Funmi Okunola: The information in this podcast is provided for informational purposes only. You should not use any information discussed in this podcast and related materials to make medical or healthcare related decisions. Always consult your physician or other qualified healthcare providers with regards to diagnosing and managing your medical condition. Any medications or treatments, including any discussed in this podcast, should be initiated and managed by a qualified healthcare professional

Funmi Okunola: Welcome to Long COVID the Answers. Today's Episode is entitled “Myalgic Encephalomyelitis or Chronic Fatigue Syndrome”, otherwise known as ME/CFS. I'd like to introduce Professor Ric Arseneau. Professor Arseneau is a clinical professor at the University of British Columbia in Vancouver, Canada, and a specialist in internal medicine with expertise in ME/ CFS, Fibromyalgia and Long COVID.

He was the physician lead for the Provincial ECHO Education Programme for Long Covid in B.C. and was formerly the Director of Programme Planning of the B.C. Women's Hospital Complex Chronic Diseases Programme in Vancouver. Welcome, Ric. Thank you. Ric, do you have any conflicts of interest to declare?

Ric Arseneau: None, thank you.

Funmi Okunola: Ric, could you please tell us how you became interested in Chronic Complex Diseases such as ME/CFS?[00:01:00]

Ric Arseneau: So, I just see it as an extension of my work as an internist. I've always liked complex Multi-System Diseases, and over time I became the go-to guy in our division for anything that was unexplained, weird, wonderful. So, a lot of patients got referred to me, and I learned a lot from my patients, and over time just through pattern of referral got an interest and expertise in the area.

Funmi Okunola: What is ME/CFS?

Ric Arseneau: So, to me ME/CFS is a Complex Chronic Multisystem disease of unknown etiology. We do know that certain people are more prone to get it - like patients who have a family history of ME/CFS, Fibromyalgia or related disorders. Patients who've had adverse childhood experiences, and genetics.

But [00:02:00] usually what happens is even in identical twins, only 50% of patients will both get ME/CFS. So, there's definitely something in the environment that triggers it, and that trigger is usually some sort of overwhelming stressor. The three main categories are infectious stressor, which is why we see Post-Viral ME/CFS and then we see it also as a result of physical injuries like car accidents, but also as a result of psychological overwhelm because it is in the same family as PTSD.

Funmi Okunola: Could you describe some of the symptoms and signs of ME/ CFS?

Ric Arseneau: There are over two hundred symptoms that have been described to me which can make it very confusing to physicians and patients. But if you look at the forest rather than the trees, those symptoms fall into five major categories. There's fatigue. With Post Exertional Malaise there's pain, sleep disturbance, cognitive [00:03:00] symptoms, or what patients call brain fog, and then weird and wonderful unexplained symptoms. Those include mostly brain symptoms, autonomic dysfunction, and gut symptoms, although there's a whole host of them. So basically fatigue, pain, sleep disturbance, brain fog, and unexplained symptoms.

Funmi Okunola: The deep phenotyping of Post Infectious ME/CFS study released online this month in Nature Communications seems to imply that prolonged infection from say a bacterial virus alters our immune system and gut microbiome.

Ric Arseneau: Yes.

Funmi Okunola: In ME/CFS sufferers they said this kind of leads to a chemical alteration in the brain and nervous system so that part of the brain that controls motor actions fails to function adequately, leading to fatigue and Post Exertional Malaise. Do you agree with their findings?

Ric Arseneau: Basically, the main theory right now is that some sort of overwhelming stressor, like an infectious [00:04:00] infection, causes brain-based changes, and they're usually identified at the level of the glial cells, and what happens is the glial cells become activated, and when I talk to patients, I say “that the glee is gone out of the glial cells and they're unhappy, and they produce inflammatory cytokines”. What happens is patients are stuck in a pattern where that cycle of activation can't be turned off because normally what would happen is with a stressor you'd have an activation, you'd have resolution of the stressor, and then you'd have the body go back to baseline.

What happens with ME/CFS, Long COVID, and Fibromyalgia is a switch gets stuck in the on position so that you can't turn it off. The cycle of glial activation which leads to activation of the fight or flight system and dysautonomia, immune changes, [00:05:00] inflammatory changes and a whole bunch of changes downhill from the brain-based changes. Our best understanding right now is that it's a neuro-Inflammatory condition.

Funmi Okunola: Okay, and so how do patients present to you? How do people present to you with this syndrome? I mean, practically speaking, is there classification or a grouping of people that present?

Ric Arseneau: They don't usually present to me because I do secondary and tertiary care, and unfortunately the trajectory for many of these patients is a bunch of symptoms within that two hundred range which overwhelms their physicians, which leads to medical gaslighting or an overwhelming amount of investigation with no resolution of the problem. I've had some patients see as many as twenty-seven different specialists in this Province without getting an answer.

Luckily with education, that has changed over the last couple of decades and patients are being routed [00:06:00] to the right care much earlier on. But patients usually present with fatigue, sleep disturbance, brain fog, pain, and unexplained symptoms. But depending on how they choose to focus on those symptoms, because our system is really not set up to help patients with multi-system diseases, most patients are only allowed to present with one to three symptoms to their primary care physicians.

Most of my patients have twenty to forty symptoms. Then when they get sent to a specialist, the specialist is not interested in anything except the lens through which they want to see neurologic disease, cardiac disease, respiratory disease. So, patients are often left very unsatisfied despite the fact that they do access a lot of medical care.

Funmi Okunola: So, what at the moment is the average time scale for someone suffering with Chronic Complex Disease to be [00:07:00] diagnosed?

Ric Arseneau: I don't know right now, but the last data that we have is from 2015 and the average at that time was five years.

There's a paper that came out recently on POTS - Postural Orthostatic Tachycardia Syndrome, and that also showed five years. It also showed that over 90% of those patients received a psychiatric diagnosis before they got the correct diagnosis, and this was a study of Canadian and American cardiologists.

Funmi Okunola: So personally, as a family physician or GP myself, I don't feel confident in diagnosing ME/CFS or Fibromyalgia, and until I started to do lots of research was at a loss at managing these types of people. I know my colleagues were the same. What would be your advice with regards to a family physician’s approach to managing and diagnosing these patients?

Ric Arseneau: I think there's a couple of rules of thumb that serve you well. [00:08:00] So when I teach my residents, I often ask them, I say, “what's your one question that you want to ask a Fibromyalgia patient or one question that you want to ask a Chronic Fatigue Patient”? That rules it out. So, the one question that rules out Fibromyalgia is widespread pain.

If you don't have widespread pain, you don't have Fibromyalgia. So, you go down a different route. If you have fatigue but no Post Exertional Malaise, and so Post Exertional Malaise patients will describe that as a crash as soon as they do too much, even by just a bit - they crash and it takes them a day, two days, three days a week to recover.

So, without Post Exertional Malaise there's no Chronic Fatigue Syndrome and without widespread pain, there is no Fibromyalgia. That's your entry point. After that it's the five categories you listen for - fatigue, pain, sleep disturbance, brain fog, and unexplained symptoms, especially autonomic, GI, and neurologic.

That'll get you [00:09:00] really far. If you go to my website, which you can see my name here on the screen, Dr. Ric Arseneau, that's the website, drricarseneau.ca, without the spaces in the dot, under resources, I have put together a primary care tool kit for family doctors, and it gives us advice on Long COVID, Chronic Fatigue Syndrome, Fibromyalgia.

There are also two videos I participated in the Long COVID ECHO for New Mexico, and I did a primary care tool kit for them. It's also the same tool kit I use for the ME/CFS at St. Paul's Hospital. That's all available for family doctors, and then I think that for the most part it's education. So, if you look at our website, you'll see that we have a YouTube channel. I invite special lecturers to come and talk about various topics. Fifty percent of the topics are with occupational therapy and physiotherapy, and then the other [00:10:00] 50% are on a range of topics, including, for instance, we just had pelvic pain syndromes, female hormones and pain, naturopath approach to pain, dietician and irritable bowel syndrome, dietician and low inflammatory diet, mast cell activation syndrome, POTS, and physiotherapy approach to POTS.

So, we have a whole bunch of educational material, and that's why patients who are referred to our clinic can participate in all of our educational offerings even before they get to see the physician so that we're not the bottleneck for them participating in getting care.

Funmi Okunola: Okay, that's great. We will provide links from any research papers to be mentioned in the program and also your website - both on the website and in the podcast channels where the podcast will be broadcast.

With regards to the educational videos, they sound really interesting. They sound like something that we, as family physicians and the general public, could benefit from. Are they accessible [00:11:00] to us as well?

Ric Arseneau: Absolutely. Yeah, so the one that I usually recommend as a baseline that explains these conditions overall is called “Family and Friends”, and it's had close to ten thousand views already.

Funmi Okunola: Right. That's excellent. So, you've given the family physician approach. Listening to you, I would imagine it's incredibly frustrating as a sufferer to wait five years for diagnosis in pain and distress. How do you advise them to approach maybe speeding up their own diagnosis and access to care? What approach did they take to prepare us ignorant physicians?

Ric Arseneau: Well, usually what I recommend is self education, and the patients can actually download tools from our website to make a diagnosis themselves - fill out the form, bring it to their family doctor and show that they fulfill criteria according to the 2003 Canadian clinical case definition for ME/CFS, or they fulfill the 2016 [00:12:00] definition criteria for FM and bring that to their family doctor.

Other things we have online because a lot of our patients do their own research. But patients with these conditions don't tolerate medications the same way as usual patients do. They're usually much more sensitive, and a lot of medications that we would use normally three times a day, we don't use during the day at all because patients don't tolerate them - we only use them at bedtime. So, for all of the medications that we use in this patient population, we have medication handouts for the patients and for the physicians on our website as well.

Funmi Okunola: That's brilliant and an excellent resource really. I have visited the website; it is very good. So, I'm going to move on now. In a 2023 Center for Diseases and Control Prevention, a CDC report, over 1.3% of Americans suffer from ME/CFS, equal to about 4.3 million people, costing the U. S. economy 17 to 24 billion dollars in lost income and medical bills. [00:13:00] Worldwide, pre-pandemic, as many as 17 to 24 million people were estimated to have ME/CFS. I suspect these figures have doubled since the onset of the SARS-CoV-2 pandemic.

Less than one third of U.S. medical schools have ME/CFS on their curriculum, and I would estimate that a similar proportion of international medical schools are in the same position. It was not on my medical school curriculum, for example. In your opinion, with this amount of suffering and economic cost, why has the medical profession ignored this debilitating disease?

Ric Arseneau: I think a big part of it is because it's invisible. The Canadian government did a census in 2017, and that report's available online, but the Canadian government estimates that just over 5% of the population fulfills criteria for Chronic Fatigue Syndrome, Fibromyalgia, and multiple chemical sensitivities.

So that's one in 20. I [00:14:00] used to do an exercise with my students and somebody was smart enough to actually turn it into a paper. I should have thought of it myself. But what I used to do with students is I used to say at the beginning let's do a free association exercise. Tell me what comes to mind when I say Chronic Fatigue, Fibromyalgia, and invariably they would say psychiatric, psychological, not real, frustrating to take care of, and there's nothing you can do for them. So, when I have students come and work with me, I have four goals. I don't care if they remember the medications, they can always look that up. What I want them to know is it's real.

It's not psychiatric. It's extremely rewarding to take care of, and there's lots that you can do. So those are the four big misconceptions, and that's why many of us were really surprised with Long COVID. We've seen these articles, what is this Long COVID, and what's happening to these patients? We've known about this for decades.

This is just simply Post Viral Syndromes, and we've seen [00:15:00] these Post Viral Syndromes as, physicians love to give new names, there's something called Post Chicken Guinea Syndrome, and Post Ebola Virus Syndrome, and Post Lyme, and what do they present with? Fatigue, pain, sleep disturbance, brain fog, and unexplained symptoms.

So, these are just Post Viral or Post Infectious conditions. There's a big study done in - I always want to make sure I pronounce it right, Dubbo in Australia where an infectious disease clinic prospectively looked at the infections that came to their clinic.

Invariably, regardless of the infection, 10% of the people went on to fulfill criteria for Chronic Fatigue Syndrome at six months regardless of the infection. So, what they're saying is that this is not the infection, it's the host response to the infection that leads to these conditions. That's [00:16:00] why many of us knew that it would be around 10% of patients who would develop a Post Viral Syndrome after COVID, and those numbers keep coming back over and over again around 10% of patients who have COVID. In terms of the cost to society, when Canadian census did their estimate, less than 45% of those patients who were afflicted with these conditions, who filled out the census were working.

It has a huge economic impact both at the personal and at the societal level. So, you would think if it's real, and if it affects a huge number of patients, and if it has a huge impact on the population, so you're probably familiar with the term DALY, DALY - Daily Adjusted Life Years, it’s a way of comparing diseases.

In terms of their impact on society and ME/CFS, Chronic Fatigue [00:17:00Syndrome and AIDS have almost an identical DALY. However, the amount of money that was spent, and if you look at like what the average is based on a DALY, MS gets the right amount of money, a hundred million dollars, AIDS gets more than its share at 5 billion - with a B, and ME/CFS got less than its share at 5 million. This is prior 2015. This is 2013 data. So, three diseases with the same impact on society - one gets 5 million, one gets 100 million and one gets 5 billion with a B.

Funmi Okunola: This is like a massive criminal mess in medicine, and I must say, I would have fallen into the group pre-pandemic of your students when you mentioned the term ME/CFS - I was ignorant.

I knew people were suffering in real, and I never gaslit them. But in the back of my mind, I thought I don't know how to manage this. There's probably a [00:18:00] psychological element. So, I fell into that prejudice. Do you think it's because the majority of sufferers are women, and we’re historically discriminated against in medicine, do you think that's why it's been so neglected?

Ric Arseneau: I think that's a big part of it. In fact, you mentioned the Complex Chronic Diseases Program, which was the first clinic for ME/FM in the country that I helped set up. One of my patients told me that her family doctor told her that the reason they set up that clinic at Women's is because this is a crazy women’s disease.

Ric Arseneau: And so, this is not like from the past. This is like what we hear today and even you may have seen this article that just came out in the last week. The NIH is trying to deal with medical gaslighting, and there have been a lot of doctors, including the Prime Minister of UK, who have gone public to say these are just crazy people. This does not exist.

Funmi Okunola: Yeah. It's one of the reasons why we have this [00:19:00] whole project really to educate people and enlighten them. But it's just so infuriating.

Ric Arseneau: Maybe I can take the lead for a little bit, because one of the messages that I want to get across is understanding that Long COVID, Post COVID and Chronic Fatigue Syndrome because most physicians, most organizations, most governments don't distinguish between Long COVID and Post COVID, and whenever we had clinics in this province, we had Post COVID clinics, not Long COVID clinics.

Post COVID clinic is for anything that happens after COVID, which includes blood clots, lung scarring, Cardiomyopathy, et cetera, et cetera, so most of the focus was going on those conditions. In fact, the reason that I was invited to participate in the ECHO for New Mexico is that they had a Post COVID [00:20:00] clinic and were unaware of the fact that there was a Post Viral Syndrome. They were taking care of patients, but they were excluding the patients who had no evidence of tissue damage.

Whenever you're looking at Post COVID, the Mayo Clinic, I think, has done the best job at suggesting a naming convention. Not accepted yet, and it doesn't matter whether or not you accept the naming convention, it's the concepts that matter - that Post COVID has three categories. The first category is the people who have tissue damage. So, blood clots, Hypercholesterolemia, new Diabetes, new Hypertension, Cardiomyopathy, et cetera, et cetera. The second group are patients who develop psychiatric symptoms after COVID, so depression, anxiety, PTSD, and the third group of patients are those who develop, guess what? pain, fatigue, sleep disturbance, brain fog, and unexplained symptoms with no evidence of tissue damage.

That last group [00:21:00] is what I'm calling Long COVID. That last group is what the Mayo Clinic calls Long COVID. I'll maybe just share my screen for a second and show you a couple of slides from some of my presentations.

One of the things I often get asked is, “Is Long COVID the same as Chronic Fatigue Syndrome?”, and the answer is “no, but partially”. So, the first problem has to do with the fact that whenever you're talking about a syndrome, you're either in or you're out. You either fulfill criteria or you do not.

Remember that when we create syndromes as a medical community, it's for research to help us identify a homogeneous population to do research on. The reality is that that syndrome exists along a spectrum. So, in terms of the Post Viral Syndrome, most physicians are familiar with young adults [00:22:00] who've had Mononucleosis and who go out of commission for six months to a year.

Some of them may develop and fulfill criteria for Chronic Fatigue Syndrome. The vast majority don't, and they bounce back, and so that would be an example of a Post Viral Syndrome that's along the spectrum, but it's milder and the milder the spectrum that you're on, the more likely you are to have a remission.

So, with these conditions, yes, you're Post Viral Syndrome, some patients with Long COVID will fulfill criteria for ME/CFS but remember there'll be a whole bunch who have a milder version who don't fulfill criteria, who are more like the Post Mono young adults. But also remember that ME/CFS is not the only Post Viral Syndrome that we see.

The Post Viral Syndrome can include Fibromyalgia, and again, I talked about how physicians like to give new names. I love reading these articles because [00:23:00] there's an article that came out and it said, “hey, did you realize that 30% of patients who have Long COVID fulfilled criteria for Fibromyalgia! Wow, we should give this a new name. We should call it “FibroCOVID”. The answer is no. We shouldn't do that because we've known forever that Fibromyalgia is a Post Viral Syndrome. This is nothing new, and so, POTS is another common one. For some reason, POTS is particularly common after Long COVID. So that's the Postural Orthostatic Tachycardia.

But there are others. There's Mast Cell Activation Syndrome. Some patients will have IBS for the first time or migraines for the first time. Or patients who already have pre-existing Chronic Fatigue, Fibromyalgia, POTS, of these, if they get COVID my patient will say, “well, do I now have Long COVID and ME”? Well, okay. Yeah. But really what you have is your ME has been exacerbated by another viral infection. So, if we [00:24:00] remember that ME there's the post viral, which is part of the post infectious, but I also mentioned that ME can be a psychological stressor or physical stressor, and so yes, there is an overlap between Long COVID and Chronic Fatigue Syndrome, but it's that post viral or Post COVID Chronic Fatigue Syndrome is simply the Post Viral version, but there's a lot of other causes for Chronic Fatigue Syndrome, and there's a lot of other post viral syndromes, either milder or other families that can co-occur. So, it becomes really confusing when nobody has a common language, and you know people are still fighting.

Is it that ME/CFS is the same as Long COVID? Well, the answer is no, because some patients are going to have a milder version, and some patients are not going to get ME/CFS at all. They're going to get FM or POTS or MCAS. So, I was surprised when we had a whole new name [00:25:00] because my colleagues and I predicted that 10% of people are going to have a Post Viral Syndrome, and why do we need to have Post COVID for? We have lots of viruses that cause lung disease or heart Disease or myocarditis but why did we have to give this one a new name?

Because physicians don't have a problem treating the patients who have lung scarring or blood clots because they know what to do with them. It's the patients who have no physical findings and no laboratory abnormalities that are difficult, but also that represents the biggest part in terms of morbidity and cost to society and the individual.

Funmi Okunola: You've given some clarity here, but it is really confusing when you're looking through the research papers because there is no agreed definition. There's lots of contradictory evidence because there isn't an agreed definition as to what's going on.

Ric Arseneau: Well, when I do my presentation to physicians, [00:26:00] I actually take them to Medline, and so most physicians are familiar with doing Medline searches. We know that if we type in Atherosclerotic Heart Disease that it'll map to Coronary Artery Disease.

We have a mapping system and those are called mesh sub-headings. If I type in Long COVID in Medline, it actually maps to Post COVID, so that the medical literature and the way that it organizes articles does not make a distinction between Long COVID and Post COVID, and that's why my patients often come to me and they'll say, “Oh, my God, do I have brain blood clots?” If you read the paper, it'll say, you know, that these patients were Post COVID slash Long COVID. So, in reality, we have no clue, but the more likely thing is that these are patients who had Post COVID with tissue damage. But the reality is we really don't know, and we're not going to know until the medical community [00:27:00] decides on separating out the various categories because it's just super confusing to governments, it's confusing to patients, and it's confusing to physicians, and that's why I teach my patients when you read about this is try to determine whether they're talking about Post COVID patients with tissue damage, or Long COVID patients without tissue damage, who have pain, fatigue, sleep disturbance, brain fog, and unexplained symptoms.

Funmi Okunola: The last question I'm going to ask you is what do you believe is required in our existing healthcare system to enable effective management of ME/CFS?

Ric Arseneau: I think that we need to mobilize the troops right now in this Province. Although the government says we do have Post COVID clinics, we don't, because you cannot see a physician in them. That, apart from seeing me and Dr. McKay at my clinic, or being referred to the Complex Chronic Diseases Program, which takes three years, that's the only access to care that patients with [00:28:00] Long COVID have right now.

The problem is we can't expect a small group or a handful of individuals to take care of all the thousands of patients in the Province. Right now, we have 2,500 active patients and we have 600 patients on our wait list, and I suspect that a year from now we'll have 3,500 patients on our active list.

So, we're having to come up with really creative ways to service the population. We're doing things like group medication visits. Rather than seeing patients one on one, I'll see as many as 60 patients at the same time to start them on low dose naltrexone, and we need to have a concerted, co-ordinated effort, acknowledging that this is real and have a plan. Right now, there's no plan, like the government doesn't even think that there's a problem with Long COVID because they have these Post COVID clinics that [00:29:00] have physiotherapists and occupational therapists helping patients.

Funmi Okunola: Okay. From my understanding, all the Long COVID clinics were closed in B.C. last year.

Ric Arseneau: If you watch the Minister of Health and you talk to the person who was in charge of those things, they're not closed because there's still OTs and PTs that are running these clinics. So, they're closed from a perspective of physicians. Just a couple of months ago, the Minister of Health went on the news to say that we had more than adequate access to care for our Post COVID patients because these clinics were still open, not addressing the issue that there's no physicians, and that most patients can't get any medical care except for advice on how to pace from these clinics.

So, until our government recognizes that there's a problem, and that physicians as a group coordinate how we're going to take care of these patients, [00:30:00] it's going to end up being people like me who are doing it. I'm trying to help the CCP clinic, but no coordinated effort for the profits.

Funmi Okunola: Yeah, it's such a shame, and I think that's the International situation too. So, the hope is that with the work you're doing and working with us here today, we can sound the bell really, and educate physicians and get the medical profession moving. I want to thank you, Professor Arseneau for today's interview, and all that you do for the people in B.C., Canada and the world who are struggling with complex chronic disease. Thank you so much.

Ric Arseneau: Thank you very much for having me. Pleasure.

Funmi Okunola: Please join us for next week's Episode of Long Covid - The Answers.

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