Last month, ME/FM Society of BC volunteer, Howard Searle, made his way to Vancouver to meet with Dr. Luis Nacul, Medical Director of BC Women’s Hospital Complex Chronic Diseases Program (CCDP), at his apartment. Howard was there to interview Dr. Nacul for an article for our Society’s 2019 December fundraiser.
Howard was a registered ER nurse in his life before ME. Like all of us, he was impatiently waiting for the new Medical Director to arrive in Vancouver and take up the leadership of the CCDP. But unlike most of us, Howard has had the opportunity to meet Dr. Nacul one-on-one and ask him questions that mattered to him. The end result is an engaging and informative two-part article.
Part 1 focuses on the CCDP and clinical aspects of ME and fibromyalgia
Part 2 focuses on research. Read here.
Interview with Dr. Luis Nacul, Part 1 :
Clinical issues & CCDP
by Howard Searle
Howard:
You were appointed as the new Medical Director of the BC Women’s Hospital’s Complex and Chronic Diseases Program (CCDP) in April this year. Is the CCDP a full-time position for you, and how much of your time will be spent in London in your continuing work with the UK Biobank and the revision of the UK’s NICE guidelines for ME?
Dr Nacul:
Eighty percent of my time will be as the Medical Director of the CCDP here in Vancouver and twenty percent of the time I will be in London with my other work where I have for many years been leading a group of researchers in the CureME Team at the London School of Hygiene and Tropical Medicine. Of course my work there will be less than it used to be, but I feel that I can still be useful and I want to be part of that. It’s a very important and exciting time in the UK as it is here in Canada and there is more visibility and recognition for complex and chronic diseases and there are lots of things to do. The internet has made the world smaller and we can easily communicate online. This week for example we had a video conference with people in the UK, the US, here and in Tanzania, and as long as we adjusted the meeting time so that nobody had to get up in the middle of the night, it worked out just fine. This allows us to work broadly, internationally, wherever we are.
Howard:
The stated mandate for the CCDP is the proper testing, diagnosis, treatment and research to support ME patients. What is your vision for the program going forward as its Medical Director?
Dr Nacul:
One of the things we’ve just been talking about is research, and I’d like to see the CCDP very active in research and contributing to refining the evidence for ME at an international level. This is one aspect, finding evidence of biomarkers, evidence for diagnostic tests, and evidence for treatments. If we can do this, then it will fulfill one of our main objectives behind our mandate.
There are three things that I would like to see us do better; one is research, another is education. You just mentioned that your own GP did not understand ME and did not want to learn anything about it when you brought him the Canadian Consensus Guidelines document to read. Obviously, we need to address this by better educating health professionals in primary care, including physicians. This is another part of our mandate.
And of course, I want the services that are provided to be of high standard. If we have better evidence, we will be able to provide better treatments. But even without well-established evidence, you can have services which are useful and supportive for the patient population. There are many diseases out there which are incurable, but still you can have services which support symptomatic treatment. We wait for better evidence, not passively but actively by doing our research and by being part of international networks.
As you know we are part of the Interdisciplinary Canadian Collaborative Myalgic Encephalomyelitis Research Network (I Can C ME Network) for which I am one of the principal investigators along with Dr Alain Moreau in Montreal, who last August received a 1.4 million dollar federal grant for research. So, as we wait, we can see what comes up in terms of new biomarkers and new treatments and then will be in a position to change the protocols accordingly.
Howard:
Have we found any really reliable biomarkers for ME so far?
Dr Nacul:
No. Often you see small studies which have found something promising, and then it appears, “oh here it is, the cause of ME”, or “that’s the biomarker”, and people go and patent something, and I think this is a risky business that has not served patients well. Patients with ME want to get well, they want something tangible, and if researchers tell them “we found something”, then patients will go after it and this will not necessarily be a good idea. Research is something that needs validation and it needs high quality methods to start with.
Howard:
Do the CCDP’s clinical protocols need updating?
Dr Nacul:
As new clinical evidence evolves, the protocols will require updating. So we always have in mind that any new evidence that comes up, may require updating the procedures. The protocols we have at the CCDP are mainly for symptomatic treatment, but will be updated as more effective treatments become evident.
Howard:
Do you think that the “central sensitization theory” adequately accounts for the pathologic mechanism that is causing ME, or do you have a different view as to its causation?
Dr Nacul:
I think there is a place for the central sensitization theory, but I don’t think this is the main thing happening in ME. As we have discussed, I think this is primarily a neuro-immune disease. I think there is some sort of pathology in the central nervous system, and as a result, you have problems with the autonomic nervous system which is integral with it, but you also have some neuro-endocrine abnormalities, and some metabolic abnormalities. There is a lot going on in ME that we are finding more and more about, that I think will eventually explain the vast majority of the symptoms.
If you have an injury somewhere, say in your wrist, say you have some inflammation for example, you think about it quite a bit and are very aware of it, and if someone touches it, you jump. On the other hand, if there is inflammation in the brain, the brain may not work quite as well and may be slower, your memory may be disrupted, your ability to concentrate will not be as great, and your sleep patterns may be disturbed. So you have something going wrong in your brain and your neurochemicals may be all over the place.
I think it is a similar thing… your brain senses stimuli that come from the periphery. Very often people with ME have a sensitivity to light or to noise. These are all processed by the brain. So if you have some sort of abnormality in the brain, the level of noise that you would normally be OK with may become very irritating, in a similar way to someone touching your injured wrist will be very painful, but not if the if the wrist is normal. I think there is an amplification in the brain for a number of stimuli. I think there is a change in the signalling format.
I don’t like the term “central sensitization” as it is an over-simplification and I think this is just one aspect of it. However in fibromyalgia, there is more evidence that central sensitization is the case, and this is because the physiology of pain has been studied in much more detail than fatigue and other symptoms that are more prominent in people with ME.
Howard:
How are ME and fibromyalgia related?
Dr Nacul:
I think that there is a big overlap in symptoms of about 60 to 70 percent, but they are different diseases. Think about atherosclerosis, in which fatty plaques accumulate in your blood vessels. Then think about a stroke or a heart attack which are both caused by these deposits. Are they the same disease?
Howard:
No, but there is a relationship in their causation.
Dr Nacul:
OK, so thanks for answering my question. I think there may be some common pathophysiology, and this is well known in medicine. People who have heart disease more often also have diabetes and other problems that are related to cardiovascular and metabolic systems. There is a cluster of problems in people. ME and FM are different, but there is a clustering and that’s why they coincide very often.
Howard:
Does the diagnosis of fibromyalgia require the presence of pressure point sensitivity in your body?
Dr Nacul:
No, not any more… do you have any views on that?
Howard:
I was referred to a rheumatologist several years ago who was thought to be knowledgeable about ME. It turned out that she was not, but she was quite knowledgeable about FM, so after describing my symptoms, she examined me and tried very hard all over my body to demonstrate that I had pressure points. However, she was unable to find that I had any particular discomfort in response to her manipulations, after which she confidently declared that I “definitely do not have fibromyalgia”!
Dr Nacul:
The latest criteria, which we use at the CCDP, does not require the presence of pressure points. There are several reasons for this, but one reason is when the concept of pressure points was created, there was a specific amount of pressure at very specific points that were demonstrated to be different in people with fibromyalgia from normal controls. But in clinical practice, this is difficult to reproduce, and most clinicians will simply use their fingers. How can you standardize my finger, your finger or somebody else’s finger pressure? You can’t and this is enough of a reason not to rely on the presence of pressure points for a diagnosis.
Howard:
There are very many things that we don’t understand about ME. Is there anything we really do understand well about it?
Dr Nacul:
From a clinical point of view, when you see a common pattern in so many cases of ME, they obviously form part of something discrete. As a clinician, my answer is “yes”. As a researcher, I think there is lots of evidence which is mounting to prove the point.
However, I think what has been restricting researchers, apart from the lack of adequate funding, is that everyone has been putting things into one big box, and there are many sub-types. Research methods are very good at picking up what is common, but you need different methods to stratify, and I think that is the direction that research should go.
There are lots of interesting things out there. For example, most people in the beginning with ME have pro-inflammatory markers in the immune system, and this is clear. The pattern of symptoms that people with ME present with is quite characteristic. There are variations and there is some heterogeneity, but mostly they are quite characteristic of people with ME.
There are clinical criteria for ME which are not perfect, but they helped a lot. We know that it can be a severely disabling disease in about 25 percent of cases. It’s disabling in the sense that people will lose the capacity to function at the level that they used to, and to differing degrees. So I think this is very objective. There is enough research evidence which is objective in terms of that.
Think about migraine headaches. Do you believe they exist?
Howard:
Yes, I know they happen, as I’ve dealt with a number of such cases in the Emergency Department. I think there are a number of different causes, some of which are physiological, such as spasms in blood vessels in the brain, but there may be various triggers, some of which may be psychological in origin.
Dr Nacul:
But can you do a blood test that shows that the patient has a migraine?
Howard:
No, you can’t. Such a test doesn’t exist. It’s the same with pain. You can’t measure that objectively either.
Dr Nacul:
Do you know what Freud used to say about migraines? He said that typically they were about women’s hysteria.
Howard:
Fortunately, we know today that Freud was wrong about a lot of things, this being but one glaring example.
Dr Nacul:
If you know someone who suffers from migraines, you believe in them. They’re real.
But when you think about the history of medicine over the last 200 years, there are many things in the past that were believed, but which today are laughable. However, what we believe today about ME may in the future be looked back upon as ridiculous, because it will be much clearer in the future. Migraines are one example. MS is another: at some time in the past it was regarded as a “hysterical paralysis”, until it was demonstrated that it was real. If someone is ill, it is real. Full Stop.
I know quite a few doctors who know about ME and we can talk about ME in a unified language. But many do not understand it and so there is still a stigma about ME. As long as doctors will not take this illness seriously, the stigma will not be resolved. The current paradigm in medicine is that to prove something, you need to show a biomarker, and that’s why I think it’s so important to find one. But really, we don’t need a biomarker. We don’t have a biomarker for migraines, and yet we have legitimized it as an illness. So this should also be possible for ME.
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