An excerpt from an advocacy paper I wrote, in which I tried to articulate some of the challenges of living with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) from a mental health perspective.
Target Population
The target population includes persons with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and their community of family, friends, and caregivers, as well as mental health professionals unfamiliar with the nuances of this invisible chronic illness.
Rationale
ME/CFS is a poorly understood invisible chronic illness, and persons living with it often encounter a host of unique challenges, including loneliness, medical skepticism, inadequate funding and social supports, limited treatment options, uncertain health outcomes, drastically altered personal relationships, and the grief of missing out on normal life activities and goals.
Some research suggests that persons with ME/CFS have a lower health-related quality of life score than even persons with cancer, diabetes, lupus, or heart disease (Hvidberg et al., 2015). And yet, despite its biological underpinnings, ME/CFS has often been portrayed – in medical circles and in the general public – as a psychological disorder that’s “all in the mind” (Froehlich et al., 2022).
Mental health providers should be aware that ME/CFS is a complex biological disease often triggered by infection, and be able to distinguish it from psychological disorders like depression and anxiety (while also recognizing that depression and anxiety often arise secondary to the pain of living with ME/CFS) (Daniels et al., 2017). They should also be aware of the implications to daily living of a mild, moderate, or severe ME/CFS diagnosis, so that they can sensitively support clients suffering with this invisible disability.
Many “long-haul COVID” patients are now experiencing the symptoms of ME/CFS (Komaroff & Lipkin, 2023), so the need for advocacy is especially great. As a personal aside, I myself have been struggling with post-viral symptoms for the last few years and can attest that the obstacles they pose to daily functioning are considerable. Raising awareness of ME/CFS, and validating the severity of its impact, can go a long way toward relieving the burden of individuals who feel stuck wondering whether they might be exaggerating their symptoms or “making it all up inside their heads.”
Problem Identification
A very simple and basic problem emerges in the discussion of ME/CFS – namely, that many people don’t even know it exists. Or, if they do, they have a mistaken idea of what it entails. The name of the disorder – “chronic fatigue syndrome” – does the community of sufferers no favors, as it tends to reduce perceptions of the illness to “simply feeling a little more tired than usual.” So the first issue to address is the issue of insufficient awareness regarding the reality of a ME/CFS diagnosis.
A second issue involves the disentanglement of ME/CFS from mental health conditions with overlapping symptoms. Although living with ME/CFS can have psychological impacts, it is not primarily considered a mental health disorder. It is important for counseling professionals to accurately distinguish between the symptomology of an ME/CFS “crash” and the clinical presentation of, for example, a depressive episode. At the same time, counselors should be alert to how and when ME/CFS co-exists with mental health disorders, and should understand how this chronic physical illness might change the presentation of existing psychological conditions (like the manic phases of bipolar disorder).
A third issue centers on client education and empowerment. Too many persons with ME/CFS have been convinced that their symptoms aren’t “real,” or that they should just be “powered through.” Counselors have an important role to play in giving clients the tools they need to articulate their struggle to both family members and medical professionals and to advocate for themselves in an informed and compassionate way.
Problem Background Information
Barriers to advocacy exist at multiple levels. At the level of science, we encounter the problem of scarcity; much remains unknown about ME/CFS and it is hard to locate the exact causes and mechanisms of illness. As a result, treatment options remain limited, and many doctors are poorly equipped to help patients who present to their offices with the complicated mix of symptoms that accompany this diagnosis. The lack of treatment options can diminish hope and pose an extra challenge for counselors as they walk their clients through the process of confronting and accepting a long-term diagnosis with mixed chances of recovery. Fortunately, scientific research continues to uncover new strands of understanding, and a fuller, more nuanced picture of ME/CFS, as a sort of neuro-immuno-endocrinological dysfunction (Rivera et al., 2019), is beginning to emerge. Increased research efforts in the wake of the COVID pandemic are yielding more and better insights into this complex condition, and it would be wise for medical professionals, including counselors, to keep abreast of such developments.
At the level of culture, we experience the problem of stigma. As mentioned earlier, many people don’t know enough about ME/CFS to respond to it effectively. Too often, individuals with this chronic illness are told that they are depressed, or that everyone is tired, and they need to stop being lazy and push through their fatigue. In fact, a hallmark of ME/CFS is a phenomenon called post-exertional malaise, and symptoms are exacerbated, rather than helped, by “pushing through.” Even well-intentioned suggestions, like increasing physical exercise, can backfire and lead to progression of the disease state. Counselors, in particular, should be mindful of this complexity, and revise their inventory of recommended coping skills accordingly.
At the level of systemic care, we encounter the problem of medical skepticism. Although ME/CFS is gaining recognition in the medical community, many doctors still treat the diagnosis with indifference or disapproval. The Social Security Administration, meanwhile, does not include ME/CFS among its list of pre-approved impairments, and many patients experience significant barriers in trying to obtain disability benefits. Because ME/CFS can severely limit a person’s ability to work, financial stress is common. Unfortunately, current structures make access to governmental support more difficult than it ought to be.
Finally, at the level of diversity, we must consider the impact of socioeconomic variables. For those living in poverty, or with reduced economic means, the burden of chronic illness often feels heavier. In particular, individuals in financial hardship may have less possibility of lightening their work schedules, or of sharing the responsibility for generating family income, and as a result, have less opportunity for the extended rest that is so critical to ME/CFS recovery. Reduced social supports (and hence access to caregiving) can also increase the challenge of living with ME/CFS, since the illness, especially in its more advanced stages, can make independent self-care difficult (Jason et al., 2010).
Advocacy Goals
Broadly, my goal is to educate counseling professionals on the signs and symptoms of ME/CFS, and to help them find ways of better serving clients with this condition. Part and parcel of this goal is training counselors in best practices: how to offer appropriate self-care strategies, how to differentiate ME/CFS from apparently similar psychological conditions, how to approach the unique consequences of living with a chronic and poorly understood illness, and how to accompany clients in their search for a meaningful life, even as their health problems may make their lives feel frustratingly small. Counselors should deepen their understanding of the role of therapy, including its limits, as an adjunct treatment for ME/CFS.
Another part of this goal is high-level advocacy. This may involve working in interdisciplinary teams to promote more effective care. Giving counselors the tools to educate other health professionals on the mental, emotional, and social impacts of ME/CFS will promote empathy, weaken skepticism, and improve outcomes for clients. It may also be important to work alongside social agencies to increase visibility of the ME/CFS diagnosis and to campaign for better access to governmental aid and/or other accommodations, as well as greater funding for relevant research projects.
Advocacy Allies
Several agencies and organizations come to mind when considering possible allies in our advocacy efforts. A few are listed here.
Ohio Counseling Association (OCA): “The premier professional organization serving and representing all current and future counselors.” OCA often offers a variety of educational experiences for both students and licensed professionals. This association could be a useful partner if we wish to expand our efforts state-wide, especially since our goal is increased training and education.
Social Security Administration (SSA): The SSA may not be a close ally in our advocacy efforts, per se, but they are an important resource when it comes to understanding disability services and benefits. Working with their office, as well as with the offices of local disability attorneys, may yield helpful insights for patients who are wishing to navigate the process of applying for governmental support as they cope with ME/CFS.
National Alliance on Mental Illness (NAMI): “The nation’s largest grassroots mental health organization dedicated to building better lives for the millions of Americans affected by mental illness.” NAMI is a great resource for advocacy, education, and awareness across a number of mental health conditions. While ME/CFS is not classified as a mental illness, it often has profound effects on mental wellbeing, and co-occurring mental health disorders are not uncommon. NAMI, especially its Ohio chapter, could be an excellent partner, and may be helpful to us if we wish to organize a “walk” or some other community/fundraising event.
Solve M.E.: The Solve ME/CFS Initiative is “a non-profit organization that serves as a catalyst for critical research into diagnostics, treatments, and cures for … ME/CFS, long COVID, and other post-infection diseases.” This initiative works closely with scientific communities, governmental agencies, and patient groups to improve the lives of affected individuals. Its mission is closely aligned with ours, and its substantial pool of resources (including a team of knowledgeable professionals) could greatly aid our research and outreach projects.
Trans-NIH ME/CFS Research Working Group: This working group, operated through the National Institutes of Health, is designed to pursue high-quality research on the cause, diagnosis, underlying mechanisms, and treatment of ME/CFS. Their website offers helpful information on the process of submitting grant applications, and they would be a powerful ally in our efforts to increase awareness and supports at more systemic levels.
Patient Advocacy Groups: Patient advocacy groups, like the Massachusetts ME Association and the Long COVID Alliance, as well as other groups throughout the world, connect patients struggling with similar experiences and give voice to their concerns, wishes, questions, and needs.
Bateman Horne Center: A non-profit organization trying to improve access “to informed health care for individuals with ME/CFS, long COVID, and fibromyalgia by translating [their] clinical expertise into medical education and research initiatives.” The Bateman Horne Center offers extensive resources for patient and provider education (including videos, research initiatives, a support group, an ME/CFS crash survival guidebook, and crisis resources), and they would be a valuable point of contact for us, both as we prepare our own training materials and as we connect with professionals whom we would like to consult and invite to workshops and events.
References
Daniels, J., Brigden, A., & Kacorova, A. (2017). Anxiety and depression in chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME): Examining the incidence of health anxiety in CFS/ME. Psychology and psychotherapy, 90(3), 502–509. https://doi.org/10.1111/papt.12118
Froehlich, L., Hattesohl, D. B., Cotler, J., Jason, L. A., Scheibenbogen, C., & Behrends, U. (2022). Causal attributions and perceived stigma for myalgic encephalomyelitis/chronic fatigue syndrome. Journal of health psychology, 27(10), 2291–2304. https://doi.org/10.1177/13591053211027631
Hvidberg, M. F., Brinth, L. S., Olesen, A. V., Petersen, K. D., & Ehlers, L. (2015). The health-related quality of life for patients with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). PloS one, 10(7). https://doi.org/10.1371/journal.pone.0132421
Jason, L. A., Roesner, N., Porter, N., Parenti, B., Mortensen, J., & Till, L. (2010). Provision of social support to individuals with chronic fatigue syndrome. Journal of clinical psychology, 66(3), 249–258. https://doi.org/10.1002/jclp.20648
Komaroff, A. L., & Lipkin, W. I. (2023). ME/CFS and Long COVID share similar symptoms and biological abnormalities: Road map to the literature. Frontiers in medicine, 10, 1187163. https://doi.org/10.3389/fmed.2023.1187163
Rivera, M. C., Mastronardi, C., Silva-Aldana, C. T., Arcos-Burgos, M., & Lidbury, B. A. (2019). Myalgic encephalomyelitis/chronic fatigue syndrome: A comprehensive review. Diagnostics (Basel, Switzerland), 9(3), 91. https://doi.org/10.3390/diagnostics9030091