Tracking my efforts to beat Myalgic Encephalomyelitis (ME), aka CFIDS, aka CFS

Tracking my efforts to beat Myalgic Encephalomyelitis (ME), aka CFIDS, aka CFS

Monday, August 26, 2013

Open letter by Dr. Montoya

A friend of mine who is a patient of Dr. Jose Montoya at Stanford University brought this letter to my attention.  In it, Dr. Montoya summarizes all of the ongoing research that he and his team at the Stanford Initiative for Study of Infection Associated Chronic Illnesses (that's a mouthful!) have been working on.  And a few more that they will be working on soon.   

The entire letter is worth reading, but I wanted to highlight a few points:

In reference to his study of infectious pathogens that may contribute to chronic diseases, Dr. Montoya writes:
"Towards this end we are collaborating at Stanford with: Manisha Desai, Ph.D, Clinical Associate Professor of Medicine and Holden Maecker, Ph.D, Director, Human Immune Monitoring Center, and my colleagues at Columbia University Medical Center in New York City: W. Ian Lipkin, MD, Director, Center for Infection & Immunity, and the John Snow Professor of Epidemiology, and Professor of Neurology and Pathology and Mady Hornig, MA, MD, Associate Professor of Epidemiology."
It's things like this that get me charged up.  It seems we're starting to see more collaboration among the heavy hitters in the ME/CFS research world.  When doctors like Montoya and Lipkin start collaborating, it's hard not to believe that good things are coming.

The other tidbit I liked was the section on gene expression:
Investigation of gene expression and immune system dynamics of infection in acute and chronic diseases: 
Our team is currently working on new studies to understand the immune response and possible immune dysfunction observed in our patients. We are looking at gene expression, cytokine profiles, and phospho immunoflow to learn whether our patients’ immune response correlates with the presence of pathogens and other infectious agents. We have embarked on the task to identify new biomarkers that may help predict changes in disease over time and response to changes in medication. 
I like that they are studying the nexus of the immune dysfunction and gene expression in ME/CFS, as these are the two main focuses of my treatments.  I truly believe, in my case at least, that immune dysfunction is at the center of my problems, and that genetics may provide the best clues to how to reverse it.  

I'm not sure how I feel about the use of the word "possible" next to "immune dysfunction"?  C'mon, I think we're way past the point of mere "possibility," right?  I'm mostly kidding.  Scientists still consider gravity a "theory," so I guess the bar for conclusiveness is set pretty high.     

7 comments:

  1. Ha! Reading your post I had the exact same reaction: "POSSIBLE immune dysfunction"? Ya think? :)

    ReplyDelete
    Replies
    1. I don't know what the thinking is there, Elizabeth. I think maybe scientists always use qualifiers like that even when they feel 100% sure about something. It protects their reputation among peers.

      Delete
    2. ...it avoid the appearance of bias toward a particular result.

      Delete
  2. Ha! Reading your post I had the exact same reaction: "POSSIBLE immune dysfunction"? Ya think? :)

    ReplyDelete
  3. Patrick-Yes, this is reason to be optimistic no doubt. Like you, I believe the immune system to be at the root of my problems given the onset coinciding with a flu like virus. I am considering switching doctors soon, as I feel that my current one has hit a plateau. He is not offering much in the way of solutions, I just bring him ideas based on what I have read elsewhere. I have a consultation (one hour) coming up with a doctor here in town who is affiliated with a major hospital, and focuses on complex illness. This is next week, and I figured it would not hurt to see what this doctor may be like, plus my insurance covers this doctor and not my current one. I had saline IV number 2 yesterday, with one more this Thursday. I will evaluate after that, because at $60 a pop, this could get very spendy. Maybe it is one of those things I save and do prior to a weekend plan or something. In regard to your experience with addy, I think your analogy hit it on the head. It may not really clear the fog, but give you more energy to deal with it. I just know I can manage my day a bit better on vyvanse than w/o. Keep me posted on the vit B protocal as well......

    ReplyDelete
    Replies
    1. Hi Bret. I've recently hit a plateau with one of my doctors too, but unlike you I haven't even bothered yet to seek out a new one. I commend your tenacity, and I think that those who recover are the ones who relentlessly pursue treatment options until they cobble together the right combination of treatments that work for them. That's the theory I'm going on anyway.

      How do you feel after the second saline IV? It depends on who often you get them, of course, but my first reaction was that $60 doesn't sound *too* bad. I might have expected worse with the way our healthcare system marks up everything, even bags of salt water - the most abundant thing on earth.

      Delete
    2. Just a note to report back on the Saline. I had my third treatment yesterday, and will have my fourth and final one next thursday. Then I need to decide if this is something to consider for future treatments. I have to say that after the IV yesterday and so far today I feel a bit more clear in the head, and a bit more energetic. Enough to notice anyway. I also exercised a bit more yesterday (ran 2 miles on the treadmill versus the standard 1.5) and feel no crash today. So.....I will need to see how long the benefits last, which would determine the frequency of the treatments. Dr. Bell of CFS fame stated that this was a favorite treatment of his that patients saw improvements from. As we know, seeing any improvements at all that can improve our quality of life is huge. Curious if there would be a way to have my wife trained to do the IV at home. I am sure she would be ecstatic to take on that role...nurse...along with wife/mother/employee/household organizer, etc......

      Delete