May 2011

Posted by Cort Johnson

New Article

http://www.sciencemag.org/content/early/2011/05/31/science.1208542.full.pdf

In the Expression of Concern chief editor of the Science Journal stated that two new articles appearing in their journal ‘strongly support the growing view that the association between XMRV and CFS……likely reflects the contamination and research reagents with the virus”

One of the papers will provide evidence suggesting that XMRV is derived from the 22RVI cell-line. The second paper which involved Dr. Jay Levy….and Konstance Knox - who has authored several papers on pathogens in CFS.… Read More

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Posted by Cort Johnson

Science asks WPI for retraction of XMRV CFS paperOne of the most stunning things about the Lombardi et. al XMRV paper on CFS was where it ended up – in Science – the most influential science journal in the world. The fact that the paper landed in such a prestigious journal seemed by itself to confer ‘rightness’; that even though it was a first paper, and even we were reminded repeatedly that it was a first paper, it hardly seemed possible back then that it could not be right. 

Now what Science given Science taketh away – or at least try to taketh away. Amy Dockser Marcus of the Wall Street Journal today reported that the editors of Science magazine have asked the authors of the Lombardi to voluntarily retract the paper.

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5812-Dollar_symbol.jpgThe Vivint Facebook Contest gives us another opportunity to win our research starved field some money. Vivint is spreading $1,250,000 around US and Canadian non-profits this summer. The WPI entered the contest late but has a great chance of winning a substantial amount of money.

Key Facts

  • Facebook contest
  • Two Rounds
  • Five Regions in the US and Canada

Winning Round I simply gets the org into Round II (no money is won yet). The top 20 vote-getters from each region in Round I go onto Round II where they compete for $1,250,000.… Read More

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5723-11029pot_of_gold.jpgThe Chase Community Giving Contest is almost like a pot that never stops giving. Round II of the Chase Contest is over but believe it or not there is still one opportunity left and still plenty of money left in Chase’s pot.

Chase is now looking for a worthy cause which did not win $100,000 or more by popular vote which it will give up to $200,000 (plus another 300k all charities in round two are eligible for) and we can help them decide which one it it is by sending them a letter.… Read More

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5703-SanFranciscoProtestMay_11.jpgRivka has helped to organize protests in Atlanta and Washington DC and now here she and others did so in San Francisco. This protest in front of a DHHS building triggered an article in the San Francisco Chronicle titled ‘Chronic fatigue patients protest lack of funding’ .

Dr. Montoya was featured prominently in it and called it ‘the Disease of the 21st century that we need to crack”

Please go to the article and do two things. Click on the Facebook link if you have a Facebook account and share it…and then register for the Chronicle and comment on it.… Read More

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In the year and a half since the WPI’s Science XMRV paper they have received no grants from the federal government to study XMRV, despite several attempts to procure funding.  A Gulf War news site (91Outcomes.com) reported back in March that the Congressionally Directed Medical Research Program (CDMRP) recommended funding 12 new studies, two of which were on XMRV and one of which (gasp) was produced by the Whittemore Peterson Institute.

The WPI study (Detection of XMRV in Gulf War Illness: Role in Pathogenesis or Biomarker?) will, if it is funded, look for XMRV in GW Illness and determine if it plays a role in that illness or is a biomarker.… Read More

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5700-WPIlogo.pngThis is the last day of the Chase contest and the WPI has slipped out of the top ten. Don’t give up hope! The swings in the last two days can be huge and a similar thing happened to PANDORA last year and in the last hours they rebounded.

The best way to get out a lot of votes is probably to do what Ann did

Quote:
I’ve had quite a lot of success with friends voting by sending them personal messages via FB. I wrote an update and why WPI is important to me with the voting details.

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Posted by Cort Johnson

Gulf War Illness (GWI) and chronic fatigue syndrome (ME/CFS) have both struggled for recognition. Recent findings implicating similar findings in both disorders suggest each disorder could soon be helping the other gain more recognition and study.

Throw in a recent rare advocacy win for ME/CFS supporting collaboration between the two fields and hope rises that not only will we be seeing more GWI/CFS studies in the future but that the two fields will piggyback off the other – helping each to gain momentum and acceptance.

Indeed, it looks like the first XMRV grant that the WPI gets from the federal government may very well be on none other than Gulf War Illness…

WPI Gets its Grant?Read More

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5690-Research1st-header5.jpgThe CFIDS Association of America has opened a new ME/CFS Research Information Center….whoops it’s actually still a “CFS” (c’mon you guys! :)) site called Research1st that will be a ‘one-stop shop’ for information on the latest research news. Let’s take a look at it.

Research Initiatives – The Current Research section has a “New Research Initiatives’ section – a easy way to track the who’s doing what where…such as the CAA’s $600,000 Request for Applications (RFA) in April.

The CAA’s RFA – PR did not cover the RFA and now is a good time.… Read More

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The Chase Community Giving Contest for CFS: WPI and CAA researchAnnette Whittemore, the Founder of the WPI, and the mother of a daughter of ME/CFS, appealed to all people with ME/CFS to vote for the CFIDS Association of America in the Chase Community Giving Contest and has requested that they also vote for two other organizations – and ask that they vote for us. This is an opportunity to propel all four organizations upwards. 

She said

As the competition moves along more charities are combining efforts. In the spirit of working together for patients, we’re asking for people to use any unused votes to help support the The CFIDS Association of America.

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5544-BreakingThrough.jpgThe regular season is over – it’s playoff time for the Chase Community Giving Contest for large non-profits…..time to win some BIG MONEY for CFS research.

This is a unique opportunity. Increasing govt funding for ME/CFS has been agonizingly difficult given the negative attitudes towards ME/CFS and it’s pretty darn clear, with the NIH suffering significant cuts this year, that funding is not going to increase significantly this year or the next. Given the smaller pot of funds available now, winning grants -always a difficult task for any CFS researcher – is going to be more difficult than ever.… Read More

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The Chase Community Giving Contest for CFS: WPI and CAA researchThe regular season is over – it’s playoff time for the Chase Community Giving Contest for large non-profits…..time to win some BIG MONEY for CFS research.This is a unique opportunity. Increasing govt funding for ME/CFS has been agonizingly difficult given the negative attitudes towards ME/CFS and it’s pretty darn clear, with the NIH suffering significant cuts this year, that funding is not going to increase significantly this year or the next. Given the smaller pot of funds available now, winning grants -always a difficult task for any CFS researcher – is going to be more difficult than ever.But Chase Community Giving (funded by JP Morgan Chase) has given CFS research a kind of life line; a chance to win some big money in a time of dearth and to put that money directly into the hands of excellent researchers.… Read More
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WPI Response to the Singh Study

The WPI’s first response to the negative XMRV CFS Singh paper didn’t take long to come out. (Apparently a longer response will appear in the Journal of Retrovirology).

Hiding in Plain Sight? WPI Refutes Contamination Theory – Claims Distinct XMRV is Present – For over a year the WPI has gone along with the conclusion that their published samples from ME/CFS patients were essentially identical to the prostate cancer samples. The Science paper stated that the ‘complete XMRV sequences are >99% identical…to those detected in prostate cancer.

Now the WPI may be stating that one of the CFS samples they deposited in GenBank is, in fact, distinct from the type of XMRV found in VP62 and the 22RV1 cell line.  … Read More

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ME/CFS Demo May 10, 2011 — Dept of Health and Human Services, Washington DC
Contact: Rivka (at) ThatTakesOvaries (dot) org

On May 10, 2011, 6 individuals with ME/CFS, each sick and disabled from 9 to 21 years, demonstrated in front of the U.S. Department of Health and Human Services (HHS), 200 Independence Ave, S.W., Capitol Hill, Washington D.C. They carried with them just one sign, a 25 foot banner that read:

“Obama, Sebelius, HHS: Shame on you for abandoning 1 million sick and disabled Americans with ME/CFS and XMRV (Chronic Fatigue Syndrome and a newly discovered retrovirus).Read More
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Posted by Cort Johnson

The Singh Study was a big and important and its not surprising that, even prior to the WPI’s official response – everyone on both sides of the aisle is talking about it.

Dr. Mikovits on the Singh Study – Science Mag reported that Dr. Mikovits was astounded that Dr. Singh was unable to find XMRV. Calling Dr. Singh’s group ‘good scientists’ she stated “I was astounded when I leaned that Ila [Singh] didn’t find it…These are good scientists.”

Despite the negative results Dr. Mikovits remained confident about the patients the WPI sent over to Dr. Singh to test

“These people are infected,” says Mikovits.Read More

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Support CFS research!Medical research is an extremely expensive pursuit – seemingly too expensive for a not very wealthy patient community to make a difference in…..or is it? We actually have abundant evidence that even small amounts of money, put into the right hands, can reap major dividends.

Working out of rented quarters, the WPI was able, working on a small research budget, to galvanize the research community with the XMRV findings. Gordon Broderick was able to turn a $5,000 grant from PANDORA into a $100,000 grant from the CFIDS Association into a multi-million dollar grant from the NIH. The CAA has been able to turn at least three small pilot studies (Broderick, Shungu, Huber) into major NIH grants and its small research project has supported many of the prominent ME/CFS researchers in the field.… Read More

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PANDORA'S LOBBY DAYFor years the CFIDS Association of America had annual Lobby Days where patient advocates met in DC to push for change on Capitol Hill. Citing costs they discontinued them a few years ago. Now PANDORA has picked up the mantle. 

As I fumbled my way to our meeting point at the Capitol a couple of years ago I was a bit leery about the effectiveness of Lobby Days. At one point. lost again, I asked someone for directions. Learning that he was (surprise!) a lobbyist I asked “so what about these ‘Lobby Days’? Do they really do any good?” He smiled and said that he used them frequently and they were a very effective advocacy tool.

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Dr. Singh, XMRV and ME/CFSDr. Singh’s study was one of the ‘biggies’ left. A murine retrovirologist at the University of Utah and the ARUP labs who had been studying (and finding) XMRV in prostate tissues, Dr. Singh started her CFS study about a year ago. Not only did it involve an expert in the field but Dr. Singh was working in tandem with one of our top ME/CFS physicians, Dr. Bateman and the Lights; it was an exciting study. 

The study was designed to account for many of the confounding factors such as patient characterization (CFS patients or not?), geographic locations (different variants of XMRV), clinical samples used (both healthy control and patient samples treated the same), blinding and other methods – which could have contributed to the negative results in other studies.

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Phoenix Rising, of course, is not the only group proposing special May Advocacy actions. Both the WPI (ANIDA) and RESCIND are engaging in May Actions.

ANIDA - The WPI is engaged in a Month of May Awareness Campaign in it’s beautiful ANIDA website and it’s Facebook page to build a network of advocates dedicated to finding a cure for neuro-immune disorders such as myalgic encephalomyelitis, chronic fatigue syndrome, fibromyalgia and Gulf War Syndrome. Donations support basic clinical research at the WPI and outreach and advocacy efforts.

Register to become an advocate here. Check out their Calendar of Events here and share your letters, photo’s and video using this email address info@ANIDA.co You can donate to the WPI here

Thus far ANIDA has suggested:

  • Monday – Write your congressman or congresswoman.
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5383-WPIlogo.pngPhoenix Rising, of course, is not the only group proposing special May Advocacy actions. Both the WPI (ANIDA) and RESCIND are engaging in May Actions.

ANIDA – The WPI is engaged in a Month of May Awareness Campaign in its beautiful website and Facebook page to build a network of advocates dedicated to finding a cure for neuro-immune disorders such as myalgic encephalomyelitis, chronic fatigue syndrome, fibromyalgia and Gulf War Syndrome. Donations support basic clinical research at the WPI and outreach and advocacy efforts.

Register to become an advocate here.… Read More

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