Hurry Please: Need signatures quickly as... - Ramsays Disease

Ramsays Disease

567 members470 posts

Hurry Please

Theresa60 profile image
12 Replies

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.

change.org/p/sir-andrew-dil...

Written by
Theresa60 profile image
Theresa60
To view profiles and participate in discussions please or .
12 Replies
readerlist profile image
readerlist

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.

ukmsmi4 profile image
ukmsmi4 in reply to readerlist

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!!

readerlist profile image
readerlist in reply to ukmsmi4

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.

ukmsmi4 profile image
ukmsmi4 in reply to readerlist

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 . . . 😉

Seascape profile image
Seascape

Signed up

CheshireKatz profile image
CheshireKatz

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

ukmsmi4 profile image
ukmsmi4

Signed and shared xx

bulletheblue profile image
bulletheblue

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

Ian123 profile image
Ian123

Signed

carch520 profile image
carch520

Done

Jonesbones profile image
Jonesbones

signed

Cloudedout profile image
Cloudedout

Got through and signed

You may also like...

Please ask your MP to attend the APPG on ME Wed May 11th

awareness the better so please share and encourage as many people as you can to help. Hope you...

Request to sign a petition to the government for funding for ME research

approached needs to change dramatically and Fibromyalgia is no different. Can I ask you all to...

Kickstarter campaign on AllTrials continuing efforts please share on social media

and medications. All scientific research trials need to be published instead of some information...

Helpful guides for us and our practitioners?

proving most helpful, to both manage and treat Ramsay's disease (also known as SEID, ME/CFS) both...

Can we have a poll or info gathering on how we are treated as Fibro/ME patients in the UK?

dismissing me with \\"No need for further testing\\" and \\"We can't do anything to help people...