Please sign the MEA's petition asking NICE to review the guidelines for ME (CLOSING MONDAY JULY 24)

[SamanthaJ]

Very well done to the MEA for organising it and thank you to everyone who has signed it and shared it. Thank you to those of you who wrote comments underneath. No one who reads them will be in any doubt that the guidelines need to change.

 

[charles shepherd]

My initial thoughts when we launched this MEA petition against NICE at the start of the week was that if we were very lucky we might get 5,000 signatures before having to make our stakeholder submission

We have achieved 10,000 signatures in just five days - which is a fantastic response from the ME patient community, as well gaining some signatures from healthcare professionals!

We still have another 7 days to go - so the final figure seems likely to be several thousand higher

Again. my initial thoughts were that the sort of figure we were hoping to achieve might not have that much effect on NICE

But having over 10,000 patients expressing a vote of no confidence in the content of a NICE guideline just cannot be ignored

It also gives us some powerful ammunition to use at a media and parliamentary level

So thank you so much to everyone who has voted and commented

And if you still need to vote please make sure you do so over the next few days!

Dr Charles Shepherd
Hon Medical Adviser, MEA

 

[charles shepherd]

'Suspected neurological conditions'

Funny old world…

The MEA has just been invited by NICE to register as a stakeholder in the guideline development process for 'suspected neurological conditions'

Having been asked I must assume that NICE regard ME/CFS as a 'supected neurological condition' !

CS

 

[charles shepherd]

Closing date for stakeholder submissions reminder - this has been extended to July 24th at 9am:

Email:
Dear Colleague

RE: NICE guideline on CG53 Chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy): diagnosis and management

The consultation on the proposal not to update this NICE guideline closes at 9am 24 July 2017. We regret that we will not be able to consider any comments received after this date.

To find out how you can comment, please visit the consultation page on our website. If your organisation has already submitted comments, thank you for taking the time to consider the proposal.

If you have any queries about this consultation, please contact us at surveillance@nice.org.uk

Kind regards
Surveillance Team

NICE Centre for Guidelines
National Institute for Health and Care Excellence Level 1A | City Tower | Piccadilly Plaza | Manchester M1 4BT | United Kingdom
www.nice.org.uk

 

[Griffin]

The petition has been extended until 21st July 5 pm so still time to sign.

https://www.change.org/p/petition-t...9130947&l=32_HTML&u=20444981&mid=7259882&jb=5

 

[slysaint]

'Suspected neurological conditions'

Funny old world…

The MEA has just been invited by NICE to register as a stakeholder in the guideline development process for 'suspected neurological conditions'

Having been asked I must assume that NICE regard ME/CFS as a 'supected neurological condition' !

CS

In their scope document for this under NICE Pathways:
"
When this guideline is published, the recommendations will be incorporated
into the existing pathway on
neurological conditions
"
https://www.nice.org.uk/guidance/gid-cgwave0800/documents/final-scope

ME is included in their neurological conditions overview:
http://pathways.nice.org.uk/pathways/neurological-conditions

and yet when you click on ME you get
The requested path could not be found
???

 

[Countrygirl]

and yet when you click on ME you get
The requested path could not be found
???

I tried it too @slysaint and I had the same message.

Perhaps the MEA could raise the issue with them?

 

[charles shepherd]

I tried it too @slysaint and I had the same message.

Perhaps the MEA could raise the issue with them?

Yes, I am going to investigate further next week - as well as registering for stakeholder status in 'suspected neurological conditions'

A new learning curve is about to begin!

CS

 

[dangermouse]

A new learning curve is about to begin!

Good luck

 

[Valentijn]

and yet when you click on ME you get
The requested path could not be found
???

I think someone tried to make the page URL have "chronic-fatigue-syndrome/myalgic-encephalomyelitis" in it, which doesn't work due to the "/" being a special character representing a subfolder.

It's probably trying to go to http://pathways.nice.org.uk/pathways/chronic-fatigue-syndrome-myalgic-encephalomyelitis

 

[slysaint]

Yes, I am going to investigate further next week - as well as registering for stakeholder status in 'suspected neurological conditions'

A new learning curve is about to begin!

CS

This process started in 2015; seems rather late in the day to ask you to register?
The irony is that although ME is included under the list of neurological conditions there is nothing vaguely neurological in NICEs guidelines for diagnosis or treatment of ME.

 

[trishrhymes]

My cynical self says they'll just chuck us in the FND Functional Neurological Disorders dustbin diagnosis which then goes on the MUS rubbish heap, and offer us some psychotherapy.

 

[Barry53]

Interesting ...

The broken link has the URL http://pathways.nice.org.uk/pathways/chronic-fatigue-syndrome.

There is another valid URL http://pathways.nice.org.uk/pathways/chronic-fatigue-syndrome-myalgic-encephalomyelitis

Have they simply renamed the original CFS URL so that it at least acknowledges ME? Or is it actually new content as well?

I'm guessing they have simply overlooked the need to update the link to the new URL.

 

[Barry53]

Hmmm ...

 

[Valentijn]

I didn't do any in-depth looking or comparisons, but the content looked the same, with a bit of a different layout and graphics.

 

[Countrygirl]

10 558!!

 

[Barry53]

I think someone tried to make the page URL have "chronic-fatigue-syndrome/myalgic-encephalomyelitis" in it, which doesn't work due to the "/" being a special character representing a subfolder.

It's probably trying to go to http://pathways.nice.org.uk/pathways/chronic-fatigue-syndrome-myalgic-encephalomyelitis

Sorry - only just realised you got there before me!

 

[charles shepherd]

Looks as though we are going to crash through the 11,000 signature barrier later today

Keep on voting!

CS

 

[Countrygirl]

11 000!!!!

 

[cigana]

Signed. Good work everyone!