Category: Personal Accounts

My experience of chronic fatigue syndrome

Anonymous 16-year-old:

Chronic fatigue syndrome (CFS) is exactly what it says on the tin: it is an extreme tiredness (loss of energy and motivation) which can lead to extreme difficulty or an inability to complete basic functions. Other symptoms include sleep problems, problems thinking/remembering, headaches, dizziness and heart palpitations. As you can imagine, these symptoms have a severe impact on a person’s life and often lead to a sudden or extreme change in lifestyle (eg, time outside, time in bed, time seeing friends, etc).

The severity of CFS can often fluctuate and people with CFS typically experience a ‘boom and bust’ cycle, in which they have ‘boom’, a sudden burst of energy and (as a result) activity followed by a bust, a period of worse than usual fatigue and extremely low levels of activity.

CFS isolated me to my bed where I often had no energy to move, to talk or even to think. If I ever had enough energy to leave my bed, it would only be for an hour or two and I would often spend double or triple that time resting up again before I could consider leaving my bed again. The fact that I spent basically all day in bed meant that by night-time, although I still had no energy to do anything, I was not physically worn out enough to sleep, meaning for some time I was practically nocturnal. It also meant that school was almost impossible to attend: I missed several terms and had an attendance rate of 20%. Schoolwork—which I could rarely attempt to complete—would take three times as long as usual; it was as if I were mentally trudging through treacle in subjects in which I was previously able to sprint through.

Source: My experience of chronic fatigue syndrome. BMJ Paediatr Open. 2021 Jun 25;5(1):e001165. doi: 10.1136/bmjpo-2021-001165. PMID: 34250274; PMCID: PMC8237727. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8237727/ (Full text)

Extremely Severe ME/CFS—A Personal Account

Abstract:

A personal account from an Extremely Severe Bedridden ME/CFS patient about the experience of living with extremely severe ME/CFS. Illness progression, medical history, description of various aspects of extremely severe ME/CFS and various essays on specific experiences are included.

Source: Dafoe W. Extremely Severe ME/CFS—A Personal Account. Healthcare. 2021; 9(5):504. https://doi.org/10.3390/healthcare9050504 https://www.mdpi.com/2227-9032/9/5/504/htm (Full text)

Living with ME/CFS: Robie’s Story | ME/CFS Alert Episode 99

Llewellyn King interviews 42-year-old Robie Robataille. In this video Robie talks about her difficulty in getting a diagnosis and her gradual decline to the way she lives now: She takes a couple of hours to wake in morning and can only stomach a shake made by her parents.

She speaks frankly about the loneliness of the disease, and how her two dogs and two cats mean so much to her; where one would long for human touch, she has only the caress of her animals. Robie tells the story of her decline over 15 years to a point, four years ago, when she had to abandon her home and life in Texas to be taken care of by her parents in Wrentham, MA.

Love Means Never Having to Say … Anything

By Jamison Hill, New York Times, May 25, 2018

After dating Shannon for several months, I needed to say something to her, but I couldn’t. It’s not that I was nervous or unsure of the phrasing. It’s that I couldn’t speak. My lungs and larynx couldn’t create the air pressure and vibrations needed to say the words floating around my mind.

This is our reality. I can’t talk to Shannon about anything — not the weather or her day or how beautiful she is. Worst of all, I can’t tell her I love her.

You can read the rest of this moving essay HERE.

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About the author: A graduate of Sonoma State University, Jamison Hill is a former bodybuilder, model, and fitness instructor. He has written for, among others, The Washington Post, Men’s Journal, The Los Angeles Times, Vox, Quartz, VICE and The New York Times. Jamison appeared in the documentary, Forgotten Plague, and his story is featured in an upcoming Netflix documentary about mysterious diseases. He writes about living with Chronic Fatigue Syndrome and Lyme disease at JamisonWrites.com. Jamison is currently finishing his memoir, When Force Meets Fate.

Caring for people with severe myalgic encephalomyelitis: An interpretative phenomenological analysis of parents’ experiences

Abstract:

Experiences of parents who care for sons or daughters with severe myalgic encephalomyelitis are rarely discussed within the literature. Narratives of parent-carers in Lost Voices from a Hidden Illness were analyzed using interpretative phenomenological analysis. This study aimed to give voices to those who care for individuals with myalgic encephalomyelitis and are often stigmatized and inform future research supporting parent-carers. Results included themes of identity change, guilt, feeling like outsiders, uncertainty, changing perceptions of time, coping mechanisms, and improvement/symptom management. Findings could inform the development of carer-focused interventions and provide vital information to health professionals about parent-carers’ lived experience.

Source: Mihelicova M, Siegel Z, Evans M, Brown A, Jason L. Caring for people with severe myalgic encephalomyelitis: An interpretative phenomenological analysis of parents’ experiences. J Health Psychol. 2016 Dec;21(12):2824-2837. Epub 2015 Jun 10. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4675701/ (Full article)

A patient’s journey with myalgic encephalomyelitis

Myalgic encephalomyelitis (ME) presents patients and their general practitioners with the challenge of managing a life shaped by chronic debilitating illness, pain, and uncertainty. The notion that body limitations resulting from illness must be recognised is shown in the literature on chronic illness, but at the same time it is necessary to understand the social context of change and diversity within which illness is conceptualised. People give meaning to their illness and altered life course with reference to socioeconomic relations, cultural perceptions and beliefs, and their interactions with health and social care services.

Myalgic encephalomyelitis represents the conundrum of uncertainty in the diagnosis, treatment, and prognosis of the disease. Many of the symptoms that people present with could be indications for other diseases, making it difficult to diagnose. Moreover, there is still some debate about the existence of the disease as a clinical category. Current guidance focuses on the symptoms of fatigue and malaise, cognitive impairment, and pain. The patient’s account in this paper was collected as part of a research study on osteoarthritis of the knee. The patient, Daphne Evans, was interviewed by BNO, but the discussion centred on myalgic encephalomyelitis because she considered this condition of primary importance. Her doctor’s account was added to her own account when the paper was drafted.

 

Source: Ong BN, Evans D, Bartlam A. A patient’s journey with myalgic encephalomyelitis. BMJ. 2005 Mar 19;330(7492):648-50. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC554915/ (Full article)

 

Fatigue in chronic fatigue syndrome: a discourse analysis of women’s experiential narratives

Abstract:

Chronic fatigue syndrome (CFS) is a debilitating condition. Approximately 75% of sufferers are women. The etiology of CFS is debated, but remains inconclusive. “Fatigue” is ill defined and conceptually problematic. The international multidisciplinary literature on CFS reveals a paucity of studies on women. Qualitative research to analyze women’s discourses on CFS is virtually absent.

Eleven New Zealand women of European descent with experience of CFS were interviewed in depth. Within the complex facets of CFS, this article reports specifically on an analysis of discourses on “fatigue.”

The predominant theme that emerged was that fatigue is articulated as “lack” or absence, which is not representable as an identifiable entity in biomedical terms. Parallels with chronic pain are briefly drawn. We conclude that approaches to CFS must respond to the diverse and complex constructions of the experience of fatigue evident in women’s narratives.

 

Source: Hart B, Grace VM. Fatigue in chronic fatigue syndrome: a discourse analysis of women’s experiential narratives. Health Care Women Int. 2000 Apr-May;21(3):187-201. http://www.ncbi.nlm.nih.gov/pubmed/11111465

 

A 56-Year-Old Woman With Chronic Fatigue Syndrome, 1 Year Later

In June 1997, at the Medicine Grand Rounds, Dr Anthony Komaroff discussed Ms H, an educator unable to work because of debilitating symptoms associated with a 2-year history of chronic fatigue. Her ailment, which began shortly after a flu-like illness, was marked primarily by weakness, fatigue, chronic insomnia, and depression that she felt was in response to her symptoms. In recent years she had felt somewhat less depressed, and wondered also if the disease might be slowly diminishing in its severity.

You can read the rest of this article here: http://jama.jamanetwork.com/article.aspx?articleid=187800

 

Source: Thomas L. Delbanco, MD; Jennifer Daley, MD; Erin E. Hartman, MS. A 56-Year-Old Woman With Chronic Fatigue Syndrome, 1 Year Later. JAMA. 1998;280(4):372. doi:10.1001/jama.280.4.372. http://jama.jamanetwork.com/article.aspx?articleid=187800

Coming to terms with ME

Abstract:

Myalgic encephalomyelitis (ME) is a chronic, severely disabling condition, but one which is little understood and about which there are many misconceptions. Former health visitor Anne Hoad, diagnosed with ME in her mid-50s, describes her own struggle to come to terms with the illness and the limitations it has placed on her life.

 

Source: Hoad A. Coming to terms with ME. Health Visit. 1994 Sep;67(9):302-3. http://www.ncbi.nlm.nih.gov/pubmed/7960845

 

A personal encounter with a mystery illness

Abstract:

I urge all practitioners to accept that ‘chronic fatigue’ patients have genuine symptoms. This disease can cause depression, but for most patients it is not caused by depression. I acknowledge that a depressed patient can develop the chronic fatigue syndrome in the same way that they can contract any other disease. If you are unable to diagnose a patient with these symptoms please refer them to a centre specialising in this devastating and poorly understood disease.

 

Source: Lopis R. A personal encounter with a mystery illness. Aust Fam Physician. 1991 Mar;20(3):316-7.  http://www.ncbi.nlm.nih.gov/pubmed/2039419