New blog from Dr. Deckoff-Jones: A Reason For Hope

[Jemal]

Dr. Deckoff-Jones posted a new blog that details the results Dr. Snyderman has achieved by treating his leukemia (and ME/CFS) with ARV's:

I have something special to share with you, since hope seems in short supply today. One of our own is a clear beacon of light in the fog. Dr. Michael Snyderman's one man experiment has been presented here before, last in April, clearly showing a prolonged remission of his CLL due to antiretroviral treatment. Since then, he suffered a relapse, while still taking Retrovir (AZT) and Isentress (raltegravir). After carefully documenting the relapse, he added Viread (tenofovir) and here are his stunning results. This is the strongest proof of concept that we have at this time. It is possible he will be ignored, but by all rights, at the end of the day, he should be credited with changing medical history. He has been very brave and very restrained, having done nothing else for his cancer or his CFS, except for antiretrovirals. His leukemia allows for very precise monitoring, but do not forget that he had ME/CFS for many years prior to CLL, and he has experienced clinical improvement of those symptoms as well. It is a game changer, or should be.

More at:

http://treatingxmrv.blogspot.com/2011/09/reason-for-hope.html

 

[Enid]

Thanks Jemal - a reason for hope indeed - one gets so tired of all the debunking of retroviruses by some still going on.

 

[eric_s]

Sorry if some people might not like that, but i will say what i think. News from Dr. Snyderman were anounced before the BWG results and now one day after the negative results we get them. It is one man and we have no way to know what exactly happens there. My interpretation is that they knew the BWG results would be negative and so they saved this story for today. I don't feel comfortable having to say this and i'm really not enjoying it, but i won't let anyone fool me. They had their chance to prove they are right and they failed. Why i don't know. I gave them the benefit of the doubt for a long time, because that question is so important and i want to be sure we get the correct answer, but now the ball is in their court as much as it can be.

In my opinion they (the authors of positive studies and the people backing that hypothesis) now either have to admit they have been wrong or then challenge the BWG results. If they choose to challenge the BWG results i would think that's a courageous step and i would even be willing to help in any way i can for them to prove they are right, but i think first and foremost they should bear the costs themselves. But after this study it's them who now have to prove something. And for me it will take real proof, another blinded experiment where they (the lab) have no way of knowing who what sample is from. Anecdotal data and words don't change much for me anymore, very sorry for having to say that.

 

[Jemal]

Sorry if some people might not like that, but i will say what i think. News from Dr. Snyderman were anounced before the BWG results and now one day after the negative results we get them. It is one man and we have no way to know what exactly happens there. My interpretation is that they knew the BWG results would be negative and so they saved this story for today. I don't feel comfortable having to say this and i'm really not enjoying it, but i won't let anyone fool me. They had their chance to prove they are right and they failed. Why i don't know. I gave them the benefit of the doubt for a long time, because that question is so important and i want to be sure we get the correct answer, but now the ball is in their court as much as it can be.

In my opinion they (the authors of positive studies and the people backing that hypothesis) now either have to admit they have been wrong or then challenge the BWG results. If they choose to challenge the BWG results i would think that's a courageous step and i would even be willing to help in any way i can for them to prove they are right, but i think first and foremost they should bear the costs themselves. But after this study it's them who now have to prove something. And for me it will take real proof, another blinded experiment where they (the lab) have no way of knowing who what sample is from. Anecdotal data and words don't change much for me anymore, very sorry for having to say that.

Has anything changed on that particular point, though? The ball has been in the court of the WPI and the scientists who published positive studies for a long time now (since the load of negative studies appeared).

Someone already said it on this forum: the WPI has meant a lot so far for our disease. Like many I wouldn't even have registered on this forum if it weren't for them. So even though yesterday was a blow for many of us, I am still looking at the WPI for answers.

 

[eric_s]

I agree with what you've said in the first paragraph, but in my view, so far it was possible to say: It's all still very unsafe, a difficult, new virus, new assays, let's wait for more definitive answers. But now i honestly think their position can only still be justified if they can provide equally strong proof like the BWG phase III study.

For me it was the same, it was the XMRV findings that have brought me here. That's a good thing, but now we need valid results and answers. And they don't come from just making a lot of noise without being able to back it up with robust data. So now that's what we need, robust data we can trust.

Probably it doesn't make too much sense for me to say this again and again here, because i don't want to upset people who are already under enough stress (i'm in the same situation), but let's not fool ourselves, the only thing that can help us is serious, thorough investigation and after this i want the WPI to prove that this is what they are doing. Because we don't have resources and time to waste. We need hope, but it's pointless if we follow the ones who give us hope but can't bring us back better health. So we need to be sure they really are able to do that, at least that's how i see it.

 

[Daffodil]

FROM DR. MIKOVITS:


body


Sue
There are XMRVs different strains, we know that now and have already found them..now we know why we have struggled because the sequence of the virus was incorrect..now we can sequence all the strains and find the right drugs for each one...there is more hope today than yesterday..not less..

 

[Jemal]

FROM DR. MIKOVITS:


body


Sue
There are XMRVs different strains, we know that now and have already found them..now we know why we have struggled because the sequence of the virus was incorrect..now we can sequence all the strains and find the right drugs for each one...there is more hope today than yesterday..not less..

Did she e-mail that?

 

[Daffodil]

yea. i usually never copy an email but this might make someone feel better

 

[Overstressed]

Sorry if some people might not like that, but i will say what i think. News from Dr. Snyderman were anounced before the BWG results and now one day after the negative results we get them. It is one man and we have no way to know what exactly happens there. My interpretation is that they knew the BWG results would be negative and so they saved this story for today. I don't feel comfortable having to say this and i'm really not enjoying it, but i won't let anyone fool me. They had their chance to prove they are right and they failed. Why i don't know. I gave them the benefit of the doubt for a long time, because that question is so important and i want to be sure we get the correct answer, but now the ball is in their court as much as it can be.

In my opinion they (the authors of positive studies and the people backing that hypothesis) now either have to admit they have been wrong or then challenge the BWG results. If they choose to challenge the BWG results i would think that's a courageous step and i would even be willing to help in any way i can for them to prove they are right, but i think first and foremost they should bear the costs themselves. But after this study it's them who now have to prove something. And for me it will take real proof, another blinded experiment where they (the lab) have no way of knowing who what sample is from. Anecdotal data and words don't change much for me anymore, very sorry for having to say that.

Hi Eric,

it's good to remain sceptically, not to easily accept things. Only by asking questions, brings science further. It looks like everything has been answered, but I don't agree. People already mentioned the Hanson study, we have had the Fischer study, who just found XMRV easily in the throats of people. These are really good scientists, and perhaps they're wrong, but the good thing of all this, is that there's research ongoing, good people are looking at the virus, they're looking at the disease. I can not really speak of the lack of publicity the disease had, because I'm ill for only 4 years. But people who have been ill for a longer period of time, can better judge on that matter, but I think, the last two years, CFS/ME has got a lot of attention. Hopefully, it brings new research and new findings about the cause. I'm slightly a bit concerned that it will be put in the autoimmune basket and remains there forever. If you ask me personally, that is my greatest fear, to be classified as autoimmune. Why ? Like Jemal, I don't believe in that AI theory, the body attacking itself.

Take care,
OS.

 

[currer]

Thanks for doing that daffodil.

I still think the WPI are right. I am shocked that people dont support them more.

People forget the science is still so new.

 

[currer]

You could have an auto-immune disease developing from a retroviral infection.

But the retrovirus would still be the CAUSE and this should not be glossed over. I think there will be a danger of this as retroviral involvement in human disease is threatening to the medical establishment.

We may see a move to bury retroviral research in favour of immunological treatments. For example rheumatoid arthritis is treated with immune modulators, but a retrovirus has been a suspected cause of this disease for years.

 

[eric_s]

Hi Eric,

it's good to remain sceptically, not to easily accept things. Only by asking questions, brings science further. It looks like everything has been answered, but I don't agree. People already mentioned the Hanson study, we have had the Fischer study, who just found XMRV easily in the throats of people. These are really good scientists, and perhaps they're wrong, but the good thing of all this, is that there's research ongoing, good people are looking at the virus, they're looking at the disease. I can not really speak of the lack of publicity the disease had, because I'm ill for only 4 years. But people who have been ill for a longer period of time, can better judge on that matter, but I think, the last two years, CFS/ME has got a lot of attention. Hopefully, it brings new research and new findings about the cause. I'm slightly a bit concerned that it will be put in the autoimmune basket and remains there forever. If you ask me personally, that is my greatest fear, to be classified as autoimmune. Why ? Like Jemal, I don't believe in that AI theory, the body attacking itself.

Take care,
OS.

Thanks, OS. I also didn't buy what Dr. Levy said in the chat. I don't think it's so easy. But i'm not very afraid of that possibility you mentioned, because if they would really find something in the immune system they can treat and which makes people better, that would at least be a start. I don't think this would leave us stuck there, because it does not prohibit people from looking for the cause of the "autoimmune disease". I think it would probably bring in more funding and more researchers and they would get to the truth faster.

Eric