Sunday, January 30, 2011

Where's The Money? Well... where's the Action?

EDIT: WPI and by extension its activism wing ANIDA have been discredited recently. I do not advise donations or membership in these organisations unless they successfully restore a badly damaged reputation. 26 Feb 2012

The announcement that the WPI clinic, planned to open in May, must charge patients directly for services, and can not bill insurance, was no surprise to many but was certainly a disappointment to some.

I had hoped that the WPI's affiliation with a state university might give it easy access to Medicaid and Medicare billing, as some other clinics on the same campus are able to bill those insurers. Of course as Dr. Jamie so well explained the situation, the treatment anticipated at WPI is not the sort that any insurance, least of all those for the poor and disabled, might cover.

I have been sad to see one or two comments in some places accusing WPI of being out to make a buck, but it's hard to believe anyone could fail to understand that the research needs to be supported somehow. However, in the face of grants not being granted, patient contributions and patient fees can't be the only sources.

I have not complained but have asked, and upon getting answers I have commented and blogged, encouraging people to support and contribute to WPI and to do all they can to promote widespread understanding and concern.

We need a broader base than just patients and our immediate advocates, to support research and the creation of more clinics and more access as soon as possible. The sad truth is that while people wait for treatment, and wait, and wait, some die and more become ill. We are so close now. Effective treatments have been found and need only be clinically tested and approved. Sounds close but could be years.

We need to use our outside voices to get some action from the people, to multiply the voices demanding action from governments as well as to increase individual contributions and even to increase the likelihood that private foundations will make grants.

Private foundation grants as well as government grants are more likely to be forthcoming if the disease is given a higher and more credible profile than it has had in the past. There are private foundations which offer major support specifically for innovative treatment that can be replicated. Innovative treatment and a plan to help others replicate that in other clinics, is exactly what the WPI has planned. Exactly what the big money grants are always looking for. But those foundations like to have popular causes in their profiles of grants. ME/cfs needs to be made a more popular cause.

How to make the cause popular? How to get anyone to listen and care? Again, patients---exhausted and in pain---are not to be looked to, to do all the work. Patients have been begging for attention for decades. How to mobilize more healthy people? That's the question.

Friday, January 28, 2011

Were you cool in the late 80s, or only wish you had been?

EDIT: Much has changed since I wrote this post.

WPI has been discredited recently. I do not advise donations or membership in these organisations unless they successfully restore a badly damaged reputation.

Dr. Deckoff-Jones continues to write an excellent blog worth following. It has moved to

My collaborator and I had to abandon the "Sock It to ME" project due to illness.

Fellow neuro-immune disease sufferers, please don't give up hope and action, even if we have to scale both back to more reasonable levels. x

26 Feb 2012

Dr. Jamie Deckoff-Jones, Director of Clinical Services for the Whittemore Peterson Institute, started her job with the unpleasant task of notifying patients via her blog  that the clinic to open in May at WPI will not be able to accept any insurance, including Medicaid and Medicare.

It's time, and way past time, for healthy folks to join with patients to act up.

One anonymous person commented on Dr. Deckoff-Jones' blog post,  "The idea that ME is being approched by nickle and dimeing poverty stricken sick patients is immmoral and criminal." Even that commentor understood that the WPI is doing all it can, but their frustration is justified: the burden of funding research can't lie with the patients.

Many patients with neuroimmune disease are completely disabled by the illnesses. Some can draw on savings or liquidate assets or get help from family or friends, some have exhausted all resources through years and even decades of illness. Many are unable to pay for medical care out of pocket.

Patients everywhere have been watching and waiting for word of the opening of the WPI clinic. The financial decisions the WPI is forced to make, leave many who had hopes of getting decent care at last out in the cold.

I'm confident that Dr. Deckoff-Jones and the WPI will do all they can to extend care to those of us who can't pay or can't travel, or both. I know we won't ALWAYS be on the outside looking in, but meanwhile sick single moms with sick kids living on disability, and those in even worse circumstances, must wait.

When I read the news I posted the Facebook status: "Health is for the Wealthy." Through no fault of the WPI, because of the flaws of the system and the lack of outcry among the general public, we rot.

But patients with life-threatening neuro-immune disease associated with a retrovirus and requiring expensive and, at first, experimental care, don't always have to rot forever. Remember those red AIDS ribbons and the motto, Silence = Death? Don't you wish you had been on the front line? Well, now is your time. 

The WPI is doing what it can to advance research and provide patient care but it needs government grants and private contributions. To get those, we need the kind of public outcry ACT UP made back in those cool 1980s.

There are several excellent ME/cfs patient organizations, but one in particular is devoted specifically to making our voices heard. In December, the ME/cfs Worldwide Patient Alliance took out a half-page ad in the Washington Post that has prompted a swell of media coverage.

With plans to publicize the next big biological finding and put out a public service announcement, and further follow-up to the Washington Post ad via radio and print interviews, MCWPA is doing a great job of getting the word out. So one way to be cool is to support their work.

Of course direct support of WPI, as well as P.A.N.D.O.R.A. and other patient organizations is needed.

Then there's the stuff we make up on our own and do by our little selves, like Sock It To ME/CFS which a friend and I launched last ME Awareness Day, 12 May 2010. The socks are slowly but surely arriving and we're hoping they'll march at meetings of the World Health Organization, National Institutes of Health and more, but the effort could die without some help from people who aren't as sick as we are. 

You can make up your own stuff and get it out there. Maybe you blog, maybe you create videos and post them on youtube, maybe you'll stand on a street corner with a sign. Write your representatives. Make some phone calls. Educate yourself and others. Please do something.

Whatever you do, you'll be able to say you did something: you were cool in 2011. And it could help get research done and clinics funded so people like me and my kids can get well. We'd like that. That would be very, very cool.

Friday, January 21, 2011

The XMRV Hunt and Me

26 Feb 2012 Edit: Much has changed since I wrote this article. The WPI is discredited, though XMRV or similar retroviruses are still under investigation. Biomedical research on ME and other neuro-immune diseases is still urgently needed, but I do not advise donating to WPI unless they are able to repair their reputation. And now, the post as originally written...

Recently I got the results from my XMRV serology test: no evidence of antibodies. This does not mean I'm XMRV-negative: it just means that antibodies to the hard-to-find retrovirus did not show up in that particular sample of my blood. It may be that my immune system was so down, it wasn't producing the antibodies just then in sufficient quantities to be detected.

When I first got the results, I felt deflated. My hope had been for a positive test, since that would give me some understanding of the cause, and perhaps even guidance towards possible treatment, of a disease I've now had for nearly four years.  But when I talked to other patients about it, they pointed out that this is only a setback and not a dead end.

They pointed out that some patients have encouraged the antibodies to show up by taking a short course of something (hormones for example) that would encourage the retrovirus' activity, briefly. Yes, patients are that desperate for an answer, risking a period of more severe illness to insure test accuracy. XMRV is good at hiding, and the trick is to lure it out.

They pointed out too that often it's the sickest patients who turn up this "no evidence" result in serology. It seems a harsh irony that the same thing that makes me spend many days bedridden and most days housebound, also makes me get this test result that, at first glance, looked like a dead end. I could be chock-full of gleeful little retroviral cells, proliferating cheerfully while I sustain damage to my central and peripheral nervous systems, cardiac and other functions. And here am I, so unable to produce antibodies to fight them, their presence doesn't even show up in serology.

Or maybe what I've got is really something else: heavy metals contamination, Lyme Disease or a rare leukemia. Of course any of those could be present alongside XMRV. It would be good to know. My new GP and I are getting what tests we can, for other possible pathogens. Some have been tested and re-tested for, while there are others that my previous doctors didn't hit.

Meanwhile, my XMRV options now: get retested in six months with the same serology test, opt for the more expensive virus culture test, or, being broke, try again to get included in clinical studies. I was actually told by a leading researcher that my two children and I were definitely on the list to be included in studies at the WPI, the research institute where XMRV was first found in ME patients. So exciting! But alas, that was two years ago. Since then, with the denial of six applications for public grants, the shortness of research funds has slowed progress at WPI, so we continue to wait to be included.

My personal hunt searches my own blood and that of my kids, for the pathogen that makes us so ill for so long. The greater hunt is worldwide, for research funding, and the truly great hunt is where those funds will be put to use: To explain the pathogenesis of XMRV in ME/cfs,  Fibromyalgia, Cancers and more. To identify antiretrovirals and other medicines most effective in controlling the retrovirus. To get those medicines approved for use in the patient population. To bring effective treatment to 17 million people and make it less likely that even more will become ill.

You can help in the hunt, and thereby help me, my kids, and the rest of the 17-million sufferers worldwide, by supporting the WPI ...

You can help by contacting the congress if you're a US resident or contacting whatever elected officials you can wherever you are---Ask them to support XMRV research ...

You can also help by blogging. Whatever the usual topic of your blog, please consider devoting one post to this cause, helping spread solid information.

Thank you.

This post is part of XMRV Bloggerama: a day's effort to get the truth out in bulk. Details are available here, with a template for those who find it hard to blog at all, and lots of links you can include in your post.

Finally, here are links to the science on XMRV.

WPI press release, Oct 2009

Lombardi et al, Oct 2009, Science Magazine

Lo et al, Proceedings of the National Academy of Sciences, August 2010

Commentary on Lo et al, PNAS, August 2010

FAQ on XMRV testing from VIP Dx lab