Tuesday, February 8, 2011

The times, they are a-changin

The NY Times' Science Times today had an important interview with Dr. Janet Rawley. Dr. Rawley is seen a key figure in the development of cancer genetics, and of the wonder drug Gleevec. Gleevec short circuits one form of leukemia, and also a rare stomach cancer, which previously had been a real killer. Leukemia patients taking Gleevec now live. Formerly they died.

Whether patients know where Gleevec came from is anyone's guess. Patients get diagnosed with this form of leukemia through routine tests - and then the doctor hands them a prescription for Gleevec. The drug has a few side effects. Perhaps patients have increased fatigue, perhaps they have acid reflex? How many of them know of Dr. Janet Rawley, and of the extraordinary and selfless contribution she has made? Dr. Rawley is a remarkable researcher, and an extraordinary woman. This was a great article to read.

Several parts of this NY Times interview are worth noting. One is Dr. Rawley's modesty:

"But looking down microscopes at chromosomes is not rocket science. If I hadn't found it someone else would have."

Another answers the question: "Do you think that the type of career that you have had is possible today?"

"No. I was doing observationally driven research. That’s the kiss of death if you’re looking for funding today. We’re so fixated now on hypothesis-driven research that if you do what I did, it would be called a “fishing expedition,” a bad thing. O.K., we knew about the Philadelphia chromosome, and after banding we had the technology to discover gains and losses among the different chromosomes. But once you knew that, what were the implications of the gains and losses? That’s the “fishing,” because there wasn’t a hypothesis. Well, if you don’t know anything, you can’t have a sensible hypothesis. I keep saying that fishing is good. You’re fishing because you want to know what’s there."

Reading this article makes one think of recent events in ME/CFS. There has been a decided shift in tone surrounding ME/CFS in the last month or two. A much more balanced and reasonable dialogue seems to be taking hold in parts of the "real world". Dr. Mikovits herself said on January 17th that the politics would diminish in the near future - perhaps she has something specific in mind? Certainly the conversation between virologist Dr. Vincent Raciniello and journalist Mr. David Tuller on Dr. Raciniello's virology podcast this last week hit a high note of reasonableness .

Frankly, the Patient Advocate believes that Mr. Tuller's article on January 3rd in the NY Times struck a chord in convincing people of the complexity and seriousness of this illness. Thousands of people read this newspaper - and they get their guidance from its direction. Certainly Mr. Tuller himself has demonstrated that he has some inkling of the character of this illness -although the Patient Advocate would like to "flesh out" Mr. Tuller's shortcomings in this regard. Mr. Tuller seems "open to suggestion".

In December, both Dr. John Coffin and Dr. Harvey Alter, in their own ways, indicated that they think that ME/CFS is, very possibly, the result of an infectious agent. Having main-stream virologists talk in this manner about this illness is unheard of. Both indicate that it is now time to find out what is behind this illness - XMRV or something else. In many other ways there is an emerging recognition of the seriousness of this illness. Research into XMRV, diagnostic markers and immunological function is moving forward in ways that have never been seen before. The association of XMRV and ME/CFS will live or die on its own merits, but the discovery of this association by Mikovits and Lombardi (and others) has spurred great interest in this illness. The October paper from the Whittemore Peterson Institute galvanized the issue. Who can argue with this?

And then there is the magnificent crap-out of McClure, taken down by a bunch of patients. She seems to have a thin skin. Most modern people in positions of authority take a tremendous beating - and they persevere. Everyone at the top today is a target. Why should she be different?She gets her hair mussed a little and quits. What courage is this?

All this leads to recent reports by Dr. Jamie Deckoff-Jones regarding the first efforts in the establishment of the clinical practice at the new Center for Neuro-Immune Diseases in Reno, NV. Here is an excellent interview with Dr. Deckoff-Jones by our friend Cort Johnson. For the past five years, this center has had a permanent place in the imagination of every ME/CFS patient in the world. In March 2009 the Patient Advocate himself went out to the WPI building site, a patchwork of dirt piles and trucks, and dreamed of what was coming. The fact is that right now - today and tomorrow - this treatment center is becoming a reality. In many ways all this is hard to digest. These patients have been abused for a long time. The closer this treatment center comes to fulfillment, the more anxious the patients get. Something like this has never happened in the history of this illness - and many are superstitious, afraid that it will be snatched away - or afraid that they will be left out. But this is not going to happen - and one person is going to make sure that this idea reaches its challenge and fulfillment - Annette Whittemore.

This treatment center is the brainchild of Annette Whittemore. It has been at the core of her ideas since she first developed them. She saw the possibility that a treatment center could be attached to a research center - and that they could work in tandem. In an unwavering fashion, Annette Whittemore has pushed this along. And now she is bringing her idea to fulfillment. How magnificent is this?

Take another look at Annette Whittemore speaking in videos made this last summer by Peter Cairns. She reveals herself - her temperament and generosity - immediately. Peter Cairns has several hours of additional video interview material reflecting the high-minded, elegant and consistent aspirations of this remarkable woman.

It is not difficult to make the jump from Dr. Janet Rawley to Annette Whittemore. Both are visionaries who see things that the rest of us can't - and carry their dreams to the point of realization. We as a group can wait to recognize this accomplishment, or we can see it now for what it is. The Patient Advocate chooses to recognize it now, and to acknowledge how extraordinary and selfless this accomplishment is - along with all the possiblities that are coming down the road. Things across the medical front are moving at warp speed, and maybe ME/CFS will finally get its chance with this new collaborative center.

Christopher Cairns


  1. Thank you, Patient Advocate. It is so good to see some positive signs. I hope this is only the beginning.

    "There has been a decided shift in tone surrounding ME/CFS in the last month or two. A much more balanced and reasonable dialogue seems to be taking hold in parts of the 'real world'."

    Patricia Carter

  2. When did Coffin say that he thinks ME/CFS is infectious? Do you have a quote?

  3. Very uplifting piece Patient Advocate. Do you have any suggestions on how we can move this along even faster? I'm imagining one decent demonstration in front of the CDC with the media involved would do it.

  4. You give us hope dear patient advocate.
    How can we move things along faster? Maybe a massive email campaign to the US health authorities to fund the WPI would be a start.
    Q. What prompted Myra McClure to resign?
    A. Patient power.

  5. I eagerly await the return of "observationally driven research" to the "scientific world".

    To my knowledge, that means of deriving a hypothesis has been completely out of fashion for the last quarter century:
    Totally gauche to even consider dragging out those "old-hat" concepts.

    But one never knows.
    Store away those old "theories" and "observations" anyway,
    for they might just come back into style.

  6. I have never met Annette Whittemore but I feel more of a conection to her than I do my family. She knows how I am living and wants to help. Thank you Mrs. Whittemore from all of us that suffer daily while you are at work! God will bless you.

  7. RE: When did Coffin say that he thinks ME/CFS is infectious? Do you have a quote?

    His words were:
    "DR. COFFIN: There is a small-scale, 100-patient study in process within the NCI to try to dissect this issue in more detail, in at least the small sample of patients being treated at the Clinical Center. That should provide us with some more information on this issue within the next year.

    My yes vote in the case of CFS was not based on the XMRV connection at all. On that basis alone, I would have voted no. But it was based on the evidence that I heard that matches my intuition and that of other people that there could well be an infectious agent here. It might be XMRV; it might be something else. For that reason, that kind of caution is warranted.

    There's no such evidence in the case of prostate cancer. There's no evidence, anecdotal or otherwise, for any kind of a predisposing infection or anything that I'm aware of. I thought the discussion we heard earlier on the subject from one of the public presenters was very much on the mark on this issue.

    You can see the entire transcript here.

  8. Are you okay, PA? Your daughter? Hope everything is well with you and your family.

    ...just haven't seen you go this long without blogging. Hope you're taking a long vacation somewhere where there's lots of sun and blue sky.

  9. Hey there, "A-nony-mouse".
    You used the magic words!

    What IS it about sun and blue sky?

    WHY does this matter? Does it mean something that this so often springs to mind as being sincerely beneficial?

    And if so, can whatever it means be exploited?

    Well... yes!
    It can.