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Ramsays Disease
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Hurry Please

Need signatures quickly as this petition will close on Wednesday 11 October at 5pm

The Petition

We want to give everyone the opportunity to demand that NICE remove all reference to M.E./CFS from the new guideline on suspected neurological disorders, and to claims that M.E./CFS is a ‘functional’ disorder.

We believe that neurology should not be trying to reduce access to its’ medical experts, but should be welcoming and supporting people with this disease. We need help, not disdain.

We need neurology to:

help with diagnosis and management throughout the period of ill-health,

provide reassurance and understanding,

advise on the best course of treatment,

be more involved with research into the biomedical nature of M.E./CFS

Please sign the petition and help us demonstrate to NICE that once again, we are not prepared to stand by while others make decisions about our healthcare without proper consideration and respect.

Please sign / share as soon as possible thank you.


12 Replies

Signed and fingers crossed I will see a neurologist one day treating a condition that has been in the World Health Organizations neurological category since 1969 (G93.3) instead of of a mishmash of occupational therapists, psychiatrists and infectious disease consultants that our health service use in service provision.


Wow you've been lucky. I've only ever been sent to see a CFS clinic (refuse to call them ME clinics) for a confirmation of diagnosis and nothing else. A neurologist for a totally insulting ten minute discussion for him to tell me he thinks I have FND (total wastebasket diagnosis that means no idea what's wrong with you). And one psychiatrist for total waste of time CBT.

I'd love to see an OT or an infectious disease consultant. Or if it comes to that a zookeeper would do if they actually knew anything about ME!!

1 like

Last figures I saw claimed 80% of neurologists do not believe ME exists so my dream of seeing a knowledgeable neurologist remains a dream for the foreseeable unfortunately.

Vet / zookeeper is a possible step forward as society would condemn the neglect if we had the same status as animals.

1 like

I can well believe that figure from the comments you see online! Amazing isn't it when it's been classified as neurological by the WHO since 1969?!

I'm off to learn how to speak Panda . . . 😉


Signed up


Signed and shared so this act of neglect can be prevented.


Signed and shared xx


Signed and incredulous that NICE are still accepting psych bias after deciding a review of it's guidelines were necessary.

1 like







Got through and signed


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