March 2011

Posted by Cort Johnson

Prostate Study Negative - The latest XMRV prostate cancer study by a two groups of Japanese and UK researchers (Hue, Towers) failed to find XMRV – which might not be news except that this study used the same immunohistochemistry (IHC) analysis that Dr. Singh used to find XMRV.

These researchers used Dr. Singh’s IHC test and one of their own. Comparing the two found that the two tests to be equivalent but the Singh test was positive in samples which were negative by PCR or other antibody tests. (All tests were equally proficient in picking artificially spiked samples) That was enough for them to conclude that the MLV’s they found were due to contamination.… Read More

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Posted by Cort Johnson

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5268-Food-Allergies.jpgIn “On Hope and Healing” a book devoted to disorders such as ME/CFS and FM, Dr. Nathan states “Of all the ideas presented in this book, food allergy is one of the commonest and often ‘easiest’ to address. It is truly a shame that its importance is not universally recognized.”

In an Interview with Phoenix Rising Dr. Dantini stated that he thought food allergies were behind 20-30% of most FM and ME/CFS patients symptoms.

Eliminating Allergens – Cutting out the Biggies - The major hidden food allergens include wheat, corn, dairy, soy, peanut, baker’s/brewer’s yeast, sugar).… Read More

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XMRV has taken some hits lately but there have been some hopeful hints as well and Riley on the PR Forums put a list of them together. He said “they say that the darkest hour is before the dawn, and I believe we are in that darkest hour” and here is why he believes XMRV will work out.

1. Dr Mikovits’ comments at Santa Rosa that she believes “the politics will go away shortly.”

2. Another person on the forum reported a few weeks ago that Dr. Demerleir told him that there is something coming out in a couple of months that will end the contamination debate, but that he could not provide details because of a non disclosure agreement.… Read More

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Big Changes at WPI - Dr. Lombard is taking over Dr. Mikovits position as Research Director and Dr. Mikovits is taking a new position as “Director of Translational Resources”

Dr. Mikovits – The WPI’s brief announcement stated Dr Mikovits will now be focused on treatment rather than research; her new duties are to engage “in activities which support and promote the development of more effective treatments for all patients with neuro‐immune diseases”

Dr. Mikovits has a long history in treatment research. She directed the Lab of Antiviral Drug Mechanisms (LADM) at the NCI which developed creens for treatments for AIDS and AIDS-associated malignancies (Kaposi’s sarcoma) and served as Chief Scientific Officer and VP of Drug Discovery at Epigenx Biosciences, where she developed cell and array-based methylation assays for drug discovery and diagnostic development.… Read More

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Posted by Cort Johnson

New Technology finds XMRV –  Dr. Lapp sounds quite excited in his recent newsletter. Its not often you read Dr. Lapp reporting “that (the) information relayed this past week to us will change the field of medicine forever”..You don’t hear that very often! 

He reported that Dr. Urnovitz of Chronix Biomedical Labs. Chronix has developed an incredibly quick and inexpensive way of mapping the entire genome which he reported will be available soon. When cells die they spill their guts into the bloodstream…its these sequences that Dr. Urnovits technology is looking for. When they looked in the blood of some CFS patients they were able to pick out ‘chimeras’ made up of XMRV genes (but oddly missing their LTR regions).… Read More

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5247-PastFuture.jpgWe are in the process of making major changes to Phoenix Rising. As part of that we are going to move the Forums to a new host and new URL on Thursday. They will be down starting 11AM PST/2PM EST/1900 UK Time and should be down at the most for about 6 hours. Sorry about the inconvenience.

When they come up they will be up at our new (and I must say, much better) address
http://phoenixrising.me/forums/content.php.

Please update your bookmarks with this address (and wish us luck! :) )
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5245-WSJ.jpgThis is a great sign from Amy Dockser Marcus that for her ME/CFS is bigger than XMRV – that she’s interested in the disease itself.

We don’t know how XMRV is going to turn out but we do know that, whatever happens with XMRV, we want Amy and others to remain interested in ME/CFS – and we have to help her with that. This article has alot of great stuff in it – it’s the kind of article we really want to promote – thus far, however, it has not attracted many comments.… Read More

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Posted by Cort Johnson

PCR for XMRV and CFSThis  long interview may be difficult for some. In it Dr. Satterfield presents evidence which he believes suggests that XMRV will probably not work out. We’ve had this interview sitting in our laps for about 2 1/12 weeks during which we tried to get a response from the WPI . They, however, are too busy and when their Public Relations office was unable to give us a timeline for a response, we decided to publish it.

This interview does not support a finding we would all love to have work out but Phoenix Rising is committed to as complete a view of CFS research as we can muster.Read More
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Posted by Cort Johnson

MEDIA WEEK- this has been Media Week for XMRV as large stories have shown up in Nature Magazine, Wall Street Journal and Chicago Tribune or the past 10 days or so.

Trine and the Trib on XMRV - Trine Tsouderous has carved out a place as a fierce skeptic of XMRV and the WPI over the past year and her latest article is, if anything, fiercer than ever. The big news in the article was the statement from the co-discoverer of XMRV, Dr. Silverman, that of his concern about contamination in his lab and his report that the lab had previously stored the 22RV1 cell line in it.… Read More

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Website Down (Again…sigh) – The website has been down for at least a week but hopefully we’re back up for good and in a new format. The website will changing quite a bit over time as we slowly create a new version of Phoenix Rising.

Fighting for A Cause

Dr. Mikovits and the search for XMRV was featured in a long article in Nature magazine “Fighting for A Cause”. As the article works through the now rather complex history of XMRV it notes the fervent enthusiasm XMRV has evoked in the CFS community and Dr. Mikovits sincere commitment to them.… Read More

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Posted by Cort Johnson

Phoenix Rising is proud to join the Coalition 4 ME/CFS. Every member of the Phoenix Rising Board of Directors has had ME/CFS for over ten years and we are all personally aware of its costs.

A recent letter one of our Board Members, Pat Sonnett, wrote to Amy Dockser Marcus of the Wall Street Journal, summed up the feelings for all of us.

Coalition 4 ME/CFS“Amy, thanks once again for covering the story of ME/CFS. I firmly believe that much of the patient anger and frustration we’re witnessing now is justified and is a direct result of decades of denial, ridicule, neglect and malfeasance on the part of our government health agencies whose responsibility has been to investigate this illness properly.

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Dr. Montoya at Stanford Hospital on CFS March, 2011This definitely wasn’t an ‘get acquainted with CFS’ talk. There was no boring scholarly introduction to CFS (“Chronic fatigue syndrome effects blah, blah, blah….has x number of symptoms….blah, blah…..)…Dr. Montoya was clearly trying to wake people up.

Calling ME/CFS one of the most ‘mis-perceived’ illnesses in medicine, Montoya quickly got to the heart of the matter calling chronic fatigue syndrome ‘an extreme event’ in the medical community and castigated them (gently) a bit for mostly ignoring a disease which ‘significantly compromised the health’ of millions of people.

He had hardly started his talk when he said “If there’s one thing I would like this audience to take home … do not kid yourself – this is a real disease”.… Read More

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Posted by Cort Johnson

Nature, (the second most read Science Journal in the world, published a long article on the search for XMRV. I think it’s pretty even handed. The article clearly outlines Dr. Mikovits commitment to the patients (and their commitment to her), gives us some idea why Dr. Peterson left, reviews the contamination issues, tells us that a true replication study by Dr. Levy is in the works, reports that a ‘next-generation DNA technique’ found XMRV and even mentions Phoenix Rising :)

Quote:

Virology: Fighting for a cause

When Judy Mikovits found links between chronic fatigue syndrome and a virus, the world took notice.

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Welcome to the first Phoenix Rising newsletter with our new newsletter  using the new Amazon ‘Simple’ Mail Service!

CROI! — XMRV showed up in spades in the first major Retrovirology conference of the year, CROI (Conference on Retroviruses and Opportunistic Infections), occurring in Boston. The big news came from a study which suggested XMRV may have been inadvertently created in a Cleveland, Ohio lab between 1993 and 1996. That was a blow but the theory rests on a couple of studies that have not been replicated and none of the researchers who’ve found XMRV (including Dr. Mikovits, Dr.… Read More

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5211-WSJ.jpgI was sitting in Starbucks browsing the front page of the Wall Street Journal – and saw something about “War on Mystery Disease”….and there’s no way…… and then gulped. Yes, chronic fatigue syndrome was the Front Page of the most popular and influential newspaper in the United States. That’s right more people read the Wall Street Journal than any other newspaper…by far.

The closest competitor to the WSJ is USA Today which is hardly known for it’s investigative articles. The New York Times with 2 1/2 times less circulation isn’t even close.… Read More

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Posted by Cort Johnson

A New Center - Much research and discussion now is not centered around XMRV but around a prostate cancer cell line called 22RV1. More than anything else this cell line that is what is causing problems for XMRV.

The 22RV1 cell line was created in 1999 in response to a need to study prostate cancer – a major cause of male mortality. Creating the cell line involved ‘passaging’ prostate cancer cells through nude mice tissues. At some point researchers were able to create a ‘cell-line’, a group of cells they could use to reliably grow prostate cancer cells and study them.… Read More

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Posted by Cort Johnson

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