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Everything posted by Psiloscribe

  1. Psiloscribe

    Distressing News

    I received some terribly tragic news today that I'll share here because I know that some of the old-timers here will remember who the news is about. When Clusterbusters was just forming, I was contacted by the wife of a cluster sufferer. So I have known these people though email, postings & phone calls for about a dozen years. I am deeply saddened and downright distressed to say that I heard word today and confirmed this in news articles, that Jaques Dreyfus, known here and in the old yahoo group as Rex Tangle, took his own life and that of his wife, Heather. They were living in Portland when this happened a couple of weeks ago. News was being withheld because they needed to locate his family living in France. Heather was one of the nicest and most caring supporters I have met. Jaques, an accomplished musician always appeared to be a gentle and loving man. I am at a loss as to why this has happened. I probably never will be able to understand this terrible act and loss. Rex actually wrote a 10 song album for Clusterbusters many years ago. An instrumental set that was meant to be used as a peaceful background set for listening. One of the tracks was used for years on our old website. I'm sure some here remember listening to the tracks. I know some have the CD. I imagine the how and why isn't important. I do know that Jaques suffered greatly with clusters. He went through many of the same obstacles we all seem to traverse. I know he once flew home to France to have major dental work done in an attempt to "fix" his clusters. I know that when they moved, Heather called looking for help in finding a good doctor and help in getting set up with 02. She would always be the one reaching out for help for Jaques. Maybe that was part of the problem. Rex couldn't reach out for help himself. I guess that is one reason I'm even posting this. To let everyone here know that if you need help, reach out for it. You owe it to yourself and you owe it to your supporters. There hasn't been a person born yet that hasn't needed help at some point. Leaving it up to your spouse or other loved ones is not only not fair, but destructive to yourself and your relationship. Everyone here knows how difficult life can be. No one would ever think less of you for reaching out for help. Quite the contrary. Reaching out shows not only strength but a determination to make a better life for everyone involved. I know that Rex had some very close friends here and I hope they don't mind my posting this. Rex did his share of supporting others here. Sometimes it's easier to offer support than ask for it. If you're interested in checking out his website, this is the link; http://www.rextangle.net/bio.html R.I.P. Heather and Jaques! Bobw
  2. Psiloscribe

    On The News

    Hello Friends, Sorry I don't get here more often. Just getting my feet back on the ground following our trip to DC. We got a lot of great work done by "busters and others. This is the latest news story. Thanks go out to Kirt, Dr. Young and Ascot Media Group for helping with our press releases. http://www.wgal.com/health/video-cluster-headaches-cause-agony-for-sufferers/24677706 Bob
  3. Psiloscribe

    Lancaster PA

    Anyone near the Lancaster/York PA area? Want to be on TV? Let me know, Bob
  4. Psiloscribe

    Corporate Funding/Sponsorship for Research

    No Corporate funding for research at this time. Red Bull has been approached several times and they are not interested at all. Bob
  5. Psiloscribe


    I agree with Tony about what or who is behind this. That said, the page was a mess with a lot of bad information. Besides people not knowing clusters, but thinking they do, added a lot of bad info. One of the reasons for that is partly due to their rules. They will find very little secondary info on ANY cluster medications. There has been very little research and all but one drug is just a hand me down from other ailments and never tested in clusters. At least not "re-tested" This is partly due to the fact that when something starts working, and it has gone thru other safety testing, it isn't tested again. If it works, they use it. Take 02 for example. We have this same fight with Medicare and that's why we are going to DC. 02 has been the gold standard in cluster abortives for 60 years. but there is very little research for 02 and clusters that would fit Wiki's rules for secondary proof. You want more proof? Ask the hundreds of thousands of cluster sufferers using it. As we are telling CMS, it would be unethical for further testing. Do we really need to give 100 cluster sufferers placebo air and make them suffer so that Wiki, and Medicare are satisfied? They have to decide if they want a "helpful" article or just an article. Do they have secondary proof that the hypothalamus is involved? Or are all mentions of it based upon Goadsby's small study using MRI's? These types of rules are what cause people to suffer for years either without 02 at all or getting a script that says use 4-6LPM. Doctors using old or censored information. Most things people are using to help with their clusters have come around over the last 15 years and only through anecdotal information. From high flow oxygen to cluster masks to energy drinks. People getting their "help" from Wiki will be 15 years behind. Unfortunately, there are many people that put rules above suffering. Bob
  6. Dr. Larry Schor Conference Co-Chair Lee Markins Lee with our special auctioneer Ruthie Harper Conference Chairman and Board member Doug Wright with Dr. Schor One of our special speakers, Dr. Brian Mcgeeney More to follow.....just a sampling ;-)
  7. Psiloscribe


    So is a page about cluster headaches a page of medical information? Awful wide brush. Wiki is not a medical journal. But even medical journals specifically run articles on treating various diseases and conditions with illegal drugs. Treating clusters with psychedelics is acceptable for The Lancet and Neurology and Cephalalgia but not Wikipedia? Funny if it wasn't so sad. if Wiki is a medical journal, then there are MANY pages devoted to illegal drugs. Pages on Psychedelic therapies. If it's just that cluster headaches are a medical journal, then research is one of the most important aspects of any medical journal. To researchers, there is no difference between psilocybin and CGRPs. They are all just molecules to them. You use the same keyboard to type up the research and same instruments to gage their actions. All the microscope sees is a molecule. Yes there are plenty of pages devoted to illness that reference illegal drugs. Example... OCD Psychedelics such as LSD, peyote, and tryptamine alkaloid psilocybin have been proposed as treatment due to their observed effects on OCD symptoms.[81][82] It has been hypothesised that hallucinogens may stimulate 5-HT2A receptors and, less significantly, 5-HT2C receptors, causing an inhibitory effect on the orbitofrontal cortex, an area of the brain strongly associated with hyperactivity and OCD.[83] with research cited. This is not an argument that can be won or lost. There is no legal, ethical or common sense ground that can be defended. It is just someone's misguided opinion at play and you can't win an argument with ignorance. I am actually happy to debate psychedelics when it comes to safety, efficacy, research, legalities, dangers, you name it. heck, I'm happy to debate them on moral grounds since I need to do that when research is involved. There is always a discussion on morals and ethics with ANY research like this and trying to get things past an IRB. Fine. But this isn't a debate. Since it can not be won, this person has decided to censor the discussion based upon his own personal feelings. We are not his children and "because I said so" is not an acceptable answer. This is exactly the type of thinking that has gotten us to the point where it is ok for someone to spend $100,000.00 having a wire inserted into the middle of his/her brain (experimentally) (and safe because only 1 person out of the first 6 died) but it's not ok to pick and consume a mushroom in an experiment to see if that same person can stop his/her clusters. Yes we are sometimes desperate and make bad decisions. One of those first 6 that had the DBS made a very bad decision, and died. But I don't want that information censored either. Over and out Bob
  8. Psiloscribe

    Medical Advisory Board

    Clusterbusters is both pleased and proud to announce the addition of a medical advisory board to our organization. This review and advisory board includes some of the finest headache specialists and health professionals in the country. We greatly appreciate these board memberÂ’s input in our educational, advocacy, awareness and research endeavors and their assistance in helping make Clusterbusters a leading and trusted voice within the patient, medical and governmental administration communities. Our health professionals help design and facilitate our programs to educate and advocate for patients, their supporters, other medical professionals and government agencies. Clusterbusters fully understands that along with chronic pain conditions such as cluster headaches and other headache disorders, there are also many psychological issues that need to be addressed. Because of this we have professionals on the board that deal directly with these issues. The new members of our Advisory Board are; Dr. Robert E. Shapiro Department of Neurological Sciences University of Vermont College of Medicine Dr. William B. Young Thomas Jefferson University Hospital Philadelphia, PA Jefferson University Physician Dr. Brian E. McGeeney Assistant Professor of Neurology Boston University School of Medicine Boston Veterans Administration Medical Center Boston, MA Dr. John Halpern Assistant Professor of Psychiatry Harvard Medical School Boston, MA, USA Biological Psychiatry McLean Hospital Dr. Larry Schor, PhD Professor of Psychology University of West Georgia
  9. Psiloscribe

    Medical Advisory Board

    We have come a long way and I want to thank everyone that frequents this message board and has been with us for all these years. Many people here are responsible for making Clusterbusters what we are and where we have arrived. We have been thru a few self-appointed censors along the way and run into more than a few roadblocks but because of many people here, we've kept our eye on the real reason we are here and do what needs to be done to move forward in a professional manner. Thanks to everyone for your support. Support of Clusterbusters and all the people it represents and thank you all for the support you've shown to me and my family. Bob
  10. Psiloscribe


    I want to thank everyone for your efforts on this. It is a very important issue. I'm sorry but the board of directors of Clusterbusters just does not have the time to chase this person around the internet. We are very busy trying to get things done and make some progress. Wikipedia is an international site that covers more than just the US and laws in the US should not stop any site from publishing the truth. Laws regarding psychedelics change from country to country. Should one person in the US decide how much of the truth someone in Denmark is allowed to read? Whether some people like it or not, there is medical information regarding psychedelics and it should not be censored because of one person's personal agenda. There is only one person/group doing this and he is not a doctor. If he was a doctor, the only agenda he should have is to do no harm. Keeping information from people can harm them. Medical marijuana is illegal under federal statutes. Should all references to it be removed from all the pages where information on it helping different medical conditions, be removed? Should it only be made available in states where it is legal? There is no legal reason for references to the use of psychedelics to treat cluster headaches, or all of the research on it, be removed. The research itself appears on government websites. The medical community has always understood the possible benefits of psychedelics and most have been hampered in advancing research. The medical community supports what Clusterbusters does, what we stand for and is looking to help people with cluster headaches. Evidence of the support within the medical community for Clusterbusters and the research, education and advocacy work that we do, can be found in the post about the additions to our organization with our Medical Advisory Board. 'nuff said Bob
  11. We are now able to release the announcement that the 2014 conference will be held on September 18 to 21, 2014 (Thursday to Sunday) at The Inn at Opryland in Nashville TN. (A Gaylord-Marriott Hotel) Registration details, hotel links and additional information, including speakers, will follow but we can confirm a room rate of only $99 per night. Looking forward to seeing everyone!! Bob
  12. http://www.cod.edu/news-events/news/12_may/13_psychedelicscluster.aspx The College of DuPage Human Services program will host "Changing Attitudes Toward Psychedelics in Therapy, Biology and Culture" on Monday, June 17, from 1 to 5 p.m. in the Health and Science Center, Room 1234. This program is free and open to the public. This program feature presentations by Tom Roberts, Ph.D., author of Psychedelic Future of the Mind, Bob Wold, founder of Cluster Busters and Bruce Sewick, LCPC, RDDP, CADC, the instructor of "Psychedelic Mindview" a course at College of DuPage. The sessions will explore how psychedelics can provide a corrective experience that can facilitate a change in those being treated for addiction and how psychedelics can help patients with Cluster Headaches (also known as "suicide headaches").
  13. Psiloscribe

    Andrew Sewell

    Its with deep regret that I have to inform everyone here about the passing of Dr. Andrew Sewell. I don't have a lot of details yet and will follow this up when I have more. I will release more info as it becomes available. I have been told that he died during or following surgery due to complications. Andrew was with us from the beginning with the early work with psilocybin at Harvard. He also did a study with us with LSA that provided a wealth of data and information on the LSA seeds that many people now use for relief. He was currently working on another study with us. It was during that early work with Clusterbusters and psilocybin that many people became very close with Andrew. I know that many friendships remain and there are thousands of people getting relief today that Andrew was instrumental with his involvement. Following Andrew's early involvement he remained committed to helping people with cluster headaches and even opened up a website to help. http://www.clusterattack.com/blog/home/ Bob
  14. Psiloscribe

    Andrew Sewell

    Thank you Kyle, No I wont be able to make it there this weekend. Hopefully I will be able to get out there for the services. Bob
  15. Psiloscribe

    Andrew Sewell

    In Memoriam The cluster headache community, along with his family, friends and all the other communities he touched, was deeply saddened to learn of Andrew Sewell’s passing.   As people age, they often begin to wonder about what type of legacy they will leave. Andrew may not have spent much time wondering due to his young age, however he would be, and his family should be, proud of his legacy within the cluster headache community. He may have been aware of the positive impact he had upon so many individuals he helped personally. He may not have been aware of the life changing affect he had upon tens of thousands of cluster headache sufferers around the world.   His early work with us and MAPS while at Harvard, with cluster patients and the use of psychedelics as a breakthrough in treatments, lead Andrew to meet with them and understand the significance the condition had upon them. As it relates to this community, his legacy not only includes impacting the lives of those who suffer, but also their families. A positive change for so many that will become generational in nature.   Following his introduction to this community nearly a dozen years ago, Andrew dedicated a great deal of his time to helping as many people as he was able to reach. Personally helping all that contacted him, building a website to bring information and support to those afflicted, and continuing to advance these treatments through research and education. Andrew knew that this isn’t always the easiest research path, nonetheless he never stopped working for people that suffer from this disabling condition. He was the lead investigator on a new study that is currently underway with Clusterbusters.  Andrew became aware of these treatments helping in not only eliminating this dreadful physical pain, but also helping heal the emotional damage that chronic pain such as this causes.  When a doctor ends a patient’s pain and also heals their psychological damage, he is certainly appreciated and revered. When a doctor is an integral part of doing this for tens of thousands of people, with more to follow even after his passing, he leaves a community incredibly appreciative, stunned, saddened and mourning the loss of a great advocate and friend. Bob Wold Andrew at some of our conferences
  16. Psiloscribe

    Andrew Sewell

    Thank you Kyle. I agree Dan. Yes that is the correct address (above) to send cards. Short notice as these things always are but, they are having a Celebration of Life get together at the above address on Saturday, 7-27-2013. It starts at 2 PM. FYI, he was married in 2011 and his wife's name is Nikki. They are looking for any pictures that people may have that they will be putting into a video for display. I will be sending what we have from the years of conference appearances and pictures with attendees. People he helped along the way. If anyone has any pictures they would like me to send along, send them to me in email so I can pass them along. psiloscribe@yahoo.com They will be holding more formal services at a later date to be determined and will be help in Ridgefield CT. I will pass that info along when it's available. Bob
  17. Psiloscribe

    Andrew Sewell

    They are still not sure of the cause of death. he made it through surgery. Awaiting autopsy results. They are having an open house this Saturday, the 27th at his home and are planning a memorial at a later date. I will get the info on the memorial and an address where people can send cards etc. More info as it becomes available. Bob
  18. Psiloscribe

    2013 Conference Update - September in Chicago

    Thank you Fun Guy..... We do have a great line up already and hope everyone can find a way to make it. I want to emphasize the importance of registering asap even if you are going to be paying at the door. We need to get a good handle on the number of attendees. https://events.r20.constantcontact.com/register/eventReg?llr=asfwt7iab&oeidk=a07e6wnq9zdaec5a308 Bob
  19. Psiloscribe


    There have been a lot of questions regarding this issue as well as several others over the recent past. The Board of Directors of Clusterbusters has issued the following statement; As a registered nonprofit it is Clusterbusters mission to find relief from cluster headache through research, education, advocacy and support. In response to the numerous inquires we receive regarding fundraising efforts of other organizations (nonprofit and for profit), we encourage individuals to carefully review all proposals and submit questions directly to those making the solicitation. Clusterbusters collaborates with institutions, organizations and individuals with like-minded missions, however we do not offer advice, support, or comment on private fundraising efforts. Bob
  20. Psiloscribe


    Anyone of our friends in Spain know of a good cluster doc in or near Madrid? Bob
  21. Psiloscribe


    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
  22. 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 :-)
  23. 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
  24. 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
  25. 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