Phoenix Rising Articles

Phoenix Rising Team submitted a new blog post:

Breathing Deep with Valtrex: A Patient Improves

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. I was in profound pain for 4 years with my thyroid levels going up and down, no one could regulate them. In 1995 I had three crashes, that's how...

Article: A Visit to Dr. Peterson: Part IV: Spinal Tap, Costs and On the Road Again

You can view the page at http://forums.aboutmecfs.org/content.php?22-A-Visit-to-Dr-Peterson-Part-IV

Phoenix Rising Team submitted a new blog post:

Dr Judy Mikovits On XMRV and CFS from Prohealth; Part I

Written by thefreeprisoner
Thanks 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

• Part I
  
• Part II
  
• Part III...

Phoenix Rising Team submitted a new blog post:

A Visit to Dr. Peterson: Part IV: Spinal Tap, Costs and On the Road Again by Corinne

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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 in an exaggerated fetal position on the exam table on my left side. Once the correct spot is found the longest wait is for the fluid to fill the three vials. The...

Article: A Visit to Dr. Peterson Pt. III - SPECT Scan and Some Test Results

You can view the page at http://forums.aboutmecfs.org/content.php?21-A-Visit-to-Dr-Peterson-Pt-III-Spect-Scan-and-Some-Test-Results

You can view the page at http://forums.aboutmecfs.org/content.php?20-The-First-Retrovirus-in-Chronic-Fatigue-Syndrome-%28ME-CFS%29

Phoenix Rising Team submitted a new blog post:

XMRV: the Urgency of Money

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?

One can only speculate but one thing is clear - money matters in Science - it matters a great deal. Medical research only thrives when its hooked up to a money spigot and retroviral research needs one of the biggest spigots of all. It may be that...

Article: A Visit to Dr. Peterson II: First Appointment and Testing

You can view the page at http://forums.aboutmecfs.org/content.php?17-A-Visit-to-Dr-Peterson-Day-1-Testing

You can view the page at http://forums.aboutmecfs.org/content.php?16-The-Imperial-College-XMRV-Study-The-Brits-Smack-XMRV-Or-Do-They

Phoenix Rising Team submitted a new blog post:

The Imperial College XMRV Replication Study: XMRV in Trouble....or Not?

Posted by Cort Johnson








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. (Here's a link to an article...

You can view the page at http://forums.aboutmecfs.org/content.php?3-My-Cooperative-Diagnostics-Test

You can view the page at http://forums.phoenix-cfs.org/content.php?14-2009-Looking-Back

Phoenix Rising Team submitted a new blog post:

A Visit to Dr. Peterson: Part I

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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

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...

Article: Corrines Visit to Dr. Peterson Part I

You can view the page at http://forums.aboutmecfs.org/content.php?11-Corrines-Visit-to-Dr-Peterson-Part-I

Phoenix Rising Team submitted a new blog post:

2009 : Looking Back

Posted by Cort Johnson
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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...

Phoenix Rising Team submitted a new blog post:

Lost in the Woods

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...

Phoenix Rising Team submitted a new blog post:

My Cooperative Diagnostics Test

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. Whether its a good test for what the WPI found is another question.

This is what they said.

Quote:

The two strains of XMRV found by Lombardi et al in chronic fatigue syndrome that were...

Phoenix Rising Team submitted a new blog post:

2009 In Review

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...

Phoenix Rising Team submitted a new blog post:

A Dark Vision

Posted by Cort Johnson

Hilary Johnson, beloved CDC headhunter is raking the CFIDS Association over the coals again. Once again she's taking no prisoners. In her last blog on the CAA she called the organization the Bechtel of the CFS community and accused them of inciting a 'pogrom'. In this blog she proclaims CAA is the CDC and vice versa .

Osler's Web was a tour de force of journalistic acumen - a remarkable achievement for anyone let alone someone with this disease. Yes, it left no room for honest but wrong researchers coming to grips (badly) with a mysterious problem; but even if Hilary put her own spin on them the facts were there.

But are they now? Hilary Johnson spun a dark web in Osler's Web but she's spinning a much darker one now. An author can only do so much to damage a taxpayer financed independent federal agency but an author can certainly...

Phoenix Rising Team submitted a new blog post:

Phoenix Rising Researcher of the Year Pt. 1

Posted by Cort Johnson
The Researcher of the Year analysis doesn't just take research into account; it also includes their outreach into the patient community and their impact on how the research field is functioning. This year the Researcher of the Year was an easy choice. Dr. Vernon excelled in all three categories in 2008.

(As she did in 2009. I only got to the 2008 Researcher of the Year award late in 2009 but my tardiness only worked out to Dr. Vernon's advantage. In 2009 she picked up on and expanded her work with the exciting new International Research Network - this award includes work done in both years)

Dr. Vernon made an enormous leap when she left the security of a 17 year career at the CDC to become Scientific Director of the CFIDS Association America (CAA). As Scientific...