I am logged on via fb, at the top right hand side of petition there is an image of my fb avatar, if I click on this it gives me the option to log out.
ALL Countries Please sign the MEA's new petition to NICE:do not classify ME as 'functional'
- Thread starter Countrygirl
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I am logged on via fb, at the top right hand side of petition there is an image of my fb avatar, if I click on this it gives me the option to log out.
charles shepherd
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Wow!
Looks as though we could go through the 10,000 signature barrier later today.
Please keep sharing with other ME/CFS sites and ME/CFS charities.
Sign here:
https://www.change.org/p/sir-andrew...m_medium=copylink&utm_campaign=share_petition
At 6.30pm we now have just over 9,900 signatures!
https://www.change.org/p/sir-andrew...m_medium=copylink&utm_campaign=share_petition
CS
Looks as though we could go through the 10,000 signature barrier later today.
Please keep sharing with other ME/CFS sites and ME/CFS charities.
Sign here:
https://www.change.org/p/sir-andrew...m_medium=copylink&utm_campaign=share_petition
At 6.30pm we now have just over 9,900 signatures!
https://www.change.org/p/sir-andrew...m_medium=copylink&utm_campaign=share_petition
CS
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Max Davie: Paediatrician, dad, numpty. Generally in reverse order. Mental health guy at @RCPCHtweets. Mental health tweets: @paedMHassoc Board games: @games4families
Responding to Jonathan Edwards's comment on this thread:
I've invited both Max Davie and Phil Hammond to continue the discussion here.
Responding to Jonathan Edwards's comment on this thread:
I've invited both Max Davie and Phil Hammond to continue the discussion here.
Jonathan Edwards
"Gibberish"
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I wonder what evidence there is that psychiatric input helps constipation? We have seen that the evidence for CBT helping ME is diddly squat. I wonder how much better it is for constipation!
His original question:
Do functional disorders need to be entirely psychological in origin, or can they be of mixed causation?
Begs the question what you mean by functional - which was the point of my point. If functional defines the causation then that is your answer - whatever that definition is. If it is 'driven by emotion' then that is what it is - whatever it might mean.
I am none the wiser
His original question:
Do functional disorders need to be entirely psychological in origin, or can they be of mixed causation?
Begs the question what you mean by functional - which was the point of my point. If functional defines the causation then that is your answer - whatever that definition is. If it is 'driven by emotion' then that is what it is - whatever it might mean.
I am none the wiser
charles shepherd
Senior Member
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Below is a definition of a functional neurological disorder from the (neurology) section of one NHS website
When I have discussed this with colleagues who are interested in 'functional neurological diseases' the key message from them is that: the neurological symptoms their patients are experiencing are real and often very disabling but there is no evidence of any neurological disease/pathology present
If you have a functional neurological disorder (FND) you may have symptoms that are extremely disabling. Your symptoms also might have started quite suddenly. Often when people with FND are assessed either at a routine appointment or in an emergency, their symptoms may seem to be those of a serious physical disorder, such as a stroke, mini-stroke or multiple sclerosis. These serious neurological diseases may have been mentioned when you first told a clinician about your symptoms.
When investigations such as scans are done to check for these diseases, there are no indications that there is any neurological disease or damage in the nervous system. This indicates to the doctors that the symptoms are functional, but sometimes the doctor will not be sure and refer to a specialist.
The diagnosis of FND is not just made by ruling out physical causes. A thorough clinical assessment will usually provide other clues. The nature of the symptoms, the way they fluctuate with time and the way they evolve, can all give strong hints to the diagnosis of FND. Tests are sometimes required, partly to reassure the doctor and their patient that there is not anything else that could possibly cause the symptoms. Often these tests pick up slight abnormalities that are not relevant to the symptoms, and it is not unusual to acquire several other diagnoses along the way before the true diagnosis is clear. It often takes many years for a diagnosis of FND to be made.
When I have discussed this with colleagues who are interested in 'functional neurological diseases' the key message from them is that: the neurological symptoms their patients are experiencing are real and often very disabling but there is no evidence of any neurological disease/pathology present
If you have a functional neurological disorder (FND) you may have symptoms that are extremely disabling. Your symptoms also might have started quite suddenly. Often when people with FND are assessed either at a routine appointment or in an emergency, their symptoms may seem to be those of a serious physical disorder, such as a stroke, mini-stroke or multiple sclerosis. These serious neurological diseases may have been mentioned when you first told a clinician about your symptoms.
When investigations such as scans are done to check for these diseases, there are no indications that there is any neurological disease or damage in the nervous system. This indicates to the doctors that the symptoms are functional, but sometimes the doctor will not be sure and refer to a specialist.
The diagnosis of FND is not just made by ruling out physical causes. A thorough clinical assessment will usually provide other clues. The nature of the symptoms, the way they fluctuate with time and the way they evolve, can all give strong hints to the diagnosis of FND. Tests are sometimes required, partly to reassure the doctor and their patient that there is not anything else that could possibly cause the symptoms. Often these tests pick up slight abnormalities that are not relevant to the symptoms, and it is not unusual to acquire several other diagnoses along the way before the true diagnosis is clear. It often takes many years for a diagnosis of FND to be made.
Jonathan Edwards
"Gibberish"
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I don't quite follow that @charles shepherd.
If a functional disorder is one in which there are very real symptoms but there is no pathology that is straightforward. But then there is a suggestion that coming and going symptoms helps make the diagnosis. How can it? Unless of course the diagnosis implies something more - some sort of causation that might come and go. If that is the case, then we need to know what sort of causation they have in mind, that is expected to come and go.
I guess the question is whether benign essential tremor is 'functional'? It is not associated with any pathology as far as I know but is very real. And migraine - is that functional? And what about dyslexia? Or synaethesia? It all seems to me very unclear. And when neurologists blurt out that what it actually means is 'driven by emotion' it becomes clear that all is not very clear.
If a functional disorder is one in which there are very real symptoms but there is no pathology that is straightforward. But then there is a suggestion that coming and going symptoms helps make the diagnosis. How can it? Unless of course the diagnosis implies something more - some sort of causation that might come and go. If that is the case, then we need to know what sort of causation they have in mind, that is expected to come and go.
I guess the question is whether benign essential tremor is 'functional'? It is not associated with any pathology as far as I know but is very real. And migraine - is that functional? And what about dyslexia? Or synaethesia? It all seems to me very unclear. And when neurologists blurt out that what it actually means is 'driven by emotion' it becomes clear that all is not very clear.
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daisybell
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@Jonathan Edwards are you sure that the diddly squat doesn't actually help relieve constipation? 
Countrygirl
Senior Member
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10 000!!I'm trying to pin down the relationship between medically unexplained symptoms and a functional disorder.
My understanding is that the first is a case of "we can't find anything medically wrong with you to explain why you're getting the symptoms you say you're getting", while the second goes a step further with "we can't find anything medically wrong with you and we think the reason you're getting the symptoms you say you're getting is that you're a loon".
If we take away all the verbal window dressing that's being used to foist these conditions on the world (window dressing that is no doubt intended to make the diagnoses sound acceptably scientific) is my explanation anywhere near the true position?
My understanding is that the first is a case of "we can't find anything medically wrong with you to explain why you're getting the symptoms you say you're getting", while the second goes a step further with "we can't find anything medically wrong with you and we think the reason you're getting the symptoms you say you're getting is that you're a loon".
If we take away all the verbal window dressing that's being used to foist these conditions on the world (window dressing that is no doubt intended to make the diagnoses sound acceptably scientific) is my explanation anywhere near the true position?
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Countrygirl
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Spot on!
And..........
medically unexplained symptoms = "we can't find anything medically wrong with you and what we can't find can't exist.....ever.......so we think the reason you're getting the symptoms you say you're getting is because you are a fruitloop"
Functional disorders arise when a psychologist who promotes functional disorders says "you have a functional disorder". The psychologist then has no remedy except to blame / abuse the patient for not getting better. Some psychologists seem happy to make a career out of this, and whenever a functional disorder is found to have a physical cause (MS, stomach ulcers, AIDS, etc etc) they just move on to the next set of symptoms where their more honest colleagues currently have to say "I don't know".
Determing whether functional disorders are psychological in origin or of mixed causation would involve examing the mind of the functional disorders promoting psychologist. Ugh.
I've sometimes wished I suffered from synaesthesia - took me years to get hold of A.R.Luria's book "The Mind of a Mnemonist" in the days before you could just find it on the internet, been fascinated by it ever since. Always thought of it as a superpower I'd like to have rather than a disorder.
PracticingAcceptance
Senior Member
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Can neurologists help us, with services & knowledge as they are now? If I got referred to a neurologist, what could they do to help? I have trouble speaking sometimes, and remembering, and of course concentrating. I think of CFS as neurological because my main symptoms are. But is there any point in me seeing a neurologist?
Yes there needs to be more research into the neurology of ME. But can they actually help diagnose and treat us? In terms of understanding & reassurance, I don't know if I need to get that from a neurologist as long as I can get this from a CFS specialist.
Is this petition about the principle of ME being mislabeled as functional, or is it about the field of neurology taking on ME? Because I doubt neurologists will see ME patients until they have protocol to act by, which will only happen when there's enough research. Right?
I'm making the assumption that neurologists don't really touch ME patients right now, because they can't help as things are now - please correct me if I'm wrong.
The NHS is under a huge strain as it is. They have to do only what is necessary. If calling ME functional is a convenient way for them to not treat us, then I'd object to that. But if this is just about not referring us to neurologists because they don't have any help to give us anyway because of a lack of understanding/research, then I'm alright with this guideline.
I don't want to sign a petition for the purpose of being seen by a neurologist if they can't help me anyway.
I'd sign a petition about neurology research for ME.
I'd sign a petition about ME being mislabeled as functional.
But I'm not going to sign something which I don't understand enough of the detail about.
Happy to be persuaded and informed, if anyone can help.
Yes there needs to be more research into the neurology of ME. But can they actually help diagnose and treat us? In terms of understanding & reassurance, I don't know if I need to get that from a neurologist as long as I can get this from a CFS specialist.
Is this petition about the principle of ME being mislabeled as functional, or is it about the field of neurology taking on ME? Because I doubt neurologists will see ME patients until they have protocol to act by, which will only happen when there's enough research. Right?
I'm making the assumption that neurologists don't really touch ME patients right now, because they can't help as things are now - please correct me if I'm wrong.
The NHS is under a huge strain as it is. They have to do only what is necessary. If calling ME functional is a convenient way for them to not treat us, then I'd object to that. But if this is just about not referring us to neurologists because they don't have any help to give us anyway because of a lack of understanding/research, then I'm alright with this guideline.
I don't want to sign a petition for the purpose of being seen by a neurologist if they can't help me anyway.
I'd sign a petition about neurology research for ME.
I'd sign a petition about ME being mislabeled as functional.
But I'm not going to sign something which I don't understand enough of the detail about.
Happy to be persuaded and informed, if anyone can help.
alex3619
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- Logan, Queensland, Australia
Bipsers (biopsychosocialites) co-opt terms. They are forever redefining the same underlying concept, ever since Charcot. Then they argue on the commonly understood meanings of the terms, while hauling out their technical meanings at the punchline.
Functional is perfectly valid as a term, as is UFO. Calling UFOs flying saucers without hard evidence is the same leap as calling functional disorders psychiatric, although I give the flying saucer proponents better odds of being right.
alex3619
Senior Member
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- Logan, Queensland, Australia
This serves the purpose of a too hard basket. It also serves insurance providers who in many cases can limit coverage on psychiatric disorders. That is one of the reasons some insurance companies are involved in promoting these ideas. Then we have the long history of Freudian claims, debunked and debunked, but they live on. Like zombies. Hence this is a case of Zombie Science, science and pseudoscience living on beyond its use by date due to vested interests.
alex3619
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This should be the most common statement made by any medical professional.
You need to go back to read the first post in this thread which has 2 useful links. "diagnosing" patients with a functional disorder (i.e. hysteria) is a way to dump patients with neurological problems on primary care or possibly some "specialist" nurses or the like.
The main problem with it is that it is dangerous damaging nonsense. Who wants their doctor to think their symptoms are all in their mind? http://www.meassociation.org.uk/201...-not-a-functional-disorder-27-september-2017/
Invisible Woman
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@lior
I'm in the UK. From my experience and input from others over the years neurologists are firmly in the BPSers camp.
While NICE is finally reviewing their guidelines on ME, there is an insidious movement afoot to conflate ME with Functional Somatic Syndrome / MUPS /MUS.
If we let this neurology guideline go unchallenged then the risk is your GP may consider a referral to neurology, see the guidelines and from then on label you with FSS. The only referral you'll get from there on in is likely to be CBT.
Depending on your GP it could effectively block you from ever being referred to specialists again - even for an additional & unrelated condition.
That's my reading of the situation anyway.
I'm in the UK. From my experience and input from others over the years neurologists are firmly in the BPSers camp.
While NICE is finally reviewing their guidelines on ME, there is an insidious movement afoot to conflate ME with Functional Somatic Syndrome / MUPS /MUS.
If we let this neurology guideline go unchallenged then the risk is your GP may consider a referral to neurology, see the guidelines and from then on label you with FSS. The only referral you'll get from there on in is likely to be CBT.
Depending on your GP it could effectively block you from ever being referred to specialists again - even for an additional & unrelated condition.
That's my reading of the situation anyway.
Cheshire
Senior Member
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Jon Stone is the neurologist that "renewed" theory and care of functional neurologic disorders.
Here's what he writes about "CFS/ME" on his website:
http://www.neurosymptoms.org/#/fatigue/4533053151
Here's what he writes about "CFS/ME" on his website:
http://www.neurosymptoms.org/#/fatigue/4533053151