrials dot gov and scroll far right,
  18. Subject: Eli Lilly NOW Enrolling Episodic Cluster Headache study Eli Lilly has recently informed Clusterbusters that they are now enrolling patients with Episodic Cluster Headache into their clinical study. Many of you likely reviewed the details on clinicaltrials.gov. For more information and to pre-screen for this study, please click on the link below or dial the toll free number. If you pre-qualify for the episodic cluster headache study based on the initial questionnaire, your information will be provided to a physician and you will be contacted for further evaluation. This study is
  19. Yes OUCH US turned over all assets to Clusterbusters when they closed shop. The domain was being handled by someone else while we were transferring files. The domain came up for renewal and was taken over by a guy that was more interested in getting "clicks" for his website than helping people. He knew that a lot of people had saved links to the OUCH site so every time someone clicks to read an old article or information, they get to go to his site. Clusterbusters is in the process of going thru all the old files and removing these links so people can find the information they are lookin
  20. The Lilly trial is NOW recruiting. Subject: Eli Lilly NOW Enrolling Episodic Cluster Headache study Eli Lilly has recently informed Clusterbusters that they are now enrolling patients with Episodic Cluster Headache into their clinical study. Many of you likely reviewed the details on clinicaltrials.gov. For more information and to pre-screen for this study, please click on the link below or dial the toll free number. If you pre-qualify for the episodic cluster headache study based on the initial questionnaire, your information will be provided to a physician and you will be contacted fo
  21. 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 psychedeli
  22. Looking forward to seeing you in September Professor. I hope you decide to come Moxie. We have someone coming from Norway and Scotland and I think we need to fill out the United Nations of clusters. Bob
  23. Hello everyone I received the following email earlier today: To whom it may concern: With a very heavy heart and sadness I have to tell you that Mark Hillaby has passed away on January 5, 2015. He suffered from COPD and flu complications along with a mild stroke took him away from me after a short stay in the hospital. He was a man who loved life, his friends and contributions to the life of others such as the Cluster Headache study he helped bring to life. This email was from his wife. For those that don't recognize the name, Mark Hillaby, it's ok. Old-timers will remember him as
  24. Batch, Thanks for your comments. Let me say a few things. First of all, let me tell you that I feel your frustration regarding getting people to listen about D3. You've had it easy though. You've tried to get people to listen about a vitamin. Try getting the same doors slammed on you while trying to explain that a schedule one drug (psilocybin, LSD) is safer and more efficacious than anything on the market. ;-) I can assure you and I'm sure you understand from my own stance and that of Clusterbusters, that we have always had the same skepticism and issues with Big Pharma. I've taken
  25. Latest update. You are hearing it here first. Subject: More details available on Eli Lilly clinical study Clusterbusters has been informed by Eli Lilly and Company that additional details regarding their clinical study in patients with episodic cluster headache have now been posted on clinicaltrials.gov. (see below for website). Please note that investigator sites (doctorÂ’s offices conducting the study) will continue to be added to clinicaltrials.gov as they become approved by ethics committees over the next few months. You will receive another communication from Clusterbusters (late A
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