Dr David Tuller: NICE Draft Rejects GET, Lightning Process, and CBT-As-Cure

[livinglighter]

At best NICE has stopped doing harm with their treatments plan and that is it. That is progress but its also the bare minimum and it should have happened years ago.

When I say grateful, I understand the effort the doctors and everyone involved had to apply just to get CBT and GET removed. I assume the doctors wanting to keep it were producing all sorts of NHS clinical based research "evidence" to argue it's effectiveness. So while this is the bare minimum. I am thankful that no one else will be talked into this. All the kids that suffer at the hands of the therapists and parents threatened with having their kids removed, etc. It provides some light in the tunnel for those who find themselves extremely vulnerable.

If anyone wants to form plans for creating awareness in an impactful manner, I am happy to participate. The draft guidelines are a newsworthy event alongside LongCovid similarities . So perhaps pwME sharing their voice will add to the conversation about much more needing to be done.

 

[Skycloud]

Looks like I’ve mucked up the thread with my editing - sorry everyone. I have bad cognitive issues due to ME and got in a muddle. I won’t bother moving text to the other thread.

@Bronc I completely agree with your last post. I’m not sure if you misunderstood me? If you did let me be clear that I don‘t feel gratitude towards NICE. I’m grateful to those who have been fighting on the committee on our behalf, and who are continuing to do so. Most especially those who are patients.


In case anyone is not aware, the ME Association and Action for ME are looking for patient feedback:

https://www.actionforme.org.uk/research-and-campaigns/hot-topics/nice-guideline-review/
https://meassociation.org.uk/2020/1...ut-the-new-nice-clinical-guideline-on-me-cfs/

edit - removed redundant text

 

[Skycloud]

@Skycloud Thanks for putting things into perspective. Of course I am also truly grateful to all those involved in reforming the guidelines as well. I'm slightly nervous that ME/CFS will again be left in the dark. But as you said we do deserve treatments based on good quality, replicated research just like every other condition that NICE produces guidelines for. Does that mean raising further awareness?

Other people are better placed than me to provide balanced perspective, I was just sharing the little bit I’ve learnt about NICE. I worry about being left out in the dark too, I would like my life back!

in my opinion yes we need to raise further awareness, but I think that the most benefit will come from awareness in specific areas. The inadequacy of the guidelines could be a help in a back handed way. The lack of medical and health worker education, and biomedical research and treatments are so obvious, and analysis of BPS research made clear how bad it is. It’s harder to deny our need.

 

[livinglighter]

I want my life back! Is my unofficial cfs/me slogan.

I'm working my way through the feedback surveys now. I'll speak to both charities as well about the idea of media engagement.