Last month ME/FM Society of BC volunteer, Howard Searle, interviewed Dr. Luis Nacul, Medical Director of BC Women’s Hospital Complex Chronic Diseases Program (CCDP), at his apartment for an article for our Society’s Giving Tuesday December fundraiser.
Howard was a registered ER nurse in his life before ME, and his background and health experience inform his interview.
There were so many great questions and answers in this interview that we have published it in 2 parts:
Part 1 focuses on the CCDP and clinical aspects of the diseases . Read here
Part 2 focuses on research. Read below.
Interview with Dr. Luis Nacul, Part 2 : Research
by Howard Searle
As well as being the Clinical Director for BC Women’s Complex Chronic Diseases Program (CCDP), you are also the new Clinical Research Director for the Program, and this comes with dedicated time and funding for research. Do you plan to invite CCDP patients to suggest what their priorities might be for the research that is conducted at the CCDP?
This is already happening. We have two pieces of research in preparation that were initiated by the ME/FM Society of BC. One relates to an MRI imaging study to look at neuro-inflammation, of which there is some evidence that it occurs in ME. We have submitted an application for funding and are waiting for a response. We located a very good radiologist who specializes in MRIs at Fraser Health and so we will use their expertise and state-of-the-art equipment with selected patients in our program.
The second research proposal that originated from our patients also came from the ME/FM Society of BC who felt it was important to conduct a Needs Assessment Study to look at the needs of patients with complex and chronic diseases and to evaluate how these needs are met or unmet by the various services that are available.
This is an area that I am particularly interested in, as I have experience in studying the needs of patients with ME and other conditions, and so we hope to submit a proposal on this soon. The needs assessment may incorporate epidemiological information such as how common both ME and Fibromyalgia (FM) are, how severe they are, how disabling they are, and then to look at the composition of health services that are available, and how they respond to the burden of disease in the population. These are two vertices of a triangle, and the third is to determine what are the most cost-effective services that should be delivered by the health system, by social services, and other providers. The goal is to determine if these services are being delivered to the patient population according to their needs. So, by understanding the needs in an objective way, then we can plan how to meet these needs in priority order by coordinating with all stakeholders, patients, and decision-makers for services.
What lines of inquiry into ME do you find most compelling?
I’m very interested in looking at the burden of disease in the population. I think we have very little information about that in Canada. The structure of health services and how well they are dealing with problems they are being faced with, is a big problem here and internationally. I think there are too few services that specialize in people with complex and chronic diseases, so there is a mismatch between demand and service provision. I think if you ask patients what they want most, they want to be respected, to receive diagnostic tests, and to receive treatment. Therefore, I think searching for biomarkers of these diseases, and for treatments, should be the main focus of research. This links to the fairly widespread misunderstanding of ME and FM: once you have found a biomarker that definitively shows that someone has the disease, then it will be believed and you can go forward from there.
Do you think ME is one disease or a group of diseases?