My experience with ME/CFS and implications: A personal narrative, 2023, Sirotiak

[SNT Gatchaman]

My experience with ME/CFS and implications: A personal narrative
Sirotiak Z

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a chronic, debilitating health condition characterized by overwhelming fatigue and post-exertional malaise, or exacerbation of symptoms following physical, mental, or emotional exertion. ME/CFS often impacts every aspect of an individual's life, and one's new reality may be much different from the daily life experienced before the onset of the condition.

Though the long-term effects of COVID-19 have brought increased attention to chronic fatigue and related disorders, ME/CFS is still vastly understudied and frequently misunderstood. People with ME/CFS are often passed between various healthcare providers as evidence-based treatments remain scarce. These patients are sometimes sent to rehabilitation professionals, who often lack appropriate education and experience with this patient population.

This article describes the experience of a young woman and physical therapist with ME/CFS following COVID-19 infection, as well as potential implications for rehabilitation professionals and those who care for those with this condition.

PubMed | Link | PDF (Work)

 

[MeSci]

Beautifully written, very well put.

 

[DigitalDrifter]

Beautifully written, very well put.

I have to disagree.

While extreme fatigue is considered a hallmark symptom of this condition, other symptoms are common, including issues with sleeping, 'topaches, cognitive dysfunction, flu-like symptoms, shortness of breath, autonomic dysfunction, gastrointestinal distress, and muscle and joint pain [2, 3]. Post-exertional malaise (PEM), or worsened symptoms following physical, mental, or emotional exertion that would not have caused aggravation before becoming ill, is an important component of ME/CFS [4]. These episodes of worsened symptoms may be described as a “crash,” and recovery may take days or weeks

She makes the mistake of defining ME as fatigue not PEM. She ignores LTSE, what about patients like me who experience permanent deterioration from trivial exertion? This is why I think there is an urgent need for a new diagnosis for patients like me, ME has been hijacked by fatigue enthusiasts.

ME/CFS also frequently presents with comorbid conditions, often other complex, chronic conditions such as fibromyalgia, irritable bowel syndrome, myofascial pain syndrome, and interstitial cystitis

They are all considered psychosomatic by most medical professionals so it's best to avoid any association with them.

 

[sarahtyson]

She is describing her own experience, so it's maybe to be expected that the text doesn't cover the full range of the way it can affect people. Its so varied I'm not how that could be captured.