PERSEVERE TO BE THAT ONE IN A MILLION: To Survive - To Get a Diagnosis - To Go On with Your Own Life. One Day at a Time.
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Invisible Illnesses: ME/CFS and "Systemic Exertion Intolerance Disease"
#DrMargaretAranda / In dedication to Luminescentfeeling Across the Pond and Still Oh! So Fond!
Is Myalgic Encephalomyopathy / Chronic Fatigue Syndrome (ME / CFS) a "real" illness? For decades, doctors questioned its existence (See Image 1).
Image 1. The Full Circle of Redefinition. After years of neglect and stigma, we now have come full circle. Some professionals still use "ME / CFS" as a specific term, with a newer term, "SEIDOR" it is being used more generally to include other Diseases such as Lyme's disease (CFS = chronic fatigue syndrome, ME = myalgic encephalopathy; SEIDOR = exertion intolerance systemic disease).
The Harm. Today, some doctors say:
"I do not Believe in it."
... I have not even "heard of it."
Think, "If I have not heard of it, than it must not exist . Therefore, the you are faking it. You are malingering."
"You need a psychiatrist."
... And do not feel alone. Millions of additional Hasta with other "Invisible illnesses" hear the same words.
That's the shriek, shock and shame of some of today's health care. Imagine yourself going to the Emergency. Envision the doctors en masse that repeatedly apply this phrase we all grow to hate (ie, patients with an Invisible Illness): "it's all in your head " (See Image 2).
Image 2. "It's All in Your Head." But now, guess what, Mrs. Gomez? And guess what you'll be glad to hear, Mr. Lee? It's not 'all in your head.' Luminescentfeeling was right all along. Image Courtesy Google Search.
The Diagnosis. Sure patients present with elusive SYMPTOMS such as fatigue, sleeplessness, "brain fog," dysfunction of the autonomic nervous system, pain and other neurologic signs. These gleefully rampage the human body without warning or token, in a vibrant trading life for one with virtually no quality of life to be found. Now, that is not elusive to the patient. T he human mind is traumatized not only by the illness, but by the manner of disrespect and lack of compassion that is repeatedly inflicted by the medical field ... and than another trigger occurs in an instant, sending shivers and shakes of Post-Traumatic stress Disorder (PTSD), shattering through the mind and body as yet another Emergency Room doctor stares blankly at the patient, assessing that surely she is inordinately insane.
After a February 10, 2015 multi-institutional effort was convened, the world did not know (and still does not) that 'ME / CFS' was to be rocked to the core by multiple 'Big Boys' of the Institute of Medicine (IOM ). They were mandated to meet, confer, conclude, and advise on the answers to solve the problems of ME / CFS - after reviewing 65 years of CFS research described in over 9,000 scientific literature Manuscripts. Wow, right?
Image 3 Stanford University's ME / CFS Initiative: Explaining Invisible illnesses as Infectious Diseases. Work done by other scientists Frissora and Koch (2) and Chia and Chia (3) have tied stomach enterovirus infection to Celiac disease and Resulting CFS. Lerner et al ( 4) also showed improved outcome in Patients with CFS and individual AntiVirus Biomarkers like herpesvirus who were treated with antivirus medications. (CFS = chronic fatigue syndrome, ME = myalgic encephalomyelitis.)
"The power of the bugs remains to be fully seen." Dr. Margaret Aranda
And where does all of this leave us now? With hope. The hope is that ME / CFS can achieve a respectable place in physician and community acceptance, as a valid disease without the stigma of mental distress and / PTSD. And the real hope ? it is always for a cure. Read more about this with Joseph Montoya who describes the hopeful promises that could lie ahead.
Have hope. Do not let anyone ever take that away from you. They do not even ... know who 'you' are.
Dr Margaret Aranda
And anyway, you live in the body. Only you know what it feels like (Image 4).
Image 4. The Power of the #rebelpatient (TM) . The patient can not be treated by a physician who never heard of the "Invisible Illness." She is Empowered to become the Stanford Medicine-X e-Patient . See #medx.
* The Autonomic Nervous System (ANS) controls all of one's Vital Signs: temperature, blood pressure, heart rate, and all the 'automatic' things one does not control such as standing up without fainting, eating food that goes through your stomach, holding urine in the the bladder without spilling it out at will, erecting the penis, holding stool in the rectum, sweating, breathing properly and more. Dysfunction of the ANS, also known as dysautonomia, is associated with syncope or fainting when standing upright.
I believe that Infectious Diseases have a more primary role in causing or worsening invisible illnesses. Since about 80% of our immunity, protection against bacteria and viruses, is located in the gut, I've been a proponent of #Immunonutrition.
We must view each bite of food as either killing or protecting us.
Let's keep an open mind and continue to saturate our senses with good sense.