How safe is a diagnosis of FND? Are the positive signs used to diagnose valid?

[PaulUK]

I thought this article may be of interest. It questions whether FND is a proper diagnosis or not, and whether the supposed positive signs used for diagnosis are valid.

virology.ws/2019/12/30/tria...

[Hidden]

Brilliant. Many thanks for the link.

[Hidden]

What an excellent article to read and pass on to my friends who are facing an F diagnosis - many thanks PaulUK.

Happy New Year,

Twitchy

[Bailey09]

Thanks for sharing this post it's

Really interesting x

[artmom]

Really interested to see this, very interesting reading. Thank you and Happy New Year x

[DNE92 Moderator FND Hope UK]

Thanks. Perhaps for some there may be a trauma conversion but as for myself I know that this is not the cause. And if I was simply converting my trauma, why at this age and also why am I deteriorating? I would be more satisfied with the honest answer "we don't know yet" - I can accept that we are a long way from understanding the brain in its entirety. And, as others have pointed out, you begin to have to investigate other possibilities yourself (and sometimes privately pay). And I recognise how "coded" language is used. That is not helpful nor is sending people with no mental health issues off to see a psychiatrist to be told what they know in the first place - they don't have any mental health problems. I think there is beginning to emerge among the medical profession that the "software" analogy is not entirely accurate. Just as those with ME had to fight off the derogatory term of "yuppie flu" we have to keep fighting to get beyond this one size fits all "psychological explanation".

[AjaStar in reply to DNE92]

They sent me off to a psychiatrist just to be told you are not under mental distress, I don’t need to see you anymore but you can keep seeing your Cognitive behavioral therapist if you want to. All these so called specialists just pass the buck leaving you to suffer.

[tatiyana]

looking at MUS, i feel like ive been fobed off again

[PaulUK]

David Tuller has written a followup post to this one.

virology.ws/2020/01/07/tria...

[Foggyme in reply to PaulUK]

PaulUK...I join with Hidden in thanking you for this.

Sane words about an insane 'theory' (ha)...made my year!

Bookmarked and watching out for more!

Thank you xx

[Hidden]

Thanks so much for this Paul. I wish I’d read this yesterday because it might have rounded off my birthday rather well!! 😊

My comment from a Lupus/ Sjögren’s/ CTD perspective would have to be that it’s also high time the failure to acknowledge neuro symptoms, overdiagnosed as “FND”, but actually caused by very underdiagnosed and misdiagnosed systemic diseases and under researched drug interactions, got a mention in this international debate.

[artmom]

Thank you PaulUK. Can I ask what anyone knows about the author? Is he a researcher/doctor? I’m not big on social media but presumably someone has posted links to these papers on Stone’s twitter or something?

[PaulUK]

You can find out about him here me-pedia.org/wiki/David_Tuller

He teaches health journalism at the University of California, Berkeley in California.

[Mic67]

I've really appreciated his two articles on FND as well as the comments people leave on his blog. I hope he continues to write them. The latest one was simply questioning why the new information on hardware issues hasn't yet been disseminated through the neurosymptoms website, which I think is fair enough, particularly when so many are given this as a sole source of information. I think it is healthy to have these discussions/debates but so many patients get defensive when anyone questions FND as a construct.

[Hidden in reply to Mic67]

To me the devil in this “FND” is the fact that once it’s diagnosed, further investigations are halted. The acknowledgement by doctors of how little is yet known yet about the brain and the connective tissue and blood that binds each of us, then goes by the wayside.

In my experience most doctors are notoriously reluctant to reverse any diagnosis they have made unless they really are forced to. So they should stick to the premise that they just don’t know enough yet to make a diagnosis and then they can’t be accused of misdiagnosing or be required to redact.

And we patients should in turn respect them for this honesty. The desperation for a label of any sort is understandable - uncertainty is hellish - but it is really not in the interests of good science or proper medicine that the medical profession pander to the need for a label. If there is science to support the existence of FND then find it and present it to the medical world and to MUS patient population officially.

Also I have, in the recent past, deeply resented having been told by a few with “FND” - or by it’s chief neurologist proponent - to cease expressing my doubts about it as a construct because they are hurtful to those who have accepted their diagnosis. I have been told that the risk of having further investigations is often more harmful than simply accepting this diagnosis. To me this is like being told “I’ve been gaslit and I don’t want you coming along now and turning the lights on to expose this violation!”.

There is also a distressing implication that what is good for them mitigates what has been a disastrous misdiagnosis/ non diagnosis for many of us.

As you say, the construct of FND is just that - a construct - and being able to have an open discussion about the issues this raises is very important indeed.

So extra thanks PaulUK for giving us the opportunity to read and discuss Thuller’s blog articles to date without inciting any of the usual rancour. 😊

[artmom]

I’ve just finished reading Nathan Filer’s The Heartland (on (so-called) schizophrenia) (very interesting read btw), which mentions the ‘seventeen-year lag’, ‘’which is widely considered to be the average length of time it takes for health professionals to change their practice after a new scientific discovery is made.’’ Hope everyone’s feeling patient!