Watch / read Dr. Luis Nacul's message for the Millions Missing BC 2020 Rally.

Updated: Jun 10




Due to COVID-19 travel restrictions, Dr. Luis Nacul, Medical Director, BC Women's Hospital Complex Chronic Diseases Program (CCDP), has been stuck in London. The time difference prevented him from participating live in our Millions Missing BC 2020 Online Rally on May 30, so he kindly filmed his message to our British Columbia community in the lovely backyard of his home in London to be screened at our rally.


Many thanks to Senior Audio Producer, Doug Paterson of Big World Sound for cleaning up the audio!


Following is the transcript of Dr. Nacul's message:


Good afternoon, and thank you for having me today I’d like to say a few words about the Complex Chronic Diseases Program’s clinical and research activities and also about the impact of COVID-19 pandemic on people with ME and other complex chronic diseases.

Let me start by our clinical model of care. I’m pleased to report that, following a period of transition, we have now a virtually well-established model of care which contains two streams: the medical and the self-management stream.

So, what happens is that when a patient arrives first time at our program, they are seen by a physician, who establishes the diagnosis, or confirms the diagnosis, and then and then works in partnership with the patient in relation to a treatment and management plan. As needed, there are follow-ups up to a period of one year. The other stream is what we call the educational stream for self-management and this is optional. But most of our patients actually decide to take the activities and generate good feedback on that. These activities are all handled in groups by our allied team of clinical professionals. In relating, increasing capacity where possible, and also by reviewing our referral processes so as to a better screen for people who are more likely to benefit from our program.

We have been stepping up with our virtual health activities, and this is very good, especially in the context of the COVID pandemic, and the good news here is that we have not stopped our services during the pandemic, and continue to provide physician appointments, first appointments and follow ups, as well as the group activities. But all of them have been taking place virtually. And the response has been very good. Most people reported very very good experience, and so we can report as physicians as well that the system has been working very well. And this opens many possibilities for the future, beyond the pandemic, when we could explore more virtual health mechanisms to attend a larger proportion of our population perhaps those who are at high risk, such as the severely affected, and those who may live far away from Vancouver. So there are good prospects there.

Of course, we are examining the possibilities, and we expect to have news for you in the future, but first we need to be sure that we can provide all these services virtually and very effectively and safely, and also have approval from our regulatory bodies. And this links, of course, with COVID pandemic. So, as I just mentioned, we continue to provide services for patients during the pandemic. We’ll continue to do so.

So the care provided by CCDP hasn’t been affected in any significant way.

However, there are two other questions that are very important:

What are the risks of people with a complex chronic disease if they acquire the infection with SARS COVID-2 virus? And the other question: is there a higher risk that there’ll be a number of people developing ME/CFS or post-viral fatigue following COVID? And there are some indications for the latter, based on what happens with other viral infections, and not least the SARS 1 virus, which caused a number of people to remain unwell with symptoms similar to ME.

So, how do we find out more about that?

Of course, everything is new in COVID-19. So, we have submitted a grant application for funding with the Michael Smith Foundation for Health Research where we will examine what happens to people who have a complex chronic disease and acquire the infection. So, this is one project which we are very happy to be doing with the patient support and involvement in parts of the research project activity, I would say. And the other question is what happens following COVID? And we are partnering with colleagues at the main hospitals in Vancouver in relation to the possibility of following up patients beyond the acute infections to observe who and how many of them will develop perhaps symptoms, long term symptoms. So, this again, was submitted as a grant application for the Michael Smith Foundation.

But my message if you have ME, or another complex chronic disease, my message to you is just follow the general advice as for the general population. Stay put when necessary. So protect yourself with hygiene measures, as everybody will know well now. And should you develop symptoms of the disease, please do contact your health service. And it may be useful and very important to say, to report the condition that you have, such as ME or another condition so that to tailor the help that you receive.

We don’t have at the moment evidence enough to say whether the disease by coronavirus can be, or is, more severe, or, indeed, if people with ME or other CCDs are less or at a high risk of infection. But we are pursuing that.

So this links to the research activities that we are conducting, and I would like to report on four research activities. First one is the CCDP Data Registry which is going on for a few years now. And we have over 300 patients who are clients of CCDP to whom we are very grateful for their provision of data on their clinical status at admission to the program, then 6 months after, and then at discharge. This is very important to help us evaluate the results of our program, and the impact of our program on people who are part of them.

Many of you will have heard about the ICANCME network, and CIHR has awarded a grant nationally with a number of collaborators, and CCDP will take, or is taking a lead role in developing the first national cohort for people with ME. And this will be, as I say, a population-based cohort, people with ME who are either initially in British Columbia and we would like to roll this out nationally in due course.

The other activity that we are taking leadership on is in providing other services across Canada with the knowledge and expertise we have through the data registry here. And so we would like to expand, or facilitate expansion of the database to be used in other parts of the country.

And finally, we have a virology study which is going to take place in the second year of the project where we are going to examine the viral etiology of ME. And, of course, this complements all that is going on in relation to Coronavirus but this is a much wider project which looks for all known viruses that may affect the community. And this again is with the collaboration with BCCDC virology.

We have a lot of patient involvement in ICANCME and I wouldn’t be surprised if there would be a couple of you in this audience who are part of the network. And, in addition to that, we have two other projects which are in close engagement of the patient community, or it’s a true partnership with the community. One of them is our health needs assessment for ME project, which is a collaboration with the ME/FM Society of BC and is in full course now. And the idea is that, as an outcome of this study, that we’ll have a good planning strategy for conducting a full needs assessment in the province.

And the other project which is in the planning phases at this moment in time is with Fraser Health Support Unit and the patient community. It’s a patient engagement activity And it includes the evaluation of people with ME in relation to the possibility of having signs of neuroinflammation, or inflammation of the brain, on imaging studies such as MRI. So this is another very exciting project, again with the patient community, who initiated the project, and who pretty much, as the previous project I mentioned, are the main partners in this research.

So, I would just like to conclude, and thanks again for your time and listening to me by saying that it’s a privilege to be a part of the CCDP and it’s a privilege to be able to try to help in terms of how we deliver clinical care and how we improve this delivery and at the same time to, again, with the patient community to discuss and conduct research together to find out more about complex chronic diseases.

Thank you very much again for your attention and I hope you enjoy the rest of your meeting.

Thank you.




#MillionsMissingBC #LeaveNoOneBehind #ChangeTheFuture4ME

Mailing Address

PO BOX 46879 STN D

Vancouver, BC   V6J 5M4

Call

T: 604-878-7707 or
BC Toll-free: 1-888-353-6322

  • facebook
  • Twitter Clean
  • White YouTube Icon

COPYRIGHT © 2016 MYALGIC ENCEPHALOMYELITIS & FIBROMYALGIA SOCIETY OF BRITISH COLUMBIA