Notes

​

Accessibility-- I will do my best to make this website accessible. I'm new at this, so please be patient. If there is something I can do to make my site more accessible and welcoming for you, please let me knowScroll to the bottom of the page, and click on the envelope to send me a message. 

​​​​​

Glossary

 

"Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), is a serious, chronic, complex, and systemic disease associated with neurological, immunological, autonomic, and energy metabolism dysfunction (Institute of Medicine, 2015). Individuals with ME/CFS experience a range of symptoms including significant impairment in function, post-exertional malaise, sleep impairment, cognitive issues, pain, orthostatic intolerance, flu-like symptoms, sensory intolerance, gastrointestinal and genitourinary issues. Post-exertional malaise (PEM) is the hallmark of the disease in which even trivial amounts of activity result in a prolonged exacerbation of symptoms and a further reduction in function."  from The NIH definition of ME/CFS

​

From the ME Action Website: https://www.meaction.net/healthcare-providers

MAJOR SYMPTOMS INCLUDE

• Post-exertional malaise

• Unrefreshing sleep

• Cognitive dysfunction and/or orthostatic intolerance. 

 

Many patients also experience a range of other neurological, autonomic, and immunological symptoms either as a permanent feature of their illness or during a “crash” or flare. These symptoms include:

• Pain in the muscles and joints

• Headaches of a new type, pattern, or severity

• Cognitive symptoms such as confusion, difficulty retrieving words, poor working memory, spatial instability, and disorientation

• Sensitivity to light, sound or vibration, taste, odor or touch

• Gastrointestinal symptoms such as nausea or abdominal pain

• Muscle fatigability, weakness and fasciculation; poor coordination and ataxia

• Autonomic and endocrine symptoms such as poor temperature regulation, cold or heat intolerance

• Immune symptoms such as tender lymph nodes, recurrent sore throats, fevers, or flu-like symptoms, and new food or chemical sensitivities

MANAGEMENT

While there are currently no FDA-approved treatments for ME/CFS, many patients can live a higher quality of life if they have access to a healthcare provider who can help them:

1. Pace activity to minimize exacerbating symptoms 

2. Manage their symptoms such as neuropathies, pain, unrefreshing sleep, and orthostatic intolerance

3. Treat common comorbidities

 

Learn more about diagnosing and treating ME/CFS: Read the concise clinical review in the Mayo Clinic Proceedings. To delve deeper, read the ME/CFS Essentials of Diagnosis & Management in the Mayo Clinic Proceedings.

​

Spoon theory is a metaphor describing the amount of physical or mental energy that a person has available for daily activities and tasks, and how it can become limited. The term was coined in a 2003 essay by American writer Christine Miserandino. In the essay, Miserandino describes her experience with chronic illness, using a handful of spoons as a metaphor for units of energy available to perform everyday actions. The metaphor has since been used to describe a wide range of disabilities, mental health issues, forms of marginalization, and other factors that might place unseen burdens on individuals.

https://en.wikipedia.org/wiki/Spoon_theory

​​​

Resources

​One of the most comprehensive websites out there:

https://howtogeton.wordpress.com