Why I Have Withdrawn Support From The QVF

It is my regret to inform those reading, as a founding member and first director of the Quinolone Vigilance Foundation (QVF), I am forced to withdraw my support of the QVF and have nThumbs_Downo confidence in its current leadership.

My history with the QVF goes back to a handful of floxed individuals who worked together fostering research and advocacy for Fluoroquinolone (FQ) Toxicity. We dreamt of starting a non-profit that would formally congeal this much needed research under one umbrella. Out of this dream the QVF was born and I was selected to be the first Director. Unfortunately, shortly after, changes at my job forced me to work long hours for many months, while floxed, in order to secure health insurance and income for my family. Doing this was detrimental to my health and forced me to step down and away from the QVF and FQ community. Leadership was turned over to others.

With that brief background as the context, my comments are being offered today knowing that I am intimately familiar with the impetus and goals that created the organization. The QVF, being a 501C3 established to foster research and advocacy for the entire FQ community, is held to a very high standard.  My comments are not designed to disparage any of those hard working individuals who, in the past, have labored long in the establishment of the QVF or those who have and do support the QVF publically.

Starting in January of 2015 I embarked on a personal undertaking to take a look at the FQ community. My main goal was to look at the community from behind the scenes, to get an idea who the leaders are within the community, communicate with those leaders, what their differences of opinion are, and what was driving those opinions and directions. Next, I ascertained the current state of FQ research. Finally, I then took a hard, long, unbiased look at how the QVF fit into that picture both from a research standpoint and a social standpoint of view.

My original intent was to assist the QVF in re-establishing FQ research ties that had been lost over the last couple of years. It was certainly not my intent to stop supporting the organization. However, after looking at the totality of the information, I came to startling and sad conclusion; the problems being experienced by the QVF, I felt, were mainly internal, as opposed to external.

This discovery ran counter to what I had expected to find. I was led to believe and assumed that external problems, such as strong community opinions, personalities, and motivations were the driving forces that were hampering the QVF’s meaningful forward momentum as a research driven organization. Although there are plenty of conflicting personalities and motives and there always will be, I was wrong in my initial assumptions.

It is my opinion that the organization, in its current state, runs counter to its founding premise and goals, has suffered from a form of mission drift and has morphed into an organization counter to its founding purposes. Wanting to remain truthful, I did not want my perceived public perception of the organization to run counter to my private feelings of non-support.

Keeping in mind that the QVF was originally designed to primarily initiate and foster FQ based research and to a lesser extent participate in advocacy, I formed several opinions as to why I felt that the organization is running counter to its original designs.

  1. It is my opinion, that the current board, in its makeup and structure, creates an environment that does, and will, prohibit the fostering, creation, or support of viable FQ research, something that is needed to fulfill the goals of the organization.
  2. It is my opinion, that the current board is too nepotistic in its make-up and does not contain an accurate reflection of the FQ community.
  3. It is my opinion, that the organization’s leadership publically supports WEGO Health, a company with ties to pharmaceutical companies that manufacture and sell both name brand and generic FQs.
  4. It is my opinion, that the current volatile state of the leadership has left many community leaders, former ambassadors, and participants feeling alienated and disenfranchised.
  5. It is my opinion, that the organization maintains relationships that are too closely aligned with several large law firms and could create unnecessary misconceptions and perceptions about credibility.
  6. It is my opinion, that the organization, is running too autonomously and lacks constructive ways to objectively look at critical feedback both internally and from the community and institute the necessary checks and balances in a fair manner to present factually accurate data regarding FQs in the public arena.

Although I found many, many more areas that I believe are in need of critical attention, these examples highlight some of the major issues.

At a time when we as an FQ community continue to expand our public recognition it is important for all entities in our community to explore collaborative approaches that promote the community’s goals.

The QVF was to undergird that process by acting as an umbrella to coalesce FQ research to support the community. It is my opinion that the QVF has failed in areas of community cooperation, research partnerships and transparency. Unfortunately, I believe, that the QVF’s public appearance runs counter to its actual current state, especially in the main area of FQ research, something I am very intimately familiar with. Unfortunately I believe the QVF’s problems, especially in the area of research, are irreparable without drastic organizational change.

I recognize that there are many good people who support and have contributed to the organization. I want them all to know that my regretful decision is not politically motivated but is based on my opinion of the ability of the organization to complete its mission as originally intended. I would be willing to civilly discuss my opinions with anyone who wishes more information or clarification.

Therefore, while withdrawing support for the QVF, I do support other groups and the many hard working women and men in our community that are working to end FQ toxicity, and advocate for the thousands of victims worldwide. I stand ready and willing to work constructively and cooperatively with those other entities to continue to promote the communities’ goals through a variety of means.

David

Comments listed below are the sole responsibility of the poster, please read my disclaimer for posting information and other site information.

Admin

...damaged by fluoroquinolones in 2007 at age 46. Prior to, a healthy law enforcement official. Now an amateur FQ researcher, author, and blogger.

37 Responses

  1. Wayne says:

    I have been in the FQ community for many, many years longer than David and was active in the old FQ toxicity Yahoo group that had over one thousand members. I always spoke frankly then and still do. I was reluctant when David started the QVF several years ago, knowing how hard it is to unite the FQ community. However, I felt that if anyone could unite the community David could. Well as we see, that attempt failed.

    It is pretty damning when the original founder/director does not have faith in an organization for the legitimate reasons he has spelled out here.

    Today the QVF is a faux organization that operates under the illusion that it is accomplishing anything. It piggybacks off of other’s successes and takes credit for other’s work, at the same time wasting money donated by fooled individuals for things such as plaques for lawyers! Seriously!!

    But please anyone reading this don’t take my word for it. Go an ask several leaders or individuals (those that have been around for while) in the Facebook groups where thousands exists if the QVF has united or represented the community, the answer will
    be NO!

    I will leave you with this fact….the QVF made much hoopla about being selected to appear before the FDA in the ‘Pliva vs Mensing’ generic discussions, most people do not know that they were ‘compensated’ by the America Trial Lawyers group to appear.

    That is disgusting and a fact that is not told. Such dishonesty should not represent a group of already victimized individuals!

    • admin says:

      Wayne, Thank you for your candid opinion. Yes being too close to lawyer groups, even those who claim to be standing up for people, is unprofessional and can be viewed as bias. It again was one of my criticisms (plus many others). Organizations who wish to remain neutral should not be so desperate for attention as to become too close to any organization (medical, law, etc…) as sooner or later a bias, actual or perceived, will become apparent. In the case of the Pliva vs Mensing you are right, as it is not what it appears to be on the surface at all.

      Anyway, these poorly thought out associations harken back to a lack of experienced leadership. We have not heard the last of this since there will be issues arising from the peripheral neuropathy class action as it progresses.

  2. Donna says:

    I agree with Wayne for the most part. I kept my mouth shut (shame on me) until I saw his comment. First, I support all who are seeking to raise awareness and I agree that the Pliva vs Mensing should be overturned but I think the way our community was represented was very dishonest. I will tell you why.

    The average floxie may not have noticed or would not have taken the time to dig into this but Wayne raises a very valid point. Pliva vs Mensing is about generic damage right? If that is the case would we not, as a community, want individuals who actually have noticeably been damaged talking in front of the FDA?

    Instead we got the author of Floxie Hope which is not the true representation of our plight. These drugs horribly and permanently damage people. Then we got the director of the QVF who claimed she was appearing as the QVF director and elsewhere a private floxed individual damaged by generic but she could not get her facts straight. On one site she clearly implies she did not have a generic according to her stated timeline (dates) and on another site she contradicts herself.

    Here is the important part that many overlooked, why were these two picked? It is simple, the author of Floxie Hope represents a website with a community following and the Director of the QVF represents and organization with a perceived community following. The American Association For Justice, which is the renamed American Trial Lawyers Association, paid these two, plus one other who also represents the QVF, because they figure they will get the more clients in the long run if the ruling is overturned. It was a simple self-serving business decision.

    It was not based on who best represented the Floxie ‘generic’ community, because if that was the case they would have gotten clients who are permanently visibly damaged in front of the FDA. There is too much self-serving going on in our community and until that is overcome we will never unite.

    • admin says:

      From what I understood, the AAFJ, compensated travel expenses for individuals presenting their stories.

      From the aspect of the QVF, I believe, their director and ambassador should have been integral in identifying floxed individuals to appear before the FDA but should NOT have appeared themselves. I would have never done or recommend any QVF member to appear as to avoid any conflicts of interest or appearance thereof.

      This highlights the lack of experience and the questionable motives in the leadership of the QVF. Also, in the outside chance that someone from the QVF would have to appear, any defined compensation or stipends for travel, lodging, and meals…should be clearly stated prior to. Not being transparent or being transparent after the fact is a big problem.

      • Wayne says:

        Semantics…from what I have read the QVF is always stressing semantics but some people in the community are smarter than that and yet others don’t care they just assume that the organization is out for good. Bottom line, it does not matter whether they did not get actually paid or not. If they got ‘reimbursed’ for lodging or meals or travel and were ‘selected’ to appear by a law group, it can be construed as bias, plain and simple.

  3. ExTexasQVF says:

    David, your article was very politically correct and I understand, but what truly changed your mind and why don’t you just mend the fences?

    • admin says:

      Ex, My article covered what my feelings were from a basic perspective and I believe addresses legitimate issues, but there was so much more. Don’t get me wrong I was a BIG QVF supporter believing strongly in the organization and I thought the problems they were having were external.

      I was put in a real quandary when I was tasked by them to help re-establish research and I am angry/hurt about how I was duped. I talked to many people in order to gain insight as to how to re-establish research and what I encountered shocked me. The stories were are all in the same theme. But it was not just their opinions that swayed me, it was documented facts. I literally had several people show me private email exchanges from the director and or QVF leadership that painted a tremendous difference between what they put out to the public and what the true nature of the leadership was.

      These emails were shocking. Again, they were not from one person, two, three or four, they were from several people who all were either community leaders or one time supporters of the QVF who had legitimate interactions with the QVF. They painted a very disturbing, disappointing, and disheartening picture that really hurt my feelings. I knew that I was being used as well.

      Then I was faced with the fact that the board was nepotistic and it was really being run by one or two people…..there were no legitimate ways to enact the change.

      But that is not all, they put people who I truly cared for in an almost bullying situation. These are people who have been hurt and victimized already. I really wish the community could see the emails and other documentation that I have seen, and maybe someday they will. It would change the entire landscape. I have debated it but I fear that it would cause more turmoil than what is needed.

      Again,if you could see the emails I have seen, they are shocking and border schizophrenic and paint a picture of jealousy, competition, narcissism, and the using of people. There are so many people being duped, its not funny. So, it has put me in a tremendous quandary, I cannot support the organization and yet I see good people being duped and used as well. Sigh….

  4. NotDuped says:

    How can you represent a community when over half of the community does not support you? The answer is you can’t!

    They are trusting on the community being extremely stupid, but the problem with that is, we’re not! Rachel was so toxic, as long as she has anything to do with the organization most people who do not support the QVF will continue not supporting it.

    The structure changes are just smoke and mirrors to fool the unsuspecting. Rachel is still the public face of the organization and she is going around doing damage control. She is not fooling anyone. She is creating a faux image of the organization hoping to gain the unsuspecting. To her everything is a competition to be won, not an effort to be shared by all, such a shame.

    I was shown a Facebook message conversation she had before she left Facebook (hint, hint she is still there indirectly), oh my, that was an eye opener. Besides being quite the potty mouth her demeanor is definitely not one that you would want running a organization such as the QVF in any capacity. She left way too much evidence of her true nature!

    To the QVF….you want to do some good, fire Rachel! Don’t just move her to a different position. Instead of attacking or dismissing those who disagree with you, or creating a fake perception of what does not exist, reach out and mend the fences with those who you have wronged or you will never gain the trust of whom you need….the community!

    If anyone new to the community reads this please listen, this is not just about sour apples, ask yourself this one question….why are the individuals from the community who are actually going to the FDA, working with researchers, and that are behind 95% of all the media stories, not working with the QVF? Why?

    As floxed we were already victimized by this travesty, don’t get fooled yet again, the proof is in the pudding.

  5. Neal says:

    I agree with Duped. I am new to the community and I have seen the split. There is 3/4 of the community on one side and QVF on the other. I have seen this before when polarizing people run non-profits. It is a shame that personalities get in the way. Shame on you, wouldn’t we get that much more done if we could all work together!

  6. Denise says:

    I have been encouraged by all the positive things that have come about in the last year. The Rally, the media stories, the community representation to the FDA. It is the most that has ever been accomplished. I think that this is happening because people are working together. If the QVF would address its problems and work together with those who are actually making things happen, wouldn’t that be wonderful. Just think of what could be accomplished.

  7. Hope says:

    Aren’t some of the original members still working with QVF?

    • admin says:

      Hope, the only person left that I selected for a leadership position, besides Rachel Brummert, is the treasurer Christina. I have not spoken with her since I was fired as ambassador. She was not part of the original group which worked for several years prior to the QVF being created. Ironically this original group is now working again on behalf of the community and we are getting a tremendous amount of things accomplished, which has been evidenced in the bulk of the media stories, FDA meetings and other things. We are working with many community members and getting much done. This is just the tip of the iceberg as we hopefully have great things coming.

  8. Wayne says:

    Whoa, Hold the horses. You were actually fired as ambassador? LOL, I didn’t know that. You mean after you posted your article about no longer supporting the QVF, no one approached you from the organization to address the problems? How were you fired?

    • admin says:

      Wayne, yes I was fired via a letter. There were three reasons given which I could easily refute factually but basically it was for criticizing WEGO and then expressing disapproval with the QVF leadership.

      I was removed from the QVF website as ambassador after I publicly pointed out the ties between WEGO and the pharmaceutical companies. I had not openly expressed disapproval with the QVF at that time, just WEGO.

      After I officially made my feelings known about how I disapproved of the QVF then I was sent a letter and fired even though I had been removed from the website as the ambassador quite a while before.

      • Wayne says:

        Well that’s just plain ridiculous. It shows that either their leadership is inept. Why is it that personal politics constantly get in the way? We need and organization to either unite the community and then use that unity to move the community forward. OR we do not need the organization. In this case we DO NOT need the QVF period. They play politics and personalities.

  9. ExTexasQVF says:

    Sorry for delay in following up. When my health issues flare up I take a break from the computer.

    Thank you David for the detailed reply to my question. I helped the QVF in a minor capacity but quit working with them for various reasons. I do agree with the issues that you have listed in your article and they basically reflect all the troubles that I encountered as well.

    The director attempted to portray the appearance of an organization that was growing and had a multinational presence . Well, the opposite is actually true. The organization, is Rachel. She runs it, directs it, and along with just a few other close friends are the QVF. Leslie, who I do like, goes around and tries to make the QVF appear in as an unbiased organization. She is either not aware of everything that is going on or is directly part of the problem, I don’t know which.. There is no transparency or good communication between them and the ambassadors, community, and so on. I wanted to help out but started getting that gut feeling something was not quite right. I always listen to my gut. Boy was I right in this area.

    The QVF is all about fulfilling the selfish ambition of a few people and is only interested in representing the community when they get full credit. It is very similar to our failed political climate in the U.S. A few people who crave and want power and attention and everything they do is about keeping it instead of getting along.

    My personal opinion is that the FQ community does not need a representative organization. You did the right thing by moving beyond and above this failed organization.

    • Admin says:

      Thank you for your candid opinion. I accept all people speaking with candor and honesty about this situation as I feel it is the only way, at this point, to enact change.

    • NotDuped says:

      I do agree with ExTexasQVF. The community does not need a formal organization representing us. The grass roots movement is work the best and accomplishing more. But if anyone really wants to change the QVF, which I do not recommend, I mentioned before, you need to remove the QVF leadership. Not just shuffle them around.

  10. OU812 says:

    Comment Removed by Administrator.

  11. Shawn says:

    I was floxed in the fall of 2014 but did not connect the dots until early summer of 2015. I was a camera man for a local news station and now I do editing because my tendons prevent me from travelling in the field too much. It is a very small news station that I work for. I became aware of the FQ issue after watching some of the ABC affiliate feeds and after that I connected the dots in my own story.

    First I want to thank all those who were involved in making the news stories happen because without them I may have never understood what happened to me.

    I would have never given this article a second look if it was not for something I accidentally uncovered. I subscribe to most of the public Facebook groups. One day I was catching up on reading the posts on the QVF public Facebook page and they made a comment thanking and taking credit for a news story at a local ABC affiliate. I happen to know the cameraman who worked at the affiliate so I called him a few days later to thank him for the FQ coverage and to pass on my thanks to the news anchor. During the conversation he put the news anchor on the phone and we talked about what happen to me. She said that there was a lot of public interest about the story and they would more than likely do a follow up. When I brought up the QVF, she said their affiliate contacted the QVF to look for interviewees but the QVF did not initiate the story.

    I contacted a QVF ambassador that I knew about the discrepancy as it bothered me, with me being in the news field. He (it was not David) told me in no uncertain terms that it was not the QVF who initiated the story and told me that the QVF was taking credit for the hard work of a certain talented woman who wanted to remain anonymous. I was disappointed in the QVF.

    The real kicker was that this ambassador was later ‘let go’ (again it was not David) by the QVF.

    Then I figured out what was going on. In the news world there are things called aggregators that collect news and rebroadcast it. The QVF is something of an aggregator. Basically rebroadcasting news and, on occasion, subtly making it sound like they are involved.

    I realize that people in the community are sick and do not have the time to check into things for themselves. They may think that everyone wants to get a long and play well together. I do not think this is the case with the QVF and there is something more underhanded going on and I have got a bad gut feeling. Look at their support of WEGO for instance and other things.

    Seriously folks, please beware!

    • Wayne says:

      Thanks Shawn. This revelation does not surprise me one bit. It is funny that when people dig a little they find out and then know better. I know it is not nice but I will be one of the first that says “I Told You So,” when their faux world comes crashing down. But seriously, I do not know what it will take to wake folks up. Maybe when they realize that the QVF is actually hampering their much needed research. Some people do not care.

    • ExTexasQVF says:

      David wrote in one of his articles that “just because people become floxed does not mean they check their bad behavior at the door.” In other words, if they were unscrupulous before, more than likely, they will be after as well.

      I do not think that there is anything sinister going on from a pharmaceutical standpoint. I would like see an accounting of how their finances are spent.

      I really just think it is a case of selfish, narcissistic personalities that cannot play well with others. The bad part is, at first it is an annoyance, but after some time it can become quite a problem. Especially since it detracts so much from the bigger picture.

    • Hope says:

      Despite the leadership, I believe there are some really good people working for the QVF.

      • ExTexasQVF says:

        Hope, I agree with you. There are many, if not most of the people involved with the QVF excluding the leadership that are good decent people wanting to do the right thing, no partisan politics, no secrets, no bullsh*t. The oblivious ones are either new to the community and/or are not aware of the continued faux pas of the leadership. My recommendation to those individuals is to move one. You are not going to change the organization, they are not what they seem, and you get much more done if you want to help either on your own or working with people who actually get something done, not go around handing out plaques to everyone and pretending to get things done.

  12. Dr. DB Gorski says:

    I am a Pediatric Optometrist that does not prescribe any anti-infective from the Quinolone family. I have read your story and admire your communities’ honorable plight for recognition in lieu of the Nov. 5 FDA hearing. I do believe there is something to the wider toxicity profile reported by some patients administered Quinolones, which in a round a bout way is the reason for my two quick observations..

    While doing a search on Quinolone induced mitochondrial pathologies, (yes, doctors do Google searches for unique queries as it saves time), I was barraged by a frustratingly large amount of search returns that led back couple of websites, My Quinolone Story not being one of them. I am sure your readers know of the ones I refer to. These sites link a myriad of legitimate Quinolone related academic research articles into a web of non-science-that-looks-a-lot-like-science (in other words, pseudo-science). Although there are an overabundance of legitimate academic papers mentioned, and linked, throughout most of the Quinolone articles, most contain many items that are just factually wrong, that betrays a level of ignorance of basic human biology that should preclude the author from writing about any medical topic. I assume that these sites could only be popular in an arena of laypersons who would not, and understandably so, know the wiser.

    The age of the internet has combined extraordinary information access with unfortunately woeful scientific illiteracy. Although I may disagree with some of David’s conclusions, at least this site is clearly written by some who is not pretending to be something else. I am afraid several of the quinolone related community sites masquerade as offering legitimate science, we assume, to people looking for factual science answers. Most of the articles seem to be nothing more than a thinly veiled promotion of the author and are devoid of anything that can be considered basic scientific journalism. Because of this I can surmise that many of my esteemed colleagues who are led into a legitimate search, by having to wade through, and take the time to dismiss this conjecture and pseudo-science that is parading as science, ironically walk away disheartened not enlightened.

    Now that I have that off my chest, this brings me to my point, in light of this article. David highlights some very important points that people in the FQ community should pay close attention to and change, if possible, if you are to look to the organization, referred to as the QVF, for your representation. I say this not to degrade but to give you a legitimate chance of building respect upon the positive things that have been taking place. As I see it, there is no way that the QVF can be taken seriously from an academic research standpoint based on the concerns elucidated. As a matter of fact I would not consider them as a good advocate as well. The issues highlighted in this article, in addition to my concerns that I highlighted in the paragraphs above, have the ability to do far more damage to your cause then it helps it.

    Why do I take the time to bring my opinions to your attention? With new found attention directed towards the quinolones, my main concern is for the basic struggling patient who is looking for answers or the medical practitioner who may be open to searching for answers queried from patients as well, they are not well-served by misinformation parading as authoritative medical knowledge; Or by an organization with the faults listed above. These two concerns are both distracting and quasi-dangerous.

    This site seems rather rational so I would hope that you find my concerns as legitimate. I wish nothing but the best in your quest for recognition and justice.

    • Admin says:

      Thank you Doctor for your insights. I hope your points are used as discussion starters for genuine conversations to take place on these tough subjects throughout the back rooms of the community.

      I agree, with the new found attention post Nov. 5 FDA hearing , which comes about because of years of previous groundwork laid, the community needs to further unite and work together. Selfish interests detract, degrade, and hinder, what could be a much faster forward momentum, if we would just work together.

      It is akin to a dysfunctional family, where no one wants to address the dirty little secrets that keep the family from fully uniting, and new family members are not even aware of them.

      Thank you for recognizing the dangers of the FQs and do not hesitate to contact me if I can be of assistance in any way.

    • Todd says:

      There are too many agendas at play. I think the best that the community can hope for is the current level of participation and unification we see. I am impressed with the recognition the community has gotten from FDA in the last year. I could not get their attention years ago. I am under no illusion, I know that current level of recognition came about because of a handful of dedicated people working unselfishly and not because of any organizations or websites. In the U.S. right now, grassroots seems to be the most effective way.

  13. Donna says:

    The QVF did not work together with the community for the Nov. 5th hearing. They acted completely autonomous. At least it was nice to see about 3/4 of the community work together, to put the books together and organize and good showing at the meeting.

    I should not be upset that that QVF and Floxie Hope do their own thing. At least they are only representing about 1/4 of the community but could you imagine if everyone worked together with no self-interest or personal agendas.

    • ExTexasQVF says:

      Did you expect anything different? If they haven’t up to this point, they are not going to. Everyone should realize by now that the QVF is going to always be directed in the direction Rachel steers, it is a faux organization. Disappointingly so, she has some people nice people completely buffaloed.

      As for Floxie Hope, even though this thread is not about her, I think it is apparent to most folks in the community for any length of time that she is in it for notoriety. Period.

  14. Neal says:

    Has there been any attempt from the QVF to reach out to you to address the grievances you listed in the article? After all, there are some legitimate concerns listed. Any one of which by the way would give me reason not to trust a particular organization . I would think that if they are a truly a professional org they would have stayed on top of this issue instead of running from it our not commenting on it, given you started the organization and current standing in the community.

    • Admin says:

      Neal, no not really. Other than individuals, mainly ambassadors, who left the org, I have had only limited contact. Leslie said she wanted to talk to me in the Spring of 2015 because she said she was was only getting half the story. That was when she was acting director, but then she had a personal tragedy in her family and I never heard from her again. She seems like such a nice person but I don’t have time for the games so I moved on.

      I had one person from the leadership contact me in the fall (Sep 2015), they were doing it on their own and not representing the organization. They did attempt to bridle my hands by wanting me to agree not to say anything publicly about the conversation so I honored that for a while, till I realized that same thing was going to happen, no further contact. We did have a positive conversation where I again addressed all of my grievances, which not surprisingly, they could not refute, and they basically agreed with and confirmed all my suspicions about the running of the organization. Like Leslie, I never heard back. So I moved on again, they do not seem to taking any of these attempts seriously.

      The saddest part lies in the area of research. All the advocacy in the world will not help us if we cannot get good research done. Professional researchers have their reputation at stake, and they will not touch the QVF with a ten foot pole. The only options the QVF has, is #1 Keep certain details from the researchers like their close ties to lawyer groups, or #2 invest in alternative research which won’t go anywhere given our current system.

      Again, my door is always open. But since this debacle started, emails have been ignored, warnings have been dismissed, people mistreated, promises have not been followed up on. Things could have been corrected but their leadership (one person) has chosen a different path.

      So sad.

  15. Susan says:

    Mark Girard is a community leader, or at least I have read where he stated he was, and I have seen interviews where he claims to be. He seems to be outspoken on issues of injustice and fairness. Where does he stand in these issues with the QVF? Even though you spelled out some very disturbing issues which should make anyone hesitant to donate or volunteer with the QVF, Mark, seems to be silent on this. I can see why promoting the QVF would make us as a community look rather foolish in the long run.

    I could understand if the complaints levied against the QVF were frivolous or jealously motivated but they are serious concerns. Why don’t Mark, step up, and make a public statement about the QVF since they have made no public attempts at addressing the grievances in well over a year and they claim to represent the community.

    • Admin says:

      Susan, I can’t speak for Mark. I do know him to attempt to stay neutral, almost to a fault. You would have to address those issues with him personally. I will confirm however that they have made no attempt at correcting the issues I have addressed, if they have, they have not communicated with me in anyway about it.

  16. NO_BS says:

    What the hell is wrong with everyone in this community?!?! The QVF supported and worked with an organization that had pharmaceutical company members on the board that MANUFACTURED AND SOLD the poison that devastated our bodies. The QVF should have been dumped at that moment!

    • Admin says:

      NO BS, Yes, I know for a fact, they were warned early on in the their involvement with WEGO not to get involved because of the pharmaceutical ties. They made excuses and proceeded. You speak the truth. I outlined in an article WEGO’s clear ties to pharmaceutical companies that make and sell FQ’s and that the QVF participated regardless of the connection.

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