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Done reading PLAGUE by Dr. Judy Mikovits

Rrrr

Senior Member
Messages
1,591
WOWIE!!! and whew! i'm finally done reading/listening to the book Plague, detailing the ordeal we all lived thru around XMRV, and telling Dr. Judy Mikovits's side of the story.

- i highly recommend the book. apparently so do many others, as i saw the reviews on the book's page on amazon.com (just do a search on Amazon for the book's title + Mikovits and you can easily find the book.)

- i did a combo of reading the book and listening to the audio, depending on what my brain would allow me to do. (my brain has been very bad over the last few months while i have been in a bad crash.) i suggest this duo approach to patients who are in a position to buy -- or get their libraries to buy -- both the book and the audio. it is such a long book filled with complex science, plot twists and turns, and timeline shifts, so it was not an easy task to read it. so i'm proud of myself on that level. :) then, on a larger level, it was not an easy read because it was a slap in the face to read about all the scienfitic and political corruption that is likely responsible for me losing 2 decades of my life to this disease.

- it was horrific to read what Dr. Judy Mikovits went through and what she endured. to see it all spelled out in the book is like watching a key supporter of patients get pummeled in the face, kicked in the gut, over and over and over again. her courage, integrity and tenacity comes through loud and clear. i feel we patients owe her a lot for standing up for us over and over again, as she got pummeled over and over again, lost everything (money, career, reputation) for doing nothing wrong. in fact, she got repeatedly pummeled and lost everything for doing everything RIGHT for us patients.

- Dr. Frank Ruscetti also comes off as a real hero in the book. i personally feel indebted to him as well.

- the book is exciting and interesting, and that is great. even more, it is great to now know what was going on behind the scenes during the whole xmrv turmoil. but reading the book is also so sad. there are a lot of evils exposed in the book that translate to scientific and political corruption, and, as i wrote earlier, my lost 2 decades.

- nonetheless, it is a must read. it is like reading an update to Osler's web, our bible. in fact Hillary Johnson, the author or Osler's Web, wrote the foreword to Plague and THAT ALONE is worth the price of the book. it really summarizes the whole book and is so well written.
 

Countrygirl

Senior Member
Messages
5,429
Location
UK
In my opinion, no one with our disease can afford to miss this book. It is a story about us and certainly about the adventures of our blood and its secrets as well as the appalling and shocking treatment of the greatest scientific champion of our community. It reveals how governmental manipulation of the scientific process intertwines with scientific fraud and sheer incompetence motivated by corrupted egos, big business and monetary greed to 'disappear' an eighty-year-old devastating, life-destroying and even fatal disease from view. For those scientists who continue to champion the patient community and refuse to sacrifice their own integrity and the patient when they meet these forces head on there is one further punishment: destruction of their careers, false accusations driving them to bankruptcy, incarceration in jail on fabricated charges and loss of their scientific data.

We have two essential texts, both of which I strongly recommend to those who ring the Advice Line here: Osler's Web and Plague. They are essential reading for those of us who have this highly political illness.
 

Hip

Senior Member
Messages
17,824
In this book, does Judy Mikovits address the issue of the XMRV debacle, and why nobody else could reproduce her XMRV results?
 

Countrygirl

Senior Member
Messages
5,429
Location
UK
In case anyone has missed this information that I posted on another thread:

On Wednesday 14th January Dr Judy Mikovits is speaking live on the air at 4pm Pacific time. She'll discuss her new book PLAGUE, retroviruses, and environmental toxins. She'll also cover what kind of research is needed, and what she thinks are the best ways to structure and fund it. Perhaps most importantly, she'll talk about what *we* can do to help ourselves and our families. The event will be recorded if you can't listen live.

Here is the link to the radio.

http://prn.fm/
 

cigana

Senior Member
Messages
1,095
Location
UK
I'm about 3/4 way through. It's fascinating to read what goes on behind the scenes.

So here's what I don't understand....why aren't we still talking about retroviruses? As far as I can tell all the Blood Working Group did was rule out a very specific strain, which does not fill me with any confidence given the evidence.
 
Messages
10,157
Also, was there any mention of the repeated use of this slide, and the uncertain use of 5-azacytidine?

http://news.sciencemag.org/2011/10/chronic-fatigue-syndrome-researcher-fired-amidst-new-controversy

Thanks for the review.

@Esther12 I have just finished the book and no the slide was not mentioned nor was the use of 5aza. There were a few other things that were omitted that I would have liked to know about from her perspective. I have a whole bunch of questions that I doubt will ever be answered.
 
Messages
13,774
@Esther12 I have just finished the book and no the slide was not mentioned nor was the use of 5aza. There were a few other things that were omitted that I would have liked to know about from her perspective. I have a whole bunch of questions that I doubt will ever be answered.

Thanks Kina. Really, that was the stuff I was interested in. It would be good to have a proper understanding of exactly what happened but I guess it's not having an impact on patients now, so much less important that things like PACE.
 
Messages
10,157
Thanks Kina. Really, that was the stuff I was interested in. It would be good to have a proper understanding of exactly what happened but I guess it's not having an impact on patients now, so much less important that things like PACE.

@Esther12 What I found lacking in the book was there were very few quotes from other people to support her contentions. The information mostly came from Judy Mikovit's opinions and thoughts about things. Gerwyn seemed to be a person she quoted as a reliable resource near the end of the book which was hugely disappointing. There was a lot of information about her arrest and time in jail but it really was just added fluff for me. It was a lot of innuendo and not so much substance as in real proof. I know I am in the minority here with my thoughts. I just wish the questions I have always had were answered, they were not, so I feel disappointed. I might post more about my thoughts at some point but I think I need to go through the book again.
 
Messages
13,774
@Esther12Gerwyn seemed to be a person she quoted as a reliable resource near the end of the book which was hugely disappointing.

Gerwyn was the only person in the world who thought that those identical slides were not the same. Probably not the person I'd trust the most.
 

duncan

Senior Member
Messages
2,240
I think we'd all agree that sometimes questions raised by a paper or study or book can be every bit as important as those left unanswered.
 
Messages
10,157
I think we'd all agree that sometimes questions raised by a paper or study or book can be every bit as important as those left unanswered.

I don't think so. I think if you are going to make comments about other researchers etc, then you should be able to back them up with some kind of proof. To me, there was total negativity related to other researchers whereas she came off as a total perfect person. This not what I wanted to read. I wanted real facts and got none. Even the book introduction says:

Disclaimer The factual information presented herein is based on the experiences, documents, and recollections of the authors, as well as the various individuals who were involved in these events. However, the conversations reported within the text are written from the memory of the authors and others involved in these events, as well as supporting documentation when available, and only represent their best recollection. These recollections are not intended to be statements of material facts, but rather the opinion of the authors and others involved in these events as to what was said and their interpretation of the meaning of those conversations. Neither the authors nor the publisher claims that the conversations are accurately recorded, and we apologize in advance for any omissions or errors in content or meaning. All the people and events depicted are real. Some of the names have been changed for the protection of the individuals involved.

That was a very troubling statement.

There are some very important questions that Judy Mikovits has failed to answer. I also found that some of the history of ME was not correct re: dates of the first outbreaks etc. I was really annoyed related to her comments about Lipkin -- he must have some serious tire tracks on his body from being run over by the bus. There were also some discrepancies related to the notebooks. I guess people will take from it what they want.
 

duncan

Senior Member
Messages
2,240
Wow. Didn't even care for the disclaimer?

Good to see you approached the book without any bias. :cool:

Didn't raise any questions whatsoever about retroviruses, etc? None??

Well, then, maybe you did take from it what you wanted. Nothing wrong with that.
 
Messages
10,157
Wow. Didn't even care for the disclaimer?

Good to see you approached the book without any bias. :cool:

Didn't raise any questions whatsoever about retroviruses, etc? None??

Well, then, maybe you did take from it what you wanted. Nothing wrong with that.

You don't need to be rude @duncan I approached the book with one thought only -- 'please answer my questions'. I may be an anomaly here because I care not what the Whittemores or Mikovits thinks. I was hoping for some answers and I was actually really really disappointed with the book. I know that many will not like my comments but I am entitled to give MY honest opinion of the book.

Actually as far as the retroviruses go, no it didn't raise any questions because she didn't answer the questions I have re: the manipulation of slides and the problems with her study. I have reviewed the science related to XMRV and I am of the opinion that it was contamination. A retrovirus does not explain ME. Think about that. Judy said in the book:

Retroviruses had documented transmission through sexual contact, exposure to infected blood or blood products, or passage from an infected mother to her newborn child during gestation, delivery, or even breastfeeding. Retroviruses are transferred via body fluids, rather than by a vector such as a mosquito or a tick.

How do we explain that ME is an illness of mostly females -- retroviruses are equal opportunity infectors. How do we explain the outbreak at Incline Village -- did a basketball team and an independent group of teachers infect each other via body fluid transmission. And then, how was the infection spread to everybody else. I do have questions about retroviruses and every thing tells me, it's not possible. Even Mikovits couldn't replicate her own findings. There has been a lot of confusing talk about this but really one needs to go beyond Judy Mikovits to find the answers because she is fatally biased.

This are just my opinions. Take them or leave them. I don't need to be attacked for having a different view.