Webinar Transcript: A Conversation about Myalgic Encephalomyelitis

Transcript

Webinar: March 9, 2021

Introduction

Professor Karim Khan: Welcome! I will be acting as a co-host and lead for this webinar with facilitator Sabrina Poirier and guest speaker Dr. Nina Muirhead.

As a bit of background, I was aware of ME as a condition well before I became the Scientific Director for CIHR-IMHA in 2017. Because I had been a musculoskeletal doctor in a clinic where we saw challenging patients - "challenging patients" meant as a medical term for where people with chronic problems were referred - people had often seen 5 or 6 doctors before they were referred to our clinic. I had seen patients with mitochondrial myopathies, unexplained fatigue and people with the epitome of symptoms of what we would now diagnose as ME, but we weren't using that term back in the early 2000's. So when I became the Scientific Director, addressing the question of "is ME real or not?", was not an issue. I was able to say to my colleagues who were skeptical, that we have to move on from the question of if it's real. It is real. Now the challenge is to find the diagnostic (biomarker) and validate patient experiences as an important first step. I said this at the launch of the ICanCME Network in Montreal in 2019. We need to be humble as doctors and say that we don't have all the solutions, we don't know what is causing your pain, and we don't have great treatments, but we are moving on and hopefully will be able to move on from that. We can't be hubristic and say 'this is your problem' - it is not the patient's imaginary problem. This is real.

And from there I will hand it over to Sabrina.

Sabrina Poirier: Hello everyone and welcome. Thank you very much Karim and to the IMHA Team for collaborating on this with Nina and I. Our community is suffering from a very serious and debilitating multi-system illness and we appreciate IMHA using its platform to help raise our voices and give Dr. Nina Muirhead an opportunity to share important information and insights with us today.

I'd like to introduce Dr. Muirhead. She is my friend and collaborator on many different initiatives and we have been working together closely this year. She is a surgeon, a researcher, a medical educator, an Oxford graduate and an individual living with ME. She is also a valued member of our ICanCME working group on trainee development and medical education. So we are thrilled to have her here today. She brings great knowledge and insight into every conversation.

Before I pass it over to Nina I'd like to give a quick note on terminology, because it tends to come up when we do ME webinars. The World Health Organization recognized ME over 50 years ago as a neurological illness. We will be mostly using the terminology "ME" during this webinar, but in research many of you might be aware that ME/CFS is a common term. Sometimes this illness is known by the name 'Chronic Fatigue Syndrome' or CFS, so if you hear that or see it on a slide that is because we are quoting research. But we will make every effort to use the terminology 'ME' going forward. With that I will pass it to Nina. Thank you so much for being with us today.

Dr. Nina Muirhead: Thank you so much for the introduction Sabrina, thank you Karim for the opportunity and thank you to CIHR and IMHA. Today, I will go through the diagnosis and management of ME; the connection between ME and Long COVID; and current and upcoming research.

What is ME?

Myalgic encephalomyelitis was formerly known as chronic fatigue syndrome and is still often referred to as 'ME/CFS' in research articles. It is a devastating, chronic, complex, multi-system disease. The name ME stands for muscle pain (myalgic) and inflammation of the brain and spinal cord (encephalomyelitis). There are approximately 600,000 sufferers in Canada and a female to male ratio of 4:1 - similar to Multiple Sclerosis. It affects both children and adults, and there are two peaks of instances: one in adolescence and one in people in their 30's - 50's, with 80% being triggered by a viral infection. 40% have a first degree relative with an autoimmune condition. Interestingly, it crosses all ethnic and cultural backgrounds and may be more common in ethnic minorities. There are a few papers showing this, but more research is needed. The prognosis for ME is unknown. Currently only approximately 5% recover. The figures are slightly better in children and adolescents.

I'm very excited by the ICanCME initiative. I am fortunate to have met Dr. Alain Moreau in 2018 and it is fantastic to see this unique collaboration of researchers, clinicians and patient partners all coming together to collaborate. We are in a unique position with this illness because patients really do have a significant understanding of this illness and can often bring more to the table than with any other disease areas. So, it is very important to hear the patient voice throughout the journey with this disease.

I have been fortunate to see some of the wonderful research that is going on in Canada and I'm hoping there will be many more upcoming webinars, especially with the trainee development and medical education working group from ICanCME. I'm also helping push forward the education initiatives we are doing in the UK, especially with the change in the UK guidelines put forward by NICE, which is the UK National Institute for Health and Care Excellence. I'm doing quite a lot in research and the education side of research. I'm the Chair of the UK ME/CFS Research Collaborative and I’m also working with Sabrina on the CME working group for the Centre for Solutions in the US. I'm in contact with many of the professional members of the EUROMENE group in Europe and with educational leaders in Australia and New Zealand. So, I have quite a large network of friends and collaborators who are all interested in improving education on the topic of ME.

My background is completely different. I am a skin cancer surgeon. I trained at Oxford, and I love teaching and am a university tutor for the post-graduate diploma in dermatology. And then I got sick. Having never believed in or understood the disease particularly well, I had come across a few fibromyalgia patients during my orthopaedic surgery. I didn't really understand ME and was of the belief that maybe patients became a bit disheartened, de-conditioned or demotivated. So, I went into this illness having had the infectious mononucleosis Epstein Barr virus thinking 'I'm not going to take to my bed'. And then I got very seriously, very significantly unwell with multi-system symptoms. I had to stop work in March, despite trying to exercise and push my way through it. I ended up bed-bound for 6 to 9 months followed by 18 months in a wheelchair. I still have a disabled badge and am only able to work about 1/3 of what I could do before I got sick. I have to have a lot of help and a big network of support to enable me to do that.

I was very active before I got sick—skiing, cycling, doing my diploma of dermatology and there is wonderful countryside around where I live where I would usually do a 10km run. All of that came abruptly to an end when I got sick.

About Nina Muirhead

I was 36 at the time, started with high fever sore throat feeling flu like. But then I got increasing headaches facial pain, vomiting, sinusitis muscle twitching diarrhea flu like symptoms difficulty, even climbing up the stairs on my hands and knees dragging myself up to the top of the stairs, feeling out of breath and short of breath. I would get chest pains, pains across my back. A typical chest pains abdominal pains cramps diarrhea. I was hypersensitive to smells chemicals, light, and noise. I had tinnitus dry eyes at night, dizziness, stumbling—anyone would think I was a hypochondriac with this list—walking into doorways numb hands and fingertips. I needed to sit or lie down, even in public places I would just sit on the high street because I just couldn't stand up for any longer. I had word finding difficulty, and problems with my short-term memory, I kept burning things, living the bath running, it was actually starting to get very dangerous. And I also had a new skin rash.

I saw 13 different doctors before I had my diagnosis of ME. And within five minutes of walking into my current GPS office, she said I know exactly what you've got—you've got ME. It is quite serious. I know two other patients who are quite severe. The fact that she took me seriously and treated me with respect and compassion and believed what I was saying was overwhelmingly reassuring for me, even though it was a devastating diagnosis to get. That belief that I had something, and that it was real was really important to me.

I had quite a lot of different investigations. My blood results were generally normal apart from the Epstein Barr virus. And I did also have a new diagnosis of postural tachycardia, my heart rate went up to 140 just on standing after about nine minutes. I was started on antiviral which was a bit of luck. I actually got the real flu within a year of getting the ME diagnosis and was quite unwell with it. I was put on an antiviral for the flu and my ME got so much better that I persuaded the neurologist that I was seeing to keep me on it. I've been on it for 22 months and it has helped enormously.

I also had B12 injections, bed rest for about six months and good nutrition, but often you're not well enough to cook for yourself. I was fortunate that my parents took me back to their house, nursed me and prepared all my food. So, I had a large network and a huge amount of support. And I'm very, very grateful that I am lucky enough to have had that, and to be able to be here today talking to you because without that I wouldn't be as well as I am - not that the support made me better- it's just that I'm one of the lucky ones and my disease isn't as severe as some.

So, having had that life experience of this horrendous disease, I realized that doctors don't really understand it at all. In general, most hospital doctors do not know what ME is. This is a serious disease with fluctuating multi-system symptoms which can cause major impact on function and quality of life. It is not well understood or diagnosed by the profession. Exercise and cognitive exertion exacerbate the disease, even concentrating to try and read something would exhaust me for a day. Severity and relapses are not caused by thoughts and feelings.

And we see that in other disease. Many of our psoriasis patients with a skin condition have a flare up with their skin, and they've done nothing wrong to cause that flare up. It's the same with ME, we can be doing everything we would normally do in a week, and suddenly it will hit us, out of the blue, and we've done nothing to cause it. It's not for feelings and behavior that control this disease, it has a mind of its own. And the best we can do is stay within our means in terms of energy.

What makes ME difficult to diagnose?

There are no reliable biomarkers. There are no consistent clinical signs. There are signs—a lot of patients have livedo, just like a vascular pattern and pooling of blood in the feet, they often look pale. They sometimes have pupillary defects, Babinski signs — the neuro foot reflexes is up going, but it's not consistent and you can't make a diagnosis based on it.

It's a heterogeneous group of patients so, some will be here with a virus, others will not know what caused it or triggered it. It might have been either an asymptomatic infection or it could have just developed out of the blue, like other autoimmune or chronic conditions that can arise, for no reason whatsoever.

Patients present with a long list of overlapping symptoms they will often just attend with one complaint of pain or one complaint of feeling unwell. And it doesn't really give the whole picture of how debilitated they are in their daily life. Different body systems are affected to different degrees in different people, some will have more gut symptoms, some will have more heart symptoms, and so on.

Diagnostic Criteria

There are many different definitions of diagnostic criteria. The ones that I find easy to teach are the Canadian Consensus Criteria (CCC) and the Institute of Medicine (IOM), but there are many other different diagnostic criteria, and there are several papers which cover those. I'm going to try and keep it simple today because we don't have much time. I'm just going to go through this CCC which originated in 2003 and it has been updated. This slide really nicely summarizes them quite briefly, the cardinal feature is post-exertional malaise (PEM).

And when I first read about that, I thought the person had to do proper exercise like a marathon or a sprint to trigger that. When in fact, it can be something as simple as brushing your teeth or having to concentrate on a conversation with a friend for a little bit longer than you would normally. And that will be enough to trigger post-exertional malaise. Sleep dysfunction, which can be difficulty getting to sleep, feeling exhausted when you wake up, and also having lots of dreams as well. Cognitive and neurological symptoms—which can be sensory, or to do with thinking, planning and concentrating. Orthostatic intolerance, or irritable bowel or heart problems—I had all three. Body temperature changes—a lot of people find difficulty keeping their body temperature constant—so, very hot and very cold can really take a lot of energy to regulate body temperature. A lot of people have high fevers and a lot of Long COVID patients are explaining that they're getting these types of chronic high fevers. I presented with high fevers, appetite changes, or even changing being able to eat at different times of day can occur. Immune system symptoms, fatigue, muscle pain, joint pain, deep bone pain and headaches are all part of that. So, this really does cover quite a lot of the different symptoms.

The other one that's nice and easy to teach is the IOM, which is more recent. They just go through the four categories:

  • Do you have impaired function? It must be moderate to severe and frequent—more than half of the time;
  • Post-exertional malaise, which we've already mentioned;
  • Unrefreshing sleep;
  • Orthostatic intolerance or cognitive impairment.

What we're finding is that in clinic, people haven't been looking for orthostatic intolerance, but when they start to look they're picking it up in over 80% of patients with ME.

What to ask the patient?

Patients won't walk in and say I've got post-exertional malaise. They will walk in and say, “I am not well”, “I'm having to change what I do”, “I can't work all the time”, “I'm having to take leave to try and get my work done”.

They will have every other explanation, but they won't necessarily be able to tell you they've got post-exertional malaise. The questions that might draw it out are:

What fraction of your pre-illness capacity are you functioning at?

It may be different for mental and physical. I'd say I'm at about a third of my mental capacity but maybe only a 10th of my physical capacity.

What could you do before being ill versus now?

How many hours a day or a week can you productively do useful things?

This is quite telling. When I was very ill, I probably had one productive hour a week. That went up to eight. With the antiviral it went up to 30 and it's still around 30. But it really does help understand how the person is functioning week by week.

How many hours a day are your feet on the floor?

This is really interesting as well. For most people, it's 14 to 16. With ME patients, it's often under 10, and sometimes as little as half an hour.

What happens when you engage on previously tolerated levels of activity, both physical or mental?

 Sometimes it's few days afterwards when people feel exhausted or ill. They can feel headachy or like they're coming down with another sore throat or flu.

Do you avoid change in certain activities because of what you do after them?

They may be subconsciously avoiding things that will trigger post-exertional malaise without even realizing it.

What can or can't you manage on a good or bad day?

How long does it take to experience symptoms and to recover after physical or mental effort?

It doesn't really matter what the answer is. It's more of making a note of what their personal experience is of this disease.

Patient Descriptions

I did some qualitative research led by a medical student who interviewed some patients about what they went to their GP with, and none of them said “fatigue”. Some had pain, others said they felt flu like. I've put some of the quotes up here because I think it's really interesting.

One said, “I was too ill to continue, then I continued working and functioning as normal”.

Another, “I got flu then went back to work, then started getting pins and needles and other strange symptoms”.

“I couldn't go to work. It was like getting the flu”.

“Things can sometimes hit me for days or weeks at a time”.

“I was working, but I was starting to feel really ill. I was pushing through and then one day I decided to drop back home from school. The next day, I totally collapsed and felt I was dying”.

“I thought I was slipping away, I felt so ill”.

“You feel ashamed that you can't live your life the way you want to”.

“My neck would get really stiff, tremendous headache and a fever”.

Or a description of “feeling horrendous and then saying the next time it happened I thought, Oh well, I didn't die last time”.

“I kept going to the GP and saying, I'm not well, I'm not well”.

“Well, I had pneumonia, and it wasn't getting better. And I wasn't getting better…”

Patient Experience

So, these patients were expecting to get better. They're expecting to be well they're expecting to be able to get work.

And yet it's not happening, and they're wondering why. Communication can be difficult for the patient, particularly if they're having problems with short-term memory and find they often have to write things down. If you're finding that you're having a consultation with a patient and they’re not able to explain what's wrong with them, then arrange another appointment for when they have time—when you have time, and ask them to write everything down. Also, maybe suggest they bring another adult with them, because often whatever you say to them, they might not necessarily be able to remember because they may have memory problems, brain fog, cognitive and processing issues. It can really cause patients quite a lot of distress as they try to get the message across about how ill they feel. Especially when they've been minimizing it in their own mind before presenting to the doctor.

Often patients have to travel a long way, especially if they're going to see a specialist. And that can exhaust them for weeks or even months—waiting in the waiting room, and even getting up at a different time for the appointment can put tremendous stress on a patient who has very little energy capacity. The symptoms they can experience can be enough to put them off returning to a medical encounter. So routine blood tests and tests for orthostatic intolerance should be started as part of the basic workup. The tilt table test (TTT) is not offered in many places across Canada, and it's not always accessible in the UK either so within the clinic itself, the NASA 10 minutes Lean Test is a perfect way of picking up orthostatic intolerance. You get the patient to lean against a wall, so they're not using their calf compressors and also so that they don't faint or collapse on you. You take repeated heart rate and blood pressure, and make a note of them. You can also diagnose postural tachycardia using NASA 10 minutes Lean Test.

If there are any focal neurological signs, it's really important to rule out anything else going on like multiple sclerosis or space occupying lesion. A lot of practitioners wait to rule out serious things like MS or lymphomas and things as a cause of tiredness, but I think it's really important to say to the patient, ”I suspect you may have ME”. Particularly if they're coming forward with this post exertional malaise, because they need to go back and tell their employer and their family that this is one of the things that the doctor is thinking about. They can prepare themselves for how they're going to manage it and also so they don't push themselves, thinking if they could just pull themselves together they wouldn't be sick. It's important to have regular checkups, to ensure that there's nothing new emerging like an immune or thyroid problem that can be treated.

This handout from the U.S. ME/CFS Clinician Coalition includes many—20, 30, 40 different differential diagnoses. These can be differential, as well as associated with or diagnosed at the same time as ME. I have POTS, fibromyalgia and ME, and there are many patients with several of these. Some of the sub-diagnoses are treatable and it's really important that they are treated, rather than everything being put down to ME. Other symptoms, such as pain, sleep disturbance and orthostatic intolerance have treatments as well.

Take a good history, make a diagnosis, manage the symptoms. With medications, people can be really hypersensitive. A lot of patients who used to be able to drink and tolerate alcohol, now can't. It's very similar with medications as well, they become very hypersensitive. Start with really low measurements, start low and go slow. It may be that the first few weeks they’re on the medication they're still recovering from the consultation where you prescribed the medication and they're worse. It's not necessarily the medication, it could be post-exertional malaise from attending. So, wait for it to kick in, see if it's working before adding in or changing anything.

Consider the severity and also if they may need someone else with them to help with communication, and also physically getting to the appointment. Arrange suitable regular appropriate follow up, and also help with disability paperwork. It took me three weeks to fill in mine, and it was exhausting. I nearly missed the deadline, and the whole experience is horrendous because you have to admit to yourself how sick you really are. Also advise the person to rest and pace.

NICE Draft Guidance - UK

In the UK we've got some exciting new guidelines coming up, and the draft has given us a clue that exercise will be removed from the guidelines. All of these points on the slide, one after the other: “do not offer therapy based on exercise; “do not offer generalized physical activity or exercise programs”; “do not offer specialized graded exercise therapy”. And importantly, some of the more alternative approaches such as neurolinguistic programming, the Lightning Process—there's very little evidence—and they are really not recommended for this disease. Until we know more, we need to do much better, more scientific, rigorous research to know what the right treatments are.

Why is Exercise Harmful for ME?

Moving on to research a little bit here: why is exercise harmful? I always thought exercise was good and I wanted to exercise my way out of this. But it turns out that it does make you worse and it makes you worse at a cellular level. So, your ability to have a workload and to use oxygen with your cells is worse the day after exercise. In every other patient, with pretty much every other disease and even those who are de-conditioned, they can exercise and they get better physiology the day after exercise. ME patients get worse. There's also evidence of neuroinflammation in the brain, and increased inflammatory cytokines. Exercise can often exacerbate cognitive symptoms and that can be for up to a week afterwards.

We're starting to look in the literature at objective parameters such as workload, vO2 max, the aerobic and the anaerobic threshold, which shows that our bodies are not coping as well the next day after exercise, or with that exercise when we repeat it. This disease is not secondary to the conditioning, and reconditioning is not a treatment. This is a huge paradigm shift in the whole understanding of the illness. It’s summarized quite nicely with this research published a year and a half ago which shows that your cellular fitness, your lactate levels, and your fitness deteriorates when you've got ME when you repeat the exercise 24 hours later.

The other research that's happening, that is very exciting, is here in Canada. I had a call last week with Dr. Alain Moreau, who spent some time showing us what else is being done in Canada. He's looking at the whole system, rather than doing research just on the specific areas he specialized in. It's picking up on “What is post-exertional malaise” and asking, “Can we model it?” Can we do it without making the person worse? Using questionnaires, like the DePaul Questionnaire, that focus on the actual level of post-exertional malaise and the symptoms the person is experiencing. Looking at parameters like heart rate, and then picking up special signalling cytokines using brain oximetry which is showing that brain oxygen is usually less in ME/CFS patients, and also micro RNAs. They did publish that 11 different micro RNAs specifically associated with things like connective tissue, neurology, and mitochondria are all being affected, and they're significantly different in ME patients compared to controls.

There is another study by a different group not in Canada, showing what's going on in the world around us. These patients were shown to have different levels of severity so they tested 82 women: 31 mild, 31 moderate and 20 severe.

They had them do exercise on the first and the second day. This was very low level, low grade exercise but it was enough to show that the second time they did it on the second day, their vO2— their ability for the cell to use oxygen and their workload, both decreased. And it was significant. Not only in that the patients who said they were severely unwell and less able to do the exercise, were truly more unwell and unable to do exercise. So, it's good numbers. It really does show that if the patient says they are not well, then they are really not well. The people who are severe are not acting like they're more severe than the people who are mild, they are actually more severe.

There are a few of the same authors in this next group. They looked at 100 severe patients. And they made a note that even just on a sitting test, 86% had orthostatic intolerance and 90% had reduced cerebral blood flow. So, there's less oxygen getting to the brain. That was significantly different to healthy controls. I think it's really important that we make the point that patients are lying down because they feel that ill. If you went to the COVID wards or A&E (emergency) when it was bad, everybody was lying down in the corridors—nobody was standing up. These people aren't ill because they're lying down, they are lying down because they're ill.

Neuroinflammation

There is very good evidence of widespread increasing lactate. We can all increase lactate in our muscles by cycling or doing a little bit of exercise. But no one can really think so hard that they push the lactate levels up in their brain, unless they have some other spatial lesion, or a tumor or something. However, in ME patients, there is widespread increased lactate up to four times the normal amount. This is a very significant finding and it does show that there is neuroinflammation.

Quality of Life of ME Patients

This slide shows the quality of life of ME patients, compared to other significant chronic diseases like chronic renal failure, rheumatoid arthritis (which has a lot of pain), and diabetes. These are severe, significant, recognized life changing illnesses. You can see the quality of life for ME is the lowest score of all. This is published now quite widely in the literature. There are probably a dozen or more papers, showing that quality of life is reduced in ME/CFS.

If you look at the data more closely, particularly in comparison with other neurological diseases like MS, it's the physical health, that is most impaired for ME patients, not their mental health. They are perhaps a little bit more depressed or anxious, but not in comparison to other people with other diseases. They are physically more sick.

This next slide is research that I've been involved with. This is looking for the first time at the impact on family members’ quality of life. Now, I do recognize that a lot of patients are too sick to even meet people or have a family, and some have lost family members. There are many people who are isolated and alone with this horrendous disease. That really needs recognizing.

For those whose family have stuck around, there is a huge impact. And here the higher the bar, the greater the impact. And we showed in publication just in January this year, that ME has a major impact on the lives of both patients and their family members. It's almost double to what we were observing in other papers on cancer, and 25 other chronic diseases. This is using the same validated questionnaire: The Family Reported Outcome Measures (FROM-16). We're now doing an international study on the same subject, where we're looking at the family impact on patients across the world and on their family members.

Medications for ME

There are medications to try. For sleep disruption, a lot of people have already been doing all the best things they can: a nice dark room, quiet, removing screens and so on for good sleep management. But melatonin and low dose amitriptyline can help some people.

I think it's always wise to try things and work with the patient, making a note of what they do get on with and what they don't get on with, so they aren't then re-offered the same thing when they have a flare up. Keep working with the patient on what suits them.

Fludrocortisone, Ivabradine, midodrine, and other beta blockers are very good for orthostatic intolerance and also tachycardia.

For pain, you really need to be cutting back on what you're doing because obviously you're getting a lot of pain. If you’re just doing nothing, then there are options in treating with low dose Naltrexone, Tylenol and NSAIDs. Patients who are really desperate can have opiates, but there can be break through pain from withdrawal, which I don't think is good.

In general: vitamin supplementation such as B12 and vitamin D, a good healthy diet for gut microbiome and adding antihistamines as well, if there's a mast cell activation (MCAS) crossover.

Long COVID and ME

This is the million-dollar question. When the pandemic started, a lot of ME patients said we were going to get so many more ME patients, from Long COVID. And we are seeing it. There are obviously a lot of other complex organ problems, and there are patients with post-COVID depression as well. It's really, really important now more than ever to be able to differentiate between these patients and determine what is really going on.

ME clinicians who've been seeing ME patients for a long time can see similarities in the Long COVID patients coming in. And then interestingly they are seeing one or two that have differences, and they can see it straight away because they are used to seeing this disease now. It's the general medical profession, who was still catching up with even knowing what/how to recognize ME and differentiating it from depression and anxiety. That is the real issue here.

We do expect a subset of Long COVID patients to develop post-viral ME. And in Canada, this may be tens of thousands of people, unfortunately, just on the basis of how many people have tested positive and the number of deaths.

The study in this diagram, was a seven-month review of Long COVID patients from the Body Politic COVID support group. We got permission to share this from Hannah Davis.

They show that, as you would expect with a very severe illness, a lot of people have a protracted, prolonged recovery (up to three months), and they're just slowly getting better. But what's really interesting here in this diagram is this purple band of patients who are not only not getting better, but they're starting to increase their number of symptoms. Fatigue and post-exertional malaise are featured in those. This is a really interesting patient cohort to watch over the next year or two, to see what happens. I do suspect up to half of those, or more, will have ME.

And from the same group, the list of symptoms almost perfectly matches the diagnostic criteria that I mentioned before, with the most common being fatigue, post-exertional malaise, brain fog, neurological problems, headaches, memory issues, insomnia, muscle aches. I mean, that's the diagnostic criteria for ME, isn't it? So, it's going to be teasing out who has and who hasn't got ME. That’s the next challenge.

Summary

  • ME is a complex multi-system, heterogeneous condition and it's fascinating—it's probably one of the last unsolved medical mysteries of the 21st century. And here we are talking about it, so that's exciting.
  • There is a post exertional flaring of symptoms and exertion can be even trivial things. The ‘neuroimmune exhaustion’ is pathonemonic of the disease. The severity of the symptoms can fluctuate hour to hour, day to day, month to month, year to year. Patients present with a long list of overlapping symptoms. They affect different people in different ways.
  • There is an opposite physiological response to exercise.
  • Management needs to be tailored to individuals.
  • Patient harm can occur following failure to recognize and diagnose it. Wrongly giving advice to do graded exercise, or even telling the patient to ignore their symptoms—they've often ignored them for far too long by the time they present to you—being told to ignore them some more, can be very harmful.
  • Recognition, information and support to friends and family, as well as employers can be really helpful. If they are school age, telling their school nurse or teachers can be immensely helpful for them.
  • Early diagnosis, rest and disability support can reduce morbidity.

Q&A

Q: What advice do you have for those of us in the patient and research community who wish to be allies for ME colleagues. I know that sounds vague but what do you advise of us in terms of being more supportive and helpful. 

A1 (Sabrina): I think one of the things that's most important is just amplifying existing voices. We have some wonderful advocates in the community and because our community is of varying degrees of ill, some of our advocates are literally advocating from their bedrooms—and from their beds—on that one good hour that they get a day. So, to be able to amplify those voices and really support what they're saying is so important. If you can do that that's tremendously helpful. We often have campaigns or initiatives where we're looking for volunteers, so if you want to help more than that and you want to really engage, there's so many wonderful opportunities to work with us. Just reach out and ask. I've put my contact information in the chat, and I'm always open to receiving messages on Twitter or by email.

A2 (Nina): I've been amazed at how helpful patients have been in supporting medical students that I've been working with in the UK. Anything from a short answer to an online email, all the way to having an interview with a medical student, has enabled the student to really understand the disease. And also has enabled them to build a profile of what patients would like doctors to learn about the illness. I think that if you have very little energy but would like to do something, helping to educate—on whatever scale you can—would be a phenomenal way of helping out. Sharing a short narrative or video that can be shown to medical students, or training physiotherapists or occupational therapists. They don't have to just be doctors, they can be across the specialties.

Q: I could see this webcast would be a wonderful resource for patients to direct to their Canadian physicians, especially with CIHR endorsement, which gives it automatic credibility which is desperately needed. Will this video be posted on the CIHR website, if so when?

A (Karim): Let's get behind and share it widely and share snippets of it widely. Folks can offer places where they can promote it. As a community we can drive traffic—everyone in this community, using their voices in different channels—to add to the reach in different communication channels for the whole community.

Q: I want to draw attention to the question about clinical help in Canada. Not everyone can queue up to see Dr. Muirhead. Do you want to touch on what your advice is? You've had literally thousands of people asking your advice about appropriate clinicians.

A (Sabrina): That's a really tough one for us in Canada. We have three clinics that work specifically in chronic illness. They're learning about ME and trying out some new things. We're really thrilled about that. I think we can build on that capacity and build on that knowledge. I think there's some really exciting work in the next year ahead. Our working group is also doing a lot of work to try and educate physicians as quickly as possible. I'm working personally with some medical students. We're working one on one with some doctors who are showing some curiosity and interest. There are really hopeful things happening, but they’re not happening fast enough. They're not going to be the kind of thing that's going to happen overnight.

Those three clinics have very long waitlists, so we always encourage patients to get on the waitlist right away. One of them is in Halifax, one is an Ontario and one is in BC. Get on the waiting list as soon as possible, and go into that with realistic expectations, because there is no cure and there are no approved treatments yet. What we're trying is really trial and error.

Everybody's still learning about ME in Canada, so it's still early days, but hopefully that's helpful.

Q: Is there anything that can be done to lower the risks of ME, Nina?

A (Nina): That's a tough one. It’s bad luck if you get ME, it's not that you've done anything wrong. Often we're seeing that in 80% plus, it's a viral trigger or trauma. If you have gone through emergency surgery, or had a very bad burst appendix, or you've had coronavirus or anything else that sort of really depleted your immune system, then you must rest out of it. Especially if you have that family history of autoimmune disease. As I said at the start, about 40% have a family history, and also any personal family history of ME. If you've had a previous glandular fever infection—maybe when you were a teenager—those things can increase your risk. Early resting and pacing, following an infective or traumatic insult is really important in those early stages. Later on, I think it is luck more than judgment.

If you've got a really supportive network, and you're able to rest and recuperate like a trauma patient would, then you've got a half chance of rebuilding some of your pre-illness capacity. But I don't think people who are still sick decades after first getting sick, did anything wrong to cause the disease profile to be severe and prolonged. I think it's more complex than that.

Q: What does fatigue mean in practice? Is it just tiredness or is it different than that?

A (Nina): Describing ME as fatigue is a bit like describing a leg amputation as breaking a toenail. It's a total underestimate— to the point that it really does not describe the disease.  I was so tired that I couldn't find words. I was so tired that I couldn't cope with someone being in the same room as me. It's crushing tiredness. It's like you've been run over and is total neuroimmune exhaustion. I think that's the better way of describing and understanding it other than just fatigue. Everyone feels fatigue—no one feels so crushed that they can't speak or think.

Q: And just one final question before we wrap up. Has there been any genetic predispositions associated with ME that have been studied or reported on in the literature. I know that this is being looked at right now and studied. Can you talk a little bit more about that?

A (Nina): There are many anecdotal family reports, where grandparents, parents and children have got the disease. Also, with many children, this has caused a lot of problems—because then they start looking at the parents and thinking, “What are you doing to these children? Why have all three of your children got ME?” There is definitely some genetic predisposition. I think the biggest evidence that we've got to date is the 500,000 UK biobank entries. And a big study in the US as well where they're seeing if people have got inheritance for insurance claims. They said that based on those massive numbers, it is likely that there's a genetic component.

But what we really need is the actual evidence. There have been a few small studies, but the one that we're excited about is the Decode ME Project in the UK which is looking at 20,000 patients and finding out what the genome wide association is. There are likely to be a handful. Once we find out what those things are coding, we can then look into why it's gone wrong. It’s very complex.

Sabrina Poirier: Before I pass it back to Karim, I just want to thank again him and the IMHA team for doing this. Collaboration is really important and we talk about it a lot, but it's really nice to be able to see it in practice. We certainly very much appreciate them using their platform this way and giving us this opportunity. It's tremendously meaningful. And I want to thank Nina very much for sharing her knowledge, insights and her personal story. It's really brave to do that. There's still a lot of stigma around this illness and especially for medical providers who are suffering with this illness, they often don't want to come forward and so you're very brave and wonderful to do that for us.

As a final note, there's no cure. There are no treatments that are approved yet. And any treatments that do help, help a little. So, we want to be really mindful of that—that when we're treating patients, we are being kind and compassionate. And that we're being realistic about our expectations. Not everyone's going to recover. Even if they do everything right, there are going to be many people like Nina and I who remained ill and it's not for lack of trying, so please understand that.

Let's work together to increase investment in research. We all want robust and objective research and that's a costly endeavor, but it's an important one. Let's support our healthcare providers to learn more, so that they can diagnose and provide support faster, and minimize the harm that's caused to patients.

We can't battle this alone. We're going to need all hands on deck and everybody at the table.

Karim Khan: This community is working incredibly hard to help each other. At CIHR, we acknowledge that ME is real and we're looking for solutions. You gave us a good list of action items and they are all realistic. We've got to increase capacity, we've got to increase awareness, so, this is a massive step in the journey. I think people will be really grateful for you Nina for putting this out there, as we build forward. We need to aggregate information like this in one place, at a time where there's misinformation.

Why don't we close with your thoughts on the vaccine for patients with ME.

Nina Muirhead: I think if you have the opportunity to have the vaccine. Take it. Patients with ME should be categorized as a neurological disease. It's been listed by the World Health Organization since 1969. You do have a compromised immune system, so if you can have the vaccine expect that it may knock you for a few days, like a vaccine would—like a flu vaccine or maybe a little bit worse than that—so don't plan to do anything.

Expect a bit of post-exertional malaise, but get vaccinated because it's so much better than having COVID.

Karim Khan: You were saying before the call that 15 million people have been vaccinated in the UK so it's a good sample. It gives us all confidence.

Date modified: