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

Hoping that this is a simple oversight and he gets a reply this week. It's going to be very telling what response he gets with regards to the Other NICE review.

 

I'm a bit confused - what's the response?

Does the MEA just mean it got an acknowledgement of receipt?

 

Certainly looks like it.

 

I think the government has robots that write that kind of thing.

 

A non-committal robot.

 

Nothing I presume. And nothing will happen before the scoping thingy or even later. Or it's already been filed in the waste bin.

 

what was the outcome of this?
@Russell Fleming

 

The final guidelines are out: https://www.nice.org.uk/guidance/ng127/resources

Chair of the committee for this was Richard Grunewald, who was on the last NICE CFS committee.

Some bits of interest:

 

Recommendation 30–Advice for suspected functional neurological disorders
As functional neurological symptoms usually fluctuate and evolve with time, the committee agreed thatit was important to address the nature of the condition with people with this condition in order to allay concern about the presence of physical illness and to reduce pressure for onward referral for further specialist opinion.

So don't worry your little heads about it. That's where the problem would lie, and there is no problem.

 

This reads like a bit of a set back...So if the ME/CFS guidelines end up recommending something completely different, that contradicts these guidelines, how does NICE reconcile the difference? Or can GP’s cherry pick which guideline they want to apply?

Is there a revision process that is quicker than the 2-3 year review process or can the ME/CFS review recommend the re-write of this to exclude the mention of CFS under the remit of clarity to gp’s etc?

This looks decidedly worrying to me.

 

It does say: 'People with CFS/ME should be referred according to local pathways (see CG53)'. That means the final ME guideline will trump this, and presumably there will be a link to those guidelines.

 

Thanks for clarifying ...I thought that’s what it meant ...I hope this is something that can be made explicit in the writing of our new guideline.

I presume this will be a topic for discussion? It would be good to challenge the use of the “functional” word to clearly state that it is not currently the belief that there is sufficient evidence that ME has a psychological basis or that this is a so called functional disorder.

 

This extract from above shows how little they understand re moderate or severe ME.

"Difficulties with memory and concentration are a core diagnostic criterion for chronic fatigue syndrome and myalgic encephalopathy (CFS/ME) and may be present in people with fibromyalgia and functional neurological disorder. People with CFS/ME should be referred according to local pathways (see CG53).The committee considered that a referral for neurological assessment in these cases is not necessary, unless the cognitive difficulties have a significant impact on everyday life."

Trish's poll on the "most limiting symptom of ME" (forget exact wording) on here, had cognitive impairment as the worst symptom for a huge majority.
For my daughter, it is the difference between being able to study A-levels and forgetting what she had been reading the previous day.
Her Maths tutor said "It's like teaching a different person!"

 

I’m mild/moderate and cognitive dysfunction is the most limiting part of it... I agree this is just such a bizarre thing to say.

If my only problem was my wife constantly having to jog my memory on everything ...life wouldn’t be too bad.

it’s the wanting to scream at traffic noise, or next doors kids or the constant dizziness/blurring of vision through the day, general confusion (what was I just doing, why can’t I spell or do maths or follow a conversation when I was fine an hour ago?) or to tell my wife and son to talk in series not parallel coz I can’t hear them etc.etc.etc.

I can’t even comprehend what it’s like for the severe end of the scale if being mild is this bad.

They are just ignorant shallow thinkers that don’t feel the need to ever be informed. Well at least we can be assured that going to see a neurologist for a recognised condition is about as useful as seeing a fortune teller anyway (in the main from my n=1 experience)

 

n=2. Mine followed me down the corridor and hit me in the knees with a hammer.