ME is not a functional disorder: ME Association 13,000+ petition sent to NICE

My latest one poked pins in my hands and feet....at the end she said ”yes you have extensive neuropathy...sometimes we don’t know why? (Shrugs)”.

Perhaps she liked the pins bit?

 

Do they, at any point, define what they consider 'significant impact' to be?

I've got used to these people meaning completely different things to what anyone, literally anyone, else would understand by the words they use.

Would, for instance, not being able to work, even part time, or volunteer, count as significant? How about not being able to drive a remote control that I've owned for 15 years? Or socks, transient inability to figure out how they work, does that count?

Minor things, trivial things, but indicative of a 'significant' problem, or not?

 

This is just totally incompetent. People with no working knowledge of a disease and an obvious incapacity to learn should not be making decisions about it. Cognitive difficulties are one of the most impactful symptoms of this disease, in my case by far the most disabling.

This is too much like Peter White expressing his disbelief about why digestive issues, one of the most common problems in ME, should be part of the NICE guidelines. A man who has presented himself as an unimpeachable expert in this disease for decades is completely ignorant of one of its most common symptoms.

Supply-side medicine is just stupid. These people have no idea what they're doing while making impactful decisions that will affect millions and they are completely clueless about the consequences they will create. The process is completely broken.

 

I think again that the problem is with how the 'cognitive problems' are described/interpreted.
More often than not they are confused with 'mental problems' (the benefits questionnaire for ESA for example has cognitive problems in the 'mental' section and tend to be largely directed at feelings of anxiety etc).

I was pleased to hear in Nina Muirheads interview on the ME show, her description as it being as though you are suffering from concussion as opposed to the usual 'behavioural symptoms' that are usually referred to.

 

I could work part time in our business doing admin. if it weren't for my cognitive problems

 

I think this is spot on.

During my disciplinary and grievance at my last employer they made a big thing about “my attitude and behaviour” citing me rolling my eyes when being shouted at in a meeting (I just paused and shut my eyes to collect my thoughts before responding). They even called in witnesses to fabricate what a difficult person I was to work with, transposing their bad behaviour onto me.

Luckily I had plenty of colleagues I worked with that gave witness statements to show that I wasn’t this aggressive , sullen disrespectful person I was being portrayed as.

Rather I was always quite a calm, logical and passive colleague that worked well in teams and was good at my job (I had worked there for 4 years before) and clearly I was confused and forgetful over the period and this was very out of character.

I guess the BPS lot would argue that concussion is a mental health issue though. I’ve noticed most of their spin is centered around judgements on people’s behaviour being ‘correct’.

This conveniently is the basis of most stigma we see in society so mirroring this helps them win support for their strange and non-science based ideas.

 

I had forgotten how bad things were with NICE until I went back to read the original MEA letter.

So they have made it clear, have they, that when they use the term "functional disorder" they mean "emotionally generated", rather than a disorder of function of unidentified origin.

What can be meant by a condition which "mimics" physical disease? Does a "condition" have the capacity to "mimic" anything. The similarity is entirely in the eye of the beholder. This seems to need an entirely different form of words. Mimicry is often a deliberate act. In the case of a "condition" all there is is a patient displaying certain symptoms. The only agent capable of mimicry is the patient.

Mimicry seems to suggest so much more than "having similarities to", "having affinities to" or "analogous to". One assumes that the draftsman was competent and aware of the effects of words.

 

I think there will be no contradiction.

"Functional" means in those settings psychosomatic. In Germany, at least, they're "honest" about it.

 

I hope you are wrong ...but to quote from Star Wars “I have a very bad feeling about this”

 

from a brief bit of googling it [concussion] is taken seriously by neurologists who will perform a number of tests for diagnosis............. (interestingly the treatment is rest). But if it doesn't resolve, it then becomes 'post-concussion syndrome'.....and it's on to the psychs, anti-depressants etc.

 

The underlying disconnect is illustrated by the sentence:

Diagnosis may depend on exclusion of a medical explanation of the symptoms, and require a high level of clinical expertise and judgement.

Yet the recommendation is not to bother even with a neurology referral.

The only rational interpretation is that once an appropriate authority with the high level of expertise has pronounced the patient does not need further assessment. From personal experience I know how wrong this sort of approach is. There never comes a time when you know you will not turn out to have been wrong in medicine.

I think the ME/CFS guidelines should take precedence over any inclusion in a category like this but there is a lot of work to do to get the ME/CFS guidelines to follow the evidence and need. Moreover, if the ME/CFS guidelines change the situation for wider categories will have to change too.

The deeper problem is that doctors do not actually understand how they themselves make decisions. There was a nice paper by Kirwan on this about thirty years ago. Even if the experts are right it is no good them saying 'we know which patients you should not refer to us' because that in no way means that the GPs know which patients those are. To base a guideline for people with limited experience on a presumption of 'high level of clinical expertise' is absurd. The people with that level of expertise are not those following the guidelines by definition - they write the guidelines.

 

NICE guidelines seem to be primarily about limiting access to specialist referrals and cost management for the NHS, patient care a mere afterthought.

I read in a journal article that up to 30% of initial referrals to UK neurology services are for "functional symptoms". This doesn't seem to give them pause. Lives and productivity ruined by symptoms which neurology is totally uninterested in researching. The "explanation" is always some Freudian mumbo-jumbo.

It's very convenient that they can basically just declare you one of ***those*** insane troublesome patients and wash their hands of your case with no damage to their ego or perceived self-efficacy.

Despite such a high rate of failure neurologists retain power and status which is amazing when you consider what would happen to a private sector company that had these levels of product failure and customer dissatisfaction.

I dread the ME/CFS NICE guidelines based on the comments here about cognitive dysfunction. This is a life-destroying symptom for many of us on the mild/moderate end of the spectrum.

 

I always liked that description and used it for myself. The mental fog that comes with the flu is also a good analogue, perhaps better because at least it's a common experience that almost everyone is familiar with. Really goes to show how much physicians' personal opinions influence their work when they reframe it according to their preconceptions.

 

Sounds very much like the "rousing reassurance" and "explaining the unexplained" model where the act of explaining something (doesn't matter if it's complete BS) has a therapeutic effect that dispels the irrational behavior. Nevermind the complete idiotic madness of actually seriously arguing to "explain the unexplained" and how anyone can say that and have any self-respect left.

A few centuries ago these idiots would have been crowing about angels and demons. Irrationality changes and morphs but the fundamentals remain.

 

I'm not sure about the concussion thing.

I've had many things hit my head pretty hard and whilst superficially the difficulty in moving, or thinking beyond primary drives may seem similar, the feedback sensations are totally different.

A shocked nervous system/brain doesn't behave the same way as one that simply doesn't work properly, although the degraded performance may seem similar.

There's a simple test, find a group of lads and take the piss out of them until they give you a good kicking, and then assess afterwards how close this feels to ME - this probably shouldn't be interpreted as 'medical advice' lol

 

I think that the word I was looking for is "resembling".

Having had a further night to think about this, it seems even more astonishing that NICE would reopen the old discussion about "functional". I thought that even Sharpe and Stone had accepted, at least for public consumption, that the term did not imply any causation and was purely descriptive of disturbance of function. I thought the matter was settled. I must have stopped reading too soon.