Article Risk Factors for Suicide in People with Myalgic Encephalomyelitis

Risk Factors for Suicide in People with Myalgic Encephalomyelitis
A Conversation with Professor Leonard Jason and Madeline Johnson
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Dr. Leonard A. Jason runs the Center for Community Research at DePaul University in Chicago. Image by Center for Community Research at DePaul University.

By Bronc

Dr. Leonard A. Jason is a professor of psychology and Director of the Center for Community Research at DePaul University in Chicago, USA. He has a long history of research in the field of Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS). His most recent books include: The Psychology of Peace Promotion and Introduction to Community Psychology: Becoming an Agent of Change.

Madeline Johnson is a co-author of several research studies into ME/CFS and is a research assistant at the Center for Community Research at DePaul University in Chicago, Illinois, USA. Later this year she will be starting her PhD studies in chronic illness amongst pediatric populations.

Madeline Johnson is a research assistant at the Center for Community Research.
Image courtesy Madeline Johnson.​

Phoenix Rising:

How did you get involved in the field of ME/CFS research?

Madeline Johnson:

In 2018 I graduated from the University of Illinois at Urbana-Champaign with a degree in psychology. Having developed an interest in the intersection between medicine and psychology, and with a plan in mind to later attend graduate school in clinical psychology, I sought a research assistant position here at the Center.

Having had little background knowledge about ME/CFS, I quickly learned much about the patient community, and my passion for researching this vulnerable population took hold.

This fall I will be starting the clinical doctoral program at University of Wisconsin at Milwaukee, where I will study pediatric populations coping with chronic illness much like ME/CFS.

Dr. Leonard Jason runs the Center for Community Research.
Image courtesy Leonard Jason.​

Dr. Leonard Jason:

In the early 1990s, having read about the low rates of Chronic Fatigue Syndrome (CFS), which is what it was called at the time, Judith Richman and I decided to work on a community-based epidemiology study to see what the real rates might be.

That is how I started in research.

Phoenix Rising:

Several studies point to the fact that people with ME/CFS are at a higher risk of suicide than the general population. A 2016 study published in the Lancet suggested that there was a seven-fold increased risk of suicide amongst people with ME/CFS. Unfortunately, there is a dire lack of studies that examine the risk factors for suicide amongst people with ME/CFS.

In 2020 you authored a study on the risk factors of suicide amongst people with ME/CFS. In this investigation you suggested that several social and cultural factors may place individuals with ME/CFS at a higher risk for suicide than the general population. You highlight the twin issues of unsupportive peer and medical interactions.

There is plenty of anecdotal evidence that many patients suffer from a social stigma whereby family/friends and health professionals fail to support them and don’t believe in the severity of their illness.

This is, of course, partly related to the medical establishment’s portrayal of ME/CFS as a psycho-social illness for many years — a claim that has been amplified by articles in the mainstream media.

In your study you note that the illness label “CFS” may increase the risk for suicide. Can you explain this issue in a bit more detail?

Center for Community Research:

Historically, the label chronic fatigue syndrome (CFS) has been stigmatized to a greater degree due to the fact that it only highlights the single symptom of fatigue. In reality, this illness is incredibly complex, and patients often display a wide variety of symptoms that may or may not fluctuate over time.

In highlighting the single symptom of fatigue, it downplays the severity of the illness, and sometimes portrays that the patient is lazy, or that it is “all in their head.” Additionally, when fatigue is highlighted, common methods of treating other fatiguing illnesses are brought into play, such as graded-exercise therapy, which are actually harmful to patients with ME/CFS.

Additionally, one study conducted at our Center revealed that medical practitioners were more likely to associate psychological causes to an illness if the term CFS was presented, and biomedical causes if the term myalgic encephalomyelitis (ME) was presented (Jason et al., 2001).

Aside from the overly simplistic nature of the CFS label, ME tends to sound much more physiological. This is problematic when our culture tends to take medical illnesses more seriously than those that appear to be psychological in nature (whether they are or not).

Phoenix Rising:

Numerous studies and a wide range of anecdotal evidence from people with ME/CFS illustrate the debilitating nature of the illness, which can have a very limiting effect upon everyday life.

People with ME/CFS experience high levels of functional impairment across physical and cognitive domains, scoring lower overall on health-related quality-of-life tests than many other chronic health conditions.

Meanwhile, a 2019 Action for ME survey identified that more than three-quarters (77%) of people with ME/CFS said they are unable to work because of the impact of ME/CFS, 88% said they had stopped or reduced household tasks and 94% said that they had stopped or reduced social contact. All of which points to the huge impact that ME/CFS has on people’s quality of life.

In your study you mention the 2007 book by Joiner “Why people die from suicide” which identified three factors necessary for a lethal suicide attempt.

Can you explain how these three factors led you to the conclusion that patients who experience moderate decreases in functionality may be more likely to attempt suicide than those with severe ME/CFS or those with mild symptoms?

Center for Community Research:

Joiner describes three factors necessary for a lethal suicide attempt:

1. thwarted social and medical supports,
2. perceived burdensomeness, and
3. capability to engage in suicidal behavior

In our paper, we discuss three levels of functionality. It is likely that all three groups experience varying degrees of the first two factors, although based on the descriptions of each level of functionality, it is probably that the most severe group does not have the physical capabilities to successfully engage in a suicide attempt.

Individuals in the most severe group are often bed-bound, and unable to carry out most tasks of daily living without assistance. While they may experience Joiner’s first two factors to the greatest degree, if they are physically unable to tend to daily self-care, they are likely not physically able to carry out a suicide attempt.

In contrast, the most functional of the three groups, while still dealing with varying degrees of all factors, may experience more social connections, can work small amounts, or take care of themselves to some degree even if limited.

These are all protective factors that may prevent or lessen suicidal ideation. We predicted the middle-most functioning group is at greatest likelihood for suicide due to the fact that they are impaired to the degree that many of the protective factors present in the first group are not there. Yet it is likely they possess enough energy to physically harm themselves.

"Many individuals who experience chronic pain, regardless of diagnosis, do not commit suicide as a result of depression, but rather as a way to escape pain that they experience when other options have been exhausted."​

-Leonard Jason & Madeline Johnson​

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Phoenix Rising:

In your study you identify physiological issues, particularly pain, as a possible factor in the decision to die of suicide. How significant are physiological issues as a risk factor for suicide in people with ME/CFS?

Center for Community Research:

Many individuals who experience chronic pain, regardless of diagnosis, do not commit suicide as a result of depression, but rather as a way to escape pain that they experience when other options have been exhausted (Devendorf et al., 2018).

In the general population, individuals who experience chronic pain are twice as likely to commit suicide (Fishbain, 1999). For individuals with ME/CFS, pain is a symptom that is commonly endorsed, often in the form of muscle pain, joint pain, and headaches (Jason et al., 1999).

It is highly likely that physiological issues, especially other than pain, are contributing factors for suicide in an illness that is largely systemic.

Phoenix Rising:

Another risk factor for suicide in people with ME/CFS identified in your study is the absence of diagnosed comorbidities. At first reading, this might seem counter-intuitive as one might expect someone with several long-term chronic medical conditions to be at a much higher risk of suicide.

How might an absence of diagnosed comorbidities be a risk factor for suicide?

Center for Community Research:

While the presence of comorbidities typically exacerbates one’s risk for suicide, we did not find that to be the case in our study. This may be for several reasons, although one explanation is that having comorbid diagnoses alongside ME/CFS may propagate access to better healthcare (i.e., treatment of symptoms is easier due to taking other illnesses more seriously).

Oftentimes in healthcare, having a solidified illness label or diagnosis helps to facilitate treatment. For an illness that is often shrugged off as psychological in nature, having a comorbid illness that is taken seriously may allow for doctors to attend to their physiological symptoms.

Additionally, because ME/CFS is a highly stigmatized and often poorly understood illness, we believe having a comorbid diagnosis may act as a buffer of sorts for those experiencing judgment.

For example, if a patient is unable to work on certain days or visit with friends due to their ME/CFS symptoms, being able to use their comorbid diagnosis as an explanation for their decreased functionality may lessen any judgment from coworkers and peers alike.

Phoenix Rising:

The National Institute for Health and Care Excellence (NICE), in the UK, have recently conducted a public consultation on its draft ME/CFS guidelines. These are due to be published in the autumn of 2021.

There appears to be nothing in the draft guidelines which deals with mitigating the risk factors for suicide amongst people with ME/CFS. Sadly, specialist services for people with ME/CFS are sparse and in dire need of greater investment in the UK.

What can/should public health authorities do to help reduce the risk factors for suicide amongst people with ME/CFS?

Center for Community Research:

One of the chief complaints of patients with ME/CFS is that they do not feel understood or supported. This is especially true of their interactions with healthcare professionals.

Physicians who are treating patients with ME/CFS should work together with them long-term so that they feel supported, as well as stay current on active research projects involving the ME/CFS population.

Another way they can assist is by referring their patients to various social support networks. Many patients with ME/CFS find comfort in forming connections with other patients struggling with this illness, yet many others are unaware of these resources.

There are many social support groups (often through social media, patient advocacy organizations, or blog sites), that allow individuals within the patient community to share in their experiences and create friendships with people who understand what they are going through.

Having these resources as a way to connect and gather information will serve as a protective factor for patients learning to cope with the implications of their illness.

Phoenix Rising:

There are few studies into the risk factors for suicide amongst those with ME/CFS. What further research is needed to help us better understand this important issue?

Center for Community Research:

I believe many risk factors for suicide within this population can be eliminated with a better understanding of the unique struggles that these patients endure. One way that this can be improved is to conduct more large-scale studies of both parents and children that include all genders, race/ethnicities, and a range of socioeconomic status.

It is also beneficial to look at the trajectory of ME/CFS in the long-term, as far too many studies evaluate the illness at a single-time point, when the reality for many patients is that their symptoms fluctuate.

Additionally, future research should investigate the role of medical communication in the diagnostic process, and how it may affect illness outcomes.

This may involve how physicians may better explain and portray an illness diagnosis, how they may communicate with other healthcare professionals responsible for the care of a single patient, or how patients may best receive support from peers and professionals (e.g., in the school environment, workplace, or with friends and family).

Learn more

The study described is: Risk factors for suicide in chronic fatigue syndrome, by Madeline L. Johnson, Joseph Cotler, Julia M. Terman & Leonard A. Jason. Published online 12 June 2020, in the journal Death Studies.

Read about a previous study by Leonard Jason on a similar topic: Overcoming this is going to be difficult: Suicide risk, stigma, and chronic fatigue syndrome

Read about the reality of suicide in Long Covid: COVID long-haulers are killing themselves as symptoms become too painful to bear — but support groups offer relief

Bronc is a former historian who is active in his local ME support group. He enjoys interviewing scientists involved in ME research to help himself and others better understand their illness.

 

It seems like the lack of disability support for ME/CFS generally, would create a high propensity towards viewing one's life as burdensome. Or that one is a burden, to others, due to a lack of financial support.

And I try to imagine people who really struggle to pay for some type of health insurance, only to discover you just happen to be enjoying - the Illness that receives no treatment.

Is ME CFS treated as a pre-existing condition I wonder? So then- you have difficulties getting coverage, only to find out there is no real treatment, anyway.

The mere fact that my GP supports my diagnosis, even tho he isn' that engaged in MECFS, but is just enough to allow me to feel seen. I'm validated there. Frankly, my chinese herbalist is rather in- validating. So I've had to: armor myself for those visits. I go because his stuff helps me. I put up with: Why Are You so Anxious?

If I have an opinion about a topic, and try to articulate it, that gets described as anxious. By people who have endless opinions they are sharing.

 

First off, thanks is to be extended to all the researchers have undertaken the not-very-easy role of trying to help us. I'm sure you receive many askance looks just from your own peers, but know that we are so very glad to have you.

I'm a long-term sufferer of CFS/ME/FM probably somewhere near 35+ years. Mine began with a simple sneeze that changed my life forever. Of course I was young and naive enough to think I would recover.

In the meantime I had two neurological conditions that were discovered. The surgery for the first was horrendous to recover from. In the meantime I was ill with two separate viruses. From the time of the surgery I had severe chronic nerve pain...I still live with it today, although the volume is less.

I, myself, have attempted suicide. Not b/c I don't have a wonderful family, but your thinking is so confused that soon the only person you think about is yourself and being a burden to others. So I understand both the suicidal mind and that of those the person is closest to. Obviously in my case it didn't take, and yes, I was one of the lucky ones.

I'm not here to lecture anyone, there is so much pain involved in so many different ways. It changes lives forever, it makes us think of the deeper issues of life at a much earlier time...it can also turn us into more caring and loving human beings to those who haven't experienced much grief. We "become"....is how I like to phrase it. We become different wives, husbands, children and yet we also have a way of looking a things that is so different than we were capable of before. We become the most human of people.

I came along at a time when even gabapentin didn't exist. There was nothing apart from elavil (didn't work for me). Today we do have pain doctors (yes, one more doctor), there are other drugs that can tone down the volume of pain, myofascial therapy (very gently done), osteopaths who specialize in myofasical work, psychologists who know about the illness (and I would encourage therapy even if you have to wait a long time for sliding scale fee therapy...it can be expensive if paying on your own), a caring family, forever changing your expectations of what life may offer you at any given time....so, you'll never be the mother to older teens, grandmother you expected to be, the wife who always worked and would have decided what her future would be, probably involving setting up a practice of her own, with more education along the way. But you are still capable of doing your very best...and we do it.

I can't tell you how wonderful it is to have a doctor who believes us, has the latest up-to-date info, is willing to try new therapies and, above all, is kind and shows us care and respect. At some point, I didn't even expect a cure for myself, but I thank you, the researchers, for trying to find one for those younger than I am. Because yes, we care very much for other people and I, for one, feel that may be the best legacy I'll ever have. We learn. Yours, Lenora.

 

Thank you. Love the photos. It might be good to steer gently away from Action for ME. Their reputation among patients is pretty bad, because they helped to finance the PACE trial, They may be re-branding however. That takes time and glossy full-colour hand-outs may not help, but then again, they may. The problem with getting anyone to talk about differential diagnoses of depression, etc. is vast. Surveys don't reach the severely ill, as you know, and many people feel that a mental illness and/or dementia diagnosis is less stigmatizing. But you know this already. People just disappear and sometimes the family lets people know the cause of death. Often they don't. Sometimes it's just a quick trip to somewhere alone, such as another room where they can do what many other people do who are more mobile. I'm not sure if physical pain levels may not be the best predictor, along with medical gaslighting, poverty, isolation and homelessness? Best of luck to you!

 

This is such an important topic that has been under-studied for so long.

I'm so glad Leonard Jason and team are talking about it.
They seem to use objectivity to study empathy, which is not easy to do.

Excellent article @Bronc !

 

Where does a person go to, or call when they need such care and treatment. Especially when they have no one to listen or care...

I too appreciate the work Dr. Jason is doing. How many have and will die by finally calling it quits out of pain, exhaustion and despair? Is there a place to go to?

 

Where dies a person go to, or call when they need such care and treatment. Especially when they have no one to listen or care...

I too appreciate the work Dr. Jason is doing. How many have and will die by finally calling it quits out of pain, exhaustion and despair? Is there a place to go to?

It is also to be mentioned, that since most doctors and the public don't believe in ME/CFS, so many of us suffer alone. Thus, there comes a point where many people give up and KNOW that ME/CFS is just a joke to normals, so, that they decided enough is enough. Parents are dead, no significant other is in their lives, and old age would be a nightmare with ME/CFS, so they decide to off themselves, before things become even worse, in old age.

 

Thanks to those of you who responded to my post. When I was young, I intended to work until 70 years of age.
I contracted ME/CFS at 40 years of age. I was lucky enough to have gotten better over the course of one year and went back to work, having to crash on my days off. Unfortunately at almost 60 years of age I found that I couldn't work anymore, after trying so hard to do so. I tried so hard to keep working, but my body has said NO.

I had to take SS disability at 61, although I didn't want to do so.

My memories are already fading, and I won't end up in someplace that they put Alzheimer/dementia patients. I will push it as long as I can do so.

 

Hello @Rvanson.....We've been in contact before about this very matter.



May I suggest that perhaps it's time for you to check into a nursing home (or a section below that) where you'll have people to converse with, some comings and goings and meals that are prepared for you.

No, I'm not saying that it's something we would choose to do, but there does come a point when most of us will end up in these circumstances....healthy or not. Perhaps what you really need is companionship of one sort or another. I really don't know, so can't help you out there.

I expect that I'll end my life in such a place and have tried to make peace as much as possible with the thought. This is the end of life and we have to face it at some time or other. Relatives and old friends die, things change....sometimes rapidly, and we must remain flexible.

Remember that all human beings are in this situation at some time or another. Yours, Lenora.

 

@Rvanson.....Good Morning. Just because you're going into care does not mean that you'll be put in with Alzeheimer's patients (many of whom function fairly well for a long time). I'm talking about finding a place where you'll feel comfortable being in the general population.

I visited a number of them when my mother was ill. The first floor she was on was rehab....and it did help her (she'd had a severe stroke). She then moved in with the general nursing home population and generally adapted quite well (she was a quarrelsome sort of person anyway), she didn't want to live with any of us (9 of us then) and simply wanted to be in her own home. We had tried that and it just didn't work out even with nursing care coming in a number of times/wk. Something was always wrong and finally there was no choice.

But that was a nice place and she had plenty of visitors, her roommates were nice and no, while I wouldn't want to be there, it wasn't horrible in the least. It didn't smell, a lien was put against her house (meaning she kept it while alive) and there were actual times when she did return home to live. So all is not lost and maybe you just need to be taken care of for a short time. I don't know your situation.

Join in activities....there is usually someone playing the piano and people are gathered in that room. The ones I saw were rather alive and frisky....could definitely carry on a conversation, dance, etc. If you play cards, you have a group waiting for you...at least try one.

I'm sure that CA has someone who could be given your case, advise you about different places and what you can expect. You're still somewhat on the young side and you'll at least have companionship. The families of other patients were always kind and would bring treats for others, as we did. Like I said above, this is something that we'll all have to face, no matter if we have ME or not. A chaplain or substitute comes in every day....so, it's not your belief system, but they don't talk that much about religion anyway (they follow your lead). You may be pleasantly surprised.

Now is not the best time to go (COVID, etc.) but do try to get in touch with someone in the Aging Dept. near you. We still have our choices....do we stay alone in a house that just throws off memories of the past with someone coming in once/day, Meals on Wheels?.....or do we look for something better than that? Each of us is an individual, I'm not saying it's easy but we are all going to be faced with it at some point....it's part of life. Yours, Lenora. (One other thing: Do the neighbors know your situation? Have they been told directly? Sometimes it takes a nudge or two, but it's definitely worth it.)

 

No, the neighbors are normal, with kids and grandchildren. I found out a long time ago that it's only going to harm me if I said anything. They might even think it's contagious, what with Covid-19 and the so-called "long-haulers".

I've not found anything to make me believe that, at least not in my case, becoming servery ill 5 hours after a meal at a restaurant. I am distrustful of both government workers and medical professionals, particularly the PSYCHO-logical "experts" that we with ME/CFS are sent to, and after a very awful incident in 2020, in which I have seen how careless people are treated by these quacks, simply so they can make lots of money off of our suffering.