Ruggiero and www.hivforum.info

[Skydrake]

Excuse me for my English.
I'm a member of http://www.hivforum.info, a Italian forum of HIV sieropositive people.
Two days ago there was a thread on ME/CFS forum to this address:
http://forums.phoenixrising.me/showthread.php?16447-HIV-patients-against-Ruggiero
About the denialist doctor Ruggiero of the University of Florence and my forum.
Some of the members of this ME/CFS forum criticized the hivforum with funny observations, like "impossible to contact" (???? We are usually quite fast in answering, in threads as in PMs. Every day there are new posts of people who ask for information worried to be infected or people who ask for pratical information concerning their health), "we are a group of people connected to big pharmas" (instead there are plenty of forums against big pharmas i.e. check opinions about Gilead and the commercialization of Truvada as PrEP, or opinions against the Bionor, Todd Rider and Ensoli in the section for new studies) and about "the useless of antiretroviral medications" (I'm sieropositive, in only a year of antiretroviral therapy my CD4 are doubled and the CD4/CD8 ratio is three times before, like a normal person).

Moreover, and most of all, I was particulary worried about your entuxiasm to support doc. Ruggiero. A person who try to sell for 5000 dollars a "yogurth" as a medication agaist cancer and AIDS with only a study on ONE sieropositive supported here, is a severe damage for the image of the ME/CFS forum.

Maybe this probiotic could be useful for the therapy against AIDS (and cancer, and SCF, and CMV etc.) but before it needs approfondite studies about the safety and efficancy. Every medication, every therapy needs years of study on large groups of patients. Even this probiotic.

Regards,

Skydrake

 

[pilgrim]

Skydrake,

I just had a look at your website which I didn't even know it existed.
I've also just read through the letter of condemnation of the work of Prof Ruggiero that you, or whomever in the name of the "HIV forum group" wrote.

I won't go into the debate of the science in the HIV field of which I know nothing.
I'll just make a few personal considerations.

1. Branding Ruggiero as a "denialist" and the source of "bad science", as you do in your letter, sounds quite illiberal and intolerant of scientists who have different ideas from mainstream science and your own.
It reminds me of the type of climate and style at the time of the Spanish inquisition... How can this type of mentality foster real scientific discovery? Aren't scientists allowed to think for themselves and pursue different research paths from the mainstream?

2. You are misinformed about the price of the Maf314. The figure you quoted here and on your website is incorrect. (I hope you'll rectify that).
It's not what I paid for it. To clarify this point the actual cost of the Maf314, here in Europe (there may be doctors elsewhere willing to speculate and charge more money to patients) is 2.8 per day, per one person.
Before I started taking the Maf, and being on long-term antibiotics, I used to take plenty of other ordinary but expensive probiotics. With the Maf314, I'm financially better off.
If you really were interested in considering the facts, all facts, you would have done so, as it would have taken you say, a simple phone call or email to find out the actual cost of the product. That you couldn't be bothered to check out such a simple fact, makes me suspicious of your true aims.

3. Like others on this forum, I've had only a good experience as a patient with the GcMAF treatment. It's certainly experimental but after only two months on it, my gut function has improved a great deal and has never felt better. Whether, Maf314 can do other good things remains to be seen, but certainly I have not experienced any side effects.

4. I have seen many top specialists for my condition, CFS, including top guys from the hospital in Milano that you mention in your letter as the source of the "correct" science. Let me tell you that if it had been for them, ALL of them, I'd be bed bound by now as that was the path I was steady on.
I even had to leave my own country in search of a treatment that would set me free from my illness, as I found top doctors in hospitals throughout the North of the country (Pavia, Milano, Bergamo, Padova etc.) more interested in their position, career and political correctness, than trying to help patients in any way possible.
But I don't blame them, as I understand that their hands are tied in terms of treatments they can and cannot do, as one informally admitted.

All of which thanks to that illiberal and intolerant spirit that now prevails in the medical establishment. That same one that your letter against Ruggiero also calls for. The result? We have now a medicine where (to use Prof. Wheldon's words) "the intelligence of the individual practitioner has been steamrollered by the notion of 'evidence-based medicine'. This Orwellian phrase means nothing more or less than conformity with currently accepted practice."

I don't think your letter and efforts will bring any good to the world of medicine. At best, it will only make the life of the few doctors who have the courage to stick their neck out for patients, all the more difficult.

All the best to you (but not to your anti-Ruggiero campaign).

 

[Esther12]

Sorry, I know little about this topic, and the other thread has now disappeared, so I may not understand the context of this thread, but I'd disagree that there's anything necessarily wrong with accusing a researcher of doing 'bad science'. Plenty of researchers do, and we should be intolerant of it. Sadly, the desperation people feel to recover their health can leave them susceptible to quackery, and there does seem to be a problem with HIV 'denialism'.

I don't know whether it's fair to describe Ruggiero as an HIV denialist, but I don't think that anyone should be concerned about the 'illiberalism' of a forthright rejection of the claim that HIV does not cause AIDS.

 

[Skydrake]

1. Branding Ruggiero as a "denialist" and the source of "bad science", as you do in your letter, sounds quite illiberal and intolerant of scientists who have different ideas from mainstream science and your own.

I have to inform you that Ruggiero is a member of "Rethinking AIDS":
http://rethinkingaids.com/

He was one of the lecturer at the last Italian denialist conference ("HIV INFORMA ") in Bari in May 2011:
http://www.slideshare.net/HIVINFORMA/hiv-informa-intervento-prof-marco-ruggiero

and there is plenty of denialist material in his site:
http://www.marcoruggiero.org/

He simply doesn't believe that HIV is cause of AIDS.

2. You are misinformed about the price of the Maf314. The figure you quoted here and on your website is incorrect. (I hope you'll rectify that).
It's not what I paid for it. To clarify this point the actual cost of the Maf314, here in Europe (there may be doctors elsewhere willing to speculate and charge more money to patients) is 2.8 per day, per one person.

You are misinformed how Ruggiero tried to use this situation to make money. I have to inform you he tried to organize courses on how to prepare Maf314, at the price of 5000 dollars:
http://www.lila.it/lilachat/forums/thread-view.asp?tid=99602&posts=863&mid=228991
http://hivforum.info/forum/viewtopic.php?f=2&t=196&p=1664&hilit=venia#p1664

 

[Calathea]

I absolutely agree that HIV denialism is terrible, but I'm not quite sure why we're discussing this on a forum for ME.

 

[ukxmrv]

Hi Skydrake,

I'm really sorry that yourself or any member of your forum was caused distress by posters with CFS or ME in relation to a AIDS/HIV controversial doctor.

When I first heard about MAF314 I looked at the videos by Dr Ruggiorio and was aware of his views. I lost friends early on to HIV before retroviral drugs were invented so I am sensitive to issues around treatment, causality (and the lack of it).

What I did with Dr Ruggiorio was keep in mind his HIV views when I evaluated the MAF 314.

We are in a rather different position to HIV patients, especially here in the UK, as we have no effective treatments for the disease available on our national health system. We also face disbelief and hostility from doctors and all government agencies. In the UK ME patients live and die often in poverty, in pain, in extreme sickness and abandoned by all the usual safeguards of society.

We don't get investigations into drugs for us. In the UK we are denied drugs that would help us. Patients have no power and unlike the early days of HIV are too sick to protest and there is not network of well supporters. Our doctors face discrimination and live in fear that they will be struck off the medical register. It's a serious health crisis and a serious human rights issue that no one is interested in.

Let's frame what Dr Ruggiorio is doing using the description above.

In the world of an ME patient we must be grateful for crumbs. I wish with every bit of my body that this was different. Every doctor and every treatment that could possibly help us is a crumb we need. I don't know if Dr Ruggiorio can help us but I do know that his yoghurt product helped my stomach in a way that no other yoghurt, probiotic or treatment has ever done in the decades that I have had this disease. Will it help my ME, immune function or other more serious concerns - I simply do not know. Small mercies I know but I haven't had many of these.

Dr Ruggiorio has made the methods for producing the yoghurt available through a doctor in Austria now so it is still expensive but not the $5000 upfront. Patiens are begining to share the yoghurt and information informally. Another doctor in the USA with a great reputation and popularity with ME patients is also looking at a version of the yoghurt at a much cheaper price. So things are progressing albiet too slowly for many of us who have waited decades for any progress.

If MAF314 could help or cure ME then 5000 would be a small price. Lots of doctors who treat ME in a private practice can easily charge that amount in tests, fees and treatment - all experimental with no guarantee of success.

A researcher in the USA (involved with retroviri in the blood of patients) said recently that if this was HIV research then we were in 1983. Remember what it was like for the early AIDS/HIV patients who desperatly looked for any treatment before retroviral drugs became available? - well we are there now. We are not dying so quickly and in such large %'s but it is a very long, slow, horrible death for many of us.

Most of the things I have tried for this disease just don't work or make me worse. It's too early to know if MAF314 or Dr Ruggiorio will be able to help us to get well. It may be that there is a retrovirus associated with ME and we will need these drugs developed for us instead. Until then we are stuck with experimental treatments and in the UK a largly hostile government and medical / research body. We protest, write but no one listens and many of us are bedbound so cannot get out to do this.

Crumbs. These are our crumbs. If this was 1983 you would be in our position. We hate this, totally hate this situation. You are in the position now that we dream about.

One day there will be a properly researched treatment for ME but given that I have been sick for nearly 30 years I may be dead by then. Until then I have no choice. It's experimental or nothing. We use these forums to evalulate the many experimental treatments available to us to help make decisions on where to spend what little money we have.

MAF314 is being discussed and patients know that it is far too soon to know how helpful it will be. For long term, incurable ones like myself we need to consider anything that could help (as we have probably tried all the rest or they are restricted to us).

Once again I am so very sorry that distress was caused. I hope that I have explained the horrible position we are in and that understanding can be achieved by both groups.

 

[Dan_USAAZ]

I did get a chance to read the original thread (from PR members) before it was removed and feel I need to come to the defense of Skydrake. Here are my observations and interpretations.

- Our own PR forum members created a thread criticizing the HIV Forum. Skydrake came to PR to defend their stance and explain.
- Skydrake did not appear to criticize the use of MAF314 for ME patients.
- The HIV Forum appears to be criticizing Dr. Ruggiero for recommending that HIV positive patients go off of their antiretrovirals and start eating MAF314. I do not know if the doctor has truly made this recommendation. If he has, then I would agree that this is bad science, because it is not science at all. The researcher is attempting to be a clinician and giving medical advice to patients. Advice that could severely harm or kill the HIV patient. I have to agree with Skydrake that there needs to be many more years of research with MAF314 before the HIV positive patient should forego antiretroviral medications for MAF314.

With the original post down, I cant go back and review, so my comments are from memory. I do not have an opinion as to whether the doctor is an HIV denialist, but it does not seem logical, given his many years of work with GcMAF/HIV. My understanding is the whole point behind GcMAF is that a pathogen (cancer or virus) is producing Nagalase, which causes macrophages to stay dormant. If the doctor does not believe that HIV is associated with AIDS, then what other pathogen does he believe is causing AIDS? If he believes no pathogen is causing AIDS, then why use GcMAF on AIDS patients.

Sorry, got off on a tangent in the last paragraph. The main observations that I wanted to make are that
1) Skydrake came here in response to the criticisms initiated by PR members.
2) The HIV forum did not appear to criticize the use of MAF314 for ME patients.
3) The primary criticism the HIV forum has of Dr. Ruggiero is that he has recommended HIV positive patients to go off their meds and eat MAF314 instead. Again, I dont know if that is true, but if so, I would have to agree with their criticism.

My observations are based on what was posted on the PR forums. I am not able to review the HIV Forum firsthand, due to language barrier. If others have more accurate information, please set me straight.
Thanks!

 

[Undisclosed]

Maybe I can help clear this up. The thread that was deleted was titled "HIV patients against Ruggiero" with a link to a pdf regarding Ruggiero. There were then a few posts stating that the associated HIV forum was not real. The person who started this thread was not looking for this kind of conversation and asked that the thread be deleted.

People from the HIV forum are upset with Ruggiero because he states that HIV does not cause AIDS and GcMaf can be a stand alone treatment for HIV infection. I believe Skydrake was upset that the forum he/she belongs to was said to be a fake. It has over 14,000 posts on it about many different things, so it is a real forum with real people. I think, if I saw a post on another forum somewhere on the internet stating that Phoenix Rising was a fake forum, a shill for something, I would have joined the forum to state that this was not true.

Kina.

 

[Daffodil]

why does ruggiero think that HIV does not cause aids? it certainly cant be only because GcMAF seems to help.

 

[pilgrim]

You are misinformed how Ruggiero tried to use this situation to make money. I have to inform you he tried to organize courses on how to prepare Maf314, at the price of 5000 dollars:
http://www.lila.it/lilachat/forums/thread-view.asp?tid=99602&posts=863&mid=228991
http://hivforum.info/forum/viewtopic.php?f=2&t=196&p=1664&hilit=venia#p1664

The post on your forum quotes $5000 but in reference to what Dr Cheney in the US charges his own patients. This doctor is obviously adding his own profit margin to the basic cost.
Do you want to blame Ruggiero for the actions of another doctor?

The cost in Europe, and what I paid, and what reported in one of the posts from your link
http://www.lila.it/lilachat/forums/thread-view.asp?tid=99602&posts=863&mid=228991
that's 1000 for six months for two people, you can do the maths to work out the cost per person.

Why didn't you report the 1000 cost in your letter, instead of the $5000? Again, I get the impression that you're not really interested in the facts.

 

[Skydrake]

The post on your forum quotes $5000 but in reference to what Dr Cheney in the US charges his own patients. This doctor is obviously adding his own profit margin to the basic cost.
Do you want to blame Ruggiero for the actions of another doctor?

The cost in Europe, and what I paid, and what reported in one of the posts from your link
http://www.lila.it/lilachat/forums/thread-view.asp?tid=99602&posts=863&mid=228991
that's 1000 for six months for two people, you can do the maths to work out the cost per person.

Why didn't you report the 1000 cost in your letter, instead of the $5000? Again, I get the impression that you're not really interested in the facts.

Because, to some people of the other HIV Italian forum mentioned before (www.lila.it/lilachat) Ruggiero answered to people who ask for information also with some mail like this:

La sperimentazione del MAF 314 in USA
questa estate ha fornito risultati eccellenti che verranno presentati
dal Dr. Cheney al congresso mondiale di Ottawa il 22 Settembre e dal
sottoscritto al congresso italiano a Padova il 28 Settembre.

Dopo il successo della sperimentazione in USA questa estate, abbiamo
deciso di non mettere in vendita il MAF 314 per evitare speculazioni.
Abbiamo deciso invece di insegnare ai soggetti interessati a
produrselo a casa propria, in modo da metterli al riparo da
speculazioni assai probabili viste le propriet del prodotto. Pertanto
in USA abbiamo organizzato corsi della durata di tre giorni in cui i
partecipanti hanno preparato il proprio MAF 314 con una scorta per un
anno per due persone. Visto il successo e l'entusiasmo suscitato nei
partecipanti, pensiamo di ripetere l'esperienza in Italia, a partire
dalla seconda met di Ottobre. Il costo del corso in USA stato di
5.000 USD; stiamo ancora lavorando sui dettagli, ma pi o meno il
costo dovrebbe essere lo stesso in Europa, cio 3.600 Euro. Se Lei
interessato, me lo faccia sapere; infatti i posti sono ovviamente
limitatissimi (non pi di 5 persone per corso) per riuscire a fornire
un insegnamento di tipo seminariale veramente individuale. Il primo
corso, sperimentale, in Europa verr eseguito a met Ottobre in
Toscana ed gi stato tutto prenotato da una Clinica Austriaca.
Conteremmo di poterne organizzare un altro nell'ultimo fine settimana
di Ottobre.

In other words, Ruggiero tried to organize similar courses even in Italy. but the rumors about these courses was published on the LILA forum:

http://www.lila.it/lilachat/forums/thread-view.asp?tid=99602&start=876

The group LILA (Lega Italiana per la Lotta conto l'AIDS) is a famous group of activist again AIDS, but, like large groups, very heterogeneous. Some years ago there was a split and the more active and skeptical members founded the HIVforum (in fact the very first name of our forum was LILAnew). The more alternative/new-age/organic/open-to-everything members remained to LILA. So in LILA forum there are several members who sympathize for Ruggiero and these rumours didn't cause so much scandal. But instead our group follow our ex mates, now half enemies LILA members. Then, the rumour arrived to the rectorate of the University of Florence. So, Ruggiero didn't announce anything in the conference in Padova at the end of September and he began to answer to people that the courses were posponed.

Our impression is that Ruggiero revieved an halt form the rectorate. to give to pepole a probiotic for free is a matter, to make money on an experimental medication is an another matter. For sure, the relations with Ruggiero and the Rectorate of the University in this very moment are afwul.

Please, notice I'm not writing that MAF 314 doesn't work, but that MAF 314 isn't properly studied. Without proper studies, it impossible to understand the validity of anything. For istance, some of members of LILA forum contacted dr. Ruggiero and starded to take MAF314 on themselves (without any seiuois control, like the double blind check ect.). After a while, a first person started to declare the validity of MAF 314 (in the same thread I mentioned before), until we found he was already taking gutadione, another experimental medication. Also in the same thread (of our ex mates, now half enemies, I notice), you can follow the evolution of studies of MAF314 performed by dr. Ruggiero (before a large group of people, then only 6 people, then we found that in the group of 6 people, only one was sieropositive, then there were added more people, but with different methods). It is impossible to understand the efficancy of the MAF314. After all, it is normal that a person who is a denialist (so he doesn't understand the basics of the virology) is also a bad researcher. It is difficult demostrate anything if you have problems with the scientific method (and not only wih the scientific approach of Galileo Galilei, but also with the principle of cause-effect so well explained by Aristotelis).

 

[Waverunner]

Skydrake: I don't know how good MAF 314 works but I agree with you that the scientific method is the only way to beat HIV, CFS and many other diseases. We need to understand diseases at the micro level in order to create cures. Unfortunately we most of the time have no cures and this is why patients turn to denialists or other scammers because they claim to be able to cure diseases with easy to use treatments. In my eyes the only way to speed up the way for recovery is to improve and speed up the scientific methods by providing enough funding and letting the scientific method do its work without interference from government. It is a shame that people in the UK are not able to buy the medication they need, but it all comes down to the principle of liberty. Governments waste huge amounts of money (welfare, wallstreet, wars) while so many people are still ill. These people need to be cared for by putting the money into science and nothing else.

 

[Skydrake]

In my eyes the only way to speed up the way for recovery is to improve and speed up the scientific methods by providing enough funding

I agree, but now, expecially in Europe, there is almost no money . The situation in Italy isn't so severe as Greece (it is in full economic collapse), but the Goverment is saving money on everything. In Italy there are only three-four interesting experiments and studies concerning HIV and money to fund only a pair, so studies go much slower than they can. Our group is very active to denounce waste of money like for useless studies.

and letting the scientific method do its work without interference from government. It is a shame that people in the UK are not able to buy the medication they need,

At least, in UK, almost for HIV-AIDS, they found money to extend the healthcare coverage:
http://hivforum.info/forum/viewtopic.php?f=9&t=1023
http://www.bbc.co.uk/news/health-17187179

 

[Skydrake]

Last update:
Just some minutes ago it has arrived the communication that the rectorate of the University of Florence has set a special commission with the task of making appropriate inquiries and, if necessary, to report to the autorities the facts that emerge
http://hivforum.info/forum/viewtopic.php?f=22&t=925&start=20

 

[mellster]

I don't understand this at all - nobody forces you to take Ruggiero's offer. Why don't give people the choice? If this is unscientific quackery as asserted, nobody would pay for such a therapy anyways and they would go broke in an instant. Whenever government intervenes in such cases, it smells of corruption. The likes of Duesberg and Ruggiero might be outliers, but to call them scientific quacks is ludicrous. Let people be free - science thrives on disagreements

 

[Esther12]

If this is unscientific quackery as asserted, nobody would pay for such a therapy anyways and they would go broke in an instant.

I don't think that's true - there's loads of popular quackery about, and people making money from it. I've never heard of Ruggiero before this thread, so have no idea about his work or treatments though.

 

[mellster]

Ruggiero holds a professorship with the University which is likely his main source of income - I doubt he could survive on selling MAF314 courses alone

I don't think that's true - there's loads of popular quackery about, and people making money from it. I've never heard of Ruggiero before this thread, so have no idea about his work or treatments though.

 

[ukxmrv]

Dear Skydrake,

I do hope that you understand from my post how very bad things are for patients with ME and CFS. I've already had some small benefit from MAF314. We totally understand that this is an experimental treatment.

We also understand that the HIV/AIDS community are not all the same. We have divisions in our own groups.

Do you understand that all treatments for ME and CFS are experimental, that this is a serious and incurable disease and that many of the treatments we are offered are expensive with no guarantee of anything?

I'd hate to see Dr Ruggerio attacked for offering MAF314 to PWME such as myself. We really do grasp at crumbs for any treatment. This is a desperate situation for us as we don't get access to state funded treatment like HIV/AIDS patients get (like antiretroviral drugs).

In the UK HIV patients have clinics and treatments we can only dream about. As I said earlier this is a humanitarian and human rights issue that no one is interested in.

Could you please give me some indication that you have at least read my message and understand my feelings please?

Many thanks for continuing this dialogue.

 

[baccarat]

I don't get it. Why would anyone want to subject a probiotic yoghurt to clinical trials?
If I could afford the 1000 upfront I'd try it myself. From the feedback I read on this forum it seems to help quite a few people.

I think in about a year or so we'll probably know whether Maf314 is just a very good probiotic or can indeed help stimulate the immune system and really help people with CFS.
In the first case it will probably fizzle out on its own. But if the Maf is anything as effective as preliminary data suggests then I can understand why they want to shut Ruggiero up as quickly as possible.
The Maf could hurt big pharma quite badly not to mention all the scientists in their pockets.

 

[baccarat]

I don't think that's true - there's loads of popular quackery about, and people making money from it.

Yes and starting from the corrupt scientific process that leads to the licensing and misuse of drugs which causes so many unnecessary deaths.

And of course, let's not forget the corrupt science behind "evidence-based" treatments for CFS.