When trolls attack: an open letter to “Dora”

 Posted by on 2012-03-21 at 7:14 am
Mar 212012
 

[Correction: The name of the leader of the anti-Ruggiero campaign is Dora, not Nora, as I originally wrote.  Thanks to J Todd DeShong (aka Truthy McTruthenstein, and other pseudonyms) for pointing out this error.]

Dear Dora,

You and your ARV-loving friends at the HIVforum (Italian language forum for HIV-positives) might want to have your medications checked. Your latest public attack on a respected and admired researcher is nothing, if not irrational.

When did you decide that you can speak for all of us who have AIDS, or who test positive for HIV?

Your recent rant against University of Firenze (Italy) professor Marco Ruggiero, as reported at The Truth Barrier, is amazingly ill-conceived, malicious and detrimental to the well-being of all of us who are living with illness and HIV, and I am compelled to call you out.

You have accused Ruggiero of advertising for patients to experiment with his probiotic yogurt, and you have claimed that he is putting people with HIV disease at risk by suggesting they not take their AIDS drugs. You offer no evidence that either of these allegations are true, while I can, and will, provide evidence that in fact, the opposite is the case.

HIV-positive since 1998, I have been free of the antiretroviral drugs (ARVs)  since 2003.  Today my health, based on the classical markers of CD4 counts and PCR viral load, is not good. I am considering resuming anti-retroviral treatment, because I happen to believe those drugs will reverse the decline in my CD4 count, and hopefully reduce my so-called viral load to undetectable.  I am less convinced that the drugs will make me healthy, and I will not subject my body to them any longer than absolutely necessary.

The decision to take ARVs or refrain from taking them is a well-informed patient’s personal choice that should be honored and respected. Despite the press release news from pharmaceutical marketing departments, there are no magic bullets for dealing with a chronic illness like AIDS.

When did the AIDS-Affected community decide that ARVs are the only acceptable way to fight HIV disease? I’m grateful that we have the drugs when things get bad, but I am completely disgusted with the sell-out of the AIDS-Affected community to the pharmaceutical industry, which is making record profits, despite a global economic downturn. Before I will resort to these drugs, I will try just about anything that might accomplish the same goal, with a lower risk to my overall health and well-being. If you object to the right of individuals like myself to pursue these goals, then you are no friend to the AIDS-Affected community; rather you are our enemy.

In the event I ever do feel compelled to take the ARVs again, I will seek out any adjunctive and alternative treatments that might help relieve the well-documented (on your forums, no less) adverse effects of ARV toxicities.

There is no way for me to know which, if any of the experimental protocols I have explored the last ten years have helped me postpone the decision to take ARVs again. Was it oriental medicine and acupuncture?  Perhaps orthomolecular medicine’s use of high dose intravenous vitamin C?  Low dose naltrexone?  Ultraviolet blood irradiation?  Was it supplementation of known precursors of glutathione?  Who knows?  Why don’t we know?  Where are our demands as AIDS activists for research into these alternatives and supportive treatments, in addition to pharmaceutical research?

Who the hell are you to try to intimidate someone who is researching and exploring the possibility that a probiotic product might help some of us by restoring gut health and strengthening our immune systems… whether we are taking ARVs or not?  That is madness and is the real crime against people living with AIDS.  I do not speak for all of us either, so I will speak for myself and some others who believe the ARVs should be a treatment option of last resort, not the first. Fortunately, at least one other group of HIV-positive patients in Italy, calling themselves HIVInforma, have taken the initiative and written their own letter of support for Ruggiero.  I add this open letter to theirs.

The most obvious difference between the campaign to discredit Ruggiero, led by you, and the campaign of support by those of us who are HIV-positive and supportive of AIDS research that is not beholden to powerful and profit-oriented pharmaceutical interests is that all of us who are supporters have been willing to attach our names and our identities to our cause. You, on the other hand, and those who have put you up to your malicious deeds, cloak your true identities. You are shadowy Internet trolls trying to destroy the reputation and livelihood of a compassionate and respected researcher who has demonstrated that his interest is in quality of  life for patients, not personal gain and profit.

I admit that I would do just about anything to get my hands on MAF 314, and indeed I have tried to do so.  When I contacted Marco Ruggiero about acquiring MAF 314 earlier this year (he never solicited me), he made it clear that the experimental product could be made available only through a physician sponsored research project.  I happen to have a very good relationship with a medical facility that has been conducting research on  nutritional medicine for more than 30 years, and introduced my personal physician to Dr. Ruggiero.  They have discussed the possibility of conducting a pilot study of the effect of Ruggiero’s probiotic yogurt in patients with HIV and/or AIDS.

As a patient who is personally averse to the ARVs, except in the most extreme circumstances, I asked Dr. Ruggiero if such a project could involve only people like myself who were not taking ARVs. If he was the villain you claim him to be, I doubt that he would have responded as he did:

Here in Europe doctors recommend that patients do not change their therapeutic regimens because of probiotic yogurts. Therefore, we are observing subjects who are assuming ARVs as well as subjects who are not. We noticed that subjects who are assuming ARVs or chemotherapy for cancer while consuming probiotic yogurts, reported an almost complete disappearance of the side effects of their respective treatments and a general improvement in their conditions. In subjects who began assuming ARVs and yogurts at the same time, the rise in CD4 was dramatic, much more that what observed before in the same subject with ARVs alone. For ethical and legal considerations, I suggest to adopt the same approach, that is to add the yogurt as a nutritional complement to whatever therapy rather than to consider it as an alternative. Time will tell whether it could be considered an alternative. Of course, if a subject is not assuming any type of therapy and there is not the need to assume it, then the yogurt could be consumed “alone”.

As you can plainly read, Dr. Ruggiero is at the very worst neutral on the question of ARVs in his response to me, and he certainly did not recommend that anyone quit their AIDS drugs to take his yogurt instead. Indeed, quite the opposite.  That you suggest such is the case is an outright fabrication.

You might be even more surprised to learn that neither Ruggiero, nor myself hold as narrow a view about AIDS as do too many others in leadership of the AIDS dissident community. Below you will find the balance of Professor Ruggiero’s response to my questions, posed to him privately about a month ago. I have requested and received permission from him to share this information now, only to help shed some badly needed light on the disparaging and false charges you and your cohorts have made (emphasis added by me):

Nagalase is definitely recommended as well as those exams that are specific for a given disease (e.g. CD4 and VL for HIV; tumor markers for tumors and so on). Other tests such as those that you mention would also help understanding the effects that we are observing. Also tests that look for stool microbiome and microbiome diversity would help. Since we observed significant effects on red blood cells, platelets and other blood cells (NKs), a complete analysis of blood cells and lymphocytes could also be very informative.

Let’s think together about this point; the important point is that the patient is not left alone. In my opinion it is not important who is the doctor taking care of the patient as long as there is a doctor who is willing to do this. Since here we are talking about a nutritional supplement that complements and does not substitute for any existing therapy, I think that even non-dissident doctors could be interested and have no ethical or legal problems. I realize that this might not sound dissident enough, but I learned to be pragmatic if I want to help real people.

I did not know this. I can tell you, however, that when we were in Germany with cancer patients, we thought that whole body hyperthermia could help HIV patients too. If you look at blood cells under a microscope just after a single treatment, you would be astonished. You have no idea of how many things could be done, experimentally, with time and money. However, in full sincerity, let me play the Devil’s Advocate part; what if we discovered that a combination of low dose ARVs and probiotic yogurts rises CD4 to very high levels and lowers VL to zero with no side effects whatsoever? And with the addition of a feeling of well being never experienced before. With not a single cold or cough during this past harsh winter? This is exactly what we are observing right now in one (only one, I know) friend in Italy.

Now it’s time for you and your loathsome compatriots to come clean. What kind of person would make false charges and allegations against a public figure anonymously? As a person living with HIV and diagnosed as having full-blown AIDS, I am completely flabbergasted, flummoxed and bafoozled by your actions.  I fully support all research into ways to help those of us with this disease to live healthier, more normal lives.  I do not want to be dependent on pharma-solutions alone, and neither should you.

What possible objection could you have to research into natural and nutritional therapies to help our bodies cope with the sometimes horrific consequences of being prescribed a lifetime of chemotherapy in the form of AIDS drugs? Your lack of concern for us all is appalling.

Ruggiero can defend himself as the honorable and respectable researcher that he is. This is a personal confrontation between two of us who are affected with HIV/AIDS.

You admit that Ruggiero was no threat to you, your health, or the health of your fellow forum members until you were contacted by another anonymous troll who goes by the ridiculous name of “snout”! What is wrong with you?  You protest the research of a man who has been published in the peer-reviewed literature, presented at the International AIDS Conference, and has been praised for his “great contribution” by the International AIDS Society… all because you lent your ear and your sensibility to a non-entity on the Internet?!  Your recent attack on Professor Ruggiero is something that could make the basis for a fable or night time horror story, not the actions of a responsible representative of people living with a life-threatening illness.

With this very public letter, I join with the group known as HIVInforma in supporting Marco Ruggiero’s humanitarian research goals.  As an individual living with AIDS, I am  calling on you to come out of the shadows of anonymity; renounce your misguided attack on Ruggiero; and urge you to issue an apology to him and to the rest of us Affected immediately.

[Note:  I wanted to write more about the role of “snout” in this debacle, but the website responsible for the libelous attacks against Professor Ruggiero (hivforum.info) has been unavailable for several hours, with a message “forum in maintenance” displayed.  The optimist in me is hopeful that saner minds have prevailed at that site and that “Dora” and her campaign of malice is being purged.]

 

  10 Responses to “When trolls attack: an open letter to “Dora””

  1.  

    Really, really dead-on Jonathan! Thank you for taknig the time to write it.

  2.  

    Fantastic piece. I am re-posting it at The Truth Barrier. Thank you for lending (consistently) full energy, knowledge, critical details, and emotion to the situation. If more people did this and exited “defeated” mode, we would all be safer, and closer to the good. 

  3.  

    Bravo, this is marvelously well-written and precise. Only an idiot could not be moved and reconsider the horrible mainstream lies such as “HIV is the virus that causes AIDS” and “ARVs are wonderful medicine.”

  4.  

    You’re a great writer Jon! 

  5.  

    Nora and her friends are definitely not speaking on my behalf! HIV+ since 1988, nearly died on ARV’s during the Concorde trial, healthy and doing well ever since I stopped taking ARV’s after listening to Prof. Duesberg’s advice. I want to make it known that I do not want Nora and her group represent me in any form whatsoever! HIV does not cause AIDS. 

  6.  

    Jonathan,

    This is an excellent piece of writing. I completely respect you for penning it.

  7.  

    Beautiful work! Thank you so much Jonathan! 

  8.  

    Well done, Jon!

  9.  

    What a great work!!!

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