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Title: GOADSBY AND UK CONFERENCE Post by Wendy the Brit on Jun 26th, 2003, 4:07am Dear Cat and all CH sufferers The UK conference is this weekend. Cathy and I are going and Cathy will be videoing the speakers and sending the video to Jonny for your use over there in the US. If anyone wants us to ask Prof Goadsby or anyone else a question, please message me or Cathy with it in writing so we can print it out and get the words right! We will be asking the UK guys and girls to translate any answers for us to make sure we get those right as well! Copied below is the summary of who is speaking. Please get any questions to us by the end of Friday. ---------------------------------------------------------------- Peter May from Magpie Research Services. Peter has put together a very professional, very thorough Cluster Headache Survey. This survey will be launched at the Conference: in due course it will be available on the web site. Professor Richard Trembath, a Geneticist from University of Leicester will talk about his research into Cluster Headache being the result of a faulty, inherited gene. Professor Trembath is bringing three of his medical colleagues to the Conference: they would like CH volunteers to assist in this genetic research by offering blood samples during the lunch break (if you have a parent/sibling with you who would also agree to give a blood sample, this would be brilliant!) We are also grateful to have Paul Ashman of Broker Wales speaking. Paul is a very experienced Civil Servant/Benefits Advisor. He will be talking about how to go about applying for Disability Living Allowance – this will be of particular interest to people who have lost their jobs/are in fear of losing their jobs/are unable to work as a result of their CH condition. Our Patron, Professor Peter Goadsby from the Institute of Neurology will be the Keynote Speaker. Amongst other subjects, we are looking forward to him sharing information on both the new Occipital Nerve and Hypothalmic Stimulator operations. |
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Title: Re: GOADSBY AND UK CONFERENCE Post by Wendy the Brit on Jun 26th, 2003, 4:15am Knocked it off myself so bumping it back up BUMP! |
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Title: Re: GOADSBY AND UK CONFERENCE Post by Riccardo on Jun 26th, 2003, 4:27am See you there, Wendy! P.S. wear a red hat to let me understand who you are in the crowd of 150 partecipants.... ;D Kisses |
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Title: Re: GOADSBY AND UK CONFERENCE Post by Wendy the Brit on Jun 26th, 2003, 4:32am Hi Riccardo Cathy and I will be at the dinner the evening before if you are there. Look for two rowdy blondes, Cathy is the slim one with the video camera and I'm the one with the tits!! If you are on the train from London on Saturday afternoon, I'm the one reading Harry Potter. W the B |
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Title: Re: GOADSBY AND UK CONFERENCE Post by Riccardo on Jun 26th, 2003, 4:54am I will be at the Sat dinner. And I will look at the tits.... oooppps .... ;D I will arrive on Friday, so I'll miss for sure Harry Potter... BTW is the Viscount William Howe one of your ancestors? In this case I think you will be not welcome on this board! ;D ;D ;D ;D |
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Title: Re: GOADSBY AND UK CONFERENCE Post by Wendy the Brit on Jun 26th, 2003, 5:18am No idea if I am related. Who was he, never heard of him? Was he a baddun??? I am related to a few slightly well known people but have never researched the whole lot. |
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Title: Re: GOADSBY AND UK CONFERENCE Post by ave on Jun 26th, 2003, 7:31am Have a nice time, all! I won't make it this year, nor to the Regensburg gathering in Germany, because I am going to Alexandria. Maybe next year in Italy, Riccardo? |
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Title: Re: GOADSBY AND UK CONFERENCE Post by cootie on Jun 26th, 2003, 9:36am Hey you girls have a good time......sounds like you'll be easy ta spot...... ;) don't do nothin I wouldn't do.....and if ya can't be good.....be careful !! Ha-ha-ha-ha-ha.....hope ya have a great time and can't wait ta hear about it. Have a grat time Riccardo....don't let them girls take advantage of you ! ;D (jokein of course) Pammie'd of made it 3 routy blondes ;D ;D ;D |
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Title: Re: GOADSBY AND UK CONFERENCE Post by catlind on Jun 26th, 2003, 11:12am Wendy, I'm working on it!!! Unfortunately I'm not sure if I am going to get it together in time for the conference. I may have to wait and send it to him at a later date, I just don't have the biology background to understand all the mechanisms I'm questioning. Jonny if you forget the video I'll personally string you up ;) LOL I will try to do up a formal tally of the ring finger survey though, so that you can ask Prof Goadsby about that, that is just way too interesting to pass up. Unless Margi or Georgia already has it finished :) Cat |
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Title: Re: GOADSBY AND UK CONFERENCE Post by Wendy the Brit on Jun 26th, 2003, 11:17am Cat I didn't understand any of the notes you sent in the email to me about your question about the hypothalamus, but I haven't read his book. I bet if you posted the rough words here someone could phrase the question for us, also to save you some time?? W the B P.S. Riccardo's notes say he is a serial kisser, we'd better watch ourselves Cathy! |
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Title: Re: GOADSBY AND UK CONFERENCE Post by catlind on Jun 26th, 2003, 12:28pm Okay here goes my attempt at a question. Please remember that biology is a science I am grossly ignorant in. It may be easier to actually print this out and give it to Prof Goadsby if no one can interpret it. Let me start by defining some terms: PER period gene/protein TIM timeless gene/protein DBT doubltime protein Please bear in mind that I am only quoting a very very small portion of the molecular circadian biology section and that I may have it way out of context with regards to the question I am posing. Okay quoting from "Cluster Headache and Related Conditions" Edited by Jes Olesen and Peter J. Goadsby With regards to drosophila melanogaster (fruit flies) screened for genetic variants that showed unusual circadian rhythms: "Flies are just like us in many ways; they 'sleep' at night and are active during the day, and both eclosion and locomotor rhythms persist in monotonous conditions (constant darkness and temperature) with periods very close to 24 h, reflecting their endogenous circadian time-keeper." "Initially it was observed that the PER protein seemed to cycle in abundance with a circadian rhythm in fly heads, particularly in the visual system and some lateral neurons near the central brain" "If PER negatively regulates its own transcription, then we would expect that the protein would move back into the nucleus to shut down its own gene, and that the amino acid sequence of PER should contain a recognizable motif that allows it to bind to its own DNA. The former prediction was realized when it was observed that PER indeed does move into the nucleus of visual neurons and lateral brain cells late in the night." continued |
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Title: Re: GOADSBY AND UK CONFERENCE Post by catlind on Jun 26th, 2003, 12:30pm "One interesting detail at least should be added. It is well-known that light pulses can reset a circadian rhythm, and in many species, including drosophila, a brief light pulse administered early at night to a free-running circadian rhythm (i.e. one running in constant darkness and constant temperature) will delay the rhythm, whereas a pulse given late at night will advance it. How is it possilbe that the same stimulus can have such a different effect at the two phases? The answer is to be found in the TIM protein's light sensitivity. In the brain of the fly, the lateral neurons represent the pacemaker for the fly's behavioural rhythms. If a light pulse is given early at night, the TIM product degrades in these cells (and in others), and PER degrades a little later as it is dependent on TIM for it's stability. However, it must be recalled that the per and tim mRNAs are at their peak at this time. In other words, the PER and TIM proteins can be replaced from their own mRNAs, and the time it takes to do this generates the delay in the clock. Later at night, when a light pulse is given, TIM and then PER are degraded, but there is little or no available per and tim mRNA at this time. Therefore PER and TIM levels drop precipitously, to levels that are characteristic of a later phase (subjective morning). Thus the locomotor activity rhythm appears to advance. This compelling description of the phase response curve through TIM's light sensitivity and the molecular cycles of per and tim shows how beautifully simple an apparent complex phenotyp can be." Okay on to the next topic: EMDR or Eye Movement Desensitization and Reprocessing is a method of current pyschotherapy to reprogram behaviours using eye movements and light. Not all methods use light, but all methods use eye movement and work to reprogram emotional responses and behaviours. Given that the human and the fly are so similar in circadian rhythms, and given that the fly in the above quoted text has behavioural rhythms governed by lateral neurons, as do, presumably, humans, and given that they are affected by light pulses: Would EMDR used with light and not just a finger, or a variant of the process, be able to reprogram, reset, or otherwise alter the human circadium rhythm and processes of the hypothalamus to help in the treatment of cluster headaches? Okay there you have it, if anyone can put that into an easy to present question to Prof Goadsby I would much appreciate it. Otherwise, it might be easiest to print it out and give it to him. Cat |
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Title: Re: GOADSBY AND UK CONFERENCE Post by Wendy the Brit on Jun 26th, 2003, 2:58pm Oh bugger me sideways! HELP!!!!!! |
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Title: Re: GOADSBY AND UK CONFERENCE Post by catlind on Jun 26th, 2003, 3:22pm hehe you asked for it!! Wish I knew how to make it simpler. Cat |
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Title: Re: GOADSBY AND UK CONFERENCE Post by Wendy the Brit on Jun 26th, 2003, 3:48pm Sorry folks. Just bumping this up until end of Friday W the B |
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Title: Re: GOADSBY AND UK CONFERENCE Post by Wendy the Brit on Jun 27th, 2003, 1:03am BUMP Any help with Cat's question and any other questions by the end of today please W the B Sorry, just remembered different time zones. 12 hours from now |
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Title: Re: GOADSBY AND UK CONFERENCE Post by Hamster on Jun 27th, 2003, 11:05am Don't worry Wend - I've got it :) See you there ATB:) Peter |
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Title: Re: GOADSBY AND UK CONFERENCE Post by Wendy the Brit on Jun 27th, 2003, 5:40pm Peter the Hamster I hope to God your post means you are asking the question and understanding the answer for us. Pretty, pretty please ::) ::) W the B |
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Title: Re: GOADSBY AND UK CONFERENCE Post by oringkid on Jun 27th, 2003, 5:56pm So Cat, are you asking if it is possible to use a light pulse to manipulate the timing of our CH? I'm not sure how the behavioral training would fit in though, unless you're talking about trying to teach the brain to accept eye movements as a command to reset the circadien rythms. But, you couldn't totally "reset" the circadien rythms without truly screwing yourself! You'd never sleep! Or, you'd never wake up. The "reset" described in the "fly" thing were talking about probably an hour or so. And since the CH comes all times of day and night (even if they come at set times) I'm not sure I see how it would work. Sherry |
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Title: Re: GOADSBY AND UK CONFERENCE Post by Woobie on Jun 27th, 2003, 6:06pm Bump that's all the good i can do here..... tina :-* |
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Title: Re: GOADSBY AND UK CONFERENCE Post by Wendy the Brit on Jun 27th, 2003, 6:58pm Thanks Tina I am still completely bamboozled so I do hope this Hamster is a biologist! |
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Title: Re: GOADSBY AND UK CONFERENCE Post by kissmyglass on Jun 27th, 2003, 7:04pm W the B, Just ask him "Yo Goadsby Dude, When the Fuck ya ficking gunna find a Fuckin cure for these Fuckin Fuckers?" Kev |
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Title: Re: GOADSBY AND UK CONFERENCE Post by Wendy the Brit on Jun 27th, 2003, 7:06pm Can I rephrase that one, I'm a posh English bird according to Cathy and he might be shocked! |
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Title: Re: GOADSBY AND UK CONFERENCE Post by kissmyglass on Jun 27th, 2003, 7:11pm Just kidding W the posh B, I've been trying but I'm not clever enough to come up with a good question ??? Kev |
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Title: Re: GOADSBY AND UK CONFERENCE Post by Wendy the Brit on Jun 27th, 2003, 7:42pm Just thought I'd post this twice as it is so brilliant. MOB tells us that this weekend is the biggest gathering of clusterheads in history. Not bad for a small island eh? W the B |
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Title: Re: GOADSBY AND UK CONFERENCE Post by Wendy the Brit on Jun 27th, 2003, 8:20pm Last bump before bed. Will check the thread before I go tomorrow for any more questions and a response from the Hamster who is probably asleep in his nest Bumpety bump bump |
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Title: Re: GOADSBY AND UK CONFERENCE Post by Jackie on Jun 27th, 2003, 8:24pm No questions or comments.... Just don't forget to hug the MOBster for me and have a good time. Jacks 8) |
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Title: Re: GOADSBY AND UK CONFERENCE Post by Wendy the Brit on Jun 27th, 2003, 8:29pm Will do Jackie! Will shout "BRO" at him from Jonny as well W the B |
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Title: Re: GOADSBY AND UK CONFERENCE Post by Jackie on Jun 27th, 2003, 8:40pm Three cheers for Goadsby the jolly good fellow..... How's that Wendy..your back up top again... Jacks 8) :) |
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Title: Re: GOADSBY AND UK CONFERENCE Post by Hamster on Jun 28th, 2003, 4:12am Hi all- I am out of my nest :). Wendy - unfortunately I am no biologist and certainly not a geneticist, and as for psychotherapy :(, but I think I can see where you are coming from Cat:). However, in order to get to the bottom of this one, I think we would need all three types of specialist to get together and bounce it about a bit just to focus on the overall hypothesis and to ensure that all the basic assumptions (particularly that human circadian rhythms are also governed by lateral neurons) are correct. As I see it, the crucial aspect to getting any meaningful answer on this one (from PG or indeed Prof. Trembath {the gene specialist}) will be their own particular understanding and experience of EMDR. Assuming they are up to speed, the basic question should not pose too many problems, but I envisage that we would not get a simple "yes" or "no", more like a "that is something we have/we are/we will be looking into". So (if you do not mind), rather than hit them hard with this one in an open forum scenario, it will probably be more fruitful (no pun intended) to bounce it off them either in the bar on the Saturday night or during lunch on the Sunday. I shall certainly do my utmost to broach the subject (these Profs. are always in the bar:)) and shall report back accordingly. (Failing that Cat, I shall hand over my printed copy.) Hope this is helpful- I am back to my nest:) ATB Peter P.S. Kev- I am sure many people are already planning to ask your question, but possibly re-phrased a little:). When asked 5 years ago about how long it would be before we found a cure, PG said 5 years!?? |
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Title: Re: GOADSBY AND UK CONFERENCE Post by catlind on Jun 30th, 2003, 10:25am Wendy and Peter (Hamster) How did the conference go? Did you get the opportunity to speak to Prof Goadsby? Did everyone have fun? Sherry, the behavioural aspect is merely a link between the EMDR as a behavioural tool, and the fact that the lateral neurons and visual systems are key to circadian rhythms, and that the same proteins and genes that govern those systems also govern the behavioural rhythms. In effect hoping that a tool used for behaviour may also prove useful for circadian rhythms. Did that make sense? hehe. Cat |
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Title: Re: GOADSBY AND UK CONFERENCE Post by Wendy the Brit on Jun 30th, 2003, 12:23pm Cat The conference was very good indeed. The presentations by the two Profs (Genetics and Prof Goadsby) were very interesting indeed. Cathy has videoed them, and I think you will find loads to excite and inform and interest you all. Prof Goadsby's was also funny! We only had a very short time for public questions, and Peter had already felt that the question was better asked of Goadsby privately. He was planning to do this for you, but I didn't see him at the end to find out if he had asked. There was a lot of stuff in the presentation shoing everything from brian imaging (very interesting as it showed a brain in Cluster and where the pain was) also lots about the latest developments in clinical and treatment research regarding the hypothalamus and its involvement in Cluster. I suspect and was told by another delegate that the avenue you are interested in may have been a blind alley that has been now left, but Peter hopefully can be more helpful than this. There are several new non-surgical treatments being investigated including one very exciting one which I have now forgotten the name of as it was a set of letters rather than a word, and additionally, Prof Goadsby was suggesting that he has hopes that in the interim nasal Zomig may help more sufferers as it can be used more frequently than Imigran. There was also a lot about invasive treatments too, which was fascinating but a bit terrifying for me. One involves inserting something directly into the section of the hypothalamus that imaging has shown to be significant during an attack. This procedure had been very successful but personally I think I'd have to be pretty desperate!. Can't do a good summary here but the tapes should give you everything. The talks were also taped and are being transcripted I think. W the B |
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Title: Re: GOADSBY AND UK CONFERENCE Post by cathy on Jun 30th, 2003, 1:22pm How's the hangover darling... ;D Wendy had a lovely pair of PJ's roflmao.... Cathy ;D |
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