3RD INTERNATIONAL CONFERENCE ON FUNCTIONAL (PSYCHOGENIC) NEUROLOGICAL DISORDERS

[DawnFNDHope]

FND Hope UK, FND Hope US, FND Hope AUS and FND Hope NL are looking forward to representing you at the above FND Conference. We are looking forward to learning more about FND and sharing the output with you.

fnd2017.org/FND-2017.htm

[malalatete]

Why do the organisers of the conference use the 'psychogenic' label?

[cgarff in reply to malalatete]

Sorry a Rant on that question: That's a very good question that I think we would all like to know. I had the opportunity to go to one of the conferences back in March. Several of us there that suffer from this just wanted to scream out several times. It was very frustrating to hear the way they put things. I know they mean well, and I appreciate that they are trying to figure this out, but AAAHHH! Its enough to drive you mad sometimes. I wish they could put on our shoes for a day to see what it feels like. To have this called psychogenic, all in your head, your healthy, just accept it, go back to work, deal with it, your not suicidal, so we don't have to worry about covering you, go to a therapist, they can fix it all.. blah blah blah..

Where is the relief? Where are the REAL answers, where is the opportunity for treatment that insurance will help with, and that isn't 1/2 way across the country because I certainly know there isn't any on my half of the US.. There are days where I would just like these Doctors to go through what we go through day in and day out 24-7 for years and year helps even for just a day so it could help them to have a better view of what we go through, what we feel, what it is like to have your body and mind just change without notice, have your life as well as your families lives turned upside down because of it. I for one would think that might motivate them a little more to search harder for answers.

I guess we have to keep hoping, and maybe they will take the psychogenic label off of it some day.

[malalatete in reply to cgarff]

Well I for one refuse to go to anything, however 'clinical' they badge it, that obviously simply won't take it seriously. And 'psychogenic' is, in my view, not taking this seriously. I can only hope that FND Hope is attending this in order to ensure that there is a call for real, rigorous assessment of what is going on??

There is something structural going on here - the medical community just is not doing the right tests to show it. As someone with ME it is my experience that this is a common cop-out for anything neurological that neurologists don't understand. The psych lobby dmamged the level of research into biomedical causes for ME for far too long - and whilst on the payroll of the drug companies that were touting their drugs for psychogenic disorders. Their most recent study which suggested that people with ME just needed to be pushed to exercise more and told with CBT they were actually perfectly OK has been pulled to pieces by independent scrutineers - and their follow up study has just failed to prove that their original conclusions were at all justified....Wasted millions that COULD have been better spent bolstering the research that is now finding clear differences in fMRI brain scans of people with ME...or the research that is finding that we do have higher levels of lactic acidosis than others after exercise, which persists and causes long term pain...or the research that is highlighting abnormal levels of brain chemicals related to low-grade inflammation - for no clear reason.

Come on FND Hope - to give anyone out there any hope you need to lobby properly for research into the actual causes of what is going on with us out here, so please make sure that our views are heard in the place when they start spouting the same old psychobabble and think we will be satisfied just because they put FND in the title.

[Dave_1 in reply to malalatete]

This is the multi million dollar question. Which comes first, The condition itself or the psychological repercussions.

We can think of so many conditions that were similarly thought to be psychogenic, Take Multiple Slerosis for example, they were malingerers, people were restrained in mental institutions because their condition was not understood by the "PROFESSIONALS".

Certainly how we deal with anything, illness or daily events will have an outcome on our physical bodies but to think that we would EVER want to go through this daily battle for some gain is INSULTING TO SAY THE LEAST.

I have placed a link here about Psychogenic Neurological Disorder and its history from MedLink, The information resource for clinical psychology. If Psychologists really still think this way, well, time they moved out of the dark ages.

medlink.com/article/psychog...

It is a positive thing that they are talking about us but lets get some REAL MULTI DISCIPLINARY RESEARCH GOING.