This was recently shared:
youtu.be/XtSNBqC1z18?si=xml...
Ted X talk by Dr Sarah Lidstone on FND - it’s All In your Head: Challenging Dualism in Healthcare :
Loved the Call to Action bit:
"She proposed that we stop doing treatment to people and instead work with them."
Very interesting, thank you. This is what patients have been saying for years but it still does not explain why FND is in DSM. If they want to challenge 'false dualism' then they need to remove FND from DSM, especially now that we know that the people who slung it together signed non-disclosure agreements.
I guess we will never find out but someone should have the authority to request it be removed. How often is it reviewed?
I'm not sure how often it is reviewed but yes, let's hope someone has the courage of their convictions and requests that FND needs to be removed from DSM. Maybe the FND feminists could do that. I really liked Prof O'Leary's rapid response to the FND is a Feminist issue paper, especially with respect to misdiagnosis.
Meanwhile I still struggle with the hardware/software analogy too, since I find it dehumanising and I've read 'why your brain is not a computer'. I wonder if it would make more sense to refer to the environmental factors, the genetic factors and the economic and social determinants of health. It's good that Dr Lidstone referred to it as a 'crisis' in neurology but it's still a problem for patients that this crisis is still a long way from being resolved. Likewise it's problematic that 'hysteria' is one of the keywords in the latest FND hypothesis and it is a big, big problem that people are being told that questioning the FND diagnosis proves that it is the correct diagnosis.
I think they probably use the hardware/software analogy to try and simplify it and re-assure people its not a structure issue but in separating the two they are not addressing that there is an issue that effects the body and it needs addressing.
Yes and it's a fine line between dumbing down and reassurance. Especially since there are lots of conditions which are considered serious where there is no structural damage eg migraine, tinnitus, MdDS, depression etc etc. So yes, again, it needs addressing and not dressing up in fancy terms that have been coined by drs, not patients.
There surely must be some guidelines as to how a condition gets listed in the DSM... or would that be too simple? Maybe it is the access to them that is the problem .. or access to the folk in the closet?
I think it has been in there for centuries just under different names. No one has challenged it to be removed.
Someone did take the time to alter the symptom base in the latest edition, removing the previously required 'psychological stressor', which was there since the first edition in 1952... so getting there.
There isn't a regular schedule, but it looks like every time they revise it, they add more conditions. Soon there'll be a mental condition for every person in the US! Jon Stone has been arguing to get it removed, among others, but US psychiatrist/neuro-psychs are fighting it because then they can't get paid!
0h no!! that's terrible.
Agree. Until I started watching the professional webinars/conferences, I had no idea how political the FND world is. You have the psychological believers on one side and the biological believers on the other (doctors and researchers) and they fight like crazy, albeit in a very polite/passive-aggressive way! The traditional Freudian/it's all in your head/converting emotions to symptoms lot have been losing ground in the last 10 years or so and are fighting back hard.
Thanks for enlightening us to their disputes ..which currently are not helping patients much! but it is good to know we are on their radar, and that only more research will help either side fortify their position, which might spur them on...to our benefit hopefully.
Hi Lady4.
thank you for posting the link to the video
just listened to it. Very interesting. It seems the issue with FND requires the medical community to change a lot. Healing instead of treating; I like that idea.
Lets hope it changes soon and the rehabilitation success rate soars.
I must say I found it strange that Dr L had discovered a lot of variation in the motivation to get better amongst patients, though I can understand that the usual model of a patient 'receiving ' treatment rather than , as she proposes, a Dr/patient partnership, could lead to patients who might want to get better, but don't fully appreciate the role they need to play.
I think it all starts with the initial validation and trust and asking that patient what they need.
I find it frustrating that she is very locked-in to the idea that FND is both physical and psychiatric. I know this from personal experience because I've been treated by her and she kept sending me back to the psychiatrist even though he kept insisting that there was nothing psychiatric in my presentation. He actually thought I had a sleep disorder, and that's why I kept collapsing, which made a lot of sense because I hadn't slept for days and felt exhausted. This kind of stubborness is very frustrating for the patient - it made me feel dismissed and even gaslighted. I am very happy for the people that she has helped - I do wonder though how many of her patients don't have such a dramatic improvement.
Guess thats data we will never know but there is so much variability of symptoms and individuals that it would be pretty difficult to measure.
I wonder if she engaged fully with all the patients, or only the 40% who were 'ready for rehab' .. no indication of what the criteria were. ..but it makes sense that motivation to participate in therapeutic activities is going to influence the outcomes.
I met a woman from Ontario who said she was refused entry to the program because she was too old (over 50) and had been sick too long. Apparently they think this makes the brain harder to change.
That's not such good news for me .. I am over 70!! still not giving up trying to restore my brain from its 3 years of 'wonkiness' though.
Yeah, that's what they think but I'm over 60 and my original tremor is almost completely in remission. I know how to manage it now and I did it all on my own with trial and error and listening to my body. I think improvement is possible at any age, even if it takes a bit longer and isn't so dramatic.
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