Interview with Dr. Lily Chu and Dr. Eleanor Stein by Bronc
It was a warm summer evening and I was looking forward to watching one of my favourite films, when I received a text from my best friend.
I expected the text to be a question asking me what film I was going to watch. Instead, he informed me that the night before he had attempted to kill himself.
The next day, when we met, he explained that he could not endure his suffering any more and that is why he made the suicide attempt. Now my dear friend, whom I loved as a brother, was just one amongst many other tragic stories.
There is plenty of evidence to suggest that there are several communities who are at much higher risk of suicide than the rest of the general population.
My dear friend belonged to one of those highly vulnerable groups.
There is also a body of evidence to suggest that people with myalgic encephalomyelitis (ME) are one of those highly vulnerable groups. For example, in the UK a 2016 Lancet paper noted that, ‘our findings show a substantial increase in mortality from suicide. This highlights the need for clinicians to be aware of the increased risk of completed suicide and to assess suicidality adequately in patients with chronic fatigue syndrome’. It stated that people with ME have a more than six-fold increase in suicide risk compared to the general population.
Last year I spoke with Professor Leonard Jason and Madeline Johnson about the risk factors for suicide amongst people with ME.
More recently, I caught up with Dr. Lily Chu and Dr. Eleanor Stein to discuss their publication on suicide prevention strategies for people with ME, entitled “Identifying and Managing Suicidality in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome.”
Lily Chu, MD, MSHS is the Vice President of the International Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis. She has a background in internal medicine, geriatric medicine, and health services research. Her career took a detour in 2006 when she became ill with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Since then, she has investigated various aspects of ME/CFS, including its epidemiology and the unusual symptom of post-exertional malaise. During 2014-2015, she served as a member of the NAM Committee on the Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, which created new, evidence-based criteria. From 2012-2021, she was a member of the Community Advisory Board for the Stanford University ME/CFS Initiative. She has also collaborated with the CDC, FDA, NIH, and Cochrane.
Eleanor Stein MD, FRCP(C) is a medical doctor and psychiatrist who recently retired from 35 years in practice, the past 23 of which were dedicated to helping people with myalgic encephalomyelitis, chronic fatigue syndrome, fibromyalgia, environmental sensitivities and chronic pain. She became interested in this area when she became ill in 1989. Since then, she has dedicated her career to offering integrative medical for these conditions. She created the ETeam, the only multidisciplinary team in Canada to provide objective assessments for people with ME/CFS, FM and ES. She has participated in research, most recently as chair of working group 6 of the ICanCME (Interdisciplinary Canadian Collaborative Myalgic Encephalomyelitis Research Network). She is currently co-PI for a clinical trial of a mind-body therapy in ME/CFS and Long COVID. In her “retirement” she is offering online public health education online to anyone world-wide seeking curated information to take charge of their health.
The interview below is an edited transcript of the zoom interview with Dr Chu and Dr Stein which was hosted by my daughter.
Ophelia Murphy: I’d like to welcome everyone to today’s discussion. I am hosting today’s discussion on behalf of my father who has ME and is too ill to be here. We are going to be discussing an important issue that is suicide amongst people with ME. It is something of a taboo subject which receives very little attention from public health authorities. There is a body of evidence to suggest that people with myalgic encephalitis, also known as ME, have a more than six times higher increase in suicide risk compared to the general population. To help us understand this difficult and complex issue we’re very lucky to have with us Dr. Lily Chu and Dr. Eleanor Stein to discuss their research about suicide amongst people with ME and potential prevention strategies. Last year they co-authored an article entitled ‘Identifying and Managing Suicidality in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome.’ So welcome Lily, welcome Eleanor, thanks for taking time out to participate with us in this discussion today.
What motivates you to get involved in researching the issue of suicide in people with ME?
Lily Chu: I and a few other people in the San Francisco Bay area started an in-person support group for ME/CFS patients. Over time it grew to be over 100 people and even included people outside of our local area. There were about three people, all under the age of 40, who died by suicide.
Now, when I used to see patients as a primary care physician, I think you would call that a general practitioner or GP in the UK, I had worked with suicidal patients before but the circumstances, the triggers for their situation seemed different versus what I was seeing in my support group. The people I knew did not seem intrinsically driven by a desire to end their lives but rather, they wanted to stop the symptoms and the consequences, the socioeconomic etc. that they were experiencing.
So this made me wonder what, if I was still in practice, would do if I was faced with people who are in such situations. That’s what inspired me to write the article. To really have something practical that healthcare professionals could look to.
Eleanor Stein: So I am recently retired and I was in an ME focused practice for over 20 years. I’m also a psychiatrist. In my psychiatric practice over many years I only had one patient commit suicide, believe it or not. When I started my ME practice it was five or six people who committed suicide, which is quite a few, and, as Lily said, those people were not necessarily depressed, which in psychiatry we’re always kind of taught that’s the biggest risk for suicide. It was very evident to me that in every case they killed themselves because they couldn’t bear the suffering of their symptoms, and they couldn’t get, either the medical help, or the social support that they needed to live with dignity.
So the woman who we used as an example in the case study in the paper we wrote is a real person, and I still remember her vividly. It was very predictable that she, unlike in the paper, she actually did commit suicide, because in real life she wasn’t able to get the support that we outlined might be helpful.
She had pain issues and her apartment did flood and now she had mould and she didn’t have the money to get it fixed. She was getting sicker and sicker, and she saw no escape. So when Lily approached me to collaborate on the paper I was all in, because I thought, this is so important to get the message out that people need real practical support. Just words or therapy is not going to make that much of a difference. They need someone to make sure they have the medical services they need. They have the in-home support that they need and the financial support that they need. Without that people will continue to kill themselves.
Lily Chu: I want to reinforce what Ellie said about what we were taught in medical school, and keep in mind that Ellie was educated in Canada, and I’m educated here in the US, but yet in both countries healthcare professionals, when they’re taught about suicidality, which is suicidal thoughts and behaviors, the focus is on depression or other psychiatric illnesses.
When, in fact, you would think naturally there would be a lot of work looking at chronic illness and suicidality and, as I will get into later, there is not a lot of work looking at those two factors.
Ophelia Murphy: From what you’re both saying, it seems to really come more from a place out of genuine desperation due to someone’s circumstances as opposed to that more clinical depression aspect.
Lily Chu: I looked at the US National Alliance for Mental Illness (NAMI).They had a top 10 myths around suicide and number one was that people must have had a mental illness, or they must have had this issue come up. I thought that was very good that they put that up out there.
Ophelia Murphy: So returning to the question around the subject of suicide, and how it still carries a lot of stigma in society where many people can see it as an uncomfortable subject to discuss. When my dad first interviewed Professor Leonard Jason he sent the interview to one of the national ME charities here in the UK for publication in their quarterly magazine. He was then informed that the magazine would not publish his interview with Professor Jason as the subject of suicide was too depressing a subject to talk about. So why do you think there is still so much stigma regarding the subject of suicide?
Eleanor Stein: My best guess is a lot of people are just personally uncomfortable because maybe they haven’t sorted out their own thoughts. So in psychiatry or in, say, psychology research, it’s really clear that if you can put language to something your chances of coping with it are much better. So, if you can put words to what you’re experiencing, your emotions, and the entirety of what you’re experiencing your chances of coping are much better. So I think the average person probably doesn’t have that language.
I believe another of the top 10 myths is that talking about suicide might increase the risk. My understanding is, and I think we quoted at least one paper in in our paper, is that’s totally wrong.
In my practice I found that those who were experiencing suicidal thoughts, were so relieved to have an opportunity to talk about it. I would like to believe that opportunity to talk about it, and be validated, and have someone whose understanding and not be judgmental may have decreased their urge to kill themselves.
My best guess why people don’t want to talk about suicide is their own personal discomfort. Then there are the fears that somebody might be more likely to consider suicide if it’s out there being spoken about. But I think in the context of a doctor-patient relationship, or a therapist-patient relationship, it’s absolutely better to talk about everything.
Lily Chu: I agree with Ellie. There’s no evidence to support the view that if you discuss suicidality then it’s going to increase that person’s chances of thinking about suicide or doing something about it. There are studies that show talking actually reduces the risk of suicidality. There are several studies we didn’t cite, but they are out there and have been around for years.
A few years ago I was reading an article about Dignitas, the Swiss organization that helps with assisted suicide, and the interesting fact was that 50% of the people who flew to Switzerland and enrolled in their program made the decision to not proceed with suicide after that visit. I think that might be what Ellie was referring to, which is that people actually felt relieved that they were able to talk to someone openly and without judgment about how they felt.
So that’s one point. The second point is, Ellie was starting to talk about Japan. And there is this phenomena I read about, which we didn’t discuss in the paper called suicide contagion. That’s when exposure to such stories can induce people to sometimes think about doing something. However, there are ways to reduce or prevent that from happening. Over the last few years there have been guidelines issued by major organizations about how to report suicide or suicidality topics around suicide in the media. For example, they would say, to include resources with any articles or communication around the topic, and conversely, to publish articles about people who have struggled with suicide, and how they managed to get through those crises.
The third factor I would say, that’s specific to ME/CFS, why organizations might not be talking about this topic as much, is that any association between ME /CFS and suicidality might offer fodder to people who might still think that this illness is as a result of psychiatric or mental illness. There are also concerns, I believe, from patients, caregivers, various groups that treatment for mental illness can be harmful for people with ME/CFS.
For example, I think in the UK and in Europe there have been several cases of people who have been involuntarily hospitalized for ME/CFS in mental health facilities. During their time there they might have been subjected to cognitive behavioral therapy or exercise therapies that made them worse and didn’t really help with their ME/CFS, because maybe they didn’t have a psychiatric illness or it was not the main contributor to their current issues that they were experiencing.
Eleanor Stein: I was just thinking, Lily, it’s like you’re differentiating between the external barriers and the internal barriers. So the external barriers meaning people who don’t know, or possibly even believe, ME exists. They don’t want to put it in guidelines, because that means they actually have to figure out what it is, deal with it and acknowledge it. So many people still aren’t ready to do that.
I like how Lily differentiated to the internal barriers, meaning people who have the illness, who totally understand what it’s all about but are so scared of anything that might even hint at the fact that there’s a connection with mental illness that they they don’t want to bring up suicide either.
So we’ve got it both amongst the community, and outside the community, for different reasons.
Lily Chu: I’ll also add that it is not simply that the UK that has not explored or spoken about this issue much. It is also the same situation here in the United States. I only recall a few articles published by organizations for the public about this issue here in the United States. In fact, I recall that ME Research UK as well as the 25% ME group have talked about this topic in the past and the 25% ME group did a survey. This is more than a decade ago. I think it was 50% of people with severe ME/CFS had thought about suicide. But don’t quote me on that exact figure. I just know it was high.
Ophelia Murphy: It really does add some quite complex and nuanced layers on top of the pre-existing stigma that tends to exist around the topic of suicide in general. So it’s understandable that there’s many reasons why there’d be barriers, especially for someone to open up about any suicidality.
Eleanor Stein: I also wonder whether, if say an organization like NICE or a government, acknowledges a problem it then puts a bit of pressure on them to actually do something. Especially if it’s government. So say in Canada, where you know, the topic hasn’t come up at all in any form.
If some government group were to acknowledge this was a problem, it would be kind of on their shoulders then to try to do something about it. Like, okay, how can we actually help support the people that are in this position and that kind of support is, as we’re probably going to talk about, a little bit labor intensive, and probably expensive and individualized. So governments don’t really want to go there. That’s a bit of a cynical potential reason.
Ophelia Murphy: I can imagine with what I know about ME and the fact that there’s still very limited public information really available, and that there’s very limited visibility of it in terms of being a chronic condition, but just getting people to recognize that it exists in the first place can most likely just take priority in any conversation and have anything else. There’s always that concern of how we sidetrack in the conversation when we just need to get that acknowledgement first and foremost.
So unless anyone had any final comments relating to that question, I will move us along to our next one.
The UK Government has recently launched a national suicide prevention strategy and it did acknowledge socioeconomic factors as an issue to be addressed within this strategy. One example which comes to mind here in the UK, is where hundreds of very ill people have taken their lives due to the Department of Work and Pensions cutting their disability benefits leaving them destitute.
Other social factors some have pointed to include poverty, homelessness, drug misuse, stigma, disability status and marital status. Have you come across evidence suggesting that socio economic factors are a significant factor in people with ME attempting or dying by suicide?
Lily Chu: There’s very little published research about the causes and drivers of suicidality in ME/CFS. Dr. Jason and his group, whom you mentioned earlier, have written several articles about this topic, and so in our paper we cite a survey that was conducted by them and also by a separate group in Spain.
Both groups found that the lack of resources, including money, housing, medical care, were among the most cited factors contributing to suicidal mediation.
The other factor is, we know, for invisible illnesses feeling like you are a burden, including financially, for your family is a risk factor, and that work has been conducted by other people, but particularly for invisible illnesses by a scientist named Kathy Peterson.
Outside of ME/CFS itself there is some research on the contribution of poverty to suicidality, but this still very much seems to be in its infancy, which is really surprising to me because it would seem that obviously that poverty would be an important factor.
And so in our paper we do cite some studies from the late 2010s or early 2020s that there are people at the financial margins that are at an increased risk for suicide. At the end of the paper we also talk very briefly about how people are looking at interventions to alleviate poverty such as a higher minimum wage or more affordable rent. They’re being examined as ways to prevent suicide.
So that’s the economic factors. And in our paper, we talked about some of the factors you had mentioned, including the stigma and disability status and marital status. But I’ll hand it off to Ellie to talk about that, Ellie.
Eleanor Stein: So you know, my contribution is mostly based on my pretty extensive clinical experience. And I would say, in every case except one, the people in my practice that committed suicide social factors, meaning most of them, were living alone.
So a big risk when you develop severe ME is that your partner and friends leave you because, you know, you’re not able to participate and contribute the way that you were before. So most of the people that committed suicide were single. They were aging, and they didn’t have enough money. There was one young person in my practice who, I think for him it was just a loss of hope for the future he didn’t see, he didn’t see hope, but he had good family support. That’s just a convenient sample. It’s not research, but it definitely fits with the research.
I can also say I have met many patients in my practice who were very severely ill, and from the outside it looked like their quality of life was so marginal. but the ones that had strong family support, and they didn’t necessarily have a lot of money, but they just had that kind of unconditional positive regard from at least one other person, from observing that seems to maybe be protective. They weren’t alone
Lily Chu: In terms of stigma we do talk about this in the paper. There is research in general on this concept of belongingness and connectedness, and how that can protect against suicide. So if if you are being considered an outsider, or different, because of some factor, including chronic illness or an illness that is, being debated by health professionals. Then I can understand that contributing to suicidality risk.
So in the paper, we do talk about how healthcare professionals can say or do things that are more supportive of patients, even if they don’t have all the answers versus actions like dismissing their concerns, ignoring their symptoms or doubting their diagnosis for disability status. Ellie was talking about how this is not straightforward, and I would agree with that.
In the paper based on Dr. Jason studies they found that people that appear to be at the moderate level of function are at the highest risk with the hypothesis: that people who are at the mildest stages of illness are able to get out more and do things, and people at the more severe end they either don’t have the capacity at all to act on anything, or they have caregivers with them, regularly, who are able to prevent any actions. It’s not a straightforward relationship.
Ophelia Murphy: Now that’s really interesting. I haven’t really considered too much that relationship of being at that moderate level of kind of capacity and ability to function where others might perceive you as able enough to carry on with things. But then, being under that extreme state of fatigue, but feeling like must push on, cause you don’t want to be in that state of requiring full time care giving from others around you, especially say family members, and going back to earlier about not wanting to be a burden to others.
How you could put up pressure on yourself which could potentially increase that sense of desperation, isolation, and ultimately leading to that place of feeling suicidal. Talking about protective factors, there are social protective factors. And then the economic protective factors, and how sometimes it can go hand in hand. And I suppose, just to give anecdotal example with my dad who has ME. I don’t live at home any more. I am used to being the driver of the family, I can take us on car trips to go places which enables him to get out of the house.
Many people with ME don’t often get the opportunity to go out the house very much. Plus there’s the economic fact of just being able to afford a car which honestly, in this day and age gets harder to do. That is one important thing, but also just having a family member who has the availability and will make time to take you out places as well, that if you were to take one away it’s difficult. But could have a loss of both of those. Yes, just how much that would compound so many of the difficult feelings that could take you to that place.
I will move us onto the next question unless anyone had any further thoughts just around the different factors there.
As I said earlier, the new ME guidelines from NICE and the public consultation about improving the lives of people of ME, which was launched by the Department of Health, do not mention suicide amongst people with ME.
So we’ve been discussing the socioeconomic factors and other factors like disability status. What medical risk factors are significant causes of people with ME attempting suicide?
Eleanor Stein: Sure. I think we kind of covered this pretty well in the paper, but in my experience it’s the combination of severe pain, unremitting pain and unrefreshing sleep is massive, because then you just always feel horrible. And the low level of functioning due to post exertional malaise. Like to me those three would be the top three that just so severely impact quality of life that people start saying things like I don’t want to live like this.
Lily Chu: In the paper we cite some work by Brian Medani. In 2017 his group published a very well cited paper examining risk factors for suicide across various chronic illnesses. And again, this is surprising to me is the lack of research on the impact of chronic illness on suicidality. They found that all chronic illnesses increase risk, that the risk goes up with the number of illnesses, and that out of the 18 or so illnesses they focused on 3 more than double the risk, and these were traumatic brain injury. sleep disorders, and HIV aids.
So based on that work I would suspect that unrefreshing sleep and cognitive issues, memory attention being able to communicate with other people also increase risk in people with ME/CFS. It is important to remember that deliberate sleep deprivation is used as a method of torture by some interrogators. So that is how important sleep is to to people.
Ellie also mentioned pain, and so our our co author, Megan Elliot, looked into this topic particularly. So we know that severe and chronic pain is a risk factor, and that’s been known for a long time. She found that some studies suggest chronic, heterogeneous function limiting pain which may be common in ME/CFS patients confer the highest risk. In one study they looked at pain and found that the effects of pain were primarily mediated by its effects on sleep so disrupting sleep. So the 2 can interact together.
I think the limited function, which is the culmination of of all the various symptoms that an individual can have are also a risk factor. As we mentioned earlier there it’s a complicated relationship between function and risk of suicidality.
Finally, Ellie brought up post exertion malaise, and that along with symptoms like hypersensitivity to stimuli. Whether that’s light sounds or food can also increase the risk of suicidality because they restrict physical cognitive activity and socialization and medication. Sensitivity can also affect the use of other medicines, pain, sleep, psychiatric medications to treat symptoms and comorbidities.
Ophelia Murphy: One thing that I can really only speculate because you guys are the experts, and have done all the research but thinking back early to that different levels of functionality. How that someone who has moderate function may actually be a high risk of suicide. I wonder if maybe having periods of good days and then you, going into a bad period again, may compound feelings of frustration at the condition when you just start thinking I could be getting better, there might be light at the end of a tunnel, and then the sinking feeling in terms of mood as you go back into a state of post exertion malaise. I just sometimes wonder if kind of going through that period of feeling all right again and having hope being built up, and then realizing that actually this chronic condition is something that might always be with me. Can this affect people’s mental health?
Eleanor Stein: I think that’s a good insight I’ve often talked about with my patients, you know, when you have a better day and we often think oh, I’m cured, I’m good, I’ve arrived. Of course, the next day might be totally different, and when we have a bad day it’s hard to foresee recovering from that. So I think you’re right. The roller coaster of ME is the norm, right, almost nobody stays the same every day. Almost everybody has pretty significant ups and downs and that may well be a contributor.
Lily Chu: That’s actually a fascinating point. I don’t know if anyone’s done any research on it, but I know that personally for me uncertainty is much more troubling than having a constant state, whatever that state is to some degree.
Ophelia Murphy: I suppose the one thing that can be said for having quite a consistent state, whether that’s with the pain or disrupted sleep is that you have no choice but to become very familiar with it, and be as consistent as possible in using your kind of coping strategies just to manage things like pain regulation, whereas again, I suppose, we’ve referenced this idea of the roller coaster. If you can have a good period of even if it’s say a week.
Then you can already start to get out the habits of having to do that constantly enforcing strategies to manage and regulate. So yes, it’s it’s an interesting one to think of.
Eleanor Stein: The other thing I could add, because this comes up so often in discussions with patients, is that they talk about how because ME and FM, or MCS, all of that cluster of diseases, the day to day status is so variable, it actually significantly adds to stigma and disbelief.
So amongst friends, they say, well, last week. you know, you came to the picnic. Why can you not come this week or last week you talked to me on the phone. Why can you not talk to me tonight? People start thinking that you’re faking, or that you’re using your symptoms as a way to get out of things that’s come up really often. So that’s internally.
Externally it’s a big problem as well, because when you apply for disability, at least in Canada, the criteria doesn’t take into account that your symptoms are variable and unpredictable. That one of the main reasons people with ME who are, say, moderately ill, may not be able to work is because they can never predict if they’re going to be able to show up and work the next day.
Disability rules they’re much better for things like, if you’re a quadriplegic and you can never walk. It’s very clear cut. This is harder, like there’s groups in Canada that are lobbying Canada’s pension disability plan, which is like our national government disability, to try to explain to them that this variability and unpredictability is a big reason why people with ME can’t work.
Lily Chu: The issues with disability that Ellie is bringing up are also similar to that here in the United States. Sometimes, I think that the system was started when disabilities were conceived of, as, as Ellie was saying, fixed disabilities that once you had it, it was more or les the same and unchanged over time and probably back then there weren’t as many people who survived chronic illness. And so it’s not just ME/CFS, many chronic illnesses do not have a fixed status and people will fluctuate in their function. And finally, a lot of the assessments, or criteria are based on physical functioning when cognitive function is just as big a factor.
Ophelia Murphy: So I suppose within that conversation, we’ve kind of been talking about a number of different factors there. But the the medical and socioeconomic are the ones that we’ve really honed in on and kind of leading this into the next question here. Are there any other demographic factors, age factors, potentially cultural factors as well which might have a bearing on suicidal ideation in people with ME?
Lily Chu: We emphasize demographic and age factors less, because many are impossible or very difficult to modify by patients and their carers. First. I don’t recall specific demographic or age factors being brought up as very significant. General research on suicidality in the US and Canada suggest that people who are older, who come from some ethnic backgrounds like Alaskan native or native American backgrounds, who identify as LGBTQ are at higher risk for suicide, and that women are at higher risk for thinking about suicide. But men are at higher risk of dying by it.
There’s also research, looking at people who have a personal or family history of mental health conditions, trauma, suicidality and self harm. And so a personal or family history is also a risk factor.
Eleanor Stein: I was going to give a very similar answer to Lily. I don’t find it that helpful to say, well, this age or gender is more at risk, because you can’t do anything about it. So my focus is on those modifiable factors which probably we might get into, whether some of the things that you can actually do something about and provide support so that they become less problematic.
Lily Chu: I think it has to do with our paper trying to help your average clinician and clinic. I think those types of risk factors might be most helpful for people looking at epidemiology or allocating resources at a public health level. And so that was the focus of our paper.
Ophelia Murphy: In the UK Government’s new suicide prevention strategy it makes the welcome declaration that suicide prevention is everyone’s business. Every person, organization and service up and down the country has a role to play. The new strategy encourages a national conversation around the issue, so that everyone, from individuals to organizations use language which supports people in distress and reduces shame and stigma. This should hopefully have the effect of encouraging people to seek help and support when they need it.
Coming onto the issue of suicide prevention amongst people with ME. What does a suicide prevention strategy look like when tailored to people with ME?
Lily Chu: I think it’s great that the UK government is making suicide prevention everyone’s responsibility. One message that we wanted to get across in our paper was that all clinicians should take their patients, mental health into consideration and not just people who are mental health professionals. For example, recent work has shown that many people attempting or dying by suicide or thinking about it, are much more likely to visit a medical professional than a mental health professional in the days and months before. And here I’m defining a medical professional to mean someone who specializes in primarily a medical and not psychiatric or psychological conditions.
There are some steps that can benefit all people with chronic illness. Rather than specifically ME, but people with ME will also benefit from them.
So in our paper we talked about how easy access to mental health professionals, whether by patients or doctors in real time, will help. And one of the interesting things I learned is that generally there’s not an agreement about screening everyone for suicidality. And when I say screening, I mean, the person does not bring up anything or do anything that makes you concerned, but that you’re just concerned in general, because, for example, they have a chronic illness, and that’s because there aren’t enough resources in place. If someone is actively suicidal and needs immediate help so having immediate access to mental health professionals would help, even if if it’s only the physician or clinician calling that doctor and asking for advice.
Another thing we mentioned is arranging for mental health care that can be accessible from people’s homes or wherever they are.
So that probably the majority of people could be managed with close follow up potentially via in home telephone virtual visits, and yet, at least here in the US I don’t think our healthcare system is set up to allow for this, especially if one is not paying privately for care.
Those would be two ideas that would benefit everyone with chronic illness and not specifically ME. And then I have some ideas for ME specifically. But I’m going to stop and let Ellie answer too.
Eleanor Stein: I remember when we were writing the paper that idea of in home virtual care because we were writing it during Covid. So it was very much top of my mind and when Covid happened I switched all of my appointments to virtual, because that’s kind of what was happening at the time, and my patients loved it, and attendance shot up. I had lots of severely ill patients who had never been able to attend groups before, because they just didn’t have the energy to get there, starting to ask if they could join the groups. So I think making the care accessible is like the most important thing. You could have the best program, but if the patient can’t get there because they’re too sick to drive there, they don’t have the finances to get there, then it’s pointless.
The thing I would add is what I would generally do with some one who was talking about loss of hope is ask them a really simple question. What would have to change for you to feel less hopeless? Or for you to feel more hopeful? So if they’ll tell you, you see if you can help them get whatever that is. Of course, some things are easier than others, but most people know what it is that they need to make their life feel more meaningful or worthwhile.
Just ask them what they need, and they’ll say like, I need transportation, or I need help with cooking, or I need someone to bring me groceries, or I need a different doctor, or I need counselling. They’ll tell you exactly what they need nine times out of ten.
So, as an example, I have a lot of patients who derive a lot of joy from gardening, but many of them can’t really garden fully because they’re too ill. So for many of them someone in their family or friend group has built them a little raised garden, like just a small, tiny one, right? And they plant a few seeds, and they go out every day and look at their seeds, grow and water them, and it’s within their capacity.
So something small like that that’s not on anybody’s radar of medical, financial or home care. And and they send me photos of their flowers, cause they’re enjoying them so much, and they want to share. I just got one this week from a severely ill patient, and it’s quite cold here in Canada right now, but her roses are still blooming, and she sent me a photo.
That’s just an example of thinking outside the box and asking the person. So that person her husband built her the raised bed that she gardens in, and gains pleasure from every single day.
Lily Chu: This is a tangential note back in my prior life as a geriatrician. There was a study where they would take a rolling cart, and they would put plants on it and roll it around to different nursing home residents, many of whom were bed bound. And that program helped increase quality of life. It decreased issues with mental health. And it also improved people’s health in general. It was a small intervention. They were just rolling a cart with plants around, you know, and people had the opportunity to do a little gardening on their plants once a week.
Eleanor Stein: Another tangent is pets. So pets are mentioned very, very often as being important. and sometimes the thing that puts someone over the edges either their pet dies. or they lose their financial security, and they have to move, and they can’t find a place to live that allows pets.
I’ve had at least one person commit suicide, because she just didn’t feel life was worth living without her pet. So not super expensive. Technically should be possible with maybe a good social worker to help someone do that search if maybe they don’t have the mental capacity to do themselves.
Ophelia Murphy: What strikes me from both your responses there is that it’s about taking that person centred approach to someone’s care that you establish. What is it about this individuals needs here and now, when no 2 individuals are ever gonna give you the exact same response. But when you can be led by what they say their needs are, and you can really meet them in a place that can immediately reduce that sense of ideation and intent in some people. And, as you just said Ellie. Some of it could be things that so easily avoidable as well.
Eleanor Stein: I feel hopeful from this conversation, cause it’s like this should be possible. Right?
Ophelia Murphy: It really it feels like it should be.
Lily Chu: The other point I was going to make is since there’s there was work looking at how people feel as though they’re a burden and that can help decrease the risk when educating caregivers about caregiver stress and what they can do to decrease their stress might help.
Also from the Federal, or governmental or nonprofit side if there were more services available to support caregivers. Whether that’s in in home help, temporary respite from the 24 hour care that some people may need. That would be very helpful.
It it might help patients feel like they’re they’re less of a burden if they can see their caregivers getting help.
Ophelia Murphy: I’ve seen the harmful impacts it can have of not being believed by others. Especially if it is family members. But then also, if you ask someone who spends the majority of their time at home just that cabin fever you can get with a loved one or family members, and it’s so easy to alleviate that pressure with just a day off somewhere. If you can alleviate that it, it really can make a world of difference. So yes, speaking from a place of lived experience, I’ve certainly seen that, and I do think that could contribute to a prevention in levels of risk.
Eleanor Stein: So caregiver relief, especially the caregivers that are providing 24/7 care, for them to get a break.
Lily Chu: I also had a few thoughts about what type of steps could help if I was constructing an ideal mental health system. So some some of those steps might be to to just educate and healthcare professionals more about ME/CFS, so that when they are faced with patients they’re not more knowledgeable about the disease or more empathetic towards it. We talked earlier about decreasing, unsupportive social interactions. So education about ME/CFS would help with that.
Lily Chu: I would having a function assessment on every patient and finding support for them as soon as possible to maximize their function.
So, for example, occupational therapists, they can suggest assistive devices, different ways of doing things that might help people conserve energy or suggest more supportive care, assistance to caregivers or healthcare providers. They should also be aware that if there are medications and treatments usually used for depression or anxiety. Those medications might need adjustment to lower dose. They may not work, and they might even cause problems for some patients. I came across some reports that, for example, certain SSRIS can make ME/CFS worse, although that can vary depending on the individual.
Ophelia Murphy: And I suppose, again, that goes back to that person centered approach, where for some people this medication will be very effective, and then for others, it may just end up worsening symptoms. It’s really about hearing about that person’s response to the medication they’re taking.
Lily Chu: Earlier, you had asked about medical risk factors for suicide. So for the ones we discussed specifically look for how those symptoms can be managed. Even if they can’t be cured. And to look for co-morbid conditions and treat or manage those co-morbid conditions
In my past life one of my areas of interest was pain management, and we found that in the elderly people often pain was just dismissed as part of being old. People would look into causes for pain that had specific treatments. For example, someone might have stomach pain for IBS, or, you know, headaches for migraines. And there are specific treatments for those conditions rather than just saying, this is due to age, or for this disease. This is just due to ME/CFS.
Eleanor Stein: I couldn’t agree more. Most people have this huge grab bag of symptoms, and the body’s healing processes are overwhelmed. The more of those individual pieces we can take out and manage the better. For some people they get to the point where their innate healing mechanisms are then sufficient to take them the rest of the way. You know there’s a lot of stories online of people who have had significant or full recoveries. It’s becoming more common. And I think it’s because there’s more and more knowledge out there about how to treat those individual symptom areas, either with non-medication or medication interventions. If you can unburden the body at some point it just goes “Oh, I get it! I can do this”, and it recovers.
Ophelia Murphy: If you can get to that point of having an alleviation of symptoms, then that can be huge for this suicide prevention aspect, because generally, symptoms do tend to be the focal point of arising in a person a sense of desperation and going down that path of feeling suicidal.
Eleanor Stein: Lily talked before about a website I’m not familiar with where it sounds like there’s stories of people who have recovered from suicidal ideation. There’s a lot of websites now of recovery stories from ME, and I recommend those.
It’s a bit of a balancing act. You don’t want to give false hope, but you also want to let people know there is hope. I remember when I first became ill with ME, which was 34 years ago, there was no hope. I didn’t know a single person who had ever gotten better and so the only thing I could assume from that is that I was never going to get better, and my life was going to be miserable.
It’s only been through decades of working and learning and applying what I’m learning to myself, and having some pretty significant improvement, that I’m now able to say to people no guarantees, of course, but it’s possible to get at least a little bit better, and sometimes quite a bit better.
Ophelia Murphy: It is important to offer hope and the idea that it’s not such a bleak landscape that is an impossible for one to ever be in a better place with your symptoms and your condition.
Lily Chu: I have a less optimistic view of substantial recovery from ME/CFS than Ellie. But I will say that even the few studies on recovery there are, show a low recovery rate but showed that there is possibility for some improvement over time in a significant number of people. And so that’s one point. My second point is we’ve had a lot of chronic illnesses that that over time we have found treatments and even cures for. So in my case, I’ve seen people dying of AIDS. And now I see people who have lived for decades with HIV.
I was educated that hepatitis C was a chronic illness with no cure, and now we have a cure, even though it is expensive and it has side effects. But it’s out there. So I think that maybe the public doesn’t see that, especially when you see progress over time. It’s hard to see. But I can see that. And I remember as as a clinician.
Ophelia Murphy: It can do a lot for your psychological mindset to know that there are possibilities, and especially examples of recovery in other illnesses. You just mentioned there, Lily, that if there isn’t something concrete right now in terms of a path towards full recovery for ME, yet knowing that in however many years time, people continue researching and having those new medical discoveries that one day there may be a place where it could be sort of an equivalent alongside someone who’s HIV positive, and being able to have a full and healthy and happy life, managing symptoms.
Lily Chu: So the last thing that inspired me was I knew many people with chronic and even terminal illnesses when I was in practice and contrary to what I thought the severity of the disease didn’t necessarily predict how people responded to it. So I’ve always been inspired by those patients who, despite everything that they’ve struggled with, they’ve managed to put together a life that is meaningful for them.
Ophelia Murphy: And I’m sure within that it can come down to people’s levels of emotional resilience. Going back to where we talked about these socioeconomic factors I do feel having something like a strong social support network around. you can help with building that resilience of getting to a place where, even if the day to day can be unbearably hard, sometimes, knowing that that exists and is around you it can make a big difference.
Lily Chu: I do want to give a shout out to Cort Johnson and everyone affiliated with Phoenix rising because Phoenix Rising was one of the first websites I remember. And I think, having electronic forums, like Phoenix Rising, have probably helped contributed to the mental health of many people around the country.
Ophelia Murphy: Absolutely, especially in terms of what was mentioned earlier around accessibility where, if you are, someone who has difficulty getting out of the house. Now there are so many people across the world that you can speak to for moral support. So I have one final question now for you both. What further research do you think is needed into this important but neglected issue relating to suicidality in people with ME?
Eleanor Stein: I would love to see a pilot study on asking people what they need, and then trying to get it for them and to evaluate. So to enrol people that are hopeless and suicidal. What will shift things for them? I think that’s that’s what we need. Once it’s been shown and published then it’s easier to try to push governments around the world to offer that service.
Ophelia Murphy: And, Lilly, would you agree with? Do you have anything further to add on to that?
Lily Chu: When when you gave this question to me, I split it into 4 different areas: research on clinical aspects, epidemiology, public health services and on a societal level. One type of treatment that I came across, and we mentioned very briefly in the paper is something called cognitive behavioral therapy dash suicide. There’s actually a dash suicide prevention, and this is not the same as cognitive behavioral therapy for depression, anxiety.
As part of that treatment which has been shown in other conditions to reduce the risk of suicidality, they do things like assessing a specific individual’s risk and protective factors. They look at what specifically for that individual might help them. As Ellie was suggesting someone might require transportation to see a doctor. Another person might say that in home support is the most important thing, and they also review the ways that people think about their situations and how that can be modified or tweaked to help them think about their life.
So I think there are a lot of things clinically that can be looked at even on just a very basic level for people affected by depression or anxiety. Are there specific medicines that work better for ME/CFS patients with those conditions or have more side effects for them. Knowing something like that would be helpful.
Epidemiologically we mentioned earlier that even though there are some known risk factors demographically. We don’t know what they are specifically for ME/CFS, so knowing that might help people who hold the purse strings decide where they’re going to allocate their resources. There’s one Lancet paper in 2016 that showed that people with ME/CFS were at 6 times the risk for suicidality versus people in the general population. That study needs to be replicated.
So those are some things on the epidemiological side, on the health services side we talked about quick, easy access to mental health professionals, whether for patients or for physicians and healthcare providers. And so that would be something that could be tested. Virtual clinical care could also be tested. Phone visits, teleconference visits. On a societal level and I think this has been neglected a lot. But just looking at whether something like guaranteed basic income, caregiver assistance, housing, a better minimum wage. Connectedness facilitated, for example, by e-forums could help with mental health.
Ophelia Murphy: We’ve talked about a lot of different factors. I imagine it wouldn’t be one thing in particular, but it would be a bit of a range of all the different factors that we’ve discussed today that could be either honed in on in terms of being a mitigating factor or protective factor. And then the things that could be reduced like the economic struggles in someone’s life, that can have a really positive impact. So something that’s wide ranging and will not be solved in a day. But they always say that Rome was not built in a day. So thank you both so much for your time and insights today.
More information:
If you or a loved one is feeling suicidal and you are in the USA, please call the National Suicide Prevention Helpline at 1-800-273-8255.
If you are in Canada, call the Canada Suicide Prevention Service at 1-833-456-4566.
Canada wide suicide hotline and emergency resources https://talksuicide.ca/
If you are in the UK call the National Suicide Helpline at 0800 689 5652
If you are in another country, see this list of international helplines.
For more information about suicide, including what might happen when you call for help, see this Helpguide webpage.
Resources: (Since there is relatively little research focusing on suicide and chronic illness, these are general resources.)
HelpGuide (US based) – this is a great resource in general as the website owners are psychologists and they have the backing of universities (Harvard, UCLA). It is written very clearly and is practical.
Safety Plan Samaritans.org (UK based) – Safety plans were developed by researchers in the US but can be used by anyone.
Live Through This (US based) – Collects stories from people who have struggled with suicidality and survived through their crises.
Largest English Language one stop shop for suicide statistics and research (happens to be Canadian) https://www.suicideinfo.ca/resources/