An Open Letter to MWO Members
Yesterday I received a pm from my MWO moderator informing me that I am welcome to continue posting on MWO, but that they had received complaints about me providing advice to people, and that if I attempt to promote my web site or the Handbook I will be banned.
I have no option but to fully accept this position. Indeed, I am happy to do so. However, in doing so, I think the following letter might help clarify many issues that have apparently vexed so many people, and polarised opinions, over the last couple of months.
This Open Letter is probably far too long, but it is highly likely that it will be the very last posting I make here. So, please bear with me.
The first point I wish to make is that I do not hand out personal medical advice. I have never done so, and go to pains to ensure that everybody understands that. This is rather ironic, because many entirely 'non-medical' members of MWO frequently hand out such advice openly on MWO; frequently giving their opinions about titration regimes and side effects to specific individuals. All anonymously, of course.
Next, absolutely nobody, with the possible exception of Olivier Ameisen, is ever going to make any money whatsoever out of Baclofen. And I very much doubt that even he has done so, or will do so. Whatever else might motivate any of us, it is most definitely not financial gain.
As I see it, what should concern anybody working in this field, and especially those involved in MWO, is not whether any money is ever involved, but rather whether there is any exploitation or opportunism going on.
I set the B4a web site up for one reason only; to help provide open, sensibly organised FREE information to people taking Baclofen, and at my own expense. My hope was to deliver all the information that I wish I had had access to when I first started taking Baclofen to anybody who found my site. Maybe even provide a forum for people with problems to visit for a shoulder to cry on or to talk to others. At this stage, I had never even heard of MWO.
The MWO site is full of commercial elements, both obvious through the owners of the site, and less obvious through the threads. Nobody is concerned that Dr Ameisen?s book is regularly promoted here; nor when members such as Otter promote their own web sites. And why should anybody care? The vital issue here is the dissemination of information.
Surely, the two key roles of the MWO Community Forums and threads are firstly to provide often vital support for others; and secondly the dissemination of ?proper? information. It would be quite wrong if either of these two key elements were to be undertaken in a cynical, blinkered or biased, bigoted fashion.
The Handbook is in no way in competition with ?The End of my Addiction?. Quite the opposite, in fact. The following is how I see it, and why I eventually wrote the Handbook.
Had my wife bought me the Handbook 18 months ago, I would have wondered what on earth she was doing. It would have made absolutely no sense to me at that time. Whilst I didn?t know it, what I needed then was Dr Ameisen?s excellent book. I was a lost soul, with a massive drink problem. But I didn?t know why, or to what degree.
Through his wisdom, for the very first time I began to actually understand what I was and maybe, just maybe, why I was like I was. It provided me with a perfect philosophy for a way out of my own addiction. I now had a much clearer understanding of ?what? and ?why?, and the very first rudiments of ?how?.
I began to understand what had happened to me. Why it might have happened to me. And a glimmer of hope of how to mend myself.
But once I started Baclofen, I found my own experience to be considerably more difficult than that described in Dr Ameisen?s book. Regularly surprising, occasionally funny, sometimes frightening. Over weeks and months I investigated this more and more and continued to collate my own experiences and those of others. By nature, I am a problem solver. I think a lot, and I analyse a lot. I soon decided that I should set up my own web site to help facilitate the spread of this information. The B4a web site is not in competition with MWO. As Beatle so sagely said many many months ago, the two sites are, in fact, complementary.
Recently, somebody posted here criticising me for not providing links to MWO on the B4a site. For their, and all your information, many of the older members will remember that as soon as I started the site I DID have a whole page linking to all the MWO Baclofen threads; including those criticising me!! However, several senior members criticised me for even doing this, and requested that I remove the links. So, very regretfully, I did. I hope that clarifies that issue for you.
Eventually, and at the request of many visitors to the web site, I dissected and expanded all the information I had found into the Handbook. In a nutshell, the Handbook is merely the next logical, entirely practical tool to turn to after you have absorbed ?The End of my Addiction? and decided to embark upon treatment with Baclofen. The Handbook adds a step-by-step ?how? to Dr Ameisen?s ?what? and ?why?.
In addition, anybody who tries to help manage their own alcoholism needs support, and that must be found anywhere you can get it. MWO is an excellent resource for this. And when it works well, it is amazing. Truly amazing. I have seen it. Unfortunately, when it is not working quite so well, it can be extremely damaging to some vulnerable people. Through my web site and the personal e-mails I have received, I have seen this also.
Fortunately, this is very uncommon and usually rapidly spotted and dealt with by moderators and members alike.
As I write this Open Letter, I truly believe that the ?Rolls Royce? of Baclofen management currently lies with starting with ?The End of my Addiction?; moving on to the Handbook if you are going to take Baclofen; and using MWO and any other support you can get once you start. These three elements may not be perfect, but the present state of affairs is a million miles better than it was less than two years ago. Maybe even twelve months ago.
Let me make it very clear once more. Nobody should read the Handbook until they have read ?The End of my Addiction?, and understood all that it says. This is fundamentally important. The Handbook is most definitely not my own version of ?The End of my Addiction?.
The Handbook is simply a concise, succinct practical guide to taking High Dose Baclofen for chronic alcoholism and the chronic anxiety that often causes it. Nothing more. Nothing less.
Its importance and relevance stem directly from one massively important factor, and it cannot be overstated. That factor is this. The great majority of us are self medicating our High Dose Baclofen. This self-prescribing is never to be recommended; and whilst not particularly dangerous as such, is rarely totally straightforward, and can occasionally be harrowing. The sole purpose of the Handbook is to try to make this tremendously difficult task as safe as humanly possible.
But why a ?proper? book? The simple reason is that this is what the visitors to my web site asked for. The amount of information precluded me simply putting it on the site as web pages. The navigation of the site would have been thrown into chaos. Neither did these visitors want a pdf or other file to print off on A4 paper. What they especially wanted was a detailed synopsis of all the side effects and complications of High Dose Baclofen; presented sensibly and objectively. They wanted a ?proper? book that they could carry around with them ? a pocket Handbook. At their request, that is precisely what I have produced.
Over the last 18 months I have received much encouragement and support from the huge number of visitors to my site, and many old stalwarts on MWO; perhaps most notably Beatle. I have similarly received an immense amount of criticism; often also from Beatle!! Unfortunately, I have also received many insults, and indeed some threats, from others here. Anybody who sticks his neck out like this must not be surprised by this, and I have not been; although I must admit that the degree of venom spat my way by a very small number of MWO members has been somewhat disconcerting, and very very disappointing.
I must concede that much, if not almost all, of the more reasoned criticisms of me are entirely understandable and correct. What you must remember here is that I am not an authority on alcoholism, or alcoholism management. I am an alcoholic. I have been attempting to provide information, help and support to others whilst trying to deal with my own problems. Baclofen has been a massive help to me, but it is not a magic bullet; no panacea; no miracle. There have been ups and downs, as there are with all of us. Even if I was totally sober at the time, the high dose Baclofen frequently altered my psychology; my interpretation of arguments and issues; and my reactions to events and to others. I am well aware that some of these may have been inappropriate and played out in public as I reacted to the onslaughts I occasionally received here. Indeed, many of the more offensive onslaughts did undermine my own recovery. I concede that some of the ?debates? have been less than edifying.
For this I apologise.
Further, if anything that has happened in the last month or so has encouraged anybody to depart for warmer friendlier climes, then I regret that too. In particular, I sincerely regret Tigs decision to leave these threads. To paraphrase Voltaire ?I may not agree with what you say, but I will defend to the death your right to say it?. As it happens, I happen to agree with much of what Tigs has said about Baclofen, and I would be thrilled to see him posting here again. Some have written to me saying that somehow I have ?won? and ?beaten? Tigs. They are mistaken and misguided if this is what they believe. Much of what is great about MWO would not have developed if it were not for people like him. MWO must never be a fighting combative place; it should be a place for quiet contemplation and help; for measured compassion, care and support.
If I have, in any way, undermined this principle, then I once again apologise.
In conclusion, I have not in any way attempted to ?commercially promote? either my web site or the Handbook. I live in the United Kingdom, and my web site regularly appears on the first page of a Google search on google.co.uk. I have absolutely no idea how it appears on worldwide searches. Having gone to all the trouble of developing the web site (at my own expense, with a little sponsorship from the In-House Pharmacy, which runs out in a few months) and publishing the Handbook, it would be madness not to at least make fellow sufferers aware of their existence. The dissemination of information and providing support is all I am about. That has been my sole motivation for what I have posted.
I see absolutely nothing controversial about the contents of this Open Letter, and see no reason why it should not be published on MWO. In fact, I believe that it clears the air considerably. I hope that this thread will be allowed to continue, should anybody wish to comment or at least read the letter, and that I am able to continue as a ?normal? member of MWO. Although I doubt it.
I have pm?d a copy of this Open Letter to those members who have supported me in the past, by means of apology. I have deliberately neither included a link to either my web site or the Handbook; nor even named them in full.
I have been told by the MWO members who would know about such things that many of you would never read the Handbook, purely because I wrote it. Well, that?s up to you. All I know is that I wish I had had access to all this information when I first started taking High Dose Baclofen. It would have saved me and my family a massive amount of worry and grief, and speeded my recovery by months.
In spite of that, I have found my own way out. I have now abandoned moderation because it provides too many distractions for me. It might be OK for you. For me, abstinence is the solution, and through High Dose Baclofen, I have finally found it.
Take care and my very best wishes.
Phill
Yesterday I received a pm from my MWO moderator informing me that I am welcome to continue posting on MWO, but that they had received complaints about me providing advice to people, and that if I attempt to promote my web site or the Handbook I will be banned.
I have no option but to fully accept this position. Indeed, I am happy to do so. However, in doing so, I think the following letter might help clarify many issues that have apparently vexed so many people, and polarised opinions, over the last couple of months.
This Open Letter is probably far too long, but it is highly likely that it will be the very last posting I make here. So, please bear with me.
The first point I wish to make is that I do not hand out personal medical advice. I have never done so, and go to pains to ensure that everybody understands that. This is rather ironic, because many entirely 'non-medical' members of MWO frequently hand out such advice openly on MWO; frequently giving their opinions about titration regimes and side effects to specific individuals. All anonymously, of course.
Next, absolutely nobody, with the possible exception of Olivier Ameisen, is ever going to make any money whatsoever out of Baclofen. And I very much doubt that even he has done so, or will do so. Whatever else might motivate any of us, it is most definitely not financial gain.
As I see it, what should concern anybody working in this field, and especially those involved in MWO, is not whether any money is ever involved, but rather whether there is any exploitation or opportunism going on.
I set the B4a web site up for one reason only; to help provide open, sensibly organised FREE information to people taking Baclofen, and at my own expense. My hope was to deliver all the information that I wish I had had access to when I first started taking Baclofen to anybody who found my site. Maybe even provide a forum for people with problems to visit for a shoulder to cry on or to talk to others. At this stage, I had never even heard of MWO.
The MWO site is full of commercial elements, both obvious through the owners of the site, and less obvious through the threads. Nobody is concerned that Dr Ameisen?s book is regularly promoted here; nor when members such as Otter promote their own web sites. And why should anybody care? The vital issue here is the dissemination of information.
Surely, the two key roles of the MWO Community Forums and threads are firstly to provide often vital support for others; and secondly the dissemination of ?proper? information. It would be quite wrong if either of these two key elements were to be undertaken in a cynical, blinkered or biased, bigoted fashion.
The Handbook is in no way in competition with ?The End of my Addiction?. Quite the opposite, in fact. The following is how I see it, and why I eventually wrote the Handbook.
Had my wife bought me the Handbook 18 months ago, I would have wondered what on earth she was doing. It would have made absolutely no sense to me at that time. Whilst I didn?t know it, what I needed then was Dr Ameisen?s excellent book. I was a lost soul, with a massive drink problem. But I didn?t know why, or to what degree.
Through his wisdom, for the very first time I began to actually understand what I was and maybe, just maybe, why I was like I was. It provided me with a perfect philosophy for a way out of my own addiction. I now had a much clearer understanding of ?what? and ?why?, and the very first rudiments of ?how?.
I began to understand what had happened to me. Why it might have happened to me. And a glimmer of hope of how to mend myself.
But once I started Baclofen, I found my own experience to be considerably more difficult than that described in Dr Ameisen?s book. Regularly surprising, occasionally funny, sometimes frightening. Over weeks and months I investigated this more and more and continued to collate my own experiences and those of others. By nature, I am a problem solver. I think a lot, and I analyse a lot. I soon decided that I should set up my own web site to help facilitate the spread of this information. The B4a web site is not in competition with MWO. As Beatle so sagely said many many months ago, the two sites are, in fact, complementary.
Recently, somebody posted here criticising me for not providing links to MWO on the B4a site. For their, and all your information, many of the older members will remember that as soon as I started the site I DID have a whole page linking to all the MWO Baclofen threads; including those criticising me!! However, several senior members criticised me for even doing this, and requested that I remove the links. So, very regretfully, I did. I hope that clarifies that issue for you.
Eventually, and at the request of many visitors to the web site, I dissected and expanded all the information I had found into the Handbook. In a nutshell, the Handbook is merely the next logical, entirely practical tool to turn to after you have absorbed ?The End of my Addiction? and decided to embark upon treatment with Baclofen. The Handbook adds a step-by-step ?how? to Dr Ameisen?s ?what? and ?why?.
In addition, anybody who tries to help manage their own alcoholism needs support, and that must be found anywhere you can get it. MWO is an excellent resource for this. And when it works well, it is amazing. Truly amazing. I have seen it. Unfortunately, when it is not working quite so well, it can be extremely damaging to some vulnerable people. Through my web site and the personal e-mails I have received, I have seen this also.
Fortunately, this is very uncommon and usually rapidly spotted and dealt with by moderators and members alike.
As I write this Open Letter, I truly believe that the ?Rolls Royce? of Baclofen management currently lies with starting with ?The End of my Addiction?; moving on to the Handbook if you are going to take Baclofen; and using MWO and any other support you can get once you start. These three elements may not be perfect, but the present state of affairs is a million miles better than it was less than two years ago. Maybe even twelve months ago.
Let me make it very clear once more. Nobody should read the Handbook until they have read ?The End of my Addiction?, and understood all that it says. This is fundamentally important. The Handbook is most definitely not my own version of ?The End of my Addiction?.
The Handbook is simply a concise, succinct practical guide to taking High Dose Baclofen for chronic alcoholism and the chronic anxiety that often causes it. Nothing more. Nothing less.
Its importance and relevance stem directly from one massively important factor, and it cannot be overstated. That factor is this. The great majority of us are self medicating our High Dose Baclofen. This self-prescribing is never to be recommended; and whilst not particularly dangerous as such, is rarely totally straightforward, and can occasionally be harrowing. The sole purpose of the Handbook is to try to make this tremendously difficult task as safe as humanly possible.
But why a ?proper? book? The simple reason is that this is what the visitors to my web site asked for. The amount of information precluded me simply putting it on the site as web pages. The navigation of the site would have been thrown into chaos. Neither did these visitors want a pdf or other file to print off on A4 paper. What they especially wanted was a detailed synopsis of all the side effects and complications of High Dose Baclofen; presented sensibly and objectively. They wanted a ?proper? book that they could carry around with them ? a pocket Handbook. At their request, that is precisely what I have produced.
Over the last 18 months I have received much encouragement and support from the huge number of visitors to my site, and many old stalwarts on MWO; perhaps most notably Beatle. I have similarly received an immense amount of criticism; often also from Beatle!! Unfortunately, I have also received many insults, and indeed some threats, from others here. Anybody who sticks his neck out like this must not be surprised by this, and I have not been; although I must admit that the degree of venom spat my way by a very small number of MWO members has been somewhat disconcerting, and very very disappointing.
I must concede that much, if not almost all, of the more reasoned criticisms of me are entirely understandable and correct. What you must remember here is that I am not an authority on alcoholism, or alcoholism management. I am an alcoholic. I have been attempting to provide information, help and support to others whilst trying to deal with my own problems. Baclofen has been a massive help to me, but it is not a magic bullet; no panacea; no miracle. There have been ups and downs, as there are with all of us. Even if I was totally sober at the time, the high dose Baclofen frequently altered my psychology; my interpretation of arguments and issues; and my reactions to events and to others. I am well aware that some of these may have been inappropriate and played out in public as I reacted to the onslaughts I occasionally received here. Indeed, many of the more offensive onslaughts did undermine my own recovery. I concede that some of the ?debates? have been less than edifying.
For this I apologise.
Further, if anything that has happened in the last month or so has encouraged anybody to depart for warmer friendlier climes, then I regret that too. In particular, I sincerely regret Tigs decision to leave these threads. To paraphrase Voltaire ?I may not agree with what you say, but I will defend to the death your right to say it?. As it happens, I happen to agree with much of what Tigs has said about Baclofen, and I would be thrilled to see him posting here again. Some have written to me saying that somehow I have ?won? and ?beaten? Tigs. They are mistaken and misguided if this is what they believe. Much of what is great about MWO would not have developed if it were not for people like him. MWO must never be a fighting combative place; it should be a place for quiet contemplation and help; for measured compassion, care and support.
If I have, in any way, undermined this principle, then I once again apologise.
In conclusion, I have not in any way attempted to ?commercially promote? either my web site or the Handbook. I live in the United Kingdom, and my web site regularly appears on the first page of a Google search on google.co.uk. I have absolutely no idea how it appears on worldwide searches. Having gone to all the trouble of developing the web site (at my own expense, with a little sponsorship from the In-House Pharmacy, which runs out in a few months) and publishing the Handbook, it would be madness not to at least make fellow sufferers aware of their existence. The dissemination of information and providing support is all I am about. That has been my sole motivation for what I have posted.
I see absolutely nothing controversial about the contents of this Open Letter, and see no reason why it should not be published on MWO. In fact, I believe that it clears the air considerably. I hope that this thread will be allowed to continue, should anybody wish to comment or at least read the letter, and that I am able to continue as a ?normal? member of MWO. Although I doubt it.
I have pm?d a copy of this Open Letter to those members who have supported me in the past, by means of apology. I have deliberately neither included a link to either my web site or the Handbook; nor even named them in full.
I have been told by the MWO members who would know about such things that many of you would never read the Handbook, purely because I wrote it. Well, that?s up to you. All I know is that I wish I had had access to all this information when I first started taking High Dose Baclofen. It would have saved me and my family a massive amount of worry and grief, and speeded my recovery by months.
In spite of that, I have found my own way out. I have now abandoned moderation because it provides too many distractions for me. It might be OK for you. For me, abstinence is the solution, and through High Dose Baclofen, I have finally found it.
Take care and my very best wishes.
Phill
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