ALL Countries Please sign the MEA's new petition to NICE:do not classify ME as 'functional'

Large Donner

Large Donner

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To be honest the BPS crowd don't really care if they don't get ME listed under FND as long as FND can be used in the sense they want it to be.

They don't need the label ME if they are attempting to dump as many people under an all en capturing Bodily Distress syndrome label etc.

ME can stay under neurological at G93.3 as far as they care they just wont use it.

Functional symptoms are complaints that are not primarily explained based on known physical or physiological abnormalities.

One is an absolute statement (there is no physical pathology), and the other is a conditional statement about the current state of knowledge (there is no known physical pathology).

The difference is a universe wide.
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On top of that how about when you dont bother to test for anything because you already know its functional and the guidelines tell you not to test for things.
 
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Sbag

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From looking into this in relation to an insurance claim it seems to depend on the other word that gets attached to functional - nervous, neurological, somatic. If it is nervous then it relates to mental health, neurological is organic and somatic is emotional and is now being used instead of nervous.
o A somatoform disorder can only be so classified in the absence of an adequate physical explanation (World Health Organization, 1992). Furthermore, a somatoform pain disorder can only ‘... occur in association with emotional conflict or psychosocial problems that are sufficient to allow the conclusion that they are the main causal influences’ (World Health Organization, 1992).

In recent correspondence with NICE over the ME guideline and how it is categorised (from the previous guideline they said some experts wanted to follow the WHO categorisation and some didn't and then they don't say anything else so I queried their position) - they said:
"I can confirm that the aetiology of CFS/ME was outside the scope of our guideline. This means the evidence on aetiology was not reviewed in detail and ultimately, no recommendations were made by NICE on how CFS/ME should be classified.

The text you have highlighted from the Action for ME resource explains how the World Health Organization (WHO) classifies CFS/ME (i.e. as a neurological illness). Similarly, our guidance (which you’ve quoted) also describes how the World Health Organization classifies CFS/ME. Including the Action for ME resource on our website doesn’t mean that NICE has classified the aetiology of CFS/ME in a particular way. "

So if in the ME/CFS guideline they are refusing to classify the reason for ME then it would follow that they shouldn't assign aetiology to it within another guideline either. I would say it is worth pointing this out to them as their "experts" have already ruled on this and until the next review they should stick to their own statements.
 
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Barry53

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Chronic fatigue syndrome, fibromyalgia and functional neurological disorder

Functional symptoms are complaints that are not primarily explained based on physical or physiological abnormalities. They are likely to have an emotional basis. They may mimic neurological disorders. Diagnosis may depend on exclusion of a medical explanation of the symptoms, and require a high level of clinical expertise and judgement. Functional symptoms can complicate a medically explained illness and cause difficulties in diagnosis and delineation
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The institutionalised arrogance is breathtaking. If we cannot explain your symptoms, then it means we know you don't really have anything wrong with you, and you must be imagining it. The possibility that medical science doesn't yet understand your problem is inconceivable. This way we can save money, and not own up to our own ignorance.
 
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Barry53

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Signed. Normally I share on FB, but this time did not, because the title of it is sure to be misunderstood by those not in the know - and the title being what many will not read past. To most people reading that ME is not a functional disorder, I think they will unfortunately read that as meaning it is not a physical disorder, so must be psychological.

Edit: Having down done what I commonly do - reading later posts in a thread first, then going back to the start - I realise that my instinctive interpretation of "functional disorder" is in fact close to definition 1 in @Jonathan Edwards post #5 in this thread. Much more sensible. And does seem to me that the prevailing medical use of "functional disorder" is cock-eyed.
 
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Barry53

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Jonathan Edwards said:
However, when I mentioned his name my wife said she remembered him from the Royal Free where he was general (i.e. non-medical) manager. She says she remembers him as being a sensible straightforward guy that everybody thought well of.
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Let's hope he still is.
 
LidiaT

LidiaT

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Jonathan Edwards said:
This is a very interesting document, in that it apparently says:

a ‘functional’ disorder, defined as being ‘driven by emotion’ that, ‘may mimic physical disease’.

Now that is a very very very big admission. When I was in medicine there were two definitions of 'functional' in this sense.

1. A condition for which no structural cause could be found, only a change in function, assumed to be due to some unidentified shift in physiology.

2. A definition that was never written down but only conveyed by a nod and a wink, approximating to the one in this document.

The advantage of this dichotomy seemed to be that physicians who were that way inclined could use the term pretending it had definition 1 when in fact they wanted to imply definition 2.

What surprised me was when I consulted a physician relative about abdominal pain at night and he ended up trying to 'reassure' me that it was only 'functional'. In fact it turned out to be due to parasites I had acquired in India. I would have been quite happy if he was using definition 1 because I can quite believe that people have abdominal pain for unknown physiological reasons (even if not in my case as it turned out). But I had to conclude that he was using the term simply because everyone else did and it was convenient. And I had a suspicion that like them he really meant definition 2. He was so used to the patter that he did not seem to remember that he was talking to a relative who was a clinical physiologist who would perfectly well understand and accept 'due to some unidentified shift in physiology'.

If functional really is defined as 'driven by emotion' that 'may mimic physical disease' then whoever is using it is stepping way over the mark in terms of medical knowledge. They are bullshitting, plain and simple.
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Here is a link to a list of 85 studies with neurological findings in ME/CFS.

EIGHTY FIVE!!

(It is part of the proposal by Suzy Chapman and Mary Dimmock for the ICD-10 G93.3 legacy terms for ICD-11 WHO classification for ME and CFS.)

https://www.dropbox.com/.../Reference%20List%20of...

The studes listed in red, were included in for consideration by the IOM report.

It beggars belief that with biomedical evidence of organic disturbances growing every day, that these people would even try to pull off such a stunt. Aaarrrggghhhh!! There is seemingly no end to their abuse.
 
alex3619

alex3619

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Large Donner said:
ME can stay under neurological at G93.3 as far as they care they just wont use it.
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Yes, that is a problem with ICD diagnoses. They are just codes, and doctors can get to choose the one they prefer. The diagnostic category of ME might be disappeared this way if enough doctors use a different diagnosis for long enough.
 
Jonathan Edwards

Jonathan Edwards

"Gibberish"
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Rick Sanchez said:
I have to stress that it is of the greatest importance that ME/CFS does not get classified as a functional somatic disorder in the UK.
I advise everyone in the UK to take this issue extremely seriously. DO NOT, underestimate this issue.
the concept of functional somatic disorders is so dangerously appealing to know-nothing politicians who wish to make health care more ''efficient'', ie. save money.
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Very much agree, Rick. Fortunately it looks as we still have an efficient mobilisation system. There are signs that regulators like NICE are hearing what is being said. Maybe the one good side to this is that the more gibberish the neuropsychiatric people talk the easier it is to point out it is gibberish. This guideline looks like a particularly useful piece of gibberish.
 
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