As the Whittemore-Peterson-Institute opens its door on what may be a new era of understanding and treating ME/CFS, it’s good to look at the circumstances that spawned the Institute. It was borne out of hope and possibility, for sure, both of which it has vastly exceeded but it was also borne out of trial.
The new century started off poorly for people with ME/CFS. First the federal CFS research centers closed and then both the NIH and CDC CFS budgets began to crumble. Eventually the CDC’s research program devolved into theories of sexual abuse, allostatic stress and metabolic syndrome while the NIH program, stuck in a little Office with no money and nothing but scores of broken promises, simply stagnated.
With wars and recessions draining budgets the big federal funders turned their backs on a disorder they never embraced anyway. With the federal research effort mired in inaction the biggest patient organization, the CAA threw most of its resources into research. It was a time that compelled small players to try to step onto the big research stage.
(With so much happening and so much at stake, Rivka reminds us that now is the time to act)
Dear Everyone Who Cares About People With ME/CFS,
I just held my one-woman demonstration at the Red Cross national headquarters in Washington DC (Red Cross collects 45% of all blood donations in this country) and at the national headquarters of the U.S. Department of Health and Human Services, and it was a success. (see her video below) On the first day of our protests, August 13, 2010, our first stop was the Red Cross headquarters. Lots of security showed up within minutes of me being there, but I simply educated them about XMRV.
This is how it went: My mom and sister (respectively the videographer and designated driver) started videotaping me standing in front of the front door while people were walking in and out of the building. A security guard walked up to me within two minutes and said I could not videotape and hold my signs there. I said “What about over there?” pointing to the sidewalk, not five feet away, but still in front of the door. She said she could not stop me from doing that. So I stepped five feet forward and proceeded with my sign holding and talking into the video camera.
Several weeks prior to publication Dr. Mikovits spilled the beans on the XMRV FDA study stating in an interview with RGJ.Com, what has seemed to be more and more obvious – that the FDA paper in press is going to confirm the WPI’s findings when it is released. While no one yet had directly said so, the news seemed to be in the air. On the CAA’s Blood Safety webinar, Dr. Alter’s colleague, Dr. Katz said he ‘believed’ the paper would be positive. In an interview in Nevada Newsmaker Annette Whittemore very confidently said that soon several new replication studies will confirm the WPI’s findings; overall the mood seemed very good. Now we know for sure.
(Megan on the Forums has noted that PNAS has a very liberal ‘prepublication’ policy that allows the authors of the paper to freely provide summaries of their findings to journals, etc. prior to publication. Different journals clearly take very different stances on this issue. You can check out their policies here )
The New York Times lead article today “Sharing of Data Leads to Progress on Alzheimer’s”. described how a bold new type of research effort paid off big time in Alzheimer’s. All it took to succeed was for researchers to make a commitment to work together, share and collaborate…. nothing much really – just a commitment to engage in a results oriented (rather than a career oriented) process that required they toss aside the rules they usually operate under.
In an effort the New York Times called without ‘precedent’ and Dr. Trojanowski, a Univ. of Penn. Alzheimers researcher called ‘unbelievable’, the NIH, FDA, Pharmaceutical, University and non-profit groups worked together to find a biomarker for Alzheimer’s. They did it by sharing every bit of data they had…there would be no big patent payoffs here, no hiding data while one scrabbled after a Nobel or Lasker, no attempt to rack up publications …just a community wide effort to figure out what the heck is going on Alzheimer’s.
A Little History- Dr. Singh has quite a history. She’s been at Stanford and Yale and Columbia (where she was Dr. Racaniello’s colleague) and is now a clinical pathologist at the University of Utah. She spends 80% of her time in her research lab searching for pathogens and also directs an HIV team.
Her interest in XMRV-like viruses began with her work in murine leukemia viruses in Columbia and she’s been a key figure in the search to determine whether XMRV plays a role in prostate cancer. Too busy for something extra? Not at all – she’s now focused heavily on XMRV’s role in chronic fatigue syndrome.
The Problem!- Her biggest problem with XMRV is that the virus is found in such small amounts, making it very hard to detect. (Of course her concerns echo what the WPI has been saying for months now.) The problems detecting XMRV now, she believes, are simply giving us a glimpse of how future viruses fare; the easy viruses to find – the ones present in abundant amounts in the blood have already been found. The tests that find the next round of viruses will need to be very sensitive and very specific; it almost sounds like they are pressing the limits of their technology.
‘Where’s the Beef’ became a key catch phrase of the 1984 Presidential campaign but one wonders if the WPI is asking themselves the same thing today. They produced a major finding that got the feds to throw a substantial amount of money at XMRV none of which, thus far, has made to the WPI. The WPI might have expected to share in the resources being doled out to XMRV but they haven’t. They may very well be asking “Where’s the friggin’ beef?”
There is a view that the WPI is out of the mainstream…and indeed it would be hard for a brand-new Research Institute focused on a controversial disease to fit into the mainstream of the research community. With the help of two decidedly mainstream groups, the National Cancer Institute and the Cleveland Clinic, however, the WPI, made one of the hottest medical research discoveries of the year. It’s XMRV paper appeared in the pages of a prestigious journal – Science – which is devoted to publishing paradigm shaking studies. Indeed the XMRV finding unleashed a storm of interest in the research community and singlehandedly pushed what was a little studied virus into the mainstream. There’s little evidence, though, that that discovery did the same thing for the WPI.
Dr. Racaniello and Dr. Bateman talked XMRV (mostly) at the CFID’S Association Webinar on Wednesday.
DR. RACANIELLO gave us a bird’s eye of retroviruses. Right now there are two models for human infectious retroviruses; HIV, which replicates madly in immune cells and sends millions of virions into the blood to infect more cells and HTLV-1, which does not replicate much and does it’s damage by turning on bad genes in the cells it is found in (sometimes turning them cancerous).
He noted that XMRV, at this point, seems more HTLV-like – it’s present in small numbers in the blood and doesn’t appear to be replicating much.
(This could be misleading, however. XMRV could be replicating madly in some other part of the body. We know that the immune cells contain APOBEC3 enzymes that ‘edit’ XMRV sequences – thus largely shutting it’s replication down but that prostate cells do not contain this enzyme allowing XMRV to replicate in them. Primate studies of XMRV indicate that XMRV infects many cells – it uses a receptor commmonly found on cells to enter them – and that, upon infection it spreads rapidly throughout the body. It could be flourishing in areas of the body that have not been studied yet).
The Central Issue Remains the Same – How to Find XMRV? – I asked Dr. Mikovits and Dr. Racaniello about XMRV and both were good enough to give their viewpoints on where we stand now. This is a long article; in it they talk about
* how to test for XMRV
* whether a different type of XMRV is present in CFS patients and how it got there
* the importance of subsets
* the history between the CDC and the WPI
* how the CDC study may have gone wrong.
PANDORA has been engaged in a month long contest on Facebook by Chase Community Giving. The top 200 charities will win $20,000 – an enormous amount of money for a CFS non-profit. As of 3 days ago PANDORA was at a solid 104th place. Now, with 21 hours to go, because of a last minute rush by other groups, PANDORA has sunk to 165th place. At this rate they will lose the contest on the last day and no CFS groups will take share in the winnings.
PANDORA has big plans – including a Neuroendocrineimmune Treatment Center – that can benefit us all. They are a strong force for change in the ME/CFS Community. Let’s show that we as a Community can make this happen – that we can band together and support them and us and bring this home for one of the hardest working ME/CFS groups in the county. All it takes is voting on Facebook.
You can find instructions how to do this here: http://www.forums.aboutmecfs.org/content.php?184-For-Non-Facebook-Users-Vote-for-PANDORA&nocache=1
Check out Marly’s latest blog on PANDORA and the contest.
