My Name is Myalgic Encephalomyelitis

January 2, 2020

Pushing your limits is often seen as a way of committing to your own personal development, but it can have a serious negative impact on your personal life and health, especially if you have a chronic illness.

 

In every case, Myalgic Encephalomyelitis limits how much you can get done in a day. You start with limited energy levels, and when you add in things like chronic pain and immune problems, everyday tasks can drain your batteries before you even get started.  Learning to manage your energy levels is essential when living with ME. You get used to checking in with your body, assessing how much any activity will cost you, and creating a kind of energy budget to figure out exactly what you can get done without pushing your body past its breaking point. But what happens if there is no way to balance our budget?  For those with ME, our energy levels are bankrupt.

 

This is a huge challenge in cultures that place a premium on constant productivity. Chronically ill patients often end up going into energy debt trying to keep up with what’s expected of them. Pushing your limits is often seen as a way of committing to your own personal development, but it can have a serious negative impact on your personal life and health, especially if you have a Myalgic Encephalomyelitis which causes serious medical issues if you don’t learn your body’s signals.

 

Myalgic Encephalomyelitis is also unpredictable. It’s one thing to manage your finances when you know how much money is coming in every month, but as our health deteriorates , making long-term plans becomes a lot more difficult without that certainty.  Similarly, when the level of your income relates to your chronic inability to produce energy, you often find yourself in a position of having to create weekly or monthly energy budgets without knowing what resources you’ll have at your disposal from one day to the next. 

 

When your illness is invisible, you often face doubt from the people in your life. The quote “I was told I was being ridiculous and over dramatic, that I was ‘letting everyone down and setting a bad example  by not pushing myself,” is repeated by everyone who has the misfortune of living with M.E..  When you’re chronically ill, it often feels like doubt rules your life. People doubt that you’re sick. They doubt how hard you’re trying. They doubt that you’ll follow through on advice and eventually, you begin to doubt yourself.

 

One day you are fully capable of a task while the next day you struggle with generally simple things like brushing your teeth or getting dressed.  M.E. is so cruel that our challenges change from minute to minute.

 

When your abilities change so dramatically from one moment to the next, you can end up questioning your own grip on reality. You know none of this is your fault, but deep down you can’t help but wonder if maybe, somehow, it is.

 

For many with M.E., it takes years to receive a diagnosis.  For autoimmune disorders, the average wait time is 4.6 years. For people with rare diseases, it’s 7.6 years.   For me, it took less than 3 months but I know some who struggled through more than 25 years to figure out what was going on and in some cases patients are still waiting long past the 25 yr count.

 

Accessing needed healthcare is also the most frustrating part—because it’s the one you have the least control over.  An incredible support structure is required from family and friends, finding the right doctor and the disabled community itself is needed to access knowledge as well as the strength to research or fight for the answers  needed, even when it felt too exhausting to keep going.

 

A chronic condition is a human health condition or disease that is persistent or otherwise long-lasting in its effects or a disease that comes with time. The term chronic is often applied when the course of the disease lasts for more than 3 to 6 months. Common chronic diseases include arthritis, asthma, cancer, chronic obstructive pulmonary disease, diabetes, some viral diseases such as hepatitis C and acquired immunodeficiency syndrome, Myalgic Encephalomyelitis and more.

 

People with chronic conditions pay more out-of-pocket; a study conducted in the United States found that people spent $2,243 more on average. The financial burden can increase medication non-adherence.

 

The growing number of persons suffering from major chronic illnesses face many obstacles in coping with their condition, not least of which is medical care that often does not meet their needs for effective clinical management, psychological support, and information. The primary reason for this may be the mismatch between their needs and care delivery systems largely designed for acute illness.

 

But there’s a larger problem that very few are watching; the name game and biased science.  Constantly changing the name of Myalgic Encephalomyelitis to Yuppie Flu, CFS, ME/CFS, IOM/SEID, MUS, FND and ignoring the ICC 2011 criteria meticulously researched and written by International ME Experts for ME patients so they could be diagnosed accurately and quickly, has overwhelmed the opportunity of studying and using appropriate treatment to manage the symptoms.  Name & Criteria changing has opened the field for Charismatic Opportunists to make money from the pain of those afflicted.  Biased Science supports the system of "finding a cure" and supplies methods to enrich careers and reputations.   

 

In the words of Dr Carruthers who led the teams to produce the CCC 2003 and the ICC 2011:

 

 “If such clarity and adequacy are not achieved, several types of smudging may result. In other words, if the generalizations from the medical model are too generic, they have no chance of adequately meeting the patients' experience of illness and much relevant data may be overlooked or misinterpreted.  Thus, the move from a more specific clinical concept such as Myalgic Encephalomyelitis or Fibromyalgia to a more generic concept such as Chronic Fatigue Syndrome or Chronic Pain Syndrome entails missing a lot of the information that makes the syndrome a name match, and an experience.

 

The syndrome as an experience is a coherent entity whose parts run together as a process—as the word syndrome indicates etymologically—and whose causal interactions are sensed directly in the mode of causal efficacy. This entity arises against a background that is treated as a non‐entity for the purposes of the observation.

 

Thus, the attempt to organize clinical activity around a non‐entity, such as in somatisation disorder and Munchausen syndrome, where diagnosis depends on the absence of an entity, may interfere with proper clinical activity by importing a misplaced forensic attitude towards a patient's experience of illness, discounting or distorting its relevance. The move towards ignoring the distinctions between primary and secondary which designate sensed causal directions in a clinical entity, whether applied to depression, anxiety, infection or Fibromyalgia, add to the confusion and impede the elucidation of a properly

dynamic clinical entity.

 

The widespread use of the holistic biopsychosocial model of disease without any distinction between a clinical entity and its background encourages the “drowning” of clinical entities by risk factors, which can proliferate endlessly in a nominalist fury without orientation as to their state of relevance or lack thereof with respect to a real entity." 

 

 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1860613/

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