January 2010

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Written by thefreeprisoner

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Transcription by Kim

Judy Mikovits
Section 2 (Video #1: 27+ mins to 40:08)

On some of these patients we looked three and four times for the DNA in the unstimulated cells. So this is just that pellet that I made when I sorted all the various samples. I just held one as white cells so that I could make DNA later or RNA later, depending on the technique I wanted to use downstream. So, it’s important that this was in 68 out of 101 samples. It was 68 out of 101 patients and it clearly says that in the paper.

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Posted by Cort Johnson

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Written by thefreeprisoner

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Transcriptions by Advocate, JAS, Lily, thefreeprisoner, Kim & garcia of the Phoenix Rising Forums

Question: Before any of the questions I just wanted to say thank you because through your work and your collaboration, you’ve bought more excitement to the CFS community and your collaborators have than in 2 decades. And you’ve also brought more interest in the illness than we’ve probably seen ever, so I thank you.

Judy Mikovits: You’re welcome. [Applause]. That’s interesting, because the reviewers of the paper didn’t really know what CFS was. They said: “oh that’s a poorly understood and complex disease” and they went on to the virology.… Read More

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Posted by Cort Johnson

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Written by thefreeprisoner

1063-DrJudyMikovits.jpgTranscribed by Sproogle

…the response elements that might give us a clue as to the pathogenesis and then Bob Silvermans lab showed the same thing. He showed that androgens stimulate transcription (the replication and division of the virus). So here’s a clue to the disease because we know the only two diseases so far that are associated with this retrovirus are prostate cancer (a hormone responsive disease) and CFS (one that’s thought to occur primarily in women).

Interestingly that I didn’t say that I knew is LNCaP is androgen responsive.… Read More

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Posted by Cort Johnson

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Written by thefreeprisoner

1065-bell_david.jpg[If you missed it, part 1 of this transcription is here]

When you look at XMRV at this point, it seems to me that this is a very good theorietical cause for the illness but that’s gonna take some time before that’s proven. And I’m happy to say that if it’s proven to be the cause then we’ll go from there. If it’s disproved, then I’ll say OK, but I want it to be disproven by science not politics. If it’s put aside because of political inconveniences then I’m not going to be able to accept that.… Read More

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Posted by Cort Johnson

A look back at the Pro’s and Con’s of Dr. Reeves Tenure at the CDC

THE PRO’s  - despite the antagonism towards Dr. Reeves there were some pro’s to his program

A commitment to research – whatever you want to say about Dr. Reeves he  was a vigorous ME/CFS researcher.  We can’t know what the internal milieu at the CDC was like but at least in public he presented the disease as a serious disorder that was worthy of research.

Documenting economic losses and prevalence – CDC studies establishing high prevalence rates (Wichita study) and economic losses (approx.… Read More

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Dr. Reeves Out at the CDC

January 29, 2010

Posted by Cort Johnson

In a startling announcement on 3pm on Friday the CFIDS Association of America reported that the man who’d vowed to outlast everyone, Dr. Willam Reeves of the CDC, was out and that Dr. Elizabeth Unger was temporarily taking over controls of the CDC’s CFS Research program.

Certainly, no one expected this. At the end of the recent ten year evaluation period the CDC had appeared to turn blind eye to all the complaints; neither the CFIDS Association documentation of a huge amount of waste in the program, or later the IACFS/ME’s or the CFSAC’s calls for fundamental change or the scathing public review session seemed to make any difference at all.  … Read More

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Written by Kelvin Lord

Treatment #1

The adventure begins.

I arrived at the Doctor’s office a few minutes late because of bad planning on my part, so I was a little stressed to begin with. It took them about a minute to get me set up in a nice reclining chair in the “infusion room” and when Gwen took my routine vital signs (blood pressure, and pulse) she commented: “So, you’re a little excited today, eh?” and smiled. Apparently my BP was a little high, but her attitude mitigated my need to ask further questions, or do my usual “journalistic interrogation.”

Gwen, the nurse practitioner who actually does the infusions, calmly went over the procedure, explaining how the first couple times they were going to give me less than the full 400ml of the “drug”, and work up slowly.… Read More

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Posted by Cort Johnson

The Recovery/Recovering Stories #4

Janet’s  Story

What really attracted me to Janet’s story was how multi-dimensional it was.  She’s had both severe endocrine dysfunction and severe pathogen problems. Both high doses of antivirals and alternative ‘behavioral-like’ therapies like meditation and her own quest for (spiritual) wholeness have been important for her. She’s still quite ill but she’s much better than she was. The kind of multidimensional treatment approach she’s used will probably be helpful for many.

Mine is a long and complex history, but which of ours isn’t. In 1990 I was diagnosed with Hashimito’s and shortly after Fibromyalgia.Read More

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Written by thefreeprisoner

1037-DrJudyMikovits.jpgThanks to ‘thefreeprisoner‘ from the Phoenix Rising Forums for transcribing the first part of Dr. Mikovits talk on Prohealth on Jan 22nd.

Annette Whittemore:

Dr. Mikovits Prohealth/HHV-6 Fdtn XMRV Lecture

…happy to see that the ProHealth organisation was able to get this online so a lot of patients who are too ill to make it are able to follow this online.

First of all I’d like to that Rich Carson, I’d like to think ProHealth for putting this together and the HHV-6 foundation and Kristin Loomis.

It’s a pleasure to be here and to have an opportunity speak to you about the recent discovery of XMRV in Chronic Fatigue Syndrome patients.… Read More

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Day 7 (Mon) – The Dreaded Lumbar Puncture

My L.P. is scheduled first thing in the morning. I am prepped by Dr. P.’s wonderful nurse of 17 years. Her voice, her actions, everything about her is calming. The test is done in a regular exam room, nothing exceptional is done and street clothes remain on. By 9 AM it’s over. The few pricks felt as the Dr. finds the right spot to withdraw the fluid are nothing to write home about as I lie in989-LumbarPuncture.jpg an exaggerated fetal position on the exam table on my left side.… Read More

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Posted by Cort Johnson

“And suddenly I could see myself 20 years from now, when I’m a high school biology teacher and someone calls and says, ‘Hey, they just found a retrovirus in CFS’. And maybe that’s how it will happen. And I know how I’ll feel – it’ll feel great” Elaine DeFrietas

Chronic fatigue syndrome (ME/CFS) patients, of course, weren’t the only ones to feel the sting of this mysterious illness – their advocates have as well. Certainly there’s no more disheartening story on the researcher end than Elaine DeFreitas whose career rose and fell on the horns of the dilemma that has been chronic fatigue syndrome.… Read More

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Quote:
“And suddenly I could see myself 20 years from now, when I’m a high school biology teacher and someone calls and says, ‘Hey, they just found a retrovirus in CFS’. And maybe that’s how it will happen. And I know how I’ll feel – it’ll feel great” Elaine DeFrietas

Chronic fatigue syndrome (ME/CFS) patients, of course, weren’t the only ones to feel the sting of this mysterious illness – their advocates have as well. Certainly there’s no more disheartening story on the researcher end than Elaine DeFreitas whose career rose and fell on the horns of the dilemma that has been chronic fatigue syndrome.… Read More

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XMRV: the Urgency of Money

January 14, 2010

Posted by Cort Johnson

In a recent article on RJC.com Dr. Mikovits came out swinging.  Fights between researchers can get nasty but its probably rare that they veer into this kind of territory. After suggesting that the Imperial College group purposefully tried not to find the virus  (!) Dr. Mikovits referred to the fact that the paper was paid for, remarked on the quick submission  time and finally suggested that the insurance companies were behind all this.

Is she paranoid or are they really out to get her and the WPI and anyone else who purposes an organic cause to this illness?… Read More

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Posted by Cort Johnson

And if you see some negative papers coming out, don’t be discouraged. It’s going to happen. There are going to be some negative papers. People really jump to do this. And the method is not that easy and getting the right bits and pieces you need together  (is not easy)” Dr. Nancy Klimas

The Brits Smack XMRV…Or Do They? - The first XMRV Replication attempt has been published and its a doozy. Originating from the Imperial College in the UK (with patients supplied by Simon Wessely), the study found zero (that’s zero!) evidence of XMRV in 186 CFS patients.Read More

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Let me begin by listing my reasons for writing this.

To share my experiences with everyone who’s interested but may never intend to see Dr. Peterson.To give some insight to anyone who might be considering making an appointment but may have concerns regarding what it may entailTo help someone prepare for a scheduled appointment to see Dr. Peterson

Becoming A Patient

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Like many of you I had always dreamed of seeing a real, honest-to-goodness, CFS/ME specialist. Like most of you, over the course of 18+ years with this illness, I have vacillated between times of doing nothing medically with times of seeking out new treatment or alternative approaches.… Read More

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2009 : Looking Back

January 5, 2010

Posted by Cort Johnson

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EVENTS

  • Biggest Event - what else? XMRV takes the spotlight as no research finding has 656-XMRVnodules.gifbefore, retrovirologists across the world clamor for samples, worry mounts about a tainted blood supply, Hilary Johnson blows into the New York Times Op Ed section, and patients gasp and cross their fingers in hopes that it will all work out. See XMRV Information Center
  • Most Surprising Event – Demonstrating that it can, in fact, be done, Mike Dessin’s near complete recovery from near death, after using a novel treatment approach manages to trump even XMRV as the most sheerly shocking event of the year.
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Lost in the Woods

January 4, 2010

Chronic fatigue syndrome (ME/CFS) takes people to many different places but its pushed few people as far from a normal life as it has Lisa.  Lisa has a twofer;  a severe case of both chronic fatigue syndrome and environmental illness.  If chronic fatigue syndrome is often numbingly difficult environmental illness (EI) or multiple chemical sensitivity (MCS) is simply harsh.  EI often pushes people out into a kind of grinding third world type battle for  shelter and warmth that few in our society have to worry about.   Add ME/CFS to EI and you truly have a struggle of epic proportions.

LOST IN THE WOODS – by Lisa

My name is Lisa and I am a survivor of the devastation multiple chemical sensitivity (MCS) and chronic fatigue syndrome (CFS) can cause to an otherwise healthy and happy life.Read More

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Posted by Cort Johnson

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I received my test result back from Cooperative Diagnostics. I was, like everyone else who has taken the poll thus far, tested negative. I was able to get the test done because I was part of an XMRV study CD is doing.

Given the results of the Imperial College tests the results are illuminating because both groups appear to be using a similar strategy; ignoring the sequences the WPI tested for and instead focusing on sequences they know (or believe they know) are there. This is certainly a legitimate way to test for ‘XMRV’ as we know it.… Read More

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2009 In Review

January 1, 2010

Posted by Cort Johnson

EVENTS

  • Biggest Event – what else? XMRV takes the spotlight as no research finding has before, retrovirologists across the world clamor for samples, worry mounts about a tainted blood supply, Hilary Johnson blows into the New York Times Op Ed section, and patients gasp and cross their fingers in hopes that it will all work out. See XMRV Information Center
  • Most Surprising Event – Demonstrating that it can, in fact, be done, Mike Dessin’s near complete recovery from near death, after using a novel treatment approach manages to trump even XMRV as the most sheerly shocking event of the year.
  • Read More

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