Article: We Might Have Long Covid All Wrong (covers FND,ME/CFS,includes Sharpe,Garner, Carson and more).

https://twitter.com/user/status/1622383410499969030

 

Go Zeynep!

https://twitter.com/user/status/1622727468116324362
https://twitter.com/user/status/1622649706005266433


https://twitter.com/user/status/1622703972862644224

 

The guy(Bilbo?) replying that there's no proof that it isn't functional is exemplary. We don't need every whack job theory disproven we need solid theories proven. I could say the moon is made of cheese, does this mean NASA is obliged to send a probe up there proving it isn't? No I'm the one that should be proving it's made of cheese and I'd better do a hell of a good job of it.

 

When a random Twitter user named “Rodrigue Biscuit” offers a more artful summary of the issues with BPS research than Shure could ever concoct, it speaks to the disturbing state of affairs here

 

Twice cooked beats half-cooked every time.

 

Natalie Shure still trying to merge Long Covid with FND - 16th February. And she's still blocking replies to her contentious tweets.


https://twitter.com/user/status/1626191169053945856

 

But FND is fictitious...

 

FND refers to a real group of people, mostly with seizures and movement disorders. It may be a silly diagnosis but the people and symptoms are real. As far as I know LongCovid bears no resemblance. Shure seems to be well into pottyland disinformation.

 

These seizures and movement disorders don't fall into another category of their own already? They haven't been stuffed into a new sort of collection bin for well-established diagnoses I mean? Rather it's a distinct set of characteristics that only fit the FND diagnosis? Genuinely curious here, when I try to look at the website I'll link below for example I see a set of symptoms so broad that it's very easy to diagnose someone with FND as long as they don't have a diagnosis that rules that out yet including biomarkers consistent with that diagnosis.

https://www.nhsinform.scot/illnesse...er (FND) describes,or structure, of the brain.

When I then for instance click on functional cognitive symptoms I see a lot of consistency with brain fog. I see the pattern is to rule out dementia or early onset dementia and then compare to see if it's mild cognitive impairment or FND. It seems to be diagnosis of exclusion rather than one that looks for specific things in the body. You have x, y and z, we can't find causes a, b and c, therefor it must be FND. I might be missing important bits of information but it seems to me like another waste basket diagnosis where as many things as possible can be included on the basis that no physical abnormalities are found. Which I suspect is why M.E. is so easily lobbed in. I'd be happy to be proven wrong though.

https://www.neurosymptoms.org/en/symptoms/fnd-symptoms/functional-cognitive-symptoms/

 

When I look at the body of research underpinning it the 4th link immediately mentions fibromyalgia and M.E.

 

De facto FND is being used as garbage bin diagnosis, while being presented in public as specific entity.

FND proponents are advancing the garbage bin usage, but fall back to the narrative of a specific entity with a long history in medicine and rule in signs when they encounter criticism.

It's a bit like the Motte and Bailey fallacy.

If FND is really a specific entity then this modus operandi is doing a lot of harm to the so affected patients because it's eroding the reputation of FND.

I suspect the real problem seems to be that neurologists don't have enough time to spend on patients with poorly understood symptoms, and aren't allowed to admit this, or to say "I don't know what's wrong".

 

I'm pretty certain that functional cognitive disorder is a made-up diagnosis. When did doctors become so darn certain of everything that they stopped using the word idiopathic?!

 

the seizures are (from what I've read) known as dissociative seizures (see tag).
elsewhere they also seem to be referred to as PNES (psychogenic non-epilectic seizures).
According to Mind there is already a name for the disorder associated with these seizures;
NEAD (non-epileptic attack disorder).
https://www.mind.org.uk/information...dissociation-and-dissociative-disorders/nead/

so I'm not sure why 'they' (those who now use FND) found it necessary to come up with a new name?

 

Because 'they' wanted a name with 'psychogenic' in it?

 

I think the point is that there is a group of people with striking neurological symptoms like seizures or tremors or twisting movement disorders for whom no structural neurological change can be found who can reasonably be put into a diagnostic category. Maybe it should be called 'people with striking neurological symptoms like seizures or tremors or twisting movement disorders for whom no structural neurological change can be found'. FND might be a fair term if it seriously meant that there was a disorder of neurological function but not structure.

The problem is that certain neurologists are selling this as a 'common problem' and throwing in anyone who has a neurological (or other) symptom without a clear cause - which actually includes everyone because we all get pins and needles or eyelid tics for no known reason.

The people who are usefully put into the category above are uncommon in clinics and have disabling symptoms that are very specific and mostly seizures and movement disorders. This group shows no similarity to Long Covid at all.

I have never personally wanted to use the term FND and as everyone says it has become worthless if it was ever useful.

 

Given the range symptoms included in the melange that is Long COVID, it's not surprising that there are those who are connecting selected dots to draw FND pictures:

Functional Neurological Disorder in people with Long-Covid: A Systematic Review

"Discussion

Neurological symptoms are prevalent in long-COVID, but poorly characterised. We are struck by the similarities between some manifestations of long-COVID and functional disorders triggered by acute illnesses. Unfortunately, the current literature is plagued by confounders, including the mixing of patients with initial mild infection with those with severe acute medical complications. The hypothesis that long-COVID might in part correspond to a functional disorder remains untested."
https://www.s4me.info/threads/funct...atic-review-2023-teodoro-edwards-et-al.31758/


The neurological symptoms of COVID-19: a systematic overview of systematic reviews, comparison with other neurological conditions and implications for healthcare services

"Conclusion:

Implications for neurological healthcare services in the United Kingdom (UK) may include longer waiting times and a need for more resources (including more qualified health professionals). There is also a possible change-effect on health professionals' perceptions of other neurological conditions such as CFS and FND. Future research is recommended to explore changes in health professionals' perceptions of neurological symptoms because of COVID-19."
https://www.s4me.info/threads/the-n...l-conditions-2021-wildwing.19975/#post-336867

I didn't search further, I'm sure there are more.

 

no sorry, I meant whoever came up with FND. Although maybe its because it doesnt have 'psychogenic' in it, it was more acceptable to patients(?)