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

Updated: Feb 11, 2021

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.