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.


  1. Thank you, Kassy, for the MCWPA endorsement, but you know, we can't do anything without more funds! Everyone wants some money to do what they do best; the WPI, MCWPA, Pandora, and all the great support groups left across the world, that need funds to continue. I hope everyone will try to divide up their discretionary funds (not you who live just on a wing and a prayer!), and allocate them to all those working to make ME/CFS visible and accountable by the governments of the world.

  2. Great post, Creek. I'm reposting it via facebook. One thing: AIDS awareness ribbons are red. Also, I've finally gotten my ME/CFS blog up, thanks to the motivating influence of XMRV Bloggerama Day. Please come visit me at

  3. Thanks Kathryn, and yes, when I say support I do mean $UPPORT!

    Thanks and good catch on the ribbons, Jocelyn. Bloggerama, yay!

  4. I've never been cool. I thought I'd missed my chance forever. Thanks to Kassy, I now realize there's still hope for coolness in my lifetime. I'll keep working on my project to educate and inform so that I can become part of turning this thing around. I want to be cool in 2011.

  5. Meg, you are way cool.

    And I don't want to just preach to the choir, here. Mother Theresa wasn't a leper but she helped lepers. As far as I know, Jerry Lewis didn't have muscular dystrophy. And nobody made all those AIDS patients get up out of bed and march all alone.

    Can we hear from some well folks, please?

  6. I was in grad school at Cornell in the early 80's, with my red ribbon attached to my backpack! A few of my healthy friends seem to be catching on that this is something they need to pay attention to - but I still wonder why some of the big name people with ME don't do more. Maybe we need to put more pressure on them to donate to WPI?

  7. Cool in the 80s and still cool now. Brava!

    It would be nice if something were done for ME/cfs in the name of Blake Edwards, who recently passed away and who had tried so hard to raise interest, action and money in Hollywood.

  8. Great post Creek! I was fairly cool in the 80's but my get up and go has got up and gone - you know what I mean!

    Maybe we need to get up a petition to Bill and Melinda Gates and the Warren Buffett family. If they can fund malaria research and HIV drugs in
    Africa, maybe they could find it in their hearts to help their fellow Americans.