The XMRV finding has put the spotlight for the past year on the research side of the WPI (or the Center for Neuro-immune Disease) but that’s just half of the equation. When the Clinical side of the Center opens sometime in May it will bring an entire new entity to the ME/CFS Community…an integrated clinic/research facility.
It will be more than just a much (much) bigger clinic. In this interview with the WPI’s Clinical Director, Dr. Deckoff-Jones describes a kind of central proving ground for ME/CFS treatment; a hub, basically, that the treatment field can orient itself around.
For one thing it will be quite large with 10-12 providers (doctors, physicians assistants, etc.) and room for more. The high volumes of patients seen at the Clinic and a sophisticated software system will allow it to more accurately assess trends and outcomes than individual practitioners can. There will be extensive outreach into the physician community – allowing interested physicians to utilize the WPI’s findings (and vice versa). Dr. Deckoff-Jones also describes a passionate and dedicated work environment – the likes of which she has not experienced before (and she’s had plenty of experience.
It sounds from your blog that the Director position is a good fit (health issues aside) for you. What is your background in this area?
I was educated/trained at Harvard, Albert Einstein College of Medicine and Queen’s Hospital in Honolulu. My specialty boards are in Emergency Medicine. I was an emergency doctor for 16 years. I directed a small, rural California ED early in my career. I was a member of the Quality Assurance committee of the hospitals in which I worked, because I have always felt that the review of adverse outcomes is essential. I worked for 10 years as an attending physician in the ED at Santa Clara Valley Medical Center, a Stanford affiliated county hospital in San Jose. It is a Level 1 trauma center with regional burn, spinal cord and neonatal intensive care. Eventually I became the Assistant Director of the ED and Director of Urgent Care.
I was also a partner in the Emergency Medicine group that held the contract for that and two other ED’s, as well as owning a subsidiary medical billing company. The ED group was seeing about 150,000 patients per year. I was in charge of personnel and recruiting. I supervised 50 doctors and 20 PAs.
After I became ill, I had a private clinic in western Massachusetts where I treated the late effects of brain injury with hyperbaric oxygen therapy, neurofeedback and CAM therapies. In that context, I treated Lyme, CFS and autistic patients. I have been too sick to work for the last 6 years. This most recent experience of being a patient and mother of a patient has probably been the most important of all in shaping my thinking about the clinic.
You’re not well but you noted in a recent blog that “no CFS/neuro-immune disease knowledgeable doctors have stepped up to the plate. So it seems to be my fate”… to be the Director for Clinical Services at the WPI . We know that you’re in charge of hiring the doctors and nurses etc, but after the clinic is open what will be your role? Will you be on site? Will your health allow that?
I have family constraints that keep me from simply moving to Reno. Even if I was free to do that immediately, my health is not reliable, so I am not comfortable scheduling my own patients in the immediate future. When the clinic opens, I will be on site for the first month or more continuously and as needed. For now my role is administrative and conceptual.
My future role(s) will depend upon how I am needed and how I hold up. The importance of the clinic to the patient community supersedes my personal needs. My family understands and supports this. Everyone involved in this project has put their personal needs aside. It is one of the most compelling things for me. I have never been in a work environment before where everyone was truly working for the greater good.
What types of physicians are you looking for? Any special qualities? There are a wide variety of physicians and many different treatment types – and everyone will bring their own ideas in. Will you train them? Will there be a more or less standard WPI protocol? Do you anticipate that we’ll be seeing someone new to the ME/CFS Community?
I am looking for family practitioners, internists, pediatricians and emergency physicians who are compassionate, capable of creative thinking and motivated by a need to serve. Also a need to learn. I am currently talking to several doctors, with and without experience treating the conditions in question.
Ideally, all will bring different things to the table, but function as a cohesive group. Although I do not expect consensus amongst the physicians, I do expect that they will influence each other so that their approaches will tend to convene over time. Medical decision making will of course take place in the context of an individual physician-patient relationship, but each practitioner won’t be practicing alone on the moon anymore. Eventually, I expect to offer onsite specialty care as well.
What types of patients do you plan on seeing? Neuro-immune Diseases is a broad category but there are limits, and I imagine you want to focus on a core subset. Who will the Clinic be seeing and who won’t it be seeing?
Our current interest list is predominantly ME/CFS and Lyme Disease. I am aware of some families with a CFS parent and an ASD child who wish to be seen. I expect patients from other neuro-immune disease cohorts to seek treatment from us in time.
In your blog you wrote “As for whether the WPI should have a clinic that treats a volume of patients, or just be doing a few clinical trials, that decision has already been made. Annette Whittemore’s vision of translational medicine included treating patients from the beginning. Bench to bedside to bench. The clinic exists. It is a very large space, capable of seeing a large volume of patients. “
This is exciting. When you say ‘a very large space capable of seeing a large volume of patients” what are you talking about relative to atypical clinic? How much larger and how many patients? How many doctors will be working there?
There is enough space to accommodate 10 or 12 providers. There is also a large infusion suite, multiple procedure rooms and undeveloped space for almost anything we want to do. There is plenty of room for in-house specialists and ancillary services.
You stated “I am in favor of making all treatment options available and tracking response in collaboration with the research lab…..With a large patient volume and a group of physicians sharing with each other and with the scientific team, it should be possible to look at these options systematically. “
It’s frustrating to think about all the knowledge and years of data embedded in our ME/CFS physicians that is never going to get out into the scientific mainstream. We could really use well grounded analyses of the effectiveness of anti-viral’s, etc. in this disorder. As you noted you don’t have the funds to fund large-scale treatment trials there any way the WPI can still quantitatively analyze success rates and report back on them? How will you look at the different treatment options systematically?
The WPI has the resources to do small clinical trials and we are beginning to plan our first studies. As a clinician who had a solo innovative practice, I can tell you first hand that it is not possible to look at what you are doing systematically (at that level), no matter how sincere the attempt at being scientifically grounded. The numbers are simply too small.
A large volume of patients and the depth of analysis possible with modern EMR (electronic medical records) will allow statistical analysis beyond anything previously possible. Clinical research is something of an oxymoron, but we should be able to make progress as quickly as possible towards knowing how best to monitor and treat according to current understanding, and “current” will be truly up to the minute.
You wrote that “One of the most upsetting things to absorb from the epidemiological study that is my mail is that the patients who have avoided doctors and expensive treatments have generally done better than many who have pursued endless aggressive experimental treatments.”
You referenced chronic Lyme patients – and we all know about the long term antibiotic protocols some people are on. The science around this is just so muddy and one of the most difficult decisions someone with one of these disorders can make is whether to try potentially harmful (and expensive) treatments. Who should be on antibiotics long term? Who absolutely shouldn’t? Which types of EBV patients respond to antivirals and which don’t? How long should Valtrex take to work? Do you really have to be on it for a year before you can figure out if it’s going to work out? This is a big task but it is a necessary one. Is the WPI going to be able to shed light on some of these areas?
That is the plan.
You wrote “We are going to have doctors who are not wedded to their particular black box protocol and who are willing to consider all therapeutic options for each individual they care for, whichever neuro-immune disease cohort you fall into.”
This suggests you believe these NEID’s (CFS, FM, autism, Lyme disease, atypical MS…..??) share core similarities. It sounds to me like you might be saying well, you may CFS but that doesn’t mean we won’t look at a treatment option for, say, atypical multiple sclerosis. Novel treatment options do seem to be popping up; we recently heard about a trial of people with ME/CFS taking a chemotherapeutic/autoimmune drug and a year and a half ago Annette referred to finding not just new drugs but finding drugs used in other field that just aren’t associated with ME/CFS yet. Is the WPI going to be taking a concerted look for treatment options outside the normal disease boundaries?
I think science will eventually prove that the core similarities in the illnesses you mentioned are due to a common etiology, likely sharing underlying pathogenetic processes: of retroviral origin. But even if that were to turn out not to be the case, our database would still be extremely useful for analyzing how to diagnose, monitor and treat the diseases in question.
We will be able to search after the fact by any parameter we choose- abnormal lab test, symptom, intervention, outcome, etc. In addition, the software has many other nifty features like ePrescribe, scheduling, ability to interface with commercial labs, secure email for communication with our consultants and our patients’ local doctors, ability to scan in past and outside records, including imaging and lots of other features that save labor and encourage detailed documentation. Yes, I am a kid in a candy shop!
One piece of encouraging detailed documentation is near and dear to my heart. I am old enough that I trained before the days of CAT scans and advanced imaging techniques. I was taught that the answers come from the arts of history taking and physical diagnosis. The later in particular has fallen by the wayside. I have personally experienced flying across the country to see a doctor for an hour that didn’t touch me once. That is not going to happen.
Every patient will have a comprehensive physical exam documented in a way that will allow us to track subtle findings, over time and across our patient database.
We often hear the term ‘bench to beside’ – what does that refer to?
Bench-to-bedside is a translational research term used to describe the process by which the results of research done in the laboratory are used directly to develop new ways to treat patients. We plan to take that a step further with what we find clinically driving the course of the research.
You wrote “Medical decision making will be influenced by continuous interaction with the research lab and physicians around the world. We’re going to keep track of a large number of patients, so there is an opportunity to contribute to the greater good of the community. The doctors on the frontline will be sharing with the best and most experienced clinicians and scientific minds from around the world; they will know what the current options are and how to think about them for a given individual.”
This almost sounds like you may be setting up a formal network of physicians? How do plan to share your findings with other physicians? White papers? Conferences? Webinars? WIKI? Do you have any set plans on how you plan to interact with other interested physicians?
The WPI has formed a Clinical Advisory Board to interface with the research team in interpreting the clinically relevant science in real time. In addition, we are forming a Physician Working Group of talented physicians from all over the country and the world whose members will participate in internet based discussions and onsite conferences.
The necessity of practicing in the fog has shaped the thinking of all the isolated practitioners trying to care for the patients. Many defects of metabolism have been identified that vary, at least in severity, from patient to patient. Thoughtful practitioners have tried to identify those specific defects in individuals and influence them with supplements and drugs.
A more simplified approach informed by understanding the fundamental mechanisms underlying this disease is vitally needed. Our goal is to explicate those mechanisms allowing physicians to develop targeted protocols instead of focusing on symptoms.
It is often said that ME/CFS is a heterogeneous disease, but it isn’t. There is a menu of signs, symptoms and laboratory abnormalities. Nobody has all of them and it is possible for there to be little symptom overlap between two particular patients. We each have a laundry list of symptoms that may make us appear different, but seemingly diverse symptoms often fall into broad categories by mechanism. For example, diffuse inflammation may cause a gut problem in one individual, but a bladder problem in another. One person may have migraines and another Raynaud’s as a manifestation of vascular spasm.
The underlying homogeneity by mechanism should lend itself to the creation of a decision tree that can be modified as we analyze our findings and outcomes statistically.
As a new entity without a lot of cash reserves you’re operating under a lot of financial constraints. You noted that the Research Institute will not be helping fund the Clinic but that “The funds actually need to flow the other way, from the clinic to the Institute. The reality is that the patients are going to need to fund the research. Not fair, but true. So yes, once again, the patients get screwed.
That’s unfortunate but I think patients understand the vital need for research and the role the Research arm plays in their care as well. Will the need to support the research branch put any limitations on the clinic?
The clinic is very well equipped. At the outset, we will need what is needed in any large primary care practice, nothing fancy, except software. It will be a staff intensive, not equipment intensive practice, at least at the outset. One of the most important things going forward is the ability already in place to biobank specimens for the future. The support of the onsite clinical lab is a unique feature of the practice. Dr. Lombardi is able to provide our physicians with the necessary tests, even if esoteric.
You wrote “Down the road, I’d like to be able to offer comprehensive care, including an extended stay to begin rehab, though it’s just a twinkle in my eye at this point. There’s a wonderful opportunity in Reno for someone to take on a Ronald McDonald type house, if you are out there reading this.“
I don’t know why this wouldn’t be a real possibility….It’s a large facility so there should be lots of patients in the area. They need a place they can feel safe and comfortable that has low levels of chemicals and understands their needs. Some patients will want to stay in the area to get ongoing treatment. This sounds like a wonderful opportunity :).
I agree. But it’s a twinkle in my eye at this point. My plate is pretty full.
The answers I’ve given here are conceptual at this point. It is a work in progress and we need to be fluid to meet the needs of the patients as the practice develops. It will take form influenced by the collective experience and evolving ideas of the team going forward. I am wedded to nothing except figuring out how to ameliorate the suffering.