"A different kind of moral judgment is cast depending upon whether one conceptualizes FND as etiologically a neurological or mental disorder. If the patient has a diseased mind, the patient is more blameworthy for the illness; if the patient has a diseased body, then the patient is less responsible. In fact, the DSM distinguishes functional disorders (conversion disorder) from intentional maladies such as malingering or factitious disorder, however, neurologists do not universally accept this distinction with the conviction that a patients’ conscious intention to manifest in functional symptoms is not possible to determine or differentiate."
Whether my symptoms are conscious or intentional will be debated by those not living in my body and experiencing them first hand. I expect that from the ignorant. On the other hand, there can be no such debate with regard to a "medical professional" who entirely refuses to accept the above distinction. That refusal IS clearly conscious and intentional. And demonstrates his FACTITIOUS CLAIM with regard to being an actual doctor, whatever his professional paperwork may claim.
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nurmihusa
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What a helpful conference report. Thanks for posting.
It is all grist to the mill in terms of pushing for a fuller understanding of aetiology and by confronting these types of unscientific beliefs held by medicals professionals it begins to open the door to some badly needed research.
Increasingly the likes of Stone and Edwards in the UK et el. are pushing the abandonment of a language which supports a purely psychiatric aetìology, and providing the scientific evidence to show that it is no loger viable.
This report demonstrates that dots are beginning to be joined up and is a real ray of light.
Nurmi.
Thank you.
I need clarification from the group on the reference dates in this article to avoid being confused.
I saw reference to the October, 2015 conference but not to the March, 2017 conference which I attended.
I see where the report was dated March 29, 2017. Help me please.
I do not know if the report tries to incorporate discussions that took place in March. If it was trying, it failed based on what I heard.
Regardless, I find what you wrote to be perfect. I have extended my communication with Emory to express my concerns over the direction medicine is taking in regards to FND.
The article was published March of this year. However, it is a report pertaining to the conference last year -Fall of 2015. This was a closed conference with only about 30 in attendance. I was invited to this conference and gave the opening remarks. It was quite different from the last conference as we were actually broke into groups to discuss specific topics and identify the problem and possible solutions. As you can imagine I was an island unto myself with very few visitors. Although, they were all very welcoming and kind.
We did have a public viewing of my video where I was publicly berated by a Semi-famouse writer with FND who tore apart me and my video because I did not lend a voice to her psychosomatic experience. (She completely took the video out of context) and It didn't stop there.
This experience taught me a couple things. One being, not to discount theories of true conversion disorder. There are those who do have a known and recognized psychological trauma that has converted into symptoms. They too deserve to be advocated for.
And two...
I was up for a bigger challenge than I realized but I can take whatever they throw out at me.
This change is not going to happen overnight. But it is going to happen. It will not happen with force but it will happen with educated and respectful dialogue. Science has already proven FND is not feinging or malingering. We just need to spread the word.
We just have to keep moving forward searching for answers based on science rather than medical hunches. FND was not discover in a science lab it was created. The good news about that, is it can be redefined as science is finally catching up.
The paradigm is shifting. That shift didn't happen over night and not by one individual. We all must unite and let our voices echo around the world that we will not suffer in silence anymore. We are a force and we deserve ethical treatment even when doctors are faced with medical uncertainty and regardless of why someone has Functional symptoms.
Because...
"No one, puts baby in the corner"
(To go with your song titles. I have offered an ode to a classic movie.)
Part of my confusion about the date mentioned in the report was the reference to 2015. I wanted to make sure there was no conference last year which would be 2016.
I actually found the report on the 2015 conference to be more progressive in tone than that of the segments which I attended on day one of the conference in 2017. I wondered what changed? Perhaps nothing, but I felt a significant amount of internal tension in the room. Almost like a jockeying for position amongst the medical side in attendance.
It is hard to hear how you were treated at the 2015 conference. It seems ironic that in 2017, efforts were made to present patient psychosomatic conversion disorder symptoms and treatments in the "patient conversation" segments. I came from Seattle to hear about patients like me where that link has not been established but rather presumed to exist. Regardless, patients with true conversion disorder have just that and have a right to advocacy in the medical setting.
I have not been accused by medicine of malingering or feigning illness. I had to look up what those words meant when I first saw them in the context of FND. I wait impatiently for science to define what FND is since it has concluded that it is not feigning or malingering. I am being sincere as I keep getting referenced back to the concept of medically unexplained symptoms. That definition does not clear things up for me.
We still have a definitional problem for our disease. Science catches up in the lab. I hunger for evidence that it is catching up. When the medical community speculatively argues about the origins of this disease in 2017 - mind, brain, body or some combination thereof - I worry that not enough is going on in the lab.
A paradigm shift is occurring. I see it happening in the community of sufferers. I listen to these folks tell their stories and I find a high level of awareness of their symptoms and a growing educational grasp on how we function medically. Our compassion for each other merges with this wisdom and is producing an enormous courage to fight back against unethical and inadequate medical practices for the diagnosis of FND.
This is producing change. Force is what is being unleashed by the individual and the community we shelter in as we discover the truth. It is powerful stuff. Very sobering to watch and be a part of.
I cling to controversy and confrontation. I am physically impaired. My daughter is too. Many others seem worse off than us. We live in pain and dysfunction. We will fight through another breath and another day. That is our awareness.
Change is happening because people are asking doctors "why." That part alone makes me glad to stand with these folks.
I thank FND.hope for its efforts. I thank this community for its efforts. We keep trying and we will catch a break. Science will be found and will become the basis for a disease name, proper diagnostics, treatment protocols and follow up care. I will keep pushing for this in the tiniest role of - being the individual.
I passed this article on to my primary care doctor today. As well as a link to neurosymptoms.org. He is pretty fresh out of school and open to new ideas and approaches.
I sat him down today and laid out what kind of treatment I think is worth trying based on what what I've found out on my own and what I've learned through here. He concurred and we're off and running.
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Lack of disorder knowledge by GP
Losing hope of getting over fnd
Could my FND actually be dopamine deficiency? 
\"I know you wanna leave me but I refuse to let you go...\"
Hoping to find support
