• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To register, simply click the Register button at the top right.

Who Gets to Define a Disease?

Ember

Senior Member
Messages
2,115
The Most Prevalent and Devastating Disease Your Doctor Has Never Heard Of
http://www.huffingtonpost.com/jennifer-brea
Jennifer Brea

Director, 'Canary in a Coal Mine'

Posted: 11/20/2013 9:43 am
Who Gets to Define a Disease?

There is a new effort underway to close the gap between medicine and science. The Institute of Medicine (IOM), under contract by the Department of Health and Human Services, is assembling a panel of clinicians and researchers to devise a new definition for the disease. On the face, this is a good thing and long overdue. It's a chance to get the story straight.

Yet, nearly every expert who would be qualified to serve on that committee is publicly opposed to it. Not to mention many patient leaders. Some consider this the most important crises the patient community has faced since the 1980s.

Why the uproar? First, it is an expensive process: $1 million in public funds that could otherwise be used for biomedical research when there's already a newer definition many doctors around the world who specialize in treating patients with ME have been using for years.

The real concern is that what will come out of the IOM is a story that will condemn us to the same fate we've been living for thirty years: nearly no public funding for research; a medical system that often abuses patients; and no real treatment, outside of a handful of clinics that probably can't take health insurance.

Earlier this year, the IOM publicly advocated cognitive behavioral therapy, antidepressants, and exercise for ME: the same paradigm my doctor was operating under when he told me my illness was psychosomatic; the day before I over-exerted myself and was never the same again.

I was one of the more than 170 patient advocates who signed an open letter asking HHS to cancel the IOM contract. Many patients would say that a democratic government taking an action that virtually all of its constituents oppose is about dirty politics. There's probably some truth to that. I would like to believe that part of it is a matter of being profoundly out of touch.

There is something elusive in the nature of the illness such that unless you live it, or live with and care for someone who does, it's almost impossible understand or describe. You might come close after decades of treating patients. At every turn, language fails.

I am making a documentary film about ME not because I have any illusion that a film is a cure or that a film on its own can change policy. Rather, so much of the suffering that comes with this disease is needless and borne of ignorance. For too long, we've let others tell our story.

It's hard for me not to wonder if the first doctors I saw had been told a different story about my disease, if they had the experience to recognize what was unfolding before I did, and advocated complete bed rest, if I had never gone on those "healthful" walks, how my story might be different today.

And what might happen to the next generation of patients if we don't have a say in how our own story is written.

Read more...
 

Izola

Senior Member
Messages
495
So far...35 people are discussing this article with 40 comments.


So far...35 people are discussing this article with 40 comments.

Who gets to define Myalgic Encephalomyelitis? Evidently, the Psychiatrists, and for way far too long. Before 1984 there were doctors who recognized M.E. and treated it. They knew that immediate bed rest was essential for any hope of recovery and prevention of worsening physical damage.
With a growing number M.E. outbreaks psychiatry saw gold and labeled it "psychosomatic" a somatization disorder. This definition also benefits insurance companies--cheaper treatment and very limited disability payouts. With Power and psychiatrists aligned it could be said it was inevitable that society became infested with this massive and deadly untruth. The disgusting name "chronic fatigue syndrome" was birthed in the bowels of the C.D.C., the knowledgeable clinicians and "Myalgic Encephalomyelitis" harangued out of the den.
I have looked for, but have never found any scientific fact based research that proves that there is such a thing as somatoform disorders. Yes, stress can be damaging, That's physical, and it doesn't require monsters in your mind.
Psychiatry began as theory, choose your pick, from Freud, Jung, Adler and so on, It is still based, in large part, on theory. Neurologists are primarily empirically based physicians, They find holes in our brains and other terrible malfunctions that impact horribly on the many functions of our bodies. Psychiatrists find only invisible "mental" and other undetectable aberrations they say they believe can be fixed by exercise and retraining our thoughts. Some say they can retrain our amygdala's. Yes. there's always classical conditioning, Pavlov and his dog and all. I can see, in my imagination, the amygdala as seal chirping and flapping its behind and salivating. The last I read the real scientists are still looking into rats' amygdales.
Could shrinks be that far ahead? Now that's real lunacy.
I have found no empirical data of measurable physical matter that points toward the reality of somatoform disorders. The greatest probability is that they are undiagnosed physical illnesses.
So, a zillion MB of logic later, is it even possible that in recent decades some 17 to 20 million people on this earth started having mental problems posing as physical illnesses? Now, just how darn possible could it be that these same 20 million people have had their mental distress translated into 17 to 20 million identical complex core symptoms?.
The psychiatrists and their cohorts are maiming and killing people. In war speak, they are committing atrocities of immeasurable proportions. War crimes in a very quiet war.
With an M.E. uneducated panel for the IoM, many of us rightly fear that they will be swayed by the "somatization" nonsense notion of causality.
 
Last edited: