Complaint Review: rrpwebsite.org

I haven't checked each email that was sent or received, but I think what Rolando Aldabert has just posted was helpful in showing context, noting  that I believe the bolding was his. It's not important, however. I thank him for the clarifications.

For the record, I believe he is as sincere in trying to assist the RRP community as I have been. At issue now is not so much the past, at least on my side, but the "going forward" part in terms of trust.

I know he feels manipulated but that was not my intent. On the other hand, and it is not necessary to elaborate the specifics, I noted what I believe were some very recent and substantive misrepresentations dating back the past few months or so, and that was not acceptable to me, as previously described.

The rest was mostly point-counterpoint, based on his ongoing addenda here.

We have had many cordial telephone conversations since his first post on Rip-Off Reports, however, and the dates will confirm that I waited more than a year before publishing any rebuttal, mostly because I wanted it to be as objective and measured as possible.

I still want that, and again, I am very glad Rolando has stepped forward and taken ownership of this.

I need to move-on, and I am sure he does as well. We've wished each other the best in email from later today, though he said I've (and RRP ISA too) become "irrelevant," in an email shared with Bill Stern.

I hope that isn't true, not as a matter of ego (there's way too much ego in the RRP community at any number of levels, I think), but because of the very email he has quoted from above, wherein I try to redirect all the enormous speculations within the RRP community back to some semblance of reality.

Rolando has grown a lot in the past year, and I am not saying that condescendingly. We both recognize that there's a lot of misinformation and misdirection of energy. I don't believe his efforts to inform people are irrelevant, nor do I believe mine have been.

Once again, I am sorry for any hurt feelings. Trust is a huge issue after what happened in the past, however, and I believe that due to a lot of triangulation originating from many different quarters, there is a need for due diligence on the part of doctors as well as patients.

I don't think Rolando would disagree, and I am hoping we can let this end on that positive note, though I sadly think the trust on both sides has been irrevocably injured.

I don't think Rolando closed on an angry note here, and I certainly don't want to do that either. I accept his positive wishes for me, and I want him to know they are sincerely reciprocated.

Michael,
 
  I have been taking the art exactly as outlined this time.  I had another pdl procedure today (3rd).  Doctor Belafski UC Davis says we are starting to make some progress.  So I feel that it is helping this time.  But I am still getting sick when I take it.  By the third day I get real nauseous...
 
What I am thinking about doing is developing a breathing apparatus, like a nebulizor or inhaler, to deliver the art directly to the vocal chords.  This will avoid the stomach sickness for me hopefully and also may actually work just as well the doctor who painted the art on the dogs chords.
 
What do you think the best way to get the art into a liquid form will be?
 
 
Hi Rolando,

Glad to hear from you. I dont know whats causing the nausea. I suspect some aspect of the guidelines (they are long and detailed) may not have been followed.
 
There are lots of anti-nausea strategies,  however, but I do not wasnt to be put in the position of giving what looks like medical advice.
 
There is no reason whatsoever to believe that spraying ART, assuming you could even dissolve the stuff, would do anything. That is different from painting on the cords with whatever was used to ensure it also got into the cords rather than just drying out on the surface. I frankly think its a rather silly idea, there is no way of knowing what dose youre getting and in all probability youd get nothing whatsoever into the cells.
 
Still, I do not want to offer advice here. I strongly suggest you discuss it with your physician and see what he says.
 
Michael,
 
  What do you know about Sodium Chlorite?  It seems to work on the same principles as Art.....
 
Let me know...
 
 
---Great. You should contact the World Health Organization and tell them you have a cheap and reliable cure for malaria. I am sure they will be happy.
 
 
Michael,
 
  I don't know if you are having a bad day or what!!  I just wanted to know if you have read up on it. It looks like it can be a good adjunct to ART for me, not malaria patients.....I am looking for things to help me, not save the world!
 
If you read about what ART does and how it operates.  Sodium Chlorite seems to compliment that.  I was wondering if you know of an RRP patient that has tried it?
 
I wanted to try it in between ART usage. 
 
The 2 things that I am researching right now are Sodium Chlorite and Turmeric.
 
Turmeric is already used for HPV and is in some anti viral supplements such as Viral Free.
 
But before I try either I wanted to ask what you know about them and if there is any data from any rrp patients....
 
I hope you have some constructive input.
 
 
----Hi Rolando,
 
Dont mean to be short with you but please understand that while I am not as busy as your physician, I do have a schedule. I cannot respond to all the tips people send me, how for example RRP is caused by parasites, how taking echinachea will help, etc.
 
You said Sodium Chlorite does the same thing as ART. I rather doubt that but I think that if it does, you should seriously contact the WHO. I am not interested in chatting about this. If you have a medical journal link, not just an anecdote, do feel free to pass it along and I will look at it. I am totally disinterested in anecdotes or stuff off the web that is not journaled.
 
Otherwise, please know that I wish you the best but I do not feel the obviously buoyancy that you have about certain ideas that may come to you about treatment of RRP. I am not charging you for my time as your physician would, but I do wish to maintain certain boundaries. Please try and respect that.
 
Tumeric is interesting but I have not found it useful for RRP. If you wish to ask others about it on the forum, thats fine. Same with sodium Chlorite. Please put it under Treatment>Alternative. I have just created that section for you.
 
Kind regards,
Michael
No problem......
 
 
I hope my donation sent a couple months ago will help cover any time we've spent......
 
I just want to create a dialog that you yourself said is missing in the community.  Who do we have to talk to?  Our physicians only discuss protocol, or just don't know. 
 
There are answers somewhere out there.  We would find them quicker if we all communicated ideas and experience. Doctors, patients, organizations, chemist, ex......
 
I just thought that was the reason you started RRP ISA and I could collaborate with you. 
 
But I will post my comments and questions up on the board of your web site from now on...........
 
Talk to you later,
 
 
------Rolandro,
 
I appreciate all donations but my time is still limited. I am sorry but I have no interest in the kind of collaboration you suggest.
 
Weve already spent several hours on ART. I am sorry too if you feel unappreciated or that I havent provided sufficient interest in your issues or suggestions.
 
The reason why I started RRP ISA was to provide reliable information and develop appropriate networking tools. Along the latter lines, there is a venue for the kind of communication you seek, which is why I suggested the forum.
 
Wishing you luck,
Michael
Michael,

Thanks for all your help and motivation!


It seems like there is a need for a better forum for people to be able to freely discuss things.   Yours seems to be more about you responding to people's  post, and not so much a real forum for people to discuss the issues and ideas. That is fine for your purposes but does not serve the patient who looking to speek to others about rrp. 
So I will set up my own forum via google to get in touch with other rrp patients.  I am truly disapointed  and affended  by the way you have acted towards me here as an rrp patient asking simple questions. My thread will be available for others to read via a google blog as will be your responses..

Merry Christmas.......
 
--------Rolando,
 
After a nuanced, supportive and reasoned response to your forum message, you talked about censorship and generally took offense in the broadest sense. Thats ok, but I have deleted your forum account. I ask that you not post there again. As you also know, I have previously pointed you back to your physician for advice relative to RRP. I wish you well but the subject is closed and will not discuss this again.

Regards,
Michael,

  You have answered more in your last e-mail then in all your prior emails about the initial question.  Which was simple.  Hey, what do you know about these few things!!

I am researching many different things for myself.  I am sorry that I do not have the 30 years of experience that you do with trial and error. But your responses to simple questions made no sense and where at some points condescending.  Why not, Roland, I have tried using them with no results and there is not enough data to support that it works! Or it's way too dangerous because.... What's with all the politics and snubs!

I am very generous guy with allot of resources.  Before I had RRP I have sponsored and worked with several charities and events as the owner of what some would say a super successful Marketing Ad Firm her in So Ca.  As I write this letter I am sitting in my office taking time out to work on this disease. What's my agenda? Fix myself. Fix myself. Fix myself.

You said in an e-mail that I am desperate.  And that is why you could never be a peer of mine either.  I don't know what that word means!  That is a word for people who lack sted fast and focus.  See I was a Marine for Four years before I started my company.  I have had other things try to kill me before.  This is nothing new to me!  And the key to success with this desease or any disease is information. So when any information is suppressed in what ever manner. It's only helping the disease and is disruptive to the goal. 

Believe me, I understand that you do not want to be responsible for people trying dangerous things and or getting hurt in the short or long term. I get that. 

Discussing why or why not something is dangerous is better then not!  Wouldn't you agree?

Last, I am not trying to change your forum nor challenge the way you operate.  I am merely seeking information through discussion.  Whether with you or someone else. 

And your the one who directed me to the forum after I had asked you the same questions in an e-mail, and you did not answer!!

You said you created a section for me ask these questions!!!  ------ALTERNATIVE TREATMENT---
Then you delete my post!


What the hell........
 
-----You can do as you wish, Rolando. The issue wasn't censorship but a refusal to allow patients to post results, where apples were not compared to apples, but to oranges, and where the confusions in variables could not be properly distinguished. Additionally, if you wish to present statements as factual that are not, I need to respond and set the record straight. Finally, there
was a real concern on my part relating to your long-term welfare in the face of what I saw as possible reckless behavior. Ozone is known to be quite toxic. Black salve has also been a subject of concern. Firing a .45 into the brain will also kill RRP, but that's not such a good thing. But many patients are desperate, as I said, and some of them are all too willing to grasp at last straws. In using approaches that I and virtually all American physicians would consider dangerous and reckless--that's why you alluded to
this being done across the border--I am quite adamant. No, that sort of thing will not be a subject of further discussion in the forum. If you have a problem with that, I am sorry, but that's the way it is.

I didn't scold. Instead, I carefully explained my reasoning. I didn't say you couldn't post, just that I didn't want you posting results that could be inadvertently misleading others (apples and oranges, again, or adding turmeric powder--which you explicitly said you were using, not tea--or worse, ozone, black salve, etc).

It's hard enough to move the ART research effort along in the best of circumstances without introducing a lot of wild and possibly very dangerous variables. I explained that many times but you still don't seem to understand it, seeing it instead as cruel and despotic censorship.

You said I didn't read your post but I did, and I've reread it several times over as I saved it. I do not think you read mine very carefully, however, or else you would not have been so reactive and offended.

Recently too, you suggested that although I spent much more time with you than I do with most patients, it somehow wasn't enough. At issue was my desire to set up some clear boundaries with you, so that I didn't get hit on regularly with suggestions (sodium chlorite, for example). I explained that I did not have the time to follow-up and moreover, I thought it a rather bad
idea as there was no basis whatsoever for thinking it would work. You kept hammering the point about its being very similar to ART, and I asked for the journal citations. My guess is that if it wasn't sodium chlorite, it would be MSM, If not MSM, then something else. While I appreciate your enthusiasm, I've been doing this for awhile and I've been that road before.

I doubt any physician alive would initiate an open-door policy as I have and be open too to talking to you for hours. But still, you wanted more, and if I wasn't open to it, you were there to tell me I was -you fill in the blanks-. Your suggested that real "RRP peer: would have been receptive to all that you proposed and wanted to collaborate. You may think we are peers, Rolando, but I am a lot older than you and I am in no way your peer. I've been contending with this disease for 30 years. You're very new to it and
seem to assume that if I don't pick up on something, it means I'm not receptive to new input. Actually, turmeric, thuja and a lot of other things have already been reported by patients over the years. If you think they might work on RRP, wonderful, but don't expect me to re-travel again that road just for you.

Now, sodium chlorite is nothing at all like artemisinin. I didn't say you couldn't say it was on the forum. Rather, I said that I felt a need to set the record straight. Patients have at times written about RRP being caused by parasites. They weren't ever told they couldn't say that out loud, but yes, I do need to set the record straight at times. Since 1998, I think I've only kicked about five people from our forums. I use the plural because since that time, we've had probably about 7,000 posts in various iterations
of the forum, as described on the main website. You were kicked, quite frankly, because of what increasing appeared as your propensity to interpret things in the worst possible light and then start hurling very negative and destructive accusations.

I could be all wrong, of course, but then I saved my post, as I told you above. I took off the entire thread but have copied my post below. I invite you once again to read it, and slowly. I hardly think it was as damning or abusive as you saw it, but my point is that if that's how you see things, it is unlikely that any good can come for your participating further on the forum. I am sorry you feel so abused, but that absolutely was not my intention.

Regards,
 
-----am emailing from my phone.....Lets move on from this. I am currently and have been doing Art by the book. I have no intension of posting negative results. I was just asking quick....simple.....qustions on things I was reading about. I responded wrong to your response in that I should have just said" that is not an answer to the question!"  then repeated the question. Now we have been in a long conversation about the meaning of what was said and each person's perception ex.....!!

I now have rrp and a head ache!!

I know you are not the type to burn bridges with a patient over a miscommunication or argument. As I am not either.  So I'll leave this converation with no ill feelings and a better understanding of how you opperate.

I hope we will continue to coorispond
on issues and will update you with my Art results. Please stop assuming that I am not following guide lines. The only one not followed was sourcing a couple months ago and was immidietly corrected.  

I did get  horribly sick after this weeks use. But I stuck to it and will continue to by the book. 

Issue closed!


Merr Christmas again!
Rolando,
 
------Again, you seem to be choosing not to read what I have written. I never suggested you not try new things. This isnt a fight between you and a parent. I said that ART, IMO, should not be combined with certain things and I gave reasons for that.
 
Also, desperation isnt a negative. Ex-marines may not get desperate, but most humans do and most RRP patients do. RRP is scary. It makes perfect sense to seek viable strategies, including a Plan A, B, C, D or Z if the others do not work. I understand all that but what I said still holds. I never suggested you cant do what you want with your own body. But the do no harm injunction is, in my view, inviolable. Do I feel protective toward other patients? You bet. Do I want to avoid crash and burn encounters with ARTwhich, if it happened and were widely publicized, could actually get ART banned by the FDA? Absolutely.
You seem to be ignoring many things in the guidelines, from sourcing to those admonitions. This isnt a parent saying no. Its an adult saying I think this could be dangerous and if you chose to do that, I cannot be there to pick up the pieces should you get in trouble. At some point, the only ethical choice is to redirect you to your physician, which is what I have done.
 
Additionally, I said that you can, of course, do whatever you want, including report it on the forum. But I asked you not to report a failure with ART when you do not take it according to the apples/apples model. If you were to also add cobra venom to the mix, which you are at least contemplating, then I asked that you not use the forum to point people to it. Why? I explained why. I said that it was a subject of enormous controversy and considered dangerous by many. I felt a responsibility on the forum to do no harm, and I thought that pointing people to cobra venom could be harmful.
 
I did not delete your post on the alternative thoughts. I answered it, and again, in an adult and non-parental voice. Your response, however, was that of an enraged six year old. I deleted only that latter post at first, and then there was your email. At that point, I decided the best thing to do was delete the thread entirely. It wasnt deleted to censor you or out of spite but because it seemed more fair to you that I delete the entire thread.
 
This wasnt a matter of your just asking about alternative approaches or expressing some measured interest in them. Many others have done that in the forum, as you can readily see. You went further and began making much more concrete assertions that required a response. You also made it clear that the guidelines relative to the ART meant relatively little to you and that your experiments of doubling or tripling down on use of other things while taking ART might expose you to great risk. We had had numerous discussions on all that previously but no matter. Since it seemed that my suggestions, which you claimed to value, were not of much value, it seemed appropriate that I redirect you to your physician as I had done.

This wasnt the giant ogre daddy telling a six year old how to behave, however. If that is how it seems, then youre right. What the hell.
 
I do wish you well. Take care.

Michael,
 
  I hope you had a good New Years!  Just a quick question.  Where did you come up with the guidelines for how much art to take?  Is it totally necessary to take so much? 
 
What do you think about taking less but maybe for more then the 3 days per month? I start again next week and I am dreading it!
 
Let me know what you think
 
I am emailing from my phone.....Lets move on from this. I am currently and have been doing Art by the book. I have no intension of posting negative results.

-------M: I have posted all results we have received including the negative, which we need to hear as well. I have sometimes found major discrepancies in the apples to apples issue, however, as, for example, the man who took 27 mg/kg
of ART rather than 7, or the people who didn't take it with fat containing food/whole milk. Reporting issues arise from a lack of clarity on all the possible variables; the problem, however, is that they can easily mislead readers, and equally importantly, mislead doctors. I want to hear the good, bad and ugly in terms of response, but the posted responses need to contain
as few independent variables as possible.


I was just asking quick....simple.....qustions on things I was reading about. I responded wrong to your response in that I should have just said" that is not an answer to the question!"  then repeated the question. Now we have been in a long conversation about the meaning of what was said and each person's perception ex.....!!

I now have rrp and a head ache!!

I know you are not the type to burn bridges with a patient over a miscommunication or argument. As I am not either.  So I'll leave this converation with no ill feelings and a better understanding of how you opperate.

-----M: I clearly operate in a more hands-on style from the message board. There is a huge amount of misinformation surrounding RRP. Patients ARE rightfully scared and they do want solutions. One of the most important calls I ever
had was with an immunologist who knew RRP who, the morning I was about to fly to another state to get MMR, gently said that I was acting out of desperation (his word) and was taking huge chances with my immune system. He was right and when I arrived, I refused the MMR. My point wasn't to talk you down for fears of your own or a need for solutions but to tell you that some methods are probably safe (turmeric, though not with ART please if you plan on reporting EITHER success or failure) and some are not. At some point down the road, it will absolutely be appropriate for patients to report how ART, which failed at first, might have worked with the addition of other things like tumeric. But right now, I think the priority for the RRP research
community, including the doctors, is to know how ART works as a stand-alone without it's being mixed with other things like turmeric. Adding potentially very dangerous things to the ART like ozone or what I whimsically call "cobra venom" is probably never going to be permitted on this board because of the real possibility that some patients might do that and either get very
sick or die. Again, the "no harm" thing takes precedence. If someone wanted to try cobra venom on their own and report it, that would be ok because at least it would reflect on the ART.

I hope we will continue to coorispond on issues and will update you with my Art results. Please stop assuming that
I am not following guide lines. The only one not followed was sourcing a couple months ago and was immidietly corrected. 

-------M: I am not convinced corresponding is that useful but I am glad we seem to have gotten beyond the anger and blame. Same with your participation in contributing to the forum, though you could always read from it, of course.
I do think your doctor is worthy of your confidence and that he should be the person to whom you go for advice. This blow-up was hard on me too, it took hours really, and I cannot keep worrying about how you might take something. It's exhausting to both of us. I agree there were communications issues, but I can't help but worry that they will recur.

For that reason, I'd like us to part on a positive note but not one that suggests we might want to keep doing this. My suggestion to you is that you should stop taking ART if you are getting "horribly sick." I'd say the same to all patients so please don't feel singled out. Again, I'd redirect you back to your doctor. Avastin may be precisely your ticket. If I were you, I'd at least try it. I'd very much like to know how it worked for you.


I did get  horribly sick after this weeks use. But I stuck to it and will continue to by the book. 

Issue closed!


Merr Christmas again!

Rolando 

-----Original Message-----

From:  "Michael Green" <mdgr@comcast.net>
Subj:  RE: Forum, etc.
Date:  Mon Dec 21, 2009 10:51 am
Size:  4K
To:  <newlineoc@aol.com>

Rolando,

Again, you seem to be choosing not to read what I have written. I never suggested you not try new things. This isn't a fight between you and a parent. I said that ART, IMO, should not be combined with certain things and I gave reasons for that.

Also, desperation isn't a negative. Ex-marines may not get desperate, but most humans do and most RRP patients do. RRP is scary. It makes perfect sense to seek viable strategies, including a Plan A, B, C, D or Z if the others do not work. I understand all that but what I said still holds. I never suggested you can't do what you want with your own body. But the "do no harm" injunction is, in my view, inviolable. Do I feel protective toward other patients? You bet. Do I want to avoid "crash and burn" encounters with ART-which, if it happened and were widely publicized, could actually get ART banned by the FDA? Absolutely.

You seem to be ignoring many things in the guidelines, from sourcing to those admonitions. This isn't a parent saying no. It's an adult saying I think this could be dangerous and if you chose to do that, I cannot be there to pick up the pieces should you get in trouble. At some point, the only ethical choice is to redirect you to your physician, which is what I have done.

Additionally, I said that you can, of course, do whatever you want, including report it on the forum. But I asked you not to report a failure with ART when you do not take it according to the apples/apples model. If you were to also add "cobra venom" to the mix, which you are at least contemplating, then I asked that you not use the forum to point people to it. Why? I explained why. I said that it was a subject of enormous controversy and considered dangerous by many. I felt a responsibility on the
forum to do no harm, and I thought that pointing people to "cobra venom" could be harmful.

I did not delete your post on the alternative thoughts. I answered it, and again, in an adult and non-parental voice. Your response, however, was that of an enraged six year old. I deleted only that latter post at first, and then there was your email. At that point, I decided the best thing to do was delete the thread entirely. It wasn't deleted to censor you or out of spite
but because it seemed more fair to you that I delete the entire thread.

This wasn't a matter of your just asking about alternative approaches or expressing some measured interest in them. Many others have done that in the forum, as you can readily see. You went further and began making much more concrete assertions that required a response. You also made it clear that the guidelines relative to the ART meant relatively little to you and that
your experiments of "doubling or tripling down" on use of other things while taking ART might expose you to great risk. We had had numerous discussions on all that previously but no matter. Since it seemed that my suggestions, which you claimed to value, were not of much value, it seemed appropriate that I redirect you to your physician as I had done.

This wasn't the giant ogre daddy telling a six year old how to behave, however. If that is how it seems, then you're right. What the hell.

I do wish you well. Take care.

Kind regards,

Michael,
 
  ??  I asked a simple question on art?  Why wouldn't you answer?  I don't want to carry on long emails with you or back and forth.  I was looking for some answers on the ART that you are trying to move forward and have written guide lines on.  A simple  answer to the question will suffice. 
 
 
WHERE DID YOU COME UP WITH THE GUIDELINES THAT YOU HAVE POSTED ON YOUR WEB SITE?
 
HOW DO I KNOW THE AMOUNT THAT YOU SUGGEST IS SAFE?
 
WILL A LESSER AMOUNT WORK JUST AS WELL? WHY OR WHY NOT.
 
I am keeping these questions between you and I only right now.  And I will keep it that way if you simply answer the Qs...
 
I respectfully ask you to answer.
 
 
Good evening, Rolando. I have emphatically said I think you should stop. I do not want to keep needing to discuss this subject. I do wish you luck going forward.
I meant to say "would not."

>If someone wanted to try cobra venom on their own and report it, that would be ok because at least it would reflect on the ART.
 
I meant to say "would not."

I think that the evolution of these iterations speaks for itself. Moreover, when someone says they're an expert witness, it's deceptive if they aren't. I do not think it is appropriate to keep defending myself or our organization against the ongoing destructive acts of  this person.

The trigger for the original poster's current diatribe today was not my rebuttal, for that was published some time ago, but an email from today that I sent to him and several other people. I am copying it in full, with names, below.

Readers can deal with it all as they will. Since it has become necessary, given the evidently escalating and vindictive nature of the person originally posting, I will be directing patients to this page and readers can make their own determination.

I fully expect more complaints from this individual, mostly couched in anonymity or false-identities as this one was, and posted to the web. Our website will be referring people to this link, however, and I will be contacting our attorney for further guidance:

From my email of 4:29 PM, 9/14/11:

From: Michael Green [mailto:[REDACTED]]
Sent: Wednesday, September 14, 2011 4:29 PM
To: 'Newlineoc@redacted' [Rolando Aldabert]; 'bills@rrpf.org'; Farrel Buchinsky; Christopher Hartnick (Christopher_Hartnick@[REDACTED]

Cc: 'pwicks@[REDACTED]

Subject: FW: Being able to use patientslikeme to do recurrent respiratory papillomatosis research

So today, having rejoined Facebook, I paid a brief visit to the so called RRP Support Group. What I discovered wasnt that surprising. I congratulate Rolandos success and I mean that sincerely -- but I also discovered that I was lied to on two occasions very recently. Now, I was able to forgive his previous incoherent falsifications that attempted to destroy both RRP ISA and me (http://www.ripoffreport.com/medicle-expert-witnesses/rrpwebsite-org/rrpwebsite-org-rrp-isa-rrp-we-46bb8.htm, which speaks for itself), but at this point, I do not want further contact with him, nor is there any need for any strategic planning.  While I hope to further coordinate with Bill, Farrel and Chris, I will also, as promised, be doing much my own thing when it appears to serve the interest of truth and disclosure. It is no longer a Plan B option, however, but the only action plan that appears to hold any interest for me.

Regards,

Michael Green, MSW, LICSW
President and Executive Director
International RRP ISA Center
3319 Oregon Place,  Bellingham, WA. 98226
http://www.rrpwebsite.org

RRP ISA is a non-profit, charitable 501(c)(3) corporation, Federal ID 91-2156850. This email and any files transmitted with it are confidential and intended solely for the use of the individual or entity to whom they are addressed.

 

From: Michael Green [mailto:mdgr@comcast.net]
Sent: Wednesday, September 14, 2011 10:34 AM
To: 'Farrel Buchinsky'; 'Paul Wicks'
Cc: 'Newlineoc@redacted' [Rolando Aldabert]; 'Christopher Hartnick'; 'Bill Stern MS'
Subject: RE: Being able to use patientslikeme to do recurrent respiratory papillomatosis research

Hi all,

Thanks for the video of Patients Like Me, which I am in the midst of digesting. This is not a new idea, however, and much of what I have read in the back and forth suggests it is new. By this, I am mostly referring to Farrels very extensive iterations previously with Paul. They go back about a year, I think, maybe much more, and I regularly received ccs of the correspondence (thanks Farrel). I share Bills positive acknowledgements to Farrel for his proactiveness here, but I am left wondering what happened to any previous discussion/threads, since (my memory could be wrong) it seemed like a lot of these kinds of questions had previously been raised.

Beyond that, my wish is to move forward in whatever endeavor is undertaken, and in a substantial way. That applies to the entire field of advocacy, support and patient/doctor education. I have had several discussions with Rolando and Bill on this much more general subject. RRP ISAs got data, Bill has data, and weve now got three advocate groups. Issues have already developed, serious problems in some cases. Im not suggesting three is too many I think theres a good mix, actually but entrenchment and triangulation are still very much present.

In order to stop working at cross-purposes, which I believe we are often doing albeit inadvertently, the thought leaders of these three groups need to figure out what it is were even trying to do. I dont think we ourselves have rigorously gone through that strategic planning process, and certainly not all of us together. What do we want? Instead, what we have is what can best be described as a sometimes destructive, bifurcated and often incoherent effort, often built on ego or a vision that has not yet even matured, where patients get whip lashed into this or that treatment of the week, and where little if anything gets accomplished.

I have briefly discussed this and other matters with both Bill and Rolando, and Ive called for a meeting. Nothings happened, and it appears that a strategic planning discussion such as this is not very interesting, which does not surprise me in the slightest. Without that kind of planning, however, I think that much of what is done in RRP that includes the RRP Task Force, which meets two hours a year -- will, at best, be uncoordinated and often counter-productive. Thats a shame, because I think that just the four of us not sure Pauls a player at this internal level could do more in a single year than what has been done in the past decade. And Im not just talking about data points. The scope of my remarks, as some of the recipients will know, goes much deeper.

Failing any such discussion, as I told Rolando and Bill, I think its time for some very honest and trenchant blog pieces, along with video postings. Ive been holding back on that, but I must say that Im getting very tired of playing Patty Cake.

Kind regards,

Michael Green, MSW, LICSW
President and Executive Director
International RRP ISA Center
3319 Oregon Place,  Bellingham, WA. 98226
http://www.rrpwebsite.org

RRP ISA is a non-profit, charitable 501(c)(3) corporation, Federal ID 91-2156850. This email and any files transmitted with it are confidential and intended solely for the use of the individual or entity to whom they are addressed.


From: Farrel Buchinsky [mailto: ]
Sent: Tuesday, September 13, 2011 11:29 PM
To: Paul Wicks
Cc: Newlineoc@redacted [Rolando Aldarbert]; Christopher Hartnick; Bill Stern MS; Michael Green
Subject: Being able to use patientslikeme to do recurrent respiratory papillomatosis research

Dear Paul

I have witnessed the new website and how one can use it for any disease, including RRP. Mazel tov on the achievement. I have played a little and have a few questions.
1.    Can researchers, for example me or others like me, access the raw back-end data to do data modelling? Can researchers work with you?
2.    There are specific quality of life questionnaires for voice. Can I upload it or adapt it for patientslikeme so that a patient can fill it out from time to time
3.    What happens to the data if patientslikeme goes out of business? Does patientslikeme have something such as the data liberation front.
Please answer here or please call me.

There are several hundred actively engaged people with recurrent respiratory papillomatosis that participate in one way or another with online patient support groups. I am considering directing them to patientslikeme but need to know how things would work with regards to the 3 questions above. If your website already answers the questions then please accept my apologies and simply direct me to the relevant urls.

Farrel J. Buchinsky, MD - 
Director, Respiratory Papillomatosis Program
Allegheny-Singer Research Institute
320 E. North Avenue
Pittsburgh, PA 15212-4772

From: Michael Green [mailto:[REDACTED]]
Sent: Wednesday, September 14, 2011 4:29 PM
To: 'Newlineoc@redacted'; 'bills@rrpf.org'; Farrel Buchinsky; Christopher Hartnick (Christopher_Hartnick@[REDACTED]
Cc: 'pwicks@[REDACTED]
Subject: FW: Being able to use patientslikeme to do recurrent respiratory papillomatosis research

I think that the evolutiopn of these iterations speaks for itself. Moreover, when someone says they're an expert witness, it's deceptive if they aren't. I do I not think like it is appropriate to keep defending myself or our organization. the trigger for the original posters current diatribe was an email I sent to him and several other people. I am copying it in full, with names, below.

People can deal with it all they will. Since it has become necessary given the evidently vindictive nature of the person originally posting, I will be directing patients to this page and they can make their own determination. I fully expect more complaints from this individual, mostly couched in anonymity as this one was. I will be contacting our attorney for guidance:

So today, having rejoined Facebook, I paid a brief visit to the so called RRP Support Group. What I discovered wasnt that surprising. I congratulate Rolandos success and I mean that sincerely -- but I also discovered that I was lied to on two occasions very recently. Now, I was able to forgive his previous incoherent falsifications that attempted to destroy both RRP ISA and me (http://www.ripoffreport.com/medicle-expert-witnesses/rrpwebsite-org/rrpwebsite-org-rrp-isa-rrp-we-46bb8.htm, which speaks for itself), but at this point, I do not want further contact with him, nor is there any need for any strategic planning.  While I hope to further coordinate with Bill, Farrel and Chris, I will also, as promised, be doing much my own thing when it appears to serve the interest of truth and disclosure. It is no longer a Plan B option, however, but the only action plan that appears to hold any interest for me.

Regards,

Michael Green, MSW, LICSW
President and Executive Director
International RRP ISA Center
3319 Oregon Place,  Bellingham, WA. 98226
http://www.rrpwebsite.org

RRP ISA is a non-profit, charitable 501(c)(3) corporation, Federal ID 91-2156850. This email and any files transmitted with it are confidential and intended solely for the use of the individual or entity to whom they are addressed.

 

From: Michael Green [mailto:mdgr@comcast.net]
Sent: Wednesday, September 14, 2011 10:34 AM
To: 'Farrel Buchinsky'; 'Paul Wicks'
Cc: 'Newlineoc@redacted'; 'Christopher Hartnick'; 'Bill Stern MS'
Subject: RE: Being able to use patientslikeme to do recurrent respiratory papillomatosis research

Hi all,

Thanks for the video of Patients Like Me, which I am in the midst of digesting. This is not a new idea, however, and much of what I have read in the back and forth suggests it is new. By this, I am mostly referring to Farrels very extensive iterations previously with Paul. They go back about a year, I think, maybe much more, and I regularly received ccs of the correspondence (thanks Farrel). I share Bills positive acknowledgements to Farrel for his proactiveness here, but I am left wondering what happened to any previous discussion/threads, since (my memory could be wrong) it seemed like a lot of these kinds of questions had previously been raised.

Beyond that, my wish is to move forward in whatever endeavor is undertaken, and in a substantial way. That applies to the entire field of advocacy, support and patient/doctor education. I have had several discussions with Rolando and Bill on this much more general subject. RRP ISAs got data, Bill has data, and weve now got three advocate groups. Issues have already developed, serious problems in some cases. Im not suggesting three is too many I think theres a good mix, actually but entrenchment and triangulation are still very much present.

In order to stop working at cross-purposes, which I believe we are often doing albeit inadvertently, the thought leaders of these three groups need to figure out what it is were even trying to do. I dont think we ourselves have rigorously gone through that strategic planning process, and certainly not all of us together. What do we want? Instead, what we have is what can best be described as a sometimes destructive, bifurcated and often incoherent effort, often built on ego or a vision that has not yet even matured, where patients get whip lashed into this or that treatment of the week, and where little if anything gets accomplished.

I have briefly discussed this and other matters with both Bill and Rolando, and Ive called for a meeting. Nothings happened, and it appears that a strategic planning discussion such as this is not very interesting, which does not surprise me in the slightest. Without that kind of planning, however, I think that much of what is done in RRP that includes the RRP Task Force, which meets two hours a year -- will, at best, be uncoordinated and often counter-productive. Thats a shame, because I think that just the four of us not sure Pauls a player at this internal level could do more in a single year than what has been done in the past decade. And Im not just talking about data points. The scope of my remarks, as some of the recipients will know, goes much deeper.

Failing any such discussion, as I told Rolando and Bill, I think its time for some very honest and trenchant blog pieces, along with video postings. Ive been holding back on that, but I must say that Im getting very tired of playing Patty Cake.

Kind regards,

Michael Green, MSW, LICSW
President and Executive Director
International RRP ISA Center
3319 Oregon Place,  Bellingham, WA. 98226
http://www.rrpwebsite.org

RRP ISA is a non-profit, charitable 501(c)(3) corporation, Federal ID 91-2156850. This email and any files transmitted with it are confidential and intended solely for the use of the individual or entity to whom they are addressed.


From: Farrel Buchinsky [mailto: ]
Sent: Tuesday, September 13, 2011 11:29 PM
To: Paul Wicks
Cc: Newlineoc@redacted; Christopher Hartnick; Bill Stern MS; Michael Green
Subject: Being able to use patientslikeme to do recurrent respiratory papillomatosis research

Dear Paul

I have witnessed the new website and how one can use it for any disease, including RRP. Mazel tov on the achievement. I have played a little and have a few questions.
1.    Can researchers, for example me or others like me, access the raw back-end data to do data modelling? Can researchers work with you?
2.    There are specific quality of life questionnaires for voice. Can I upload it or adapt it for patientslikeme so that a patient can fill it out from time to time
3.    What happens to the data if patientslikeme goes out of business? Does patientslikeme have something such as the data liberation front.
Please answer here or please call me.

There are several hundred actively engaged people with recurrent respiratory papillomatosis that participate in one way or another with online patient support groups. I am considering directing them to patientslikeme but need to know how things would work with regards to the 3 questions above. If your website already answers the questions then please accept my apologies and simply direct me to the relevant urls.

Farrel J. Buchinsky, MD - mobile: (412) 567-7870
Director, Respiratory Papillomatosis Program
Allegheny-Singer Research Institute
320 E. North Avenue
Pittsburgh, PA 15212-4772

By the way. The Category for the complaint is in medical witness. Not a claim to be one smart sir!

After multiple calls emails ex..... It has come out that the the Modoreator of the site did not contact me directly to sincerely reach out and right the initial wrong.  It was all an attempt to get me to write things to make the situation better for himself! I suspected this but in my character I made every attempt to remove the report as I truly believed he was sincere in his appology for how he spoke and deleteing my results with Artimisinin.  I even went to far as to offer a donation to help the RRP cause.   I was warned of this by Rip Off Report when I asked them to remove the report.  It turns out that they where very right!.  I have no more to ad to this report as I would refer each person to the initial accurate and true acccount of events.  I only feel bad that I went out of my way to try to help this person when I should have simply let the complaint stand. 

The individual who wrote the original report has repeatedly tried to rescind it, he says, and that can be verified from his own remarks on this website. It was a very damaging report, and it made many spurious claims. It requires a rebuttal.

First off, he falsified his identity. He is no medical expert, and the general flow of his report and inability to spell appear to confirm that. I know the person who posted it. He is a fellow patient, and after nuking us, he set-up a Facebook group. We have had hours of discussion, probably well-over 30 hours by telephone at this juncture, and he has admitted several times to writing the report. Over 20 hours were to support him as a patient, and we never charged any fees.

He was very angry because I kicked him twice from our forum, and his motivation appears to be entirely retaliatory, not -- as he claims -- based on a personality conflict. In 12 years, with probably >8,000 posts on several forums, it occurred no more than four or five times, if that. After being kicked, he then set-out to even the score, using Rip-Off Reports as his platform. As an ex-Marine, a lobbed grenade seemed to work perfectly.

It is true that I withheld a few patient reports on artemisinin because I either could not talk with the patient or else there were serious questions about sourcing/dosing. I suspect that affected about three patients, maybe four at a stretch. The other reports, where an apples to apples comparison could be made, are reported on http://www.rrpwebsite.org/index.cfm/fuseaction/category.display/category_ID/370. John Hopkins is reportedly also researching artemisinin for cervical cancer and dysplasia, and oncologists are using it. There was no cherry-picking on our side whatsoever, and this patient now knows that.

As for criticizing of patients or physicians, I can say this: The writer of this report has, in the past year, gone from being every patient's/physician's best friend to being a few of their worst nightmares. Any more nuanced critique on RRP ISA pales in the light of what he has posted about physicians on other website, much of which is so harsh that other patients have called him on that. These claims on our side can easily be verified, and I will provide that evidence if asked.

I think the patient has grown over the past year both as an individual and advocate, and he is less inclined to shoot from his hip. A year ago, however, he was pretty out of control, and his report confirms that. I am glad he endeavored to rescind the report, and I hope that anyone reviewing this page, which comes up high in a search on Google, will also consider this rebuttal.

In summary, the report was falsified in almost every way possible and was very damaging not just to RRP ISA but also to the RRP community. The "success" of his Facebook group in no way mitigates that fact.

Regards,

Michael Green, MSW, LICSW
President and Executive Director
International RRP ISA Center
http://www.rrpwebsite.org

RRP ISA is a non-profit, charitable 501(c)(3) corporation, Federal ID 91-2156850. This email and any files transmitted with it are confidential and intended solely for the use of the individual or entity to whom they are addressed.

After multiple conversations with the modorator of the rrp isa website.  We have realized the initial report was made because of a clash of personalities and misunderstanding rather then the modorator intentianally censororing or abusing me.  He has taken the time to explain his position as one of a modorator of accurate information on a very rare desease.  His intentions where to keep the information on his forum structured for the purpose of progress for our desease.  I was under the imppression I was on an open blog to network on ideas and didn't understand his goals and an argument ensued....I felt wronged at the time, but now have the big picture and I feel I jumped the gun on posting a negative title on this website as I have found out now that this site will not delete or update the positive events on the search title unless you pay them money.  I now feel more wronged by this site then I could ever by the rrp isa.  I hope all who inquire on this report get a chance to read the full story as the whole  thing is not helpfull to rrp and I hope some how some positivity comes out of this.  If not anything more attention on rrp and a better understanding of what rrp isa is all about.  Which is accurate info and helping rrp patients. 

We have asked this site to delete the post or at least update the situation title with the positive actions taken placed.  They have refused and seem to only show the initial report on the lead page.

We would like to report that we have found a common ground and are impressed with the modorators reaching out to me personally.

Although we had a disagreement oon how he oprated his forum, his information on his site is very valuable and is needed. 

Please remove the initial post as all issues have been addressed.

RRPPatient