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cvssufferer1

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Reply with quote  #1 
At the very least I think I should be allowed to post this and then the mods can lock it. I will then happily leave the forum under the name cvssufferer1 never to mention cannabis again!

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The moderators of CVSA message board have decided the thread was causing dissention and causing members to leave (although only one poster with 7 posts openly stated this) so have deleted the 9 pages and hours and hours of research I have done.

I will state again how sorry I am if I have caused any members to leave due to my manner or questioning about their illness. My intentions were totally good and I was seriously trying to see if there is a link or not. Sadly we will never be able to discuss that on here so who knows whether we will ever know.

For now though I hang my hat up and move on with things. I know, like many others on here, that cannabis use has not caused my CVS. If it has caused yours then who was I ever to argue? One thing I do hope is that everyone who has CVS for whatever reason manages to find peace with themselves abstaining whatever helps them.

I feel very disappointed that all of my research has been deleted and again a huge topic will be brushed under the carpet for another few years. Quite why I do not know. Many members have posted that they encounter this labelling problem in the ER so why the CVSA dont want to talk about it I really dont know! I wish I did because I would have done the thread on a place who werent so easy to flush a members hard research down the drain Again, I would appreciate it at the very least if the moderators will leave this post up just so people know what has happened. I tried my best and my intentions were true. I apologise wholeheartedly!
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demoncleaner

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Posts: 277
Reply with quote  #2 
wow, that is disappointing to say the least. im fairly sure i had posted at least once in depth to that thread myself. wont bother anymore.

locking a thread is usually the better way to handle an issue like this, not deleting the thread, that is bad form on most any forum. this is the ADULT cvs forum is it not? as adults we have the option of turning the station if something is offensive to us. we have the option of changing the channel. we have the option of reading another thread. what is offensive to one is not necessarily offensive to all. censorship is far more offensive to me.

i havnt read this thread in months, but have a hard time buying the fact that a forum thread was causing people to leave. really? maybe there was something really nasty posted that i didnt see, but surely the post could have been deleted without removing the entire thread? or maybe i am confusing this with another thread but i seem to remember this as being a fairly large thread with many contributions? ah well, sad to see this on ANY forum. just lock it. it will drop off the first pages. deleting entire multipage threads tends to upset people.  

wow, more i think of it, more offensive it is to me. think i will stop posting and leave the forums! /hissyfit   

(not really, my skin isnt that thin. im here to learn, but you see what i did there?)

sad panda
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inspektor

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Posts: 4
Reply with quote  #3 

WoW cvssufferer1.. I have been around and seen your thread for a long time.  I also thought there may have been a link to Cannabis Hypermesis at first.  Thankfully your original thread helped me see there is no real link and its just drug war propaganda.  I myself will be leaving this forum as of now due to this injustice.  I doubt anyone cares but if one person saying they are "offended" in an OPEN ADULT forum and getting said information locked up...  Sounds pretty familiar to a few governments I can think of.....

I hope you all find some good health in this horrible disease some of us have.  cvssufferer you ever need any help pm me I will still respond to you but as for the rest of you.  Peace.

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ginny

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Reply with quote  #4 

No one objects to discussion of Marijuana and its place in CVS treatment.

The thread in question was bringing more marijuana user attention than CVS sufferer attention.

We are a support group for CVS.

It is my fault for not copying and pasting the seven pages of the posts.  I did not realize that the posts had not been kept by the writer.

All postings written by researchers on marijauna use are welcome and all personal opinions and discussions are welcome and encouraged.  The CVSA Doctors and BOD requested we not become known as marijuana dominated.  We cannot have on thing ever take away our chances of being funded for research to find the cause and cure for the CVS disorder.

I have apologised for not copying and pasting, and for following directions to remove the thread.
Everyone is welcome to an opinion and I have not censured any opinion as long as people have not been singled out and had a finger pointed at them.  Every person on this message board deserves respsect.

If anyone should leave the MB over this matter, perhaps it should be me.  Our family is free of CVS and for ten years I have been volunteering without anyone in my family being ill.  My time with CVS has been since the begining and it could be time for new blood.


So please do not leave a needed support group that wants you to remain, that you need, that has an open minded policy with few rules (respect, no dosages).  There is always another moderator and those who are well come and go all the time.

Thank you.


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ginny CVSA Moderator
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esoteric

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Posts: 299
Reply with quote  #5 

Oh goodness Ginny, I want EVERYONE to know that I am in 100% agreement with what response Ginny just gave.

To me this is just ridiculous cvssufferer1.   Wanna pick on someone, yoo hoo, I am your gal.  But I would request a private message as I don't think it benefits anyone but you, which is why I never responded to this public thread in the first place.  

I can't believe how much valuable information Ginny imparts daily.  We do it because we are empathetic to people on the verge or in full out crisis.  I also do it for my own knowledge and understanding of the disease, which I have been free of for 3 years.  

I don't blame you one bit Ginny, live your life.  You have already given more to sufferers and the cause then any of us could do in a lifetime. 


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Kim

CVSA Volunteer

the journey is the reward
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cvssufferer1

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Posts: 113
Reply with quote  #6 

I have never picked on anyone :/

I was looking for a connection but for some reason people on here dont want to talk about it. Whatever, I am done too. As I said, I would not come back and post on the subject if you left this thread up however it sounds like I was picking on people when I certainly wasnt.

It appears to me that the CVSA are more concerned about the possible link than me and that is clearly why you dont want it discussed. In all honesty I have found alot of my answers from my research so selfishly speaking I am satisfied. I am still disappointed that the CVSA have deleted 9 pages of research I have done but like I said before, its your forum you can do what you want.

For mods to say they are going to leave themselves over the discussion I also find that very disappointing though. I agree that the thread was more cannabis related than CVS................but then thats why I always kept in it one thread. Ofcourse a thread titled cannabis hyperemesis is going to focus more on cannabis than on CVS...that was the point totally! 

I do think I know a few of the mods away from my username CVSSufferer1. I can assure you I am not a bully, nor am I trying to cause any trouble. All I ever wanted to do was help people with CVS who are being accused of cannabis causing their CVS. Incidentally I'm not even one of those people. My doctors have NEVER asked about my cannabis use and a possible connection. Fortunately as I have said previously in "that" thread, my health has improved dramatically in the last 6 months following the emperic guidelines. I continue to smoke cannabis so it is pretty clear to me that cannabis isnt or sorry, wasnt causing my CVS.

Anyway, I will leave it at that. I totally understand the CVSA stance on the subject and why they dont want it discussing. Unfortunately though, many patients in the US are being told cannabis is causing their cyclic vomiting and all I was doing was investigating it on this website. I clearly chose the wrong place. Like Ginny, I am better now and I could selfishly move on but I havent. My intentions were totally good and I really dont want to upset anyone so sorry Ginny if it feels like that. 

The subject wont get brushed under the carpet, infact it is gaining momentum, so I do suggest that the CVSA get ready to prepare a statement for when the "stories" hit the main stream news leaving all of us sufferers being labelled as drug users costing the healthcare system thousands of dollars.

I tried my very hardest and I really hope people can see that. I didnt want to upset anyone, far far from it. My full apologies but yeah esoteric, you have mail!

 

 

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cvssufferer1

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Posts: 113
Reply with quote  #7 

Oh and about new blood...........I obviously dont want Ginny nor anyone to leave however I am willing to offer my services. I do suspect however that my input or help isnt wanted orelse that thread would still remain! I never once abused anyone, nor did I accuse anyone of anything, what I did do was ask questions and if that is my crime then I am guilty your honour! 

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ginny

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Reply with quote  #8 

And after all of your hard work we do have an official study taking place.

Please see the thread about the study posted two days ago.

Dr. V weighed in on your thread.  She is now conducting the study with 50 volunteers-- volunteers being sought.

I was told that no scientific study has been conducted for many years so Dr. V's study is more than timely.

Better still, this study is not directed toward the Marijuana user who vomits but is directed to the diagnosed CVS patient who smoke Marijuana.  This should be a major help in distinguishing between the material being found on Cannibis Hyperemesis and CVS patients who find relief in Marijuana.

So lets have Peace.  Please, let us see how the study goes.  If you can participate, please do.  Everyone wants to know a treatment, find relief from symptoms, find a way to be nourished sould and body.


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ginny CVSA Moderator
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cvssufferer1

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Posts: 113
Reply with quote  #9 
Thanks for the reply Ginny. Thats absolutely fantastic news about the official study that Dr V is going to do. Shame I am nowhere near close enough to help out but I really hope they get the volunteers required to go ahead with it and hopefully learn more about the relationship or possible link.

Your right aswell Ginny. We have to keep things peaceful or we will never learn anything. I really have tried my hardest however if all of my effort has caused Dr V to investigate the possible link, then I am more than happy what the thread has achieved.

Thanks again for letting me know about the new study and we all really do appreciate the hard work people put into the organisation but us members contribute alot aswell. Its a community where no-ones views should be dismissed. We are all adults (in the adult forum) and it would be nice if we could all act like it too


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catiebeth

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Posts: 18
Reply with quote  #10 
Well I seem to have missed out on all of this. My boyfriend was told by his gastroenterologist that he had CVS brought on by Cannibis Hyperemesis. It would have been nice to discuss with someone else. None of the other people I have talked to have even heard about it. Too bad we're in Northwest Ohio or he'd sign up for that study in a heart beat...

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cvssufferer1

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Posts: 113
Reply with quote  #11 

Hate to say it but another connection being made by another doctor. Its not me causing problems for CVSA it really isnt. Its sufferers coming forward telling their stories and I am only highlighting the problem so that someone listens. 

Esoteric, With regards to not answering my old thread because it would only benefit me..........I struggle to see why. I have never being accused or diagnosed with cannabis hyperemesis. i dont even need to fight this fight at all but it is a subject I know alot about so thought why not start asking questions. It has caused offence to a few members which is a shame, I admit that. Just imagine how many of us will be offended though if it goes to mainstream media that cannabis causes CVS. I can imagine the message board will be busy that day.........I do hope this new study by Dr V can give us the answers we need before the storm does hit the media.

I am not arguing, just trying to learn more. That is it and I am sorry if this is not wanted.

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demoncleaner

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Posts: 277
Reply with quote  #12 
welcome catiebeth!

i would recommend using the search function and search "cannabis". you will find many threads that address this subject, most of which i have posted in extensivly myself as i am quite passionate about the subject, having had this rediculous diagnosis thrust in my face time and tiime again over the last few years this CHS theory has been gaining momentum in the medical community. for many of us, this has just become another way for docs to invalidate our suffering and place to onus on us for our illness, no differant than they do to the nonsmoking patient who comes into the ER for pain relief and is treated like a drug seeker seeking opiates.

as i recommend in alot of the other threads, anyone who is concered about CHS. read the reports. they are all readily available online and as of about a year ago, there are only around 30 reports published. read the reports and be your own judge. knowledge is power.  

in order to combat this ignorance, you will need to become more informed than you doctors are, which in most cases, is not hard to do, as most doctors dont know anything about CVS, and if they find out you smoke weed,  simply parrot the "weed is causing your vomiting" line that has permeated the med community in the last few years.  in every case where a doctor has said to me i have CHS, i have asked them if they have even read all of the reports. resounding NO. do you know anything about CVS? resounding no. until this improves, it is on you to educate yourself about this issue or suffer the abusive treatment at the hands of ignorant doctors who are very proud of their education level and have large egos.

you CANNOT blindly trust doctors. just 2 quick examples from my history. when i was 14 i was put on PPI'S.(proton pump inhibitors)  from 14 to 18, and from 28 to 31 i was instructed to take PPI'S EVERY DAY, INDEFINATLY.  i was rx'd every ppi known to man. and what do we know about ppi's 20 years later? they are not safe to take for extended periods of time! in many cases antacids and ppis just make things WORSE. many people actually do better with acid supplements! your stomach needs to produce acid! duh!!!

14 years ago i was rx'd reglan,(metoclopramide) and told to take it every day indefinatly, after my doc's had run out of every other pill to ram down my throat. when i looked into it 14 years ago the risk to benifit ratio was so skewed there was no way i was EVER going to ingest that substance. and what do we know about reglan 14 years later? it now has a black box warning and the manufacturer now states that no one, under any circumstances, should use reglan for more than 3 monthes cumulative, and those that do, have a very high chance of developing tardive dyskenisia (uncontrolable and often irreversable muscle spasms/ticks/twitches.) there are people on this board who have TD in addition to CVS as a result of taking reglan.

you cannot blindly trust these people. they dont have to live with the suffering we live with and they dont have to incurr the side effects of the bullshit synthetics they pimp for big pharma. you must be proactive and do your own research as well as seeking a good doctor that is willing to listen instead of preach. CHS is pretty easy to rule out, and both the patient and doctor should be open to that, and the doctor needs to be educated enough to be able to diferentiate between CHS and CVS before he says "do you smoke weed, well then you have CHS" , which is what it has become. the original criteria put forth was longterm heavy use, complusive hot showering, cessation of symptoms following abstinace. now it is just weed smoker, vomiter, = CHS. thats whats so disturbing about the whole thing. its an epedemic of idiocy currently. and the docs still dont know what the hell CVS is.


i wish your bf the best catiebeth, encourage him to read the posts on this board, there is a wealth of good information here and it can make you feel alot better just reading the countless others that also suffer from this dread affliction. if its herb, easy enough to solve. if its not and may be CVS, then this place is a goldmine of support and information.
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cvssufferer1

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Posts: 113
Reply with quote  #13 
I hate to keep going back to things said in posts but its a bad side of me I would love to change...anyway, Ginny you said "All postings written by researchers on marijauna use are welcome and all personal opinions and discussions are welcome and encouraged.  The CVSA Doctors and BOD requested we not become known as marijuana dominated.  We cannot have on thing ever take away our chances of being funded for research to find the cause and cure for the CVS disorder."

I find this a very interesting answer and one that I think I understand fully. Maybe I am wrong but I am thinking I was bringing unwanted attention to the CVSA about cannabis use? In my defence it wasnt my story directly.....it was other members stories which I was copying and pasting in one place so people could see for themselves and make their own minds up. Your statement "We welcome all personal opinions and discussion are encouraged".....................I do struggle to see how deleting a 9 page thread actually does this but I am not going to argue anymore. I am certainly not here for that. What I will say, and i have said it all along, if the CVSA Doctors and BOD have requested we not become known as marijuana dominated........................maybe they should stop the doctors around the US who are seemingly blaming cannabis use on CVS, as proved by many different people on here and the deleted thread. Maybe that is what the study is going to do I dont know but one thing is for certain.................take me out of the picture, CVS will still continue to be linked to cannabis use until something is done to prove or disprove it. If this makes funding harder to get for CVS then it will only be because it is cannabis caused and I think you and most people on here know it isnt.

Thanks again, I feel I am coming back to a place I didnt want to return to though. The frustration that CVSA appeared to be unwilling to discuss cannabis being a cause for CVS is too much for me. Dont get me wrong, I am so very pleased my original thread has started the ball rolling with a new study but in the months between now and when the results are published I fear the worst mores the pity. Cannabis doesnt cause my CVS, I have found out so much over the last few months that I am disappointed in myself that I almost fell for the propoganda. Like Ginny said, people get better and leave the forum.............I do feel that is what the CVSA want me to do now. Hopefully I will eh!
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super30

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Reply with quote  #14 
Let's not go down this path of story gathering and suppositions. Allow the research to bring scientific data that will be accepted by the medical community.
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demoncleaner

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Posts: 277
Reply with quote  #15 

well, that is precisly the problem super30, in this area, there is for all intents and purposes, allmost zero research being done on plant cannabinols, as it is unlawful and very difficult to get funding for and has been for decades and decades. most studies are being done in other countries with more rational views on the matter such as sativex, developed in the uk from nonsynthetic whole plant cannabiniods. sativex, is currently one of the ONLY applications being studied in the US, because it is so effective, but it never would have been allowed to be developed here with mj at sched 1. the US stance is that big pharma gets to release drugs, so there has to be a synthetic version first, so big pharma can get their cut. big pharma exerts a TON of pressure to keep more natural herbs and the like under the radar.  we can study things like THC, due to its synthetic version, which is schedule 3. CBD is also gettin alot of study in the last decade, as it truly seems to be  one of the magic bullets as far as Cannabis cannabinoids go, prompting the Fed to take a patent out on its synthesis.  CBD is definatly an important substance for CVS patients that use mj to be aware of, as THC is not very relevant at all, medicianlly, CBD is attributed to providing the type of symptomatic reliefs that we need. (nausea, anxiety, sedation, etc) but the whole discussion for the last 40 years is about THC, and THC levels, because that has what the fed has used to continue its prohibition. so all people know, as far as cannabiniods go, is THC. there are about 70 to 90 more cannabinols in cannabis. we know VERY LITTLE at this point about any of these.  

the best we can do currently, in terms of funded research, is to study the endocannabinoid system, such as the new study Dr. V. is doing on relationship of stress and the endocan system. these are NOT the same substances, they merely share an affinity for the same receptors in our endocan system. we know of around 5 endocannabinoids, Anandamide  and 2-AG probably being the most studied at this point. the others are mostly, very recent discoveries. this represents really the only area of funded studies currently, as there is no legal red tape to navigate when studying substances produced by humans or animals. so there has been ALOT of study on endocannabinoids over the last 2 decades. these are in NO WAY to be confused with plant cannabiniods. completly differant substances that are readily confused by people when they hear the word cannabiniod, they bind to the same receptors, that is all.

this is essentially the relationship Dr V is looking into with her new study for those that hear the word cannabinoid and automaticallty think its a "weed" study, its not. :   While the secretion of glucocorticoids in response to stressful stimuli is an adaptive response necessary for an organism to respond appropriately to a stressor, persistent secretion may be harmful. The endocannabinoid system has been implicated in the habituation of the hypothalamic-pituitary-adrenal axis (HPA axis) to repeated exposure to restraint stress. Studies have demonstrated differential synthesis of anandamide and 2-AG during tonic stress. A decrease of anandamide was found along the axis that contributed to basal hypersecretion of corticosterone; in contrast, an increase of 2-AG was found in the amygdala after repeated stress, which was negatively correlated to magnitude of the corticosterone response. All effects were abolished by the CB1 antagonist AM251, supporting the conclusion that these effects were cannabinoid-receptor dependent.[34] These findings show that anandamide and 2-AG divergently regulate the HPA axis response to stress: while habituation of the stress-induced HPA axis via 2-AG prevents excessive secretion of glucocorticoids to non-threatening stimuli, the increase of basal corticosterone secretion resulting from decreased anandamide allows for a facilitated response of the HPA axis to novel stimuli.


since no formal scientific research is allowed to be done on plant cannabinols currently, we are left with "story gathering" and "suppositions" from real people with real exp with the substance as the only fairly good source of data in many ways. this is also known as observational, annectdotal or empirical data, and it is not to be dismissed. Dr V, will have to rely on the same type of data in her study as well to some extent , if it involves cannabis users, as she cannot do tests with actual plant cannabiniods, only study the endocann system. you cannot dismiss empirical or anectdotal data as simply story gathering and suppostions, especially when it stacks up high enough. the ideal situation is when you can combine both the scientific method with said anectdotal data for a really good picture of something.

sweeping the subject under the rug untill the "research" comes in is futile and does nothing to improve general knowledge on the matter. we have been waiting for the research to come in for over 40 years now. well, we have people that have been using/ propagating these substances for 30, or 40 years. there is a wealth of information to be gleaned there if it is not ignorantly dismissed as here-say, suppostitions or stories with no merit, prima facia, simply due to the source.

currently, the prevalance of CHS misdiagnosis as it relates to CVS patients, as well as the use of cannabis as an effective medicine among CVS patients makes the subject quite relevant to discussion in my estimation.

 

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