Join Our #FNDandUS Campaign

[Andy]

The goal of our #FNDandUS campaign is to share inspiring patient stories from our community to help raise awareness of Functional Neurological Disorder, the most common condition you have most likely never heard of! Through our awareness and education efforts, we are putting resources into the hands of those in need. FNDandUS is about a community, its about sharing the struggles that people diagnosed with Functional Neurological Disorder have and the hope of people managing their symptoms. It about families who help care and support US, its about friends who give US a lending ear.

FND Hope International, FND Hope US, FND Hope UK, FND Hope Canada, and FND Hope Australia are all committed to the health and well-being of those with functional symptoms. We have joined forces with others in a global network to advocate best practices for ethical patient-centered care for FND. We aim to change how functional symptoms are understood and defined globally and work in a concerted manner to advocate for the men, women, and children who have had their lives turned upside by physical and often debilitating functional symptoms. FND Hope and affiliates provide current information and dispel biased stereotypes and myths.

https://fndhope.org/fndandus/

 

[Hoopoe]

I looked at the explanation for what FND is and it's very vague.

 

[rvallee]

Oof. Very poor timing. Read the damn room. Or don't, can't imagine a better way to destroy this nonsense than clashing with the need to get Covid under control and finding out that it's definitely not a "small minority" who see through their crap.

In a way, looking forward to what physicians with Long Covid will think about the gaslighting and how they're emoting their illness. It's quite different when you're the one espousing the merits of 5 lights vs. being strapped in and being lied about what your eyes can see.

I guess that explains this...

 

[Snowdrop]

It's quite different when you're the one espousing the merits of 5 lights vs. being strapped in and being lied about what your eyes can see.

This occurs to me regularly. My kids when they wanted to say what it was they knew to be true would say 'there are four lights'. We had a lot of coded language of our own taken from popular fiction.

 

[Hutan]

Mark Edwards and Jon stone are on the medical advisory board.

There's a section of questions, all written in caps. I won't replicate it here, but caps text is a very odd choice for a population that has brain fog and visual disturbances listed as symptoms.

"The most common treatment is cognitive behavioural therapy, which some people have found to be helpful. Whether it does improve your physical symptoms or not, cbt may help you to find ways to cope with the symptoms and with some of the new challenges you may face. You may be one of the 13%1 that does benefit. However, do not feel discouraged if you give it your all, but are not cured or see little improvement in your physical symptoms. Your new coping tools can be very helpful"

I can't see what the reference there is for the 13% statistic.

The website is a great example of BPS thinking in transition. Now it's no longer necessary to have psychological trauma, and there's acknowledgement that CBT won't necessarily help, and that most people aren't cured. There's more of an acknowledgement that no one really knows what is going on - but still 'do some CBT anyway'.

FND is presented as a single condition with a range of symptoms:

overactive bladder
irritable bowel syndrome
chronic pain - fibromyalgia, complex regional pain syndrome
brain fog - which includes tiredness
memory loss
dissociative amnesia
depersonalisation
gait and movement issues (freezing, foot drag, balance issues); tremors, tics; paralysis; weakness
headaches and migraines
functional seizures
insomnia and hypersomnia
inability to speak, stuttering, slurred speech
visual changes and photophobia​

Interestingly, in the list of symptoms, there was no heading for CFS or even fatigue. Fatigue is mentioned as an accompanying symptom,
e.g.

Slurred speech may accompany other symptoms:
<basically all of the symptoms mentioned above, as well as fatigue and depression>

There is significant overlap between FM and chronic fatigue syndrome.

I wonder why they didn't throw ME/CFS into the FND bin - they have included pretty much everything else that can't currently be explained. There's promotion of exercise - maybe they felt including ME/CFS as an FND is more trouble than its worth.

There is likely to be pressure from everyday life or a particularly symptomatic day to deviate from your exercise routine. However, it is imperative that you continue a regimen at any level, even if you have to do less than baseline, in order to maintain a routine.

 

[Andy]

Interestingly, in the list of symptoms, there was heading for CFS or even fatigue. Fatigue is mentioned as an accompanying symptom,

Missing a word? Should be perhaps "there was no heading for CFS or even fatigue"?

 

[Mithriel]

The only place you ever see such a list of diseases with one cure is on the side of the wagons of snake oil salesmen or the modern day equivalent.

CBT only works for 13% and they are benefitted, not cured. If you are not one of those then, well, that's it, goodbye. How can they acknowledge this and yet be an organisaiton which is " a global network to advocate best practices for ethical patient-centered care for FND."

FND is a dead end diagnosis. If they really cared about the patients rather than having a love affair with their theory they would want to look elsewhere than psychological treatments to help the 87% of people who see no improvement with CBT. We saw in the recent paper that CBT does not reduce the number of seizures people have.

You know that your diagnosis of hypothyroidism is correct when treating someone with thyroid hormone makes them better. If a psychological treatment only benefits 13% it should be a red flag that something is wrong with your theory.

 

[rvallee]

overactive bladder
irritable bowel syndrome
chronic pain - fibromyalgia, complex regional pain syndrome
brain fog - which includes tiredness
memory loss
dissociative amnesia
depersonalisation
gait and movement issues (freezing, foot drag, balance issues); tremors, tics; paralysis; weakness
headaches and migraines
functional seizures
insomnia and hypersomnia
inability to speak, stuttering, slurred speech
visual changes and photophobia

Long Covid checks everyone of those, and then some. Not everyone with Long Covid, but most do have at least several of those and many have all of those. Usually temporary. As in it goes away with time, or diminishes, though not always. Mostly with rest, but of course rest is advised against, which only perpetuates them longer. Because reasons.

They keep speaking of functional changes. What do we know causes functional changes in biology and physiology? Why, it's viruses of course, literally the thing they do best, along with hiding and evading. And the immune system, because it has to change how the body functions in order to defend it. All consistent with every single feature of how these things occur. But the dogma is so firm that pathogens can't possibly do chronically what they do acutely, even though many are known to do, but that's unacceptable because of decades of tradition rejecting the very premise, unsurprisingly a tradition which started BEFORE the damn germ theory of disease.

And now the whole field seems to have embraced essentially being pressure marketers, understanding that people don't buy their crap but unable to process why, because they can't imagine their beliefs being wrong. No, it's the patients who are wrong, after all that's the whole ideology, self-reinforcing crap.

 

[rvallee]

Anyone notice that there seems to be a small PR blitz under way? Don't know if it's the same thing as this because they don't seem to use the #FNDandUS hashtag. Not big, mostly argumentative with chronically ill people telling them to FO with their gaslighting, which is a big tell as the language is very weird, very "how you do, fellow kids?".

Mostly it comes from MDs or neurologists who work on FND and who seem to be doing public awareness, none of it is aimed at professionals. It mostly says the same things as us: it's real, it's stigmatized. Or it's mostly anonymous accounts promoting FND, along with a few people who may be patients but clearly don't know what FND promoters actually mean.

It's not very good, though. The arguments are very poor and often try to argue that there are positive signs to diagnose, that it's not just a diagnosis of exclusion, pointing at things like fMRI, but always back down immediately saying that those aren't used clinically. It argues about biomarkers and imaging, but only in a vague, general sense, which of course entirely defeats the purpose of the conversion disorder it actually argues about.

It's also sometimes argued that it's not conversion disorder / hysteria, right after having said it.

It's very bizarre. I wonder if it's linked to Fink's thing where he got funding to promote his crap? Or maybe that was only for his country? I don't know. It's just weird.