Proposed Letter to NICE

[Daisymay]

Well done @Graham. You've put together a good letter.


2. On the back of the robust arguments you have made against the use of CBT and GET, I would reiterate the call for them to be suspended / removed from the current guideline as a matter of urgency in order to protect patients from potential harm.

Thank you for your efforts.

Great letter Graham et all.

I think this point from Paul is absolutely critical to protecting patients.

The CBT/GET view of ME is shown by the scientific evidence to be invalid (IOM report etc), therefore the present guidelines based on the discredited BPS model must be withdrawn now, no waiting until 2020, that is completely unacceptable.

Patients safety is paramount and the law requires patients fully informed consent. They can't put off fully informing them that the present guidelines are invalid for two years until NICE gets round to finishing their review, they need to take action on this now.

The present guidelines urgently need to be removed and NICE needs to take action to ensure doctors/medics and the public are aware of this, that the present guidelines are scientific invalid and potentially dangerous.

And they need to remember isn't a question of differing opinions, points of view that need to be aired over the next couple of years, no, it's about scientific evidence clearly showing that the BPS model and treatments NICE has been recommending all these years are invalid and potentially dangerous.

So no delays, no procrastination to try and save face, NICE must take action now to protect patients.

And if they refuse to do so, then what are the legal consequences to NICE of allowing their invalid guidelines to stand for the next two years?

 

[Amw66]

Please add my name, Ann West

 

[It's M.E. Linda]

Will PM you. Excellent letter Graham, as someone whose 2 brain cells are always struggling, thank you for your time & energy in composing the letter.

 

[Jan]

Am I too late? Thanks for writing the letter guys, fantastic job. I can't find the other thread about the letter. Please add me, Jan Sussex if I'm not too late.

 

[Barry]

And boasting about having an iPhone.

'tis a very elderly iPhone .

 

[Graham]

I'm a very elderly iMc

 

[chrisb]

I'm a very elderly iMc

If you find yourself slowing down it may only be Apple altering the software.

 

[Daisybell]

I'm a very elderly iMc

Still - methinks you may have started out with better software than me!

 

[Graham]

I have copied out the list of stakeholders for CFS/ME, although I guess that many of them are just on all teh stakeholder lists. I think I have highlighted all the ME patient groups in blue, but I'd be grateful if a couple of you would just check through it for me. Thanks in anticipation.

 

[Arnie Pye]

I'm curious about why Wendy Boutilier's name on the letter is a hyperlink to a non-existent Facebook page?

 

[Jenny TipsforME]

Is Science for ME enough of an ‘organisation’ to actually become a patient voice stakeholder? There’s going to be a NICE workshop next week, you might still be able to get a place.

 

[Liv aka Mrs Sowester]

Is Science for ME enough of an ‘organisation’ to actually become a patient voice stakeholder? There’s going to be a NICE workshop next week, you might still be able to get a place.

Yes, @Jonathan Edwards is our rep.

 

[Barry]

Yes, @Jonathan Edwards is our rep.

If we are a stakeholder shouldn't we be on the list?

 

[Liv aka Mrs Sowester]

If we are a stakeholder shouldn't we be on the list?

I assume the list hasn't been updated recently enough, but here is the thread where the stakeholder meeting is being discussed: https://www.s4me.info/threads/format-of-nice-stakeholder-meeting.1678/

 

[Binkie4]

If I'm not too late @Graham, please could you add my name, Gill Bigglestone.
Thanks for writing the letter and collating names.

 

[Sly Saint]

The CBT/GET view of ME is shown by the scientific evidence to be invalid (IOM report etc), therefore the present guidelines based on the discredited BPS model must be withdrawn now, no waiting until 2020, that is completely unacceptable.

The present guidelines urgently need to be removed and NICE needs to take action to ensure doctors/medics and the public are aware of this, that the present guidelines are scientific invalid and potentially dangerous.

This.
Any campaign in the offing anywhere to get this going?

 

[Andy]

Petition is now up - https://www.change.org/p/sir-andrew...ommittee-for-me-cfs-is-transparently-unbiased

https://www.coyneoftherealm.com/blo...concerning-the-guideline-committee-for-me-cfs - he just replicates the text of the petition.

 

[MeSci]

Petition is now up - https://www.change.org/p/sir-andrew...ommittee-for-me-cfs-is-transparently-unbiased

https://www.coyneoftherealm.com/blo...concerning-the-guideline-committee-for-me-cfs - he just replicates the text of the petition.

Done.

 

[Andy]

Thread created for the petition itself - https://www.s4me.info/threads/petit...ning-the-guideline-committee-for-me-cfs.1928/

 

[Arnie Pye]

I'm curious about why Wendy Boutilier's name on the letter is a hyperlink to a non-existent Facebook page?

@Graham I never got an answer to my earlier post.(Post #70 in this thread.) I notice that the link is still in the final version of the letter.