contributed by Dr. Lily Chu

Contrary to popular belief, up to 50% of people who die by suicide may not be affected by a mental health condition. A substantial majority though had visited a healthcare provider in the previous year. These findings suggest that physical health, and not only mental health, may impact suicide risk.

One physical health condition that may increase suicide risk is myalgic encephalomyelitis/ chronic fatigue syndrome (ME/CFS). In fact, suicide may be the number one cause of death for people afflicted by ME/CFS. Most of the public and many healthcare professionals have never heard of this disease. Others might have been exposed to wrong or obsolete information. Crisis center staff and volunteers may encounter callers affected by ME/CFS. We share basic facts about ME/CFS and concrete steps crisis centers can take to help callers. By the end of this post, you will know more about this disease than most physicians!

Have you ever heard of or read about ME/CFS? Share your thoughts, experiences, and questions by commenting below. [LC1]

What is myalgic encephalomyelitis/ chronic fatigue syndrome (ME/CFS)?

ME/CFS is a chronic, complex, medical condition which affects at least a million Americans. That makes it more common than better-known conditions like multiple sclerosis or Parkinson’s disease. In the past, ME/CFS was believed to affect primarily upper-middle class, Caucasian, middle-aged women. Later studies showed that people of both sexes and all ages, races, and socioeconomic background can be affected.

ME/CFS often strikes people in their teenage or early adult years following common infections like Epstein-Barr virus mononucleosis (popularly called “mono”). For reasons we don’t understand yet, about 10% of people who fall ill do not recover and develop ME/CFS in the subsequent days to months. Current evidence does not suggest ME/CFS is contagious. Rather a persistent dysregulation of the immune system may have resulted in uncontrolled/ re-awakened infections or an autoimmune process in the sick individual.

What are common symptoms?

Common symptoms include severe fatigue, problems thinking, unrefreshing sleep, and skipped heart beats/ dizziness while standing still/ sitting up. Some patients also experience muscle/ joint pains, headaches, sore throat, flu-like feelings, irritable gut/ bladder issues (e.g. nausea, urinating frequently), and/ or hypersensitivity to stimuli (e.g. sound, light).

The hallmark symptom of ME/CFS is post-exertional malaise (PEM). PEM is an exacerbation of some or all of the aforementioned symptoms after seemingly minor cognitive or physical activities. PEM can be triggered by activities as mild as reading a blog post, talking with a friend, walking a block, or taking a shower. Recovering from PEM may take hours to weeks depending on the individual patient and the preceding activity.

All patients are limited in at least one major sphere of functioning. Up to 81% are unable to work and 25% are bedridden or homebound, needing help with daily tasks like dressing or cooking. In the United Kingdom, ME/CFS is the top cause of long-term, health-related school absence for children. Data is currently being collected for children in the US.

How is ME/CFS diagnosed?

It is estimated that over 85% of patients have not yet been diagnosed. Diagnosis relies primarily on evaluating whether patients’ presentations and symptoms match that for ME/CFS and eliminating alternative diagnoses via clinical interviews, physical examination, and diagnostic tests. Although hundreds of studies have demonstrated immunological, neurological, endocrinological, and metabolic abnormalities in patients, an easily available, valid test for the condition does not yet exist. To help clinicians diagnose ME/CFS, the United States’ National Academy of Medicine published a short guide in 2015.

Many healthcare providers have also not been educated about ME/CFS or were given dated information. Thus, some patients have had their symptoms downplayed or ignored while others have had their symptoms incorrectly attributed to depression, illness anxiety disorder (formerly hypochondriasis), or personality issues (e.g. laziness, malingering). People who are diagnosed often describe a long, complicated journey to obtaining an answer.

How is ME/CFS treated?

Although there are no current disease-modifying treatments for ME/CFS, there are many steps clinicians can take:

Teach patients to balance active periods with rest. Activities may need to be reduced or modified to maximize function while minimizing PEM. Exact suggestions will need to be individualized to the patient. Support patients’ applications for work/ school accommodations and assistive device/ services (e.g. home health aides, wheelchairs, canes). Palliate symptoms such as pain and sleep. Identify and treat common comorbidities. Like other groups affected by chronic physical illnesses, 20%-50% of ME/CFS patients may suffer from co-morbid depression or anxiety. Two major distinguishing factors between ME/CFS and mood disorders are: a) most patients with ME/CFS want to participate in life but cannot because of their symptoms and b) physical exercise worsens, instead of improving, ME/CFS. Treating these and other co-existing conditions effectively can improve function and quality of life for patients.

Importantly, within the last 5 years, there has been a paradigm shift in the way ME/CFS is viewed and treated. For the prior 3 decades, the recommended treatments were graded exercise therapy (GET) and cognitive behavioral therapy (CBT). Proponents of GET and CBT believed that patients were merely deconditioned from lack of exercise or that patients’ incorrect/ exaggerated ideas about their own health perpetuated their illness. This led to some tragic situations internationally where patients were involuntarily admitted to psychiatric facilities for “self-harm” if they refused GET or CBT. In the United States, children have been legally separated from their parents for “child neglect” when the latter refused to subject them to either intervention. Over time, physiological studies, re-analyses of trial data, clinician experiences, and patient surveys have demonstrated that both therapies are not only ineffective but could worsen ME/CFS. In 2017, the US Centers for Disease Control and Prevention (CDC) and some institutions finally removed CBT and GET from their resources. However, some healthcare organizations are not yet aware of these changes and continue to promote CBT/ GET.

(It is unclear why the role of CBT was distorted in ME/CFS. For physical health conditions (e.g. cancer, heart failure, etc.), CBT is prescribed to help patients cope with their illness, not reverse the physical health condition. It is also not mandated for all patients.)

Why might suicide risk be increased in ME/CFS?

The severity of symptoms may make life intolerable. Poor health isolates patients. Even for those able to leave the house, symptoms limit the activities (including conversation) they can engage in with others. Multiple varied losses, including health, financial security, identity, relationships, housing, etc. lead to despair and hopelessness. Lack of validation, support, and appropriate treatment from healthcare professionals. Some symptoms can be alleviated effectively. Co-morbid depression and anxiety as mentioned previously. Reluctance to seek mental health care because of stigma surrounding psychiatric disorders and incorrect misattribution of ME/CFS symptoms to mental health issues.

What can hotline staff and volunteers say or do to help callers specifically affected by ME/CFS?

We focus on areas especially important or unique to ME/CFS.

Listen to and validate patients’ experiences. Mention you have heard of ME/CFS and understand it is a chronic, physical health condition that often has devastating consequences. Sadly, most callers might not have received even this simple acknowledgement from their doctors and families. It is perfectly fine to admit you have just heard of and are still learning about ME/CFS. Gently probe why they are feeling suicidal and offer possible solutions corresponding to the reason. If patients are feeling lonely, refer them to electronic patient forums such as Phoenix Rising, ME Action, or Health Rising. If they are seeking more information, Solve ME/CFS, cfidsselfhelp and ME Action offer patient-oriented materials while the International Association for CFS/ME and Frontiers published adult and pediatric guides which can be shared with healthcare professionals. If they have financial concerns, the site How to Get On is a treasure trove of information directed at ME/CFS. Compliment them for seeking help and educate them about how your crisis center works. Ironically, the incorrect attribution of ME/CFS to psychological or psychiatric causes likely has driven patients away from seeking much-needed mental health care. It is doubly tragic for those patients who area affected by co-morbid mood disorders. As outlined above, callers have legitimate reasons for fearing that they may be involuntarily hospitalized against their will in a facility with no understanding of ME/CFS. Thus, educate them about suicide assessment and emphasize that help can come in forms other than involuntary inpatient admission. Of course, some situations will demand that you contact immediate responders.

To learn more ME/CFS and how you can help, join us April 30, 2019 at 1:30PM EST for a webinar hosted by the National Suicide Prevention Lifeline.