April 2011

Posted by Cort Johnson

Dr Elizabeth Unger: leader of the CDC cFS research programAs the Pandora/Dr. Unger meeting, which was prompted by a Pandora letter signed by several US organizations, is about to occur and as we move into our big advocacy month the Phoenix Rising Board is releasing its own letter to Dr. Unger (and is explaining why it did not participate in the first letter.)

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The Phoenix Rising Board Letter to Dr. Unger

First the Board of Phoenix Rising want to congratulate Dr. Unger on your recent appointment as Acting Chief of the Chronic Viral Diseases Branch at the CDC. We realize that you assume this position during very challenging times when relations with the ME/CFS patient community are at an all-time low and trust and respect for the CDC is almost non-existent.Read More

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Posted by Cort Johnson

Dr Elizabeth Unger: leader of the CDC CFS research programDr. Elizabeth Unger, the first new CDC CFS Research Chief in over ten years, has replaced Dr. William Reeves – a forceful and controversial figure who put his own initimable stamp on the CFS research program. The ME/CFS community certainly didn’t want someone from within the CDC to emerge as the research head but now that we have her, let’s take a look at her.

She is smart 

Whatever else Dr. Unger is she is smart. She holds both an M.D. and a PhD and her PhD Is in Biological sciences from one of the major Universities in the country; the University of Chicago where she focused on pathology.

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Dr. Elizabeth Unger, the first new CDC CFS Research Chief in over ten years, has replaced Dr. William Reeves – a forceful and controversial figure who put his own initimable stamp on the CFS research program. The ME/CFS community certainly didn’t want someone from within the CDC to emerge as Research head but now that we have her, let’s take a look at her.

As Pandora gets ready to have the first patient to CDC Chief meeting in memory let’s look at what we know about Dr. Elizabeth Unger.

She is smart – whatever else Dr.… Read More

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Posted by Cort Johnson

President Obama on CFS in Reno Pres Obama Answers Question on chronic fatigue syndrome

Robert Miller has been uncanny in his ability to get near prominent public figures and push them for more support with ME/CFS. Despite having a severe case of chronic fatigue syndrome that keeps him from being able to work and participate in many activities, Bob finds a way. Bob has had personal contact with figures ranging from NIH Director Collins to Vice President Biden. This time it was his wife Courtney’s turn.

At a Reno Town Hall Meeting Courtney, asked President Obama, on camera, why the federal government is essentially ignoring her husband and a million other Americans with Chronic Fatigue Syndrome and asked for his support.… Read More

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Help win WPI and/or the CAA $525.000 by voting through Facebook:

Simple steps
1. Login to your Facebook account. (Facebook acount is required)

2. From your Facebook page, go to Chase Giving Community page by clicking on the link shown here:
http://www.facebook.com/ChaseCommunityGiving

3. “Like” the Chase Giving Community by clicking on the “Like” button. If you don’t already “Like” it.

4. Now go to the Chase community giving app by clicking on the link shown here http://apps.facebook.com/chasecommunitygiving/

5. Now search for “Whittemore Peterson Institute”

6. Cast your vote by clicking the “Vote Now!” button.… Read More

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For a fuller picture of Gordon Broderick and the work he’s doing check out this 2009 Pandora Interview. He explains how he was introduced to the field by Dr. Vernon, his dismay at the level of disability found in ME/CFS and his current work. Intriguingly he’s talking about the work, 2 years ago, that showed up at the SOK Workshop. A mathematician and engineer who returned to the medical field to study leukemia, his group has been developing developing supercomputing algorithms
and applying the mathematics of telecommunication networks to study interactions between the bodies systems.… Read More

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5357-Broderick.jpgStating that there’s been a ‘major revolution in science… brought about by technological advances that have allowed us to look at data generated in the lab in a different way” Dr. Basil Aldadah kicked off the Systems Biology session. These studies tend to use sophisticated analytical techniques to look at very large amounts of data. They are expensive, resource intensive studies that some people think provide the best opportunity to understand complex disorders like chronic fatigue syndrome. Others wonder, ultimately, how accurate they are.

Gordon Broderick (Minute 204)Regulatory Imbalance in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Network Approach There are ups and downs in every conference and Broderick’s presentation, which generated quite a bit of discussion throughout the conference, was definitely one of the ‘ups’.… Read More

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Posted by Cort Johnson

Stating that there’s been a ‘major revolution in science… brought about by technological advances that have allowed us to look at data generated in the lab in a different way” Dr. Basil Aldadah kicked off the Systems Biology session. These studies tend to use sophisticated analytical techniques to look at very large amounts of data. They are expensive, resource intensive studies that some people think provide the best opportunity to understand complex disorders like chronic fatigue syndrome. Others wonder, ultimately, how accurate they are.

Gordon Broderick (Minute 204)Regulatory Imbalance in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Network Approach

There are ups and downs in every conference and Broderick’s presentation, which generated quite a bit of discussion throughout the conference, was definitely one of the ‘ups’.Read More

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ME/CFS non-profits in the Chase Community Giving contestChase Community Giving is at it again. This time they have expanded their month long Facebook contest to include a round of larger non-profits with have annual operating expenses from 1-5 million dollars. That would includes two ME/CFS organizations in the US; the Whittemore Peterson Institute and the CFIDS Association of America.

The WPI, of course, uncovered XMRV, which has brought much needed exposures to ME/CFS and could be the breakthrough we’ve a;; be waiting for plus they have a dynamic clinic opening up shortly. The CAA demonstrated their effectiveness in supporting high quality research when many of the presenters at the State of the Knowledge conference thanked them for their support.… Read More

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5353-Go.jpgChase Community Giving is at it again. This time they have expanded their Facebook contest to include a round of larger non-profits with have annual operating expenses from 1-5 million dollars. That would includes two ME/CFS organizations in the US; the Whittemore Peterson Institute and the CFIDS Association of America.

The WPI, of course, uncovered XMRV, which has brought much needed exposures to ME/CFS and could be the breakthrough we’ve a;; be waiting for plus they have a dynamic clinic opening up shortly. The CAA demonstrated their effectiveness in supporting high quality research when many of the presenters at the State of the Knowledge conference thanked them for their support.… Read More

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Posted by Cort Johnson

Chronic Fatigue Syndrome and the Pathophysiology of EBV Infection – Dr. Glaser

Dr. Glaser started off by noting that studies have found a strong association between HHV6, EBV and chronic fatigue syndrome (ME/CFS) and then, perhaps in reference to all the attention given to XMRV over the past year and a half, stated that any other viral discoveries (guess who?) must account for the fact that these viruses have been shown to be present in ME/CFS.

Dr. Mikovits, of course, has repeatedly referred  to pathogenic ‘co-factors’, e.g., viruses like EBV and HHV6 that complete the picture of an immune-depleting retrovirus that, in an HIV-like fashion, allows other pathogens to proliferate.Read More

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Posted by Cort Johnson

Dr. Deckoff Jones Opens Family Survey – Large scale surveys of illness in CFS families , for some reason, have not been done and yet they could open up a wealth of information about what ME/CFS is by showing what susceptibilities exist in the families.  We did a poll on Phoenix Rising and was surprised by how prevalent ME/CFS and other mysterious fatiguing illnesses were in families…

Now Dr. Deckoff Jones, in collaboration with another doctor, is doing a more comprehensive survey…. Check it out here – and participate.

The Singh Study is done and is presumably being submitted to Journals.Dr.… Read More

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XMRV NIH SOK Coffin and Mikovits

(There were some formatting and grammatical errors in the first post; this is a revised submission – my apologies)

It wasn’t surprising at all to see things get heated with Dr. Coffin and Dr. Mikovits both up at bat at the State of Knowledge Workshop.

The moderator, Dr. Alter, handled his job with humor and flair. Stating that he was no King Solomon and was certainly unable to determine who’s ‘baby’ XMRV is at this point; Dr. Coffin’s or Dr. Mikovits – Dr. Alter gave at times a wry and clear-headed assessment of where the Workshop was after the Mikovits and Coffin’s presentation…

Each side had their points.… Read More

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5305-xmrv_retrovirus.jpgIt wasn’t surprising at all to see things get heated with Dr. Coffin and Dr. Mikovits both up at bat at the State of Knowledge Workshop.

The moderator, Dr. Alter, handled his job with humor and flair. Stating that he was no King Solomon and was certainly unable to determine who’s ‘baby’ XMRV is at this point; Dr. Coffin’s or Dr. Mikovits – Dr. Alter gave at times a wry and clear-headed assessment of where the Workshop was after the Mikovits and Coffin’s presentation…

Each side had their points. Dr. Mikovits can point to no evidence from contamination after extensive testing of samples and reagents, loads of blinded controls that have tested negative for XMRV (or contamination), antibody, protein, PCR and culture findings, and the fact that they’ve never used the 22Rv1 cell lines or any of the other materials that been found to be contaminated……

Dr.… Read More

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Posted by Cort Johnson

We’re going to try something new, live coverage of the workshop. Since this is last minute, we need volunteers to help cover the event. Let us know if you’d like to help with a comment here or via reply in the forum article that I’m posting. You can watch the event here or in the forums.

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We’re going to try something new, live coverage of the workshop via our community. Since this is last minute, we need volunteers to help cover the event. Let us know if you’d like to help (or think that this is a good idea) with a reply.

You can watch the Phoenix Rising community coverage and analysis here or on the front page of phoenixrising.me

Click Here to Watch in a New WindowRead More

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Posted by Cort Johnson

Here’s a slightly ‘kludged’ transcript of Day one of the NIH ME/CFS State of Knowledge Workshop. Some off-topic chat posts have been removed for clarity, but no remaining lines of the transcript have been altered.

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The CAA released the first funding opportunity for ME/CFS researchers in three years; $600,000 in grant money to go to approximately six pilot studies to explore the physiological basis of ME/CFS. The CFIDS Association has had some success in turning it pilot studies into major NIH grants with three of its researchers (Dr. Shungu, Dr. Huber and Dr. Glazer) getting NIH grants.

The CAA also supported the Pacific Fatigue Lab exercise research and Lighet that has h… Read More

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Putting the Puzzle TogetherThe State of the Knowledge Workshop is here and it’s a good one. A hearty congratulations to Pat Fero, Mary Schweitzer, Ken Friedman, Dr. Jason, Dr. Klimas, Dr. Vernon and Dennis Mangan for what they’ve produced.  The last NIH Workshop/Conference of this sort was the Neuroimmune Conference of eight years ago and was filled with NIH researchers who had little or no experience with CFS. This conference on the other hand is packed with ME/CFS researchers.

After overviews by Dr. Komaroff (who else?) and Dr. Jason (who else?) on characterizing and defining ME/CFS the Workshop jumps into four 20 minute presentations on EBV (Glaser), enteroviruses (Chia) and XMRV (Mikovits/Coffin).  … Read More

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Spinal Fluid Study Negative for XMRV and other Pathogens – A couple of weeks ago a Schutzer study found abnormal levels of proteins in the spinal fluid of people with ME/CFS but this NIH funded study found no evidence of either XMRV or common pathogens in the spinal fluid of people with ME/CFS. Dr. Schutzer stated ““This latest study was not designed to address the ongoing controversy over possible XMRV in the blood,” said Schutzer. “It was specifically designed to survey the central nervous system for XMRV and, if found, other viruses.”

Dr. Schutzer is known for his cutting edge spinal fluid techniques and his work on  Lyme disease.… Read More

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