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

Jonathan Edwards

Jonathan Edwards

"Gibberish"
Messages
5,256
Tilney said:
Is it still a FND if in a blind trial pill A stops the symptoms & pill B doesn't ?
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It could be if the pill affects the brain that then reduces emotions that then reduces the neurological symptoms.

It strikes me that all this psychiatric/ psychological stuff is confused because people are muddling up two different directions.

1. Illness affects thinking.

That is what ME is about. And it happens in rheumatoid arthritis and multiple sclerosis and you name it. It is what a lot of psychiatry is about too, but psychiatry specifically deals with thinking that has become irrational.

2. Thinking affects illness.

That is what people call 'psychological' and is actually quite different from 'psychiatric'. Nobody thinks psychiatric diseases are 'psychological' any more than any other disease.

And in 'BPS' nobody actually knows which psycho they are talking about.
 
Countrygirl

Countrygirl

Senior Member
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5,638
Location
UK
I see that the votes are markedly reducing in speed and we will be hard pressed to reach 15 000 without a little advertising.

Could we please contact second cousins, great grandparents, great nephews whomever, and ask them if they will support the MEA petition please?

Let's at least hit 15 000.

20 000 of course would be better. :hug:
 
Y

Yogi

Senior Member
Messages
1,132
Why did the last NICE petition close? I understand it is good to have a deadline. Is it not best to keep it open so it can still gather signatures.

Why is this petition going to close on Wednesday. Hopefully the MEA can answer this.

Also I recall that some petitions you could sign anonymously by ticking a box so your name is not displayed and searchable on the net. This petition does not have that option?
 
A

AndyPR

Senior Member
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2,516
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Guiding the lifeboats to safer waters.
Yogi said:
Why did the last NICE petition close? I understand it is good to have a deadline. Is it not best to keep it open so it can still gather signatures.

Why is this petition going to close on Wednesday. Hopefully the MEA can answer this.

Also I recall that some petitions you could sign anonymously by ticking a box so your name is not displayed and searchable on the net. This petition does not have that option?
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I asked the same question on the last petition the MEA ran, from memory the explanation given was that a deadline would encourage people to sign it and ending it would give them an opportunity to present the total to NICE. Neither answer I really understand, as you say, leaving it open would allow it to attract further signatures, and it easy enough to just take a screenshot at any particular time, to capture the total at that point.

Having already signed this, I can't check about anonymous signing but I think the option you mention was available to me when I signed it.
 
Countrygirl

Countrygirl

Senior Member
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5,638
Location
UK
The petition closes at 13, 593!!


Well done everyone!
12 OCT 2017 — Dear supporter,

The ME Association petition, calling on NICE to remove all reference to ME/CFS being a functional disorder, driven by emotions, only mimicking physical disease, was supported by a very impressive 13,593 people.

The petition supports the earlier submission made by Forward ME - the collaboration of ME/CFS charities including the ME Association and chaired by the Countess of Mar - made as part of the NICE guideline process.

The new guideline - 'suspected neurological conditions' - said these things about our disease without any supporting evidence and was clearly wrong. It is our hope that with your help we will see the new guideline amended before it is published.

We will present the completed petition to Sir Andrew Dillon, CEO of NICE, in the coming days and when we hear back from him we will let you know via our website and social media.

Thank you for your support

With kind regards

The ME Association
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https://www.change.org/p/sir-andrew...4083201&l=32_HTML&u=29752558&mid=7259882&jb=2


 
Creachur

Creachur

Guest
Messages
51
Cheshire said:
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
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As I recall, Jon Stone and his colleagues at Edinburgh are leading lights in advancing the cause of Functional Neurological Disorders in the UK. I would not be at all surprised to learn that Jon Stone et al are behind the push for NICE to issue guidelines although I haven't seen the list of committee members on this particular project.

The definition of Functional Neurological Disorder is broader than "emotionally driven" symptoms (as I saw described earlier in this thread). It includes symptoms such as non-epileptic seizures which is actually said to improve with Cognitive Behavioural Therapy. There used to be a video on YouTube of a FND epileptic attack and it looks dramatic. That web site you link used to contain examples of various conditions and was, a few years ago, considered to be a significant resource.

However extending FND to CFS/ME seems a stretch too far. There may (just) be some elements of FND is some of the myriad symptoms of CFS/ME but to say CFS/ME is largely a FND appears to be really overstating any connection.
 
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