Website 'neurosymptoms.org' founded by Jon Stone, funded by the Scottish Government promoting Recovery Norge

[ToneAl]

Maybe by claiming various poorly understood diseases of neurology into the fnd canp he could ultimately blow up tje entire fnd camp especially if some of these diseases get misdiagnosed and the fnd label doesn't help.
Functional overlay is another dubious idea it basically any symptom other than the norm can be classified as Functional rather than a rare symptom of the disease.
It's like you can claim you are never wrong or be misdiagnosed. Reminds me of freud

 

[Sean]

especially if some of these diseases get misdiagnosed and the fnd label doesn't help.

No 'if' in that statement. It is only a matter of when. Indeed, it already has.

 

[ToneAl]

No 'if' in that statement. It is only a matter of when. Indeed, it already has.

I was trying ro get my foggy brain over your statement
So it may take longer for a proper diagnosis if a fnd label is given without proper care and further symptoms develop.
Reminds of an actress Selma blair who had to wait 15 years for a proper MS diagnosis. She was having symptoms for years before.

 

[NelliePledge]

I was trying ro get my foggy brain over your statement
So it may take longer for a proper diagnosis if a fnd label is given without proper care and further symptoms develop.
Reminds of an actress Selma blair who had to wait 15 years for a proper MS diagnosis. She was having symptoms for years before.

Diagnosis overshadowing I think they call it. In my opinion because I had minor depression diagnosis contributed to a delay of about a decade in ME diagnosis.

 

[ToneAl]

Diagnosis overshadowing I think they call it. In my opinion because I had minor depression diagnosis contributed to a delay of about a decade in ME diagnosis.

Or it could be the bias of the doctor always thinking of it being psychological

 

[kilfinnan]

I was trying ro get my foggy brain over your statement
So it may take longer for a proper diagnosis if a fnd label is given without proper care and further symptoms develop.
Reminds of an actress Selma blair who had to wait 15 years for a proper MS diagnosis. She was having symptoms for years before.

By coincidence I was watching this chaps videos last night. Including this

Professor Jon Stone - Undiagnosing MS, including the accuracy of clinical diagnosis



I don't understand any of this. As a lay person you should have respect for professionals in such positions. But he's a guesser. If a plumber left a description of all the difficult bits he couldn't explain hanging in the air you wouldn't employ them.

He also did an interview with Maudsley. In which his interviewer pre fixed Trudi Chandler as 'The fantastic'.

And the video with her and 4 GP's is still on Youtube. When she tells the GP to look at the stress the patient was suffering when she caught Covid. As that was the driver of her Long Covid. Can someone tell me if that was supposed to be deleted?

 

[Amw66]

I am advised that ME Action Scotland are taking this up with Scottish Government .

 

[Peter T]

I am advised that ME Action Scotland are taking this up with Scottish Government .

Good news

 

[ToneAl]

By coincidence I was watching this chaps videos last night. Including this

Professor Jon Stone - Undiagnosing MS, including the accuracy of clinical diagnosis



I don't understand any of this. As a lay person you should have respect for professionals in such positions. But he's a guesser. If a plumber left a description of all the difficult bits he couldn't explain hanging in the air you wouldn't employ them.

He also did an interview with Maudsley. In which his interviewer pre fixed Trudi Chandler as 'The fantastic'.

And the video with her and 4 GP's is still on Youtube. When she tells the GP to look at the stress the patient was suffering when she caught Covid. As that was the driver of her Long Covid. Can someone tell me if that was supposed to be deleted?

Isn't MS one of the hardest diseases to diagnose in the early stages when mri doesn't pick up any lesions or if you are unlucky lesions that won't be picked up by mri. So fnd is useless if it diagnosis these patients

I was reading once on a MS association website in Britain a Man in his 50s had progressive MS but had clear MRI it took him 3 to 5 doctors and over a period of years to get the right diagnosis. Many doctors said it was in his head or functional

 

[Sid]

From an article by this Stone person, coauthored with our old friend Sharpe. First sentence immediate stigmatisation and invoking of negative stereotypes about angry, irritable, depressed woman entering middle age:

It’s a Tuesday morning at 11.30 am. You are already 45 minutes behind. A 35 year old woman is referred to your neurology clinic with a nine month history of fatigue, dizziness, back pain, left sided weakness, and reduced mobility. Her general practitioner documents a hysterectomy at the age of 25, subsequent division of adhesions for abdominal pain, irritable bowel syndrome, and asthma. She is no longer able to work as a care assistant and rarely leaves the house. Her GP has found some asymmetrical weakness in her legs and wonders if she may have developed multiple sclerosis. She looks unhappy but becomes angry when you ask her whether she is depressed. On examination you note intermittency of effort and clear inconsistency between her ability to walk and examination on the bed. She has already had extensive normal investigations. The patient and her husband want you to “do something”. As you start explaining that there’s no evidence of anything serious and that you think it’s a psychological problem, the consultation goes from bad to worse….

https://jnnp.bmj.com/content/76/suppl_1/i2

The large number of terms to describe symptoms unexplained by disease is a reflection of the diverse concepts that have been used to understand them. They include:

• Pure symptomatic labels (for example, chronic fatigue, low back pain)
  
  
• Symptom syndromes (for example, chronic fatigue syndrome)

So there you have it, folks. CFS = FND according to this guy.

 

[rvallee]

Isn't MS one of the hardest diseases to diagnose in the early stages when mri doesn't pick up any lesions or if you are unlucky lesions that won't be picked up by mri. So fnd is useless if it diagnosis these patients

I was reading once on a MS association website in Britain a Man in his 50s had progressive MS but had clear MRI it took him 3 to 5 doctors and over a period of years to get the right diagnosis. Many doctors said it was in his head or functional

Very much.

The issue was never whether MS is psychological, the issue always was that before a diagnosis could be confirmed, most pwMS have had their symptoms dismissed as psychological. Until recently, the diagnosis could only be made once the disease had progressed.

So in a sense it's true that MS was long dismissed as psychological, just a technical detail that is just as dismissive as the standard dismissal of patients with those symptoms. Because in the end, according to the manual anyway, medicine is supposed to be about people, about patients, not diagnostic labels. But we all know this is pure fiction.

No doubt the FND ideology will cause many with neurological diseases to be diagnosed too late to avoid damage. Certainly not all, but this is the textbook definition of what "do no harm" is supposed to be about.

 

[Cheshire]

It’s a Tuesday morning at 11.30 am. You are already 45 minutes behind.

So telling. It's all about the doctor, their life, their stress, the heartsink patient the poor physician has to deal with. The "functional" patient is just another annoyance that they need to get rid of, with an appearance of humanity to let the doctor think they are caring.

 

[JemPD]

Symptoms arise from physiological factors (for example, physiological tremor), psychological factors (for example, paraesthesia during a panic attack), behaviours (for example, excessive rest), and cultural or external factors (for example, compensation and the welfare state).

An unpleasant job, being in a “benefit trap” (where money received on benefits is comparable to that earned at work), and involvement in a legal case should not be seized on as “the cause” of symptoms. This is just another form of unhelpful oversimplification. They could, however, be highly relevant obstacles to recovery.my bolding

money on benefits comparable to that eared at work. Where on earth do they get these absurd ideas that benefits pay anywhere near what even a minimum wage job would? Its pathetically ignorant.
Top rate ESA £6115
Top rate PIP (which i'd bet very very few people with FND would ever get) £7958.80
so total £14,074

full time 40hrs a wk at minimum wage job = £19,760

Many of the people they are diagnosing will only get standard rate PIP reducing their PIP to 4487 income to & a total of £10,603

So for all their cleverness these neuros cant even use a calculator to see that even in best very unlikely scenario anyone on full max benefit will have £5,696 less per yr than aperson working at a min wage job.
And at worst their income will be just £6k - not nearly enough to live on.

Not to mention the fact that many of us had high paying jobs we had to leave to live on apittance. They need a shot of reality

 

[JemPD]

It was quite a disturbing read - my neurologist had obviously read this, it reads like a transcript of my first appointment.

 

[Wonko]

Top rate ESA (SG) is currently a smidge over £7000 (£7038 or something close to that), not £6,115.

and of course, for some, there is also housing benefit, possibly up to £5K or thereabouts.

Doesn't really undermine your basic premise tho, that disability benefits are nowhere near even close to minimum wage, let alone the average wage.

Especially given next year I will be expected to pay £3,000 - minus a £900 grant (ETA - just for electricity) - so £2100 - an extra £1000, and I have other bills and expenses, out of the remaining meger funds. Take a £1,000 off someone with £21,000 and they will have £20k, take it off someone who has only £7k, and they will have only £6k, less than a third of the other 'poor' min wage guy.

saying they are equivalent is 'inaccurate'.

 

[Sean]

I get close to the maximum rate possible for government disability support (for a single person with no dependents), which is just under $29 000 a year.

The median income in Australia is $52 338.

Not. Even. Close.

 

[NelliePledge]

Nauseating attitude demonstrated in that first sentence


How about a rewrite from the patient perspective.

It is a Tuesday morning you had a two hour journey and half an hour spent parking and finding your way round the hospital in time for your 11.30 appointment. You are already exhausted by the time you reach the waiting room. You have to sit on an uncomfortable chair in a stuffy noisy environment. You are kept waiting 45 minutes. Then the Dr you’ve never met before calls you in…….


That’s before he says anything

 

[rvallee]

It was quite a disturbing read - my neurologist had obviously read this, it reads like a transcript of my first appointment.

As far as I can tell, this site is basically the bible for many physicians and the rest think it's amazing. Outside of our little bubble, I've never seen it described any other than profusely gushing and praising.

Fortunately I don't see it discussed too often, but it is always in a beloved way. Cringe AF.

I lost 100% of my income for years and now make about 15-20% of what I could make at my old (now 10 years past) standard rate, which would likely be much higher, probably closer to 10%. So a loss of well over 90% income and I literally cannot own things worth anything. Such amazing benefits.

The notion that disability benefits pay more than even a minimum wage job, said out loud by actual physicians, show how little they know about everything that happens outside clinics. This is like wealthy politicians who think bananas are worth $10 each. They know as much about our lives as privileged aristocrats, this system makes no sense.

 

[Sid]

So telling. It's all about the doctor, their life, their stress, the heartsink patient the poor physician has to deal with. The "functional" patient is just another annoyance that they need to get rid of, with an appearance of humanity to let the doctor think they are caring.

Disturbing article full of lies and self-aggrandisement. Basically, the whole thing boils down to how to trick/screw over the patient. Check out also this self-indulgent bit where they talk about how taking the "functional" patient's history should be tweaked to make it more interesting for himself (the neurologist).

If you suspect that a patient’s presenting symptoms are functional, there are ways of adapting the history to make it more efficient, more interesting for you, and more helpful for the patient.

I'm not here for your entertainment.

 

[Sid]

It was quite a disturbing read - my neurologist had obviously read this, it reads like a transcript of my first appointment.

They are all like this. This article almost reads like a self-parody of the entire worthless and disgraceful profession of neurology. They have zero insight into their appalling behaviour and can't even retain a veneer of professionalism when confronted with a patient who they believe has no organic basis to their symptoms.