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

[Countrygirl]

7 500!!!!

 

[Aurator]

Is there some critical number which once reached will oblige NICE to change their minds? I wish there were, but doubt it, unless I've missed a crucial point somewhere about a critical number of signatures on a patient organisation's petition suddenly being able to override NICE's considerable decision-making autonomy.

 

[SamanthaJ]

Is there some critical number which once reached will oblige NICE to change their minds? I wish there were, but doubt it, unless I've missed a crucial point somewhere about a critical number of signatures on a patient organisation's petition suddenly being able to override NICE's considerable decision-making autonomy.

I think it's more that it would be unprecedented for so many patients to raise an objection to a guideline. NICE can just ignore it, but then they can no longer claim to be listening to patients. It also allows the MEA and other pro-patient groups to point to evidence of patient support.

 

[Aurator]

I think it's more that it would be unprecedented for so many patients to raise an objection to a guideline. NICE can just ignore it, but then they can no longer claim to be listening to patients. It also allows the MEA and other pro-patient groups to point to evidence of patient support.

That's a good answer, but I suspect NICE would have a simple explanation for the lack of precedence: namely that ME/CFS is an illness that makes its sufferers uniquely militant in the face of treatment guidelines that don't meet with their approval. Given this, masses of signatures would be seen not so much as an indication of the need for change as a symptom of the condition the signatories are suffering from.

I can see that this viewpoint is not like-bait, but it needs expressing.

 

[Sean]

I suspect NICE would have a simple explanation for the lack of precedence: namely that ME/CFS is an illness that makes its sufferers uniquely militant in the face of treatment guidelines that don't meet with their approval.

It is a line that is getting harder to sell, as more and more of the real story comes out.

The UK medical establishment cannot hold out against reality forever.

 

[arewenearlythereyet]

7893 we are nearly at 8000

 

[Barry53]

Is there some critical number which once reached will oblige NICE to change their minds?

10,000,000,000,000,000,000,000,000,000,000,000,000,000,000,000,000,000,000,000,000,000,000,000 probably.

 

[Aurator]

10,000,000,000,000,000,000,000,000,000,000,000,000,000,000,000,000,000,000,000,000,000,000,000 probably.

That's finite at least, Barry, so might be doable. I take it signatures written by bacteria count.

 

[Barry53]

That's finite at least, Barry, so might be doable. I take it signatures written by bacteria count.

Nope! Finite it may be, but so far as NICE is concerned any number will probably be deemed infinite.

 

[charles shepherd]

Is there some critical number which once reached will oblige NICE to change their minds? I wish there were, but doubt it, unless I've missed a crucial point somewhere about a critical number of signatures on a patient organisation's petition suddenly being able to override NICE's considerable decision-making autonomy.

There isn't an accurate answer to your very valid question

However, as with the UK government petitions, I don't think any organisation like NICE can simply dismiss a petition that gains 10,000 or more signatures

And it looks as though we should go through this 10K barrier well before the deadline for submissions closes

Having 10,000+ signatures will also provide our parliamentary colleagues with something to work with….

CS

 

[Barry53]

Having 10,000+ signatures will also provide our parliamentary colleagues with something to work with….

 

[charles shepherd]

Looks as though we should break through the 8,000 barrier by the end of tonight…

CS

 

[Countrygirl]

8000!!!!!

 

[arewenearlythereyet]

This is better than the general election

 

[charles shepherd]

Perhaps someone could start a petition in support of NOT reviewing the NICE guideline - seriously!

There may just be someone out there who would like to support the current NICE guideline

And we could not then be accused of failing to provide another option in support of NICE

CS

 

[SamanthaJ]

Perhaps someone could start a petition in support of NOT reviewing the NICE guideline - seriously!

There may just be someone out there who would like to support the current NICE guideline

And we could not then be accused of failing to provide another option in support of NICE

CS

That occurred to me, but I was worried there might be 10,000 CBT practitioners who'd sign it! Would be interesting to see, though.

Edit: Frankly, that stakeholder list made it look like there might be 10,000 therapists out there...

 

[Mary]

This is better than the general election

Better than our U.S. election for sure!

I just signed ---

 

[Mary]

@Countrygirl - I almost didn't even look at this thread because I had assumed I could not sign, being a furriner and all

It might be good if you could indicate in the title that non-UK residents can sign -

 

[Countrygirl]

@Countrygirl - I almost didn't even look at this thread because I had assumed I could not sign, being a furriner and all

It might be good if you could indicate in the title that non-UK residents can sign -

Thanks @Mary for that advice!

I have changed the title so that people realise it is an international petition.

 

[Countrygirl]

That occurred to me, but I was worried there might be 10,000 CBT practitioners who'd sign it! Would be interesting to see, though.

Edit: Frankly, that stakeholder list made it look like there might be 10,000 therapists out there...

I think this soon will be a realistic fear!

https://www.reed.co.uk/career-advice/how-to-become-a-cbt-therapist/

The above is a link to CBT training. It's a good deal. Pay £12 (and a further few quid for the certificate) and you can train online as a CBT therapist and apply for a job with the IAPT service as is advertised in the training documents.

From stacking shelves in Tesco to curing people with ME in six weeks for a starting salary of £24 000 rising to £40 000. Not a bad deal.!!................as long as you're not the poor patient, of course.