Instant Karma

I imagine most of you have seen the news that the Whittemore’s are in some hot water. I’m sure we will all stay tuned to this stranger than fiction unfolding psychodrama. Apparently, it was even weirder there than I guessed. Maybe they will be too busy now to continue their insane attempt to blame everything that went wrong on Dr. Mikovits. Where is the board of directors? Is there anything there to save? University of Nevada, isn’t it now time to ask that the CEO step down?

Link to today’s song, Instant Karma by John Lennon, since I don’t have the patience to figure out how to embed the video, with next to no internet. I am writing to you from an RV park outside Tuscon on an iPad with no wireless and one iffy bar of cell service, in WordPress, with which I am still unfamiliar. I have been occupied, or perhaps preoccupied is a better word, with the inner workings of hosts, domains, FTP, how to talk to computers and get them to talk to one another. On the WordPress site it says “code is poetry” and I think I am inclined to agree. That said, it is a relief to return to trying to communicate once again with humans.

All that tinkering has left me with a self-hosted website, a new and improved blog, with easy to use (I hope) nested comments, having somhow managed to import the old blog, complete with all 6700 comments (except for the last two written on Weebly, which couldn’t be exported). A few links to fix and one old blog is missing, but all and all, a smooth transition. I now have the ability to ban certain IP addresses without having to moderate comments. I am increasingly willing to do so, as I recognize the potential for intentional disruption and disinformation possible on the internet.

Hoping to further the discussion and sharing of ideas started here in a safer, more organized environment, I have set up a full functioned forum, also hosted at I am a newbie administrator and not a forum frequenter, but I have some wonderful moderators to help us out. Unlike the blog, to stay signed up, you must fill out a profile, including your full name and advanced degrees, if any. In the interest of creating the safest space possible in which to share, if you must use a handle for one reason or another, I need to know who and where you are, or you will be unsubscribed; I will however keep your identity to myself. I am hoping some doctors and scientists will join us; I will moderate a private Physician Scientist Round Table. There will be specialty forums, e.g. Lyme Disease, Biotoxin Illness, Autism Spectrum Disorder. Moderators will send warnings for personal attacks or suspicion of intention to disrupt, and refer to me. I will have a very short fuse for banning. Off-color humor is permitted. Disagreement is encouraged. It is my sandbox. Playing nice required. Here’s hoping it is constructive.

I need to figure out the settings and turn on the comments. WordPress isn’t as user friendly as Blogger, but has many more capabilities, once I figure out how to do it:). I’ve been working mostly on getting the forum going and haven’t learned WordPress yet. I am grateful to Blogger; it was immediately accessible and simple to use when Ali said, “Mom, you should start a blog.” Our needs have grown and, with luck, the new forum should be live soon. I apologize in advance for any technical glitches; I am on a steep learning curve, but still definitely a newbie. I’ve set up a framework of topics to get us going. I’m hoping to accommodate the needs of various groups for deeper discussion than could ever happen in blog comments. Let me know what other topics you might want, after you register. Also, if anyone has a special interest or expertise and would like to help moderate a particular forum, please get in touch. All suggestions appreciated.
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23 thoughts on “Instant Karma

  1. The chance to discuss things in more depth (and hopefully more civility and less repetition) in a forum associated with Dr Jamie’s blog is an opportunity that I never thought possible. Things do change in our world, it just seems that the positive ones come at a snail’s pace and the negative ones fly in with dizzying speed.

    This is really exciting for all in the patient community, and I am very grateful to Dr Jamie for continually advocating for us all, putting herself out there in an unwavering way, and not retreating when the bullets and zingers fly.

    I hope we all can bring our best game and keep putting our heads and efforts together. Good things can come from groundswell movements.

    On the off chance that a reader may have missed the news, here’s a link:

  2. Where’s Patricia Carter…wouldn’t this be the perfect opportunity for her to gloat?

    Seriously, this is sad, but no surprise. The Whittemores have a long history of rather shady dealings. Doesn’t mean Judy’s a saint however.

    Then again, it doesn’t mean she isn’t. Although she must’ve been flown around in those private planes a few times. Don’t ya think she would’ve wondered where the money for that was coming from?

    • Why would Judy wonder about that? To all intents he was a successful business man with money and Judy a scientist with a heart and a passion to help others. Yes she has been very trusting -perhaps a bit too much but some folks are very persuasive and convincing too.

      • Oh come on. Are you actually saying that Mikovits didn’t know that the WPI was struggling for funding and asking for donations? Wouldn’t common sense suggest that she may have wondered why they’re flying around in private jets and/or where is the money coming from to pay for this when they can’t fund other areas?

        She certainly may “have a heart and a passion to help others”, but she also needed a JOB. Not to mention the notoriety and acclaim that would have come her way had XMRV panned out.

        Sorry, but I just don’t think all her motives were so selfless…

        • @Kelly – it really doesn’t add to the discussion of sharing ideas and seeing where the science is going to be casting aspersions on Dr Mikovits.
          I worked with a non-profit arts group for several years. We had a very wealthy patron. We would have no way of knowing if the nice dinners he treated us to or the use of the guest house on his ranch was his to offer or if he was playing fast and loose with someone else’s money or home. We operated on a shoestring, even with his funding. No reason for us to have any idea what would have been legit or not. The WPI and the company H. Whittemore was a partner in should have been two completely separate entities and no employee of WPI should or would be expected to know how and what was being reimbursed or donated by the partnership.
          Maybe a more pertinent question might be if Dr M was questioning where WPI money was going and if that was considered “insolence” by the CEO?

          • I should have also said that not only did we operate on a shoestring, but we too were always beating the bushes for donations. It’s the nature of the beast.

          • Your last point is a good one…I agree that there is a possibility that if she did think of questioning it, she may have felt not comfortable doing so.

        • Who didn’t know that people were trying to cut off funding into the retroviruses.

          Dr Mikovits was only trying to save lives.

          If the people running the WPI have used the money in a way they should not have that is a different matter.

  3. Wow, Dr. Jamie, your awesomeness exceeds expectations again! Thank you so much for getting your head round the technical stuff. You are definitely a legend in the making. I’m excited about the potential of your forum, forums are a great and productive means of communication. And one can review past topics, add to discussions… a forum, unlike facebook or comments to blogs, is reflexive.

    Look after you, Jamie. You are a treasure.

  4. Congratulations on getting this blog and everything else up and running! It’s awesome to me, who because of innate technological limitations and CFS-related-and-caused cognitive issues, cyberspace is an enigma to me. But more power to you for figuring this out.
    I look forward to reading this moderated blog. (I’m not sure how to sign up though. I need basic instructions.)
    It looks like the chickens are coming home to roost upon the Whittemores. I hope so. I had read the Wikipedia entry about the patriarch Whittemore and it said more than enough to sour me on this dynasty. Two points made on Wikipedia: That he helped to weaken environmental protections and workers’ rights in Nevada due to his lobbying efforts and cronies.
    We’ll see how this plays out in terms of Dr. Mikovits’ situation, and if there is
    judicial fairness to her.
    In addition to this information and discussion here, I appreciate the music. I’m still running Tracy Chapman but have to catch up with the more recent posted songs.
    Maybe this will be our year! I can only hope.

  5. Really looking forward to this. It does feel like something is being salvaged.

    Thanks Jamie and a big round of applause for the IT jiggery pokery.

    Jace if you still have that magic sparkly fairy dust, could ya chuck a load around, especially at the front door of the forum.


  6. If I understand correctly, you will not be using WordPress?? I hope that’s true as I cannot get any WordPress blog to open.

    Looking forward to your further adventures. :-)

  7. Glad you’re getting settled into your new site! The forum sounds terrific, and I hope you like wordpress as much as I do. Mine is not self hosted, so likely a bit easier than this.
    You’re a terrific asset to our community, Jamie – thank you!

  8. I’m excited to play in your sandbox, Jamie. Thanks for setting up the forum.


  9. Interesting to see at ME/CFS Forums that WPI got a grant from the Nevada Energy co. which is in the list of allegations in the filed lawsuit documents.
    I knew from the get-go that finances had a lot to do with WPI’s goals; that is, after I read the Wikipedia entry about the Whittemores. And it’s a big factor, I think, in why they wanted Dr. Mikovits to make huge discoveries, which would bring fame and big money to WPI. And why they are suing her for financial damages.
    I quote the fabulous O’Jays, “Money is the root of all evil.”

    • Dr Mikovits did make a huge discovery.

      It has nothing to do with how the Whittemore’s operate.

  10. Good luck Jamie on the new Blog.
    I have been asked about my reaction on the latest WPI news. I said previously the dissent will cause problems not only for Judy, Harvey, Annette etc but all the patients, doctors and researchers who are interested in this terrible disease. It will create an aura of instability with adverse effect. The latest legal problem should be separated from ME/CFS . Rancor will inflame the problem. We need quiet thoughtful settlement.
    Can the WPI continue ? Should the WPI continue ? Is the welfare of patients more important than the fate of an institution ? These are questions that should be addressed immediately by the Whittemore family, the attached University and all who are interested in a prompt settlement of a difficult moment in ME/CFS history.
    It is a sad moment for all of us.

    Meanwhile some good news I have been invited to speak with the Government Department of Health on behalf of patients in my native Northern Ireland on Friday March 2nd. The premise is to deflect a potential psychiatric oriented ME/CFS center in Belfast. I shall speak to a patient group on ME/CFS Treatment on Thursday March 1st at the Lansdowne Hotel Belfast at 7.30 pm ( Free admission).

  11. There is an excellent piece over at the ME/CFS forums on the financial wheeling and dealing by the Whittemores, the lawsuit against them and the impact on ME/CFS research, etc.
    It’s well worth a read.
    Also, to anyone who misinterpreted my comments about WPI and Dr. Judy Mikovits, I recognize her contributions and am appalled at how she has been treated, having her research taken from her, leaving her without copies, being hunted down, jailed, sued — and for financial damages, no less! What I was saying is that I did not trust the Whittemores from the time that I read about their financial dealings and friends in high places, and their influence in cutting environmental protections and workers’ rights in Nevada. And I thought that they were interested in fame and donations with WPI, although I won’t rule out a genuine concern for their daughter’s health. And they probably thought that Dr. Mikovits was their claim to fame and fortune, then got very angry when it wasn’t working out to their benefit. So they took it out on her, deprived her of the products of her own creativity, training and work and vindictively and unfairly, had her chased down and jailed like she had committed capital crimes — actually like the crimes they are now accused of.
    I hope the truth comes out and that justice and science win out.

  12. My only concern is how ME/CFS sufferers are treated and viewed, and whether or not any institute, program or test is helping or harming us and moving towrds our critical need for causes and successful treatments, if not cures. Will something hurt or harm us? Will it move studies and funding forward? Will it enhance attention to our dire needs and increase the attention paid to our disease in concrete ways, with serious studies and substantial funding.

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